An Introduction To Global Health Ethics

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An

Introduction to Global Health Ethics

The field of global health is expanding rapidly. An increasing number of trainees


are studying and working with marginalized populations, often within low- and
middle-income countries. Such endeavours are beset by ethical dilemmas:
mitigating power differentials, addressing cultural differences in how health and
illness are viewed, and obtaining individual and community consent in research.
This introductory textbook supports students to understand and work through
key areas of concern, assisting them in moving towards a more critical view of
global health practice.
Divided into two sections covering the theory and practice of global health
ethics, the text begins by looking at definitions of global health and the field's
historical context. It draws on anti-colonial perspectives and concepts,
developing social justice and solidarity as key principles to guide students. The
second part focuses on ethical challenges students may face in clinical
experiences or research. Topics such as working with indigenous communities,
the politics of global health governance, and the ethical challenges of advocacy
are explored using a case study approach.
An Introduction to Global Health Ethics includes recommended resources and
further readings, and is ideal for students from a range of disciplines – including
public health, medicine, nursing, law and development studies – who are
undertaking undergraduate and graduate courses in ethics or placements
overseas.

Andrew D. Pinto is a family physician, and Public Health and Preventive


Medicine specialist in the Department of Family and Community Medicine of St
Michael's Hospital in Toronto. He is also a research fellow at the Centre for
Research on Inner City Health in the Keenan Research Centre at the Li Ka Shing
Knowledge Institute.

Ross E.G. Upshur is former Director of the University of Toronto Joint Centre
for Bioethics, and a staff physician at Sunnybrook Health Sciences Centre. He is
the Canada Research Chair in Primary Care Research and, at the University of
Toronto, he is a Professor at the Department of Family and Community
Medicine and Dalla Lana School of Public Health, Adjunct Scientist at the
Institute of Clinical Evaluative Sciences, an affiliate of the Institute of the
History and Philosophy of Science and Technology, and a member of the Centre
for Environment.
To Kim, Olivia and Sara with great love for making all
things possible.
– Ross Upshur

To my parents, Barbara and Brian, for the values you taught


me, and to my wife, Malika, for helping me to live them.
– Andrew Pinto
An Introduction to
Global Health Ethics

Edited by
Andrew D. Pinto
Department of Family and Community Medicine, St. Michael's Hospital,
University of Toronto
Centre for Research on Inner City Health, Li Ka Shing Knowledge Institute, St.
Michael's Hospital
Ross E.G. Upshur
Department of Family and Community Medicine, Sunnybrook Health Sciences
Centre, University of Toronto
Dalla Lana School of Public Health, University of Toronto
Canada Research Chair in Primary Care Research
First published 2013
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN

Simultaneously published in the USA and Canada


by Routledge
711 Third Avenue, New York, NY 10017

Routledge is an imprint of the Taylor & Francis Group, an informa business

© 2013 selection and editorial material, Andrew D. Pinto and Ross E.G.
Upshur; individual chapters, the contributors

The right of the editors to be identified as the authors of the editorial


material, and of the authors for their individual chapters, has been asserted
in accordance with sections 77 and 78 of the Copyright, Designs and
Patents Act 1988.

All rights reserved. No part of this book may be reprinted or reproduced or


utilized in any form or by any electronic, mechanical, or other means, now
known or hereafter invented, including photocopying and recording, or in
any information storage or retrieval system, without permission in writing
from the publishers.

Trademark notice: Product or corporate names may be trademarks or


registered trademarks, and are used only for identification and explanation
without intent to infringe.

British Library Cataloguing in Publication Data


A catalogue record for this book is available from the British Library.

Library of Congress Cataloguing in Publication Data


An introduction to global health ethics / [edited by] Andrew D. Pinto and
Ross E.G. Upshur.
p.; cm.
Includes bibliographical references
I. Pinto, Andrew D. II. Upshur, Ross.
[DNLM: 1. World Health – ethics. 2. Healthcare Disparities – ethics. 3.
International Cooperation. 4. Public Health – ethics. WA 530.1]
174.2 – dc23
2012022269

ISBN: 978-0-415-67352-5 (hbk)


ISBN: 978-0-415-68183-4 (pbk)
ISBN: 978-0-203-08222-5 (ebk)

Typeset in Sabon
by Saxon Graphics Ltd, Derby
Contents

List of contributors
Foreword
James Orbinski

PART I: THEORY

1 The context of global health ethics


Andrew D. Pinto, Anne-Emanuelle Birn and Ross E.G. Upshur

A) Introduction
B) Historical roots of global health
C) Global health today
D) Political economy of health
E) Global health ethics and its values
F) Conclusion

2 Ethics and global health


Ross E.G. Upshur, Solomon Benatar and Andrew D. Pinto

A) Introduction
B) Ethical concepts and ethical reasoning
C) Ethical theory and applied ethics
D) Key dimensions of global health ethics
E) Social justice and global health
F) Solidarity and global health
G) Conclusion

3 Approaching global health as a learner


Malika Sharma and Kelly Anderson

A) Introduction
B) The global health learning cycle
C) Conclusion

4 Human rights discourse within global health ethics


Lisa Forman and Stephanie Nixon

A) Introduction
B) The right to health
C) Human rights and global health
D) How global health ethics advances human rights
E) How human rights advances global health ethics
F) Conclusion

5 Global health governance and ethics


Jerome Amir Singh

A) Introduction
B) Genesis of global health governance
C) World Health Organization
D) Zoonoses infection control governance
E) Pandemic management: infection control governance strategies
F) Ethical, human rights and social implications of public health containment
strategies
G) Confinement and social factors
H) Conclusion

6 Indigenous health and ethics: lessons for global health


Andrew D. Pinto and Janet Smylie

A) Introduction
B) The health of Indigenous people globally
C) Colonization and resistance
D) “Decolonizing methodologies”
E) Ethical principles from research involving Indigenous communities
F) Conclusion

PART II: PRACTICE

7 Ethics and clinical work in global health


Athanase Kiromera, Jane Philpott, Sarah Marsh and Adrienne K. Chan
A) Introduction
B) Discussion of Case Study 7.1
C) Discussion of Case Study 7.2
D) Discussion of Case Study 7.3
E) Discussion of Case Study 7.4
F) Conclusion

8 Ethical challenges in global health research


Ghaiath Hussein and Ross E.G. Upshur

A) Introduction
B) Historical background to the ethical oversight of research
C) Principles of research ethics
D) Contextual considerations in research in LMICs
E) A checklist for researchers
F) Conclusion

9 Ethical considerations of global health partnerships


Jill Murphy, Victor R. Neufeld, Demissie Habte, Abraham Aseffa, Kaosar
Afsana, Anant Kumar, Maria de Lourdes Larrea and Jennifer Hatfield

A) Introduction
B) Benefits of partnerships
C) Challenges of pa
D) Principles for conducting partnerships
E) Conclusion

10 Perspectives on global health from the South


Ana Sanchez and Victor A. López

A) Introduction
B) Guidelines for international collaborations
C) Recommendations

11 The political context of global health and advocacy


Nathan Ford

A) Introduction
B) A framework for global health advocacy
C) How students have supported global advocacy to increase access to
antiretroviral therapy
D) Conclusions

12 Teaching global health ethics


Donald C. Cole, Lori Hanson, Katherine D. Rouleau, Kevin Pottie and Neil
Arya

A) Why discuss the teaching of global health ethics?


B) How should we approach the teaching of global health ethics?
C) Where can we engage in global health ethics teaching?
D) When might we teach global health ethics?
E) Shaping institutions to support the learning of global health ethics
F) How do we evaluate trainee competency in global health ethics?
G) Future directions in global health ethics teaching

Afterword
Solomon Benatar

Index
Contributors

Kaosar Afsana
Health Programme, BRAC, Dhaka, Bangladesh
James P. Grant School of Public Health, BRAC University, Dhaka, Bangladesh

Kelly Anderson
Department of Family and Community Medicine, St. Michael's Hospital,
University of Toronto, Toronto, Canada

Neil Arya
Office of Global Health, Schulich School of Medicine & Dentistry, University of
Western Ontario, London, Canada
Environment and Resource Studies University of Waterloo, Waterloo, Canada
Department of Family Medicine, McMaster University, Hamilton, Canada

Abraham Aseffa
Armauer Hansen Research Institute, Addis Ababa, Ethiopia

Solomon Benatar
Bioethics Centre, Faculty of Health Sciences, University of Cape Town, Cape
Town, South Africa Joint Centre for Bioethics & Dalla Lana School of Public
Health, University of Toronto, Toronto, Canada

Anne-Emanuelle Birn
Social and Behavioural Health Sciences and Global Health Divisions, Dalla
Lana School of Public Health, University of Toronto, Toronto, Canada
Centre for Critical Development Studies, University of Toronto-Scarborough,
Toronto, Canada

Adrienne K. Chan
Division of Infectious Diseases and Institute of Health Policy, Management &
Evaluation, Department of Medicine, University of Toronto, Toronto, Canada
Dignitas International, Toronto, Canada
Global Health Division, Dalla Lana School of Public Health, University of
Toronto, Toronto, Canada

Donald C. Cole
Global Health Division, Dalla Lana School of Public Health, University of
Toronto, Toronto, Canada

Nathan Ford
Médecins Sans Frontières, Cape Town, South Africa
Centre for Infectious Disease Epidemiology and Research, University of Cape
Town, Cape Town, South Africa

Lisa Forman
Global Health Division, Dalla Lana School of Public Health, University of
Toronto, Toronto, Canada Munk School of Global Affairs, University of
Toronto, Toronto, Canada

Demissie Habte
Ethiopian Academy of Sciences, Addis Ababa, Ethiopia

Lori Hanson
Department of Community Health and Epidemiology, College of Medicine,
University of Saskatchewan, Saskatoon, Canada

Jennifer Hatfield
Global Health & International Partnerships, Department of Community Health
Sciences, O'Brien Centre for the Bachelor of Health Sciences, Faculty of
Medicine, University of Calgary, Canada

Ghaiath Hussein
Department of Medical Ethics, Faculty of Medicine, King Fahad Medical City,
Saudi Arabia

Athanase Kiromera
Department of Family and Community Medicine, University of Toronto,
Toronto, Canada

Anant Kumar
Xavier Institute of Social Service, Ranchi, India
Maria de Lourdes Larrea
Universidad Andina Simon Bolivar, Quito, Ecuador

Victor A. López
Trauma and Global Health Program, Universidad de San Carlos de Guatemala,
Guatemala City, Guatemala Centro Integral del INCAP para la Prevención de las
Enfermedades Crónicas, Guatemala City, Guatemala

Sarah Marsh
School of Nursing, University of Texas at Austin, Austin, United States of
America

Jill Murphy
Faculty of Health Sciences, Simon Fraser University, Vancouver, Canada

Victor R. Neufeld
Canadian Coalition for Global Health Research, Ottawa, Canada

Stephanie Nixon
Department of Physical Therapy, Faculty of Medicine, University of Toronto,
Toronto, Canada
Global Health Division, Dalla Lana School of Public Health, University of
Toronto, Toronto, Canada
Director, International Centre for Disability and Rehabilitation, University of
Toronto, Toronto, Canada

James Orbinski
Balsillie School of International Affairs, Wilfrid Laurier University, Waterloo,
Canada

Jane Philpott
Department of Family and Community Medicine, University of Toronto,
Toronto, Canada
Department of Family Medicine, Markham Stouffville Hospital, Markham,
Canada

Andrew D. Pinto
Department of Family and Community Medicine, St. Michael's Hospital,
Toronto, Canada
Centre for Research on Inner City Health, Keenan Research Centre, Li Ka Shing
Knowledge Institute,
St. Michael's Hospital, Toronto, Canada

Kevin Pottie
Centre for Global Health, Institute of Population Health and Bruyere Research
Institute, Departments of Family Medicine and Epidemiology and Community
Medicine, Faculty of Medicine, University of Ottawa, Ottawa, Canada

Katherine D. Rouleau
Global Health Program, Department of Family and Community Medicine,
University of Toronto, Toronto, Canada
Department of Family and Community Medicine, St. Michael's Hospital,
Toronto, Canada

Ana Sanchez
Department of Community Health Sciences, Faculty of Applied Health Sciences,
Brock University, St Catharines, Canada

Malika Sharma
Department of Infectious Diseases, Division of Medicine, University of Toronto,
Toronto, Canada

Jerome Amir Singh


Centre for the AIDS Programme of Research in South Africa, University of
KwaZulu-Natal, Durban, South Africa Dalla Lana School of Public Health, Joint
Centre for Bioethics, and Sandra Rotman Centre, University of Toronto,
Toronto, Canada

Janet K. Smylie
Centre for Research on Inner City Health, Keenan Research Centre, Li Ka Shing
Knowledge Institute, St. Michael's Hospital, Toronto, Canada
Department of Family and Community Medicine, St. Michael's Hospital,
Toronto, Canada Dalla Lana School of Public Health, University of Toronto,
Toronto, Canada

Ross E.G. Upshur


Department of Family and Community Medicine, Sunnybrook Health Sciences
Centre, Toronto, Canada Dalla Lana School of Public Health, University of
Toronto, Toronto, Canada Canada Research Chair in Primary Care Research
Foreword
James Orbinski

Global health in its broadest conceptualization connotes wellbeing in a state of


justice. If global health is to be something other than an ideal perpetually beyond
our grasp, it needs a framework rooted in fact, history, contemporary political
reality and morality.
The primary factors that shape the health of citizens are not medical
treatments or lifestyle changes, but rather the living conditions people
experience and inequities in the societal determinants of health (Rasanathan and
Krech 2011). A 2008 World Health Organization Commission concluded that
‘social injustice is killing people on a grand scale’ (WHO 2008: 6).
Addressing injustice and enhancing global health is a matter of practical
action. It requires careful thinking, initiative and a willingness to experiment
with new approaches. Most importantly, it requires that we think ethically and
then act ethically. Ethics is not morality, but is dependent on it. Ethics demands
that we are explicit about our moral frameworks and our choices, and that we
explicitly explore the consequences that arise from these.
The purpose of ethical decision-making is not to provide a singularly correct
answer or ‘the Truth’. No one set of fixed rules will suffice to guide ethical
choices, as most ethical issues cannot be pursued in a purely algorithmic way.
There is often an inherent dilemma in weighing competing principles. Ethics
allows us to initiate action with explicit moral reasoning and to evaluate
outcomes from both objective and moral perspectives in order to improve our
future choices and actions in the pursuit of global health.
This book is not about what perfect arrangements in global health may be. It is
about how to think about and act toward achieving this ideal. It lays out power
structures and traces their origin; it explores the dynamics of the challenges
posed by global health; it identifies the moral goods that are at issue and how to
approach their ethical consideration.
If the pursuit of global health is to avoid reinforcing and reproducing inequity
and injustice – through, for example, the negative effects of good intentions –
ethics must be central to reframing and reformulating our choices and actions.
This book offers a masterful introduction to the ethical pursuit of global health
and is a bold beginning to this necessary and good enterprise.

References
Rasanathan, K. and Krech, R. (2011) ‘Action on social determinations of health
is essential to tackle noncommunicable diseases’, Bulletin of the World Health
Organization, 89: 775-76. doi: 10.2471/BLT.11.094243
WHO (2008) Closing the Gap in a Generation: Health Equity through Action on
the Social Determinants of Health. Final Report of the Commission on the
Social Determinants of Health. Geneva: World Health Organization.
PART I
Theory
The context of global health
1
ethics
Andrew D. Pinto, Anne-Emanuelle Birn and Ross E.G.
Upshur

Objectives
To present a historical perspective on global health, using a political
economy framework
To discuss past and current definitions of global international health and
relate this discussion to ethics
To develop a rationale for global health ethics

A) Introduction
We live in a radically unequal world in terms of both health and its underlying
determinants. Even the most cursory review of the available data makes this
evident. On average, a person born in 2010 in Afghanistan, Chad or the Central
African Republic can expect to live to approximately 48 years, whereas the
average life expectancy is 80 years in the Republic of Korea, 82 in Iceland, and
83 in Japan (WHO 2011a). Globally, in 2009, approximately 8.1 million
children died before their fifth birthday, deaths occurring almost exclusively in
low- and middle-income countries (LMIC) (WHO 2011b). The vast majority of
these are preventable deaths due to diarrhea, pneumonia and malaria (Jones et al.
2003). It is estimated that in 2008, 358,000 women died in childbirth, with 99
per cent occurring in LMIC. This has remained consistent ‘year after year’ and
again, these deaths were/are almost entirely preventable through existing
knowledge, health services and interventions to improve living conditions
(Campbell et al. 2006).
Stark as these figures are, national averages hide within-country differences
that are even more striking. Evidence cited in the Final Report of the
Commission on the Social Determinants of Health (WHO 2008) demonstrates
that the health of individuals and communities is intricately tied to social factors.
These include income, class, education level, employment relations and
race/ethnicity (Public Health Agency of Canada 2004).To take just one
determinant, in every country, the poor fare worse than the wealthy. In Scotland,
there is a gap of over ten years in healthy life expectancy – years spent in good
health – between residents of the most deprived and least deprived
neighbourhoods (Wood et al. 2006). Similarly, the maternal mortality rate is
three to four times higher among the poor compared with the rich in Indonesia
(Graham et al. 2004), and in Peru infant mortality is almost five times higher in
the poorest quintile of the population compared with the wealthiest (Gwatkin et
al. 2007). Across the world, certain racial and ethnic groups fare worse than
others living in the same country. In an oft-cited example, African-American
men in Harlem, New York were found to be less likely to reach the age of 65
than the average man in Bangladesh (McCord and Freeman 1990). Indigenous
peoples, referring to communities that share a historic link with pre-colonial
societies, have lower life expectancies than their non-indigenous counterparts in
every country where this has been studied (see Chapter 6). For example,
Indigenous Australian men have a life expectancy at birth of 59 years, compared
with 77 years for all Australian men (Australian Government 2009). In Canada,
Aboriginal men live on average eight years less than the male population as a
whole (Anderson et al. 2006). Such disparities between rich and poor nations,
and between privileged elites and marginalized populations within each country,
are expected to worsen with the negative effects of climate change (Costello et
al. 2009) – which is likely to affect LMIC disproportionately – and by the fallout
of the 2008 global financial crisis (Catalano et al. 2011; Stuckler et al. 2011).
None of these realities is new or surprising to health professionals, academics
and policy-makers who are interested in global health. As never before, we have
available an abundance of knowledge about such deplorable health inequities, a
term referring to the differences in levels of health between groups in a society
that are unjust, unfair and avoidable (Whitehead 1992; Starfield 2006). Further,
tackling such health inequities has risen on the political agenda. In October
2011, representatives from 125 governments met at the World Conference on
Social Determinants of Health in Rio de Janeiro, Brazil. The text of the
conference's Political Declaration contains statements such as ‘we need to do
more to accelerate progress in addressing the unequal distribution of health
resources as well as conditions damaging to health at all levels’ (WHO 2011c:
2). Addressing social inequity is even entering the conversation at the 2012
World Economic Forum, where typically the focus is on economic growth and
competitiveness (WEF 2012).
Given the evidence that significant, remediable differences in health exist
globally, and that there is a stated goal to address them, what is being done?
Clearly not enough: inequities in health have persisted – and even increased –
despite enormous resources being channelled into reducing them, despite a rich
body of evidence on effective measures, and despite strongly worded statements
by international bodies that these efforts should be a top priority (WHO 2008).
This book aims to help you explore why this is the case and what can and
should be done. Changing the systems that result in unnecessary death and
suffering is a key goal of global health practitioners. Here we hope to move the
reader from an intuitive sense that something is wrong to a deeper understanding
of how power, access to resources, justice and fairness apply to health –
questions with which global health ethicists are wrestling in an ongoing manner.
This chapter begins by reflecting on what is meant by global health and how the
field and its precursors have evolved over time: before solutions can be proposed
to address inequities, it is essential to understand in what context they have
arisen. Recognizing that there is a multitude of ways to address a problem, we
then argue that ethical perspectives can contribute towards formulating
responses – in terms of both avoiding doing harm and actually improving global
health inequities. Finally, we highlight what the remaining chapters will cover as
an entrée to engaging in global health ethics.

B) Historical roots of global health


‘Global health’ has entered into widespread use relatively recently and has been
rapidly adopted, particularly in North America, as a field of study and practice.
Yet whether it is even a new or separate field remains controversial (Farmer et
al. 2009; Fried et al. 2010). Using the term ‘global health’ became common in
the early 1990s, when the end of the Cold War appeared to open up new
possibilities for health cooperation across countries to address problems of
shared concern (Kickbusch 2002; Birn 2011; Bozorgmehr 2010). Among
powerful players it has largely replaced ‘international health’, which in turn
displaced ‘tropical medicine’ or ‘colonial medicine’ as the dominant term to
capture the activities characterizing this field. Tracing the links between these
conceptualizations is important to understanding the values and theories that
underpin the field today.
Going back more than a millennium, outbreaks of plague periodically turned
health into a regional or even a global problem, but until the rise of the modern
state and a system of inter-state relationships, there was no organized mechanism
to focus worldwide attention on health. By the nineteenth century, a confluence
of developments – the most intense period of (European) conquest and
imperialism, the industrial revolution, the concomitant revolutions in transport
and global commerce, and the rise of modern medicine – forced sustained
attention to health as more than a local matter.
Starting with Spain and Portugal's first invasions of Africa, South Asia and the
Americas in the fifteenth century, the nations that established colonies in the so-
called tropics were concerned with protecting soldiers, settlers and merchants
from novel diseases that they were exposed to, both to secure their investments
and to maintain their hold on power (Berlinguer 1992). As imperial enterprises
became more permanent, colonial authorities also became concerned with
maintaining the productivity of, for example, miners and plantation workers.
Colonial powers set up medical offices and systems of regulation and
intervention across their possessions to control epidemics, stave off uprisings,
protect settler populations, and apply the disease-control tools of the day to
‘civilise’ subject populations (Birn et al. 2009).
Tropical medicine emerged in the nineteenth century, together with the new
fields of bacteriology, parasitology and helminthology, closely related to the
needs of colonialism (Arnold 1997). The development of this field was
underpinned by the formulation in the colonial imagination of the ‘tropics’ as an
exotic other (Said 1979) with purportedly distinct ecological characteristics.
European and colonial tropical medicine institutes mounted field trials and
measures focusing on epidemics and other health problems that threatened trade,
productivity and the viability of colonies (De Cock et al. 1995). Religious
missionary work and proselytizing was also closely related to the expansion of
colonies and provided moral justification, especially through the building of
hospitals and clinics and the provision of health services to indigenous
communities as a key part of winning over the local population. For example,
the Belgian regime in the Congo was extremely brutal, even as missionaries
from a variety of countries helped it establish one of the most extensive
networks of health clinics in any colonial territory. These efforts drew on
European conceptualizations of indigenous peoples as weak, of different races
being more or less suited for labor in the tropics, and of the racial superiority of
people of European stock (MacLeod and Lewis 1998).
During the second half of the nineteenth century – at the height of the
industrial revolution – the modern international health system was conceived,
motivated by a growing (if divisive) belief that disease could spread rapidly
through trade (e.g. the nineteenth century's repeated cholera pandemics) and the
movement of people (in terms of large-scale immigration and the annual Hajj).
Facilitated by a diplomatic context favouring state-state cooperation in the wake
of the 1815 Congress of Vienna, most European countries recognized that the
ongoing threat posed by epidemics to commerce and to their populations
demanded some form of international agreement to reform quarantine measures
(Harrison 2006). The first International Sanitary Conference was held in Paris in
1851, but inter-imperial rivalries resulted in little concrete action for several
decades, even as the opening of the Suez Canal in 1869 shortened trade routes
between Europe and East and South Asia (Bynum 1993). Finally, in 1907, the
Paris-based Office International d'Hygiène Publique, mandated with the
interchange of health information and the development and oversight of sanitary
treaties, was founded. A fully fledged international health organization was
founded after World War I – the League of Nations Health Organization
(LNHO), based in Geneva. Drawing on social medicine approaches, the LNHO's
ambitious agenda included not only infectious disease control, but also: vital and
health statistics standardization and dissemination; running expert commissions
charged with standardizing medications and vaccines; and studies of broad
public health issues such as housing, medical education, health systems and
services, economic depression, nutrition, human trafficking, rural hygiene,
chronic disease, and the social causes of infant mortality (Borowy 2009).
By this time, an International Sanitary Bureau for the Americas had already
been established in Washington, DC (in 1902, eventually becoming the Pan-
American Health Organization in 1958), technically the world's first multilateral
health organization. With the United States as the hemisphere's dominant power,
and bolstered by its invasion and occupation of Cuba (justified largely as a
means of controlling yellow fever), international sanitary agreement was easier
to reach, especially given yellow fever's ongoing threat to commerce throughout
the region. The renewal of the construction of the Panama Canal in 1904, key to
the USA's global trade aspirations, further stimulated intra-continental disease-
control efforts. Under French control since the 1880s, the project had stalled for
decades after some 20,000 French and Jamaican workers died from yellow fever
and malaria. A massive US military-led effort was marshalled to eliminate the
breeding grounds of insect vectors, but it ignored the endemic problems of local
populations such as tuberculosis and infant diarrhea. Once the Canal opened in
1914, there were renewed fears about – and redoubled efforts to control – the
spread of communicable diseases through international trade.
A key player in this period was the Rockefeller Foundation, which helped
popularize the term ‘international health’ through its influential International
Health Board and Division (Cueto 1994). Launched in 1913, the Foundation
pioneered cooperative public health efforts in almost 100 countries and colonies
across the world through disease campaigns, support for public health
institutionalization training, the establishment of schools of public health, and
funding for thousands of fellows to pursue graduate study in North America
(Birn 2006). This was the beginning of US-led international health
‘philanthropy’, foreshadowing and influencing the Milbank and Commonwealth
Funds, the Kellogg and Ford Foundations, and the more recent Bill and Melinda
Gates Foundation, which have substantially shaped the global health agenda.
International humanitarian NGOs, such as the International Committee of the
Red Cross (ICRC), established in 1863, also became active in this period. The
ICRC was an important purveyor of care to refugees, wounded combatants and
other war victims during World Wars I and II. It also played a significant role in
shaping ideas about ethical standards during wartime, especially through the
Geneva Conventions, although the ICRC has been critiqued for not having taken
a stance against war itself (Hutchison 1996).
‘International health’ thus began to replace tropical medicine in the early
twentieth century, related to the rise of internationalism and cooperation between
nations. Like tropical medicine, international health emerged from a worldview
where metropolitan centres – the imperial powers in Europe, North America and
Japan – extended significant influence to their peripheral colonies and former
colonies, patterns that were resisted in a variety of ways. Initiatives framed in
international health terms often served the political and commercial interests of
the dominant nations, but were also caught up in rivalries between major powers.
Despite the optimism with which the United Nations (UN) was established in the
wake of World War II – and the founding of the World Health Organization
(WHO) in 1948, its sister UN agencies, and a range of bilateral and non-
governmental organizations with a wide purview over international health (and
development) activities – the international health arena became embroiled in the
competition between the Cold War's superpowers. For almost half a century
(1946–91), the US-led Western bloc and the Soviet-led Eastern bloc competed
for allies and support among the ‘non-aligned’ countries of the Third World,
with health frequently utilized as a foreign policy pawn in this effort (Packard
1997). Notwithstanding these pressures, in 1978 a broad coalition of public
health actors across the world committed themselves to the goal of ‘Health for
All by the Year 2000’ at the largest international health conference ever held,
under the auspices of WHO and UNICEF in Alma-Ata in the former Soviet
Union (Brown et al. 2006).
The end of the Cold War in the early 1990s was a mixed time for international
health efforts. On one hand, a much hoped-for peace dividend gave greater
prominence to influential humanitarian NGOs, particularly Médecins Sans
Frontières (MSF, founded 1971), an organization that literally emphasized a
borderless world (see Chapter 11). However, the growing dominance of
neoliberalism, the globalization of trade, and the influence of the World Bank
and wealthy nations shaped international health priorities in a different direction.
WHO lost (control of) much of its funding, and it was compelled to return to
more traditional disease control efforts (Walt 1993), although the founding of
UNAIDS did portend more ethical and collective approaches to addressing
HIV/AIDS (see Chapters 4, 5 and 11). Further, after the attacks of September 11,
2001, health once again became part of the USA's and other Western nations’
security agenda. The spread of disease in LMIC was now framed as a potential
security threat to high-income countries (HIC) (Gow 2002).

C) Global health today


Global health is the current paradigm of health cooperation between nations and
multilateral organizations, particular to contemporary political, economic and
social arrangements, but also unavoidably retaining historical antecedents in
tropical and colonial medicine and international health (Macfarlane et al. 2008).
A single definition of global health remains elusive. For example, the US
Institute of Medicine defined it in 1997 as ‘health problems, issues, and concerns
that transcend national boundaries, may be influenced by circumstances or
experiences in other countries, and are best addressed by cooperative actions and
solutions’ (Institute of Medicine 1997: 11). This evolved into a 2009 definition
of ‘the goal of improving health for all people in all nations by promoting
wellness and eliminating avoidable disease, disabilities, and deaths…
improv[ing] health in low and middle-income countries’ (Institute of Medicine
2009: 1). As Birn et al. (2009) have noted, there is a clear relationship between
the popularization of ‘global health’ and the term ‘globalization’. For example,
academic health science centres in HIC often view global health as a way to
operationalize ‘global agendas’ (MacLean and MacLean 2009; Crane 2011) (see
Chapter 9). Globalization – the increasing interconnectedness between people,
but also the powerful influence of global neoliberalism – has had a profound
impact on the health of populations (Labonté et al. 2011). It has influenced
which interventions have come to dominate global health, shaped by the role of
market forces to address health needs (WHO 2012) and the emphasis on
delivering technical solutions to improve population health (Larson et al. 2011).
An influential definition that has been taken up widely is:

global health is an area for study, research, and practice that places a priority
on improving health and achieving equity in health for all people worldwide.
Global health emphasises transnational health issues, determinants, and
solutions; involves many disciplines within and beyond the health sciences
and promotes interdisciplinary collaboration; and is a synthesis of population
based prevention with individual-level clinical care.
(Koplan et al. 2009: 1995)

Other definitions, including ‘the health of marginalized populations, wherever


they exist’ (Pinto and Upshur 2009), have tied global health to human rights
more specifically (see Chapter 4) and speak more directly to upstream
determinants of health. Many of these definitions are silent about the underlying
causes of inequity, and do not speak to issues of power and resistance that are so
essential to how change takes place (Birn 2011). The root causes of health
inequities relate to the complex issue of how power and resources are distributed
globally, and how this (unfair) distribution is maintained by a range of political
and economic forces (WHO 2008). Definitions that ignore these matters are
particularly unhelpful when considering the ethics of global health.
As such, global health is a contested term used mostly by academics, health
practitioners and donors in HIC to describe activities that previously were
labelled tropical medicine or international health (Benatar and Upshur 2011).
Still, because the stated goals of global health typically include reducing health
inequities and achieving health for all – reflecting roots in public health and the
influence of the human rights agenda – and because it is now pervasive in North
America, we use the term ‘global health’ in this book. Efforts that are labelled
global health span a wide range of activities, from technical solutions at the
molecular level to population-level interventions, and cut across a variety of
academic disciplines and health professions. Just as was the case with tropical
medicine and international health, such interventions and activities are heavily
influenced by the social, political and economic philosophies of those who fund
and direct them. This also means that they have the potential to incorporate
ethical perspectives.
Global health today is a complex field of practice, involving thousands of
individuals who come from an enormous number of disciplines conducting work
with communities in both HIC and LMIC. Such activities occur through a
myriad of actors with multiple and often conflicting motivations, including
academic centres (typically in HIC, increasingly in partnership with institutions
in LMIC; see Chapter 9), NGOs, government agencies and community service
agencies. This work is supported by a large pool of funds (McCoy et al. 2009),
reflecting the strategic interests of high-income governments (Ollila 2005), as
well as trans-national corporations, philanthropic institutions and international
financial institutions such as the International Monetary Fund and World Bank.
Understanding the connections among academics, development workers,
humanitarian NGOs, funders and governments can prove difficult, particularly
when attempting to decipher who is responsible for what (see Chapter 5). Global
health involves an overlapping and shifting mix of research, development work,
humanitarian assistance, clinical work, business, public health, advocacy and
political engagement (see Chapter 11). As an area of scholarship, global health is
attracting more and more students who engage in research and practicum
placements – called electives or international service learning – and who
increasingly seek formal education to become global health practitioners (see
Chapters 3 and 12).

D) Political economy of health


Global health academics, professionals and educators concern themselves with a
multitude of interconnected problems. We propose a political economy of
health model (Navarro 1981) to begin to categorize these in a way that makes
sense. As Birn et al. (2009: 134) note, this approach ‘considers the political,
social, cultural, and economic contexts in which disease and illness arise and
examines the ways in which societal structures interact with the particular
conditions or factors that lead to good or ill health’.
At the individual level, let us imagine a common clinical scenario: an infant
in a LMIC is seen in a clinic run by a humanitarian NGO. She is diagnosed with
pneumonia and requires an antibiotic. This medication is readily available in
resource-rich settings but not where this child is living. This is seen as a problem
– perhaps because it is considered unjust or unfair that this child should die for
lack of a cheap, simple treatment – and the solution proposed is to deliver this
antibiotic to the child when she needs it. Such a seemingly singular problem of
access to care rapidly becomes several things to consider that continue to fall
within the scope of global health. Were the way in which the child was
examined, the diagnosis suggested, and the treatment recommended culturally
appropriate? Do they ‘translate’ for the caregivers? What about the ongoing care
of this child, such as dealing with an allergic reaction to the antibiotic? How will
follow-up be ensured in case the medication does not work? What about a
vaccine that could have prevented this bout of pneumonia? Is the infant
predisposed to such infections because she is HIV+, and could this have been
tested for, treated – or even better – averted through prevention of mother-to-
child transmission programmes?
Thinking about the family level, did the caregivers/family have to pay a user
fee to access the clinic? Did they have to travel a long way, take time off work
and pay for transport? How does this infant's risk of pneumonia relate to whether
or not she was breastfed? Or to the living conditions, income and education level
of her mother? Does the income level of the father/household relate to the
nutritional status of the child? What about the family's access to clean water and
sanitation? Do they have other children who are ill, what is the size of the
family, and is their home crowded? Does the gender of this infant influence the
way her family influences her access to care and resources? Do all children in
this family have the same access to education? Are there cultural or religious
issues involved in these matters?
At the community level, is pneumonia common? What other diseases are
prevalent, and why? What are the conditions of the neighbourhood and region in
which this family lives? Is there access to schools and sources of employment?
Why was there no access to government-supported health services locally? Is
there a pharmacy nearby where the antibiotic could be obtained? What are the
broader societal determinants of health (Birn 2009), including work conditions,
transport services, conditions of sanitation, housing and overcrowding? What
resources are available to pay local health providers to staff the clinic? Is this
community seen as important in the eyes of the national government, or is it
relatively neglected compared with other regions? Are there many global health
organizations in the community, what do they do, and what has been the past
experience with these or similar organizations? Will the presence of this NGO
clinic create conflict with local traditional healers?
At the national level, what is included in the social policy agenda, and what
measures exist to protect low-income populations? How are the most
marginalized reached? Who owns and controls national resources? How does the
government decide where to place health clinics and hospitals? How does it
decide on salaries for health workers, and how is this constrained by the national
budget? And by lenders such as the International Monetary Fund, World Bank,
regional development banks and commercial banks? What is the government
policy around essential medicines? And how did the national government come
to power? How is political power distributed (Navarro 1981)? Is there a system
of accountability to voters? Is corruption prevalent? What are the
class/race/gender structures of ownership and the labor force? Is health – and its
determinants – seen as a human right, and, importantly, is there enforceable
legislation to protect this right? Are there civil society organizations active in
this area?
At the international level, is this country an ally of wealthy and powerful
countries, including emerging middle-income countries? Can it influence trade
policies? What does it produce and what does it buy and sell on the international
market? How is it affected by the practices of certain HIC, such as the
recruitment of health professionals? What is the impact of international treaties
on the patenting of drugs, food subsidies, social rights, the movement of
refugees and addressing climate change? What is the role of advocacy groups in
creating change around some of these ‘upstream’ determinants? What is the role
of influential current global health actors, including the Global Fund for AIDS,
Tuberculosis and Malaria, the Gates Foundation and political bodies such as the
United Nations?

E) Global health ethics and its values


As is no doubt evident, the complexity of what seems at first to be a simple
problem can be overwhelming. There is a need to examine deeply each level and
understand how the levels are linked and intertwined. Ethical analysis can assist
us in this process. By ethics, we mean understanding how to evaluate different
courses of action – and their social consequences – in a given situation (see
Chapter 2). Ethics can serve as a lens to understand relationships and power
dynamics between different groups, and it can help us discern who benefits and
who bears the burdens. Ethics commences with self-reflection, and hence brings
to the surface our own motivations for actions, requiring us to look inward (as
individuals and collectively as societies) to identify the impetus and
consequences of these actions. Global health ethics is about both avoiding the
enormous risks of doing harm, and encouraging individuals to do what is best
given particular sets of circumstances and constraints. Ethics also requires
dialogue and deliberation with others who may or may not share the same
guiding motivations. Often, the fundamental principles and missions of
individuals and organizations may not be transparent, requiring a disciplined and
critical approach to make them more evident.
Most professions require some training in ethics and also have standards and
regulations around professional behaviour. Global health ethics does not replace
this, but builds on it. An additional focus on the ethics of global health is
necessary because the situations and problems encountered may be different
from the context in which a trainee or practitioner studies and works (Schwartz
et al. 2010). Resources in many communities – in both LMIC and HIC – are
limited in various ways. It is important to understand how material contexts
change a situation and place a higher priority on, for example, the need to limit
waste or to reach the most vulnerable people. There is often a great difference in
power and privilege between the provider and recipient of services, particularly
within a clinical context. In LMIC, the roles of different actors may be less well
defined and there may be less oversight or regulation than in HIC. There may
also be cultural differences and diversity in social norms and political beliefs. It
is precisely because global health – as noted above – has emerged from a history
of colonialism and imperialism that we must be mindful of how this legacy
influences relationships between communities and organizations (see Chapter 9).
Global health should thus be ‘inherently an ethical enterprise’ (DeCamp 2011:
92).
Global health ethics draws on classical clinical bioethics, public health ethics
and humanitarian ethics (see Chapters 3, 7 and 8) (Pinto and Upshur 2009). It
builds on existing codes of professional practice in the health arena, including
those issued by the International Council of Nurses (2006), the World Medical
Association (2006), the International Federation of Red Cross and Red Crescent
Societies (1994) and the Humanitarian Charter (Sphere Project) (2004). Less
work has been done within health professional education programs (Crump et al.
2010; DeCamp 2011), and this book aims to address the needs of those in
training or who are early in their career.

F) Conclusion
To summarize, global health is an emerging discipline that traces its origins,
norms and organizational structure to tropical and colonial medicine and
international health, making it highly problematic in that it continues to
reproduce the asymmetries of power extant in its predecessors. Notwithstanding
its enormous growth, global health remains a contested arena. Ethical analysis
creates a space for reflection and deliberation about issues such as social justice,
fairness, our professional duties and the duties of others. It is about asking why,
interrogating power relations and bringing a critical perspective to all such work.
Such analysis must be grounded in the lives of individuals and communities, lest
it become an abstract intellectual exercise that does not truly inform global
health action (Benatar and Upshur 2011). We believe that global health ethics
can assist you in becoming a better practitioner, academic and educator, and that
it is crucial to achieving the goal of collectively improving health for all.

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Ethics and global health
2 Ross E.G. Upshur, Solomon Benatar and Andrew D.
Pinto

Objectives
To introduce the range of ethical concepts and approaches to ethical
analysis required in global health work
To outline frameworks of principles that have been applied within
clinical medicine, public health and global health
To develop the concepts of solidarity and social justice as principles to
guide global health work

A) Introduction
In Chapter 1, the history and origins of global health were outlined.
Consideration of ethical issues at the level of global health requires first a clear
understanding of the early twenty-first-century context in which global health
challenges need to be addressed. Three fundamental issues call for particular
attention: resource disparities and power relationships; the role of
globalized/liberalized trade; and global media and information. These frame our
discussion on ethical principles and ethical reasoning.

Resource disparities and power relationships


The world is characterized by grotesquely wide disparities in health and in
access to the social, economic, political and health care channels that could be
used to reverse widening trends. Access to power and how power is used lies at
the heart of the problem of global health disparities. Power is usually thought of
as the hard power of the military or other forms of coercive force, and this is not
totally unrealistic. However, given the relationship between wealth – here
modestly defined as access to basic needs for human development and a
flourishing life – and health, the fact that a small proportion of people determine
how the global economy operates and who will benefit, and at whose expense,
makes it clear that economic power outstrips military power in determining the
global distribution and burden of health and disease. Although these two forms
of power are not unlinked, the long-known adverse role of the currently
structured global political economy has been either denied or obfuscated by
those in economic power who are covertly deeply implicated in causing human
poverty and misery on a massive scale (Benatar 2005). Additional evidence for
this is provided by the extent of human harm that has flowed from the recently
unfolding global economic crisis (Benatar et al. 2011b).
Consider for a moment the impact on Americans. Since the economic crisis
began in 2008, $5 trillion has been lost by Americans in pensions and savings.
Approximately $15 trillion was lost in the value of homes by 2010, with 10,000
homes entering foreclosure each day (13 million expected by 2014). In 2009, 1.4
million Americans filed for bankruptcy, an increase of 32 per cent from 2008.
Moreover, medical bankruptcies accounted for 60 per cent, and 75 per cent of
the latter were filed by people with health insurance. Personal debt amounting to
65 per cent of income in 1980 increased to 125 per cent of income by February
2009 (DeGraw 2010).
Over the past century, annual income distribution to the top 1 per cent of
people in the USA fell from 25 per cent in 1925 to 10 per cent in 1970 (a period
of economic and industrial growth and expansion of the middle class), then rose
back to 25 per cent by 2008 under the impact of the neoliberal policies that
geared economic growth to the benefit of the wealthy (Sachs 2011). Disparities
in wealth are thus almost as wide within the USA as they are across the globe,
and these are accompanied by wide disparities in health. Even in the USA, there
is food insecurity among children who suffer from preventable hunger, and the
fact that 9 million American children lack health insurance points to the potential
for preventing premature suffering and death. These examples, which highlight
the impact of fiscal trends on the value accorded to the health and lives of
children in the wealthiest and most privatized health market (the United States),
typify the global redistribution of resources during the past half century, with
disastrous effect on those who live below subsistence levels elsewhere in the
world (Benatar et al. 2011b).
For example, a combination of low economic growth, rising unemployment
and rising food prices in 2009 pushed up the number of chronically hungry
people globally from 850 million to over a billion. Between 2003 and 2006,
maize increased in price by more than 50 per cent of its average price, and by
2008 rice prices were 100 per cent higher than they were in 2003. Such
increases, together with the immediate effects of higher energy prices, have
pushed more than 100 million people back into poverty and ill health.

The role of globalized/liberalized trade


Since the later 1970s, the global political economy and trade rules have been
transformed by the ideas and practices associated with the ideology of
neoliberalism (Gill and Bakker 2011). Disciplinary neoliberalism, the dominant
discourse of political economy since 1970, serves libertarian ideas, institutions,
political forces and policies to deepen the power of capital and to shape patterns
of global economic and social development. The New Constitutionalism, which
is the political-juridical counterpart to disciplinary neoliberalism, creates treaties
and codifies new rights and freedoms for firms and investors. These are manifest
in laws, rules and regulations, of which intellectual property rights is one
example (Gill and Bakker 2011)
Globalization and global trade, driven by these polices, have been promoted
under the assumption that ‘globalization is good for the poor’. However, the
basis for this claim, and the implications of trade policies for social equity, have
been heavily criticized, most specifically in relation to regulations affecting food
and a range of health matters, including trade in pharmaceuticals, the availability
of vaccines in epidemics and the international recruitment of health
professionals.
Another result of such policies has been the exploitation of labor, nature and
social processes, with particularly adverse effects on health, welfare, education,
and other social support structures such as pensions. Health care, like food and
oil, is increasingly becoming a commodity distributed through the power of an
emerging new hybrid of public and private health care institutions that are
extensively governed by world market forces. The privatization of goods and of
services that serve the common good has impaired the ability to reproduce the
caring social institutions (health care, education and other public social services)
on which good societies depend in order for their citizens to have the best
opportunity to reach their human potential and to flourish. Pandering to the
endless entitlements of those at the top of the economic pyramid has been
undertaken at the cost of the health and wellbeing of the majority. As a
consequence, almost 50 per cent of the world's population lives on less than $3
per day and on about 3 per cent of annual global product.

Global media and information


The media, in an era of rapid communication, disseminate vast amounts of
information, with increasing and often underappreciated influence on how we
conceptualize the world around us, what we believe and how we behave. The
extent to which the media control how the public thinks and acts (as exemplified
by marketing strategies and the fear agenda actively promoted since 9/11,
allowing the acceptance of stringent new security processes that undermine hard-
won liberties) has deflected attention from garnering widespread support for the
available constructive means of improving the health and wellbeing of billions
of people worldwide in the twenty-first century.
All these influences on global health call for ethical arguments to effect
change.

B) Ethical concepts and ethical reasoning


You may be outraged about the existence of health inequities and the fact that it
seems all lives are not considered of equal value. In doing something about this,
you probably want to do the right thing. What is considered to be the right thing,
in many given contexts, is neither self-evident nor necessarily universally
shared. In fact, it is more than likely that there may be conflict regarding how
different individuals, communities and organizations conceptualize the ‘right’
thing.
Ethics, in the broadest sense, embraces the range of methods used to critically
analyze, interpret and evaluate the variety of ways in which humans interact with
each other. In the most general terms, ethics seeks to provide an account of how
humans, as agents, assign and evaluate the worth of persons, organizations, their
actions and their consequences. From a more philosophical perspective, ethics
engages in appraising the range of arguments offered to determine the rightness
or wrongness of actions and policies, and reflects upon the praiseworthiness or
blameworthiness of actors and organizations, and the justification for such
judgments. Many of the concepts informing such thinking emerge from culture
with origins in a variety of traditions, both religious and secular. Although there
is a great deal of diversity in how people think about moral issues, there are no
societies without a concept of what is right and wrong. Ethics is distinct from the
law in that it addresses issues related to interpersonal duties and obligations that
are not regulated or compelled by external authority.
Historically, ethical reflection and ethical reasoning have embraced a wide
range of accounts of how these activities take place. Within the Western
tradition, numerous attempts have been made to systematize approaches to ethics
in the form of major ethical theories. Some of these are based entirely on secular
considerations, others have their origin in theology or faith-based communities.
In this section we introduce some major themes in ethical analysis. We do so by
very briefly outlining the nature of ethical theory, and distinguishing ethical
frameworks from ethical theories. Some general considerations on defining and
understanding ethical reasoning are also developed. This is followed by a
general discussion on the major schools of thought that have animated ethical
thinking, and a description of some of the major ethical frameworks used in
health care. We then discuss some of the features that make global health ethics
distinct from clinical and public health ethics.
In an introductory text, it is impossible to discuss such a rich, complex and
varied literature in detail. While this book does not intend to replace the
education in bioethics that is a required training component of health
professionals and of other students considering work in global health, it is
recommended for use within such courses. It is our contention that ethical
reasoning skills, including an ability to identify and analyze the value issues that
may be latent and undisclosed in the many contexts relevant to global health, are
essential and fundamental skills for global health practitioners. There is no
substitute for engaging in reflection and dialogue, a skill that improves with
practice.

C) Ethical theory and applied ethics


It is important to recognize the distinction between ethical theories and applied
ethics. Ethical theories aspire to provide a comprehensive, consistent and
defensible normative account of moral activity. Historically, the field of ethical
theory has been the domain of philosophy.
An ethical theory must achieve several goals: it must set out to explain and
justify, in a unifying manner, a wide range of considerations including the nature
of morality, and the principles or concepts and criteria by which human actions
are evaluated. This often includes a systematic and nuanced account of the
positive reasons why a particular theory is more capable than rival theories of
providing accounts of moral issues. Hence the argumentation found in works of
moral theory is often dense, technical and exhaustive with respect to dealing
with potential counterarguments to the position articulated. It is important to
distinguish descriptive from normative accounts of ethics (see Box 2.1 ).
Box 2.1: Descriptive and normative ethics
Descriptive ethics relates to accounts of how humans actually behave in the
world. It has a strong empirical dimension as it derives from descriptions of
how moral values play out in determining what is right or wrong in various
communities. It is thus dependent on reliable empirical observations of how
humans assess the rightness and wrongness of their actions. In the field of
global health, observations come from academic disciplines such as
epidemiology, sociology, anthropology, law, political science and
psychology.
Normative ethics focuses on a different dimension of human activity.
Rather than describing what is actually done, normative ethics considers the
question of what we should (or ought to) do in order to bring about ‘ethical
states’ of affairs rationally.

Predominant ethical theories in the Western tradition

Universalist approaches
Schools of thought can be considered universalist when the theory argues that a
universal and objective criterion or test can be applied to human actions to
adjudicate its rightness or wrongness. The Western tradition has been influenced
and shaped by three dominant universalist approaches: deontological,
consequentialist and virtue based.

i) Deontological
Deontological approaches are typified by arguments that focus on the moral
worth of actions, that is, that certain acts are intrinsically right or wrong; and on
rational analysis of such acts. It is important to note that, according to this
approach, ethical acts are appraised largely independently of consciously
calculated potential consequences that follow from them. This is not to deny that
outcomes in general shape what we consider to be right and wrong actions.
The foremost account of a deontological approach is found in the work of the
philosopher Immanuel Kant. Kant's moral theory is based on the requirement
that moral values be stated as universal laws. The abstract and general
formulation of the law-like structure of moral statements is the categorical
imperative. The categorical imperative states that one should act only ‘on that
maxim which you can at the same time will to be a universal law’. These laws
are to command assent by all rational agents capable of acting freely upon them.
The requirements are universal in the sense that they do not depend on anything
in the empirical world for their justification. That is, the entire structure of laws
is established a priori.
Kantianism is influential in that it establishes important conditions for the
treatment of moral agents. They must be treated as ends in themselves and not as
means to an end. This notion is influential in doctrines such as human rights, and
informs standards for human subject protection in global health research. It is the
ethical theory most closely aligned with accounts of human dignity and inherent
worth.

ii) Consequentialist
Consequentialist theories view the rightness or wrongness of actions in terms of
the consequences that result from the action. The classical formulation of
consequentialism is utilitarianism, where the best action is that which creates the
greatest good for the greatest number. Classic utilitarianism is ‘hedonistic’ in
nature, in that it argues that happiness and pleasure are the consequences to be
maximized. There are many variations on consequentialist theories, and they are
prominent in modern health ethics. Consequentialist theories are associated with
economic analyses such as cost-benefit and cost-effectiveness analysis, and with
such tools as disability-adjusted life years (DALYs), quality-adjusted life years
(QALYs) and other outcome measures that are relied on in making public health
policies, as distinct from decisions about individual patients.

iii) Virtue based


Rather than focusing on acts or their consequences, virtue-based approaches
examine the qualities, characteristics and habitual actions of human agents. Thus
they focus on the appraisal of character in the context of action. Virtue theories
focus on such manifest qualities as courage, humility, caring and wisdom. In
more broad community applications, virtue theory discusses the qualities and
characteristics of communities that give rise to virtuous citizens.

Relativist and non-cognitivist approaches


These are accounts of ethics arguing that morality is not based on objective,
universal and rational considerations, and that it cannot be so based. There are
two principal schools of thought in this regard: relativism and non-cognitivism.

i) Relativism
Relativism holds that standards of determining the rightness and wrongness of
actions are related to and hold only for those who participate in a particular
culture and community. They admit to no overarching universal claim that all
humans should follow.

ii) Non-cognitivist
Non-cognitivist accounts hold that ethical statements have no truth-value
whatsoever, and are merely the expression of emotions and personal preferences.

Religion-based approaches
Religious ethics cannot be ignored in considerations of individual or population
health, as many communities in the world base their institutions and practices in
accord with religious principles. In each of the three predominantly monotheistic
religions, Islam, Judaism and Christianity, ethical appraisal consists of the
application of sacred texts and generations of commentary and reflection on the
ethical problem at issue. Casuistry is the term used to describe this ‘looking
back’ to precedents for guidance. Each of these major religions has several
variations of practice and interpretation of sacred texts (indicating significant
within-religion disagreement). In religious ethics, fidelity to the dictates of faith,
as indicated by the sacred texts, is of critical importance. There are many points
of agreement, but also significant areas of disagreement between these religions.
There are numerous other faiths, such as Hinduism and Buddhism, that influence
thinking and popular ideas relevant to health care. It is imperative for
practitioners to be aware of and respectful of religious practices and how certain
health activities may be interpreted in light of revealed religion. While
respecting individuals’ religious beliefs when they are choosing for themselves,
there is a need to be cautious that in the public realm some religious perspectives
are not privileged over others.

Applied ethics: the concept of ethical frameworks


There is considerable variation and complexity in how we can make sense of
distinguishing which human actions are ethical or moral. In order to facilitate the
application of complex theory to practice, the field of applied ethics has
developed approaches intended to guide practitioners.
There are a variety of ways of doing this. One way is through the creation and
application of frameworks. In applied ethics, it is recognized that certain theories
have attractive features in certain circumstances, but seem strained in application
to all cases that may be encountered. They should be viewed as resources that
aid in the understanding of ethical problems and in decision-making. In essence,
such theories provide a set of diverse perspectives on how best to understand an
ethical issue.
Frameworks have been proposed as a way of making this complex landscape
tractable, to aid in the analysis of ethical issues and to guide reflection and
decision-making. When there is reluctance to engage with the finer points of
moral theory, frameworks can be used as pragmatic tools to aid decision-
making. Frameworks can be very useful because they attempt to capture what is
relevant to decision-making in a particular area of practice. They help to
simplify and make explicit factors relevant to a decision. However, they can also
be problematic if they are applied blindly (Dawson 2010). It is important that the
framework is relevant to the particular area under discussion, as a framework
can yield a poor answer if it does not capture all the factors relevant for a
particular decision.
As global health is an immensely complex field, there is a need for a
multiplicity of perspectives to be understood and balanced. Understanding
ethical issues in global health requires inter-professional, trans-disciplinary and
transcultural understanding. Classical bioethics has explored many ethical issues
at the individual level. In most health care professional training, ethics is taught
in terms of the need to consider four key principles: autonomy, beneficence,
non-maleficence and justice. This classic formulation from the work of Thomas
Beauchamp and James Childress (2005) has been quite useful and influential in
ethics pedagogy, and still serves a very useful purpose. It attempts to reconcile
the two main strands of thought in the Western tradition: deontology and
consequentialism.
A recently evolving discourse on public health ethics provides some
additional principles and frameworks for thinking and arguing about public
health dilemmas, where there is a need to weigh and balance the rights of
individuals against the common good. This expanded discourse, like the feminist
approach, provides additional values for consideration and appropriate
frameworks with which to do so. Public health ethics, in many ways, provides a
grounding for global health ethics in that it addresses issues related to common
goods, and employs concepts that focus on collective responsibilities and
mutuality (Dawson and Verweij 2007; Nixon et al. 2008).
No one theory or framework will describe and analyze the same issue in the
same way. Hence familiarity, experience and practice are required. Frameworks
aim to assist in understanding the various dimensions involved in decision-
making and acting, but they will not supply all the answers, and individual
judgment is still required.

Ethical reasoning and argumentation: a suggested


approach
Ethical theories and ethical frameworks will direct practitioners to the
substantive issues informing an analysis of an ethical dilemma. Reasoning
should be approached systematically and in a fair and dispassionate manner.
One first consideration is fair explication of the various positions at issue.
This requires close reading and accurate knowledge of the relevant facts. It is
important to understand the distinction between factual claims and normative
claims (see Box 2.2 ). Then one must be able to assess the types of claims that
are being made and the type of argument that is being stated. This requires
sorting out the various factual and moral claims that are at issue. Box 2.3
provides a systematic approach to analyzing an ethical issue.

Box 2.2: Facts and values


Most philosophical accounts of ethics tend to make a sharp distinction
between facts (usually construed as statements from science or empirical
observations) and values (desirable but perhaps not realized states of affairs in
the life world). What is factual tends, for the most part, to reflect or contain
descriptions of states of affairs. Values, on the other hand, reflect normative
evaluations about what ought to be the case. One issue arising from this is the
gap between what is the case (descriptive facts) and what ought to be the case
(how things should change towards, or be, for a more ethical state of affairs).
Many have argued that it is impossible to derive an ‘ought’ from an ‘is’, that
is, a description of a state of affairs in no way entails a prescription about how
to change that state of affairs in the world. While the distinction between facts
and values (‘isness’ and ‘oughtness’) plays a significant role in the evolution
and history of moral philosophy, these tend to interpenetrate considerably,
particularly in the sphere of applied health ethics.

Box 2.3: A systematic approach to ethical reasoning*


1 What are the morally relevant facts in the case?
2 How/on what basis are they morally relevant? That is, what moral
principles, theories or concepts underlie your determination of what is
morally relevant? What are your underlying implicit and explicit values?
3 How would you prioritize the ethical issues inherent in the case – which
are the most morally relevant? As above, what underlies your decision
(principles, values, etc.)?
4 How would you deal with possible conflicting ethical considerations?
5 What bearing does moral psychology have? For example, can you discern
the intent that lies behind your moral reasoning?
6 Once you have worked through the above, have your views changed in
terms of what is morally relevant about the case?
7 How would you discuss/dialogue with the community involved about
your views on the case?
8 How does your role/organizational-specific authority (e.g. legal, medical,
professional) impact on the way in which you adjudicate the case? What
bearing might this have on how you approach the above, particularly
number 7?
9 Are there any particular global issues that arise in the analysis? If so, what
are the morally salient aspects of this global dimension? Are these issues
arising at the personal, health system, population and/or global levels?
*Adapted from Richardson (2007)

Argumentation consists of the ordering of reasons that lead to a well-justified


conclusion. Premises are statements that, taken together, demonstrate logical
connection, consistency and coherence. Much argumentation to which we are
exposed in everyday life is at a very low level of sophistication, and in fact is not
argumentation, but simple assertion. It often consists of simple declarations that
‘X is wrong’ or ‘X is unethical’ without supporting reasoning grounded on some
more basic principle. We must avoid simple assertion without supporting
reasons. Many ethical arguments concern the weighing and balancing of
seemingly conflicting principles or goods that we seek to attain. One common
strategy is simply to argue for that which one believes. This often results in not
taking counterarguments seriously or acknowledging uncertainty or limitations
in one's own perspective. Ideally, we should strive to take seriously all candidate
arguments, positive and negative, and seek out and rebut any potential objections
to the perspective we are taking. When we approach moral reasoning in this
manner, we are taking a fair and measured approach and enhancing reciprocal
awareness and respect for others.

Concepts of justice
Justice is a fundamental concept in ethics, and accounts of justice date back to
antiquity. In the most fundamental sense, justice is concerned with issues related
to equality and fairness. As Aristotle noted, justice requires that we treat equal
persons equally and unequal persons unequally. Theories of justice have their
basis in deontological, consequentialist, virtue theory and feminist traditions.
The concept of social justice is discussed in detail later in this chapter.
The most relevant considerations of justice in global health relate to various
theories of distributive justice. Distributive justice consists in the study of the
normative principles guiding how the benefits and burdens of economic activity
are best allocated. Health is included in the scope of these allocative decisions.
There is a range of competing theories of how best to allocate resources.
These theories are rooted in fundamental conceptions of how humans and
societies are ideally to be constituted (Lamont and Favor 2007). The most
commonly held perspectives will be very briefly sketched out. Most of these
theories look at justice from within an established legitimate nation state. There
is an immense volume of literature on this topic, and readers are advised to
consult the suggested reading list at the end of this chapter for further
exploration of the topic. Commonly held views include the following.

Egalitarianism: that every person is owed the same level of benefits,


and this is based on concepts of equality of persons.
Welfare: that the welfare of people is the paramount norm. All other
principles of distribution are secondary to the maximization of welfare.
Desert-based theories: that benefits and burdens should be distributed
on the basis of the actions of persons and societies that create the
benefits.
Libertarianism: that benefits and burdens should be distributed
according to the function of free markets.

The work of John Rawls has been particularly influential in modern theories of
justice (Rawls 1999). For Rawls, justice is fundamentally related to liberty, such
as the right to basic freedoms and equality of opportunity. Differences in terms
of these fundamental liberties, such as inequalities of opportunity, should exist
only insofar as they are of benefit to those with least advantage.
Much writing in global justice seeks to overcome some of the limitations of
the application of theories of justice to within nation states alone. However, this
is contentious and depends on whether there are good arguments for obligations
to others beyond state borders based on considerations of justice. Thomas Pogge
is one of the most influential theorists in this area. He argues that severe poverty
is the most pressing issue of global justice, and that as well as a positive
responsibility to alleviate poverty, there is a ‘negative responsibility to stop
imposing the existing global order and to prevent and mitigate the harms it
continually causes for the world's poorest populations’ (Pogge 2001: 22).

D) Key dimensions of global health ethics

What is global health ethics?


Hunter and Dawson (2011) provide an account of the ways in which global
health ethics can be regarded as a distinct field of inquiry. In essence, global
health ethics requires an account for why we should care about the fate and
existence of others, often quite remote from us. This is particularly challenging
in times of economic hardship, when it may seem self-evident to be concerned
with one's own locality.
Global health ethics can be understood in a geographic sense in that it
addresses issues that have broad spatial concern, such as climate change. This
view of global health ethics is, however, likely to be too limited when applied to
the types of ethical issues that require analysis. A content view of global health
ethics is one that addresses specific ethical issues such as research ethics and
global health equity. This account is limited by a lack of systematic coherence.
Hunter and Dawson (2011) argue that global health ethics should be regarded
as a substantive normative endeavour in its own right. They outline three
arguments in favour of this substantive account: the beneficence argument;
considerations of justice and harm; and cosmopolitanism.
The argument for beneficence regards global health inequalities as ‘morally
objectionable in and of themselves, because they hold that differences in
outcomes need to be morally justified and that there does not seem to be a
justification in this case’ (Hunter and Dawson 2011: 79). This is best expressed
in Peter Singer's claim that ‘If it is in our power to do or prevent something bad
from happening, without thereby sacrificing anything of comparable moral
importance, we ought, morally, to do it’ (Singer 1972 quoted in Hunter and
Dawson 2011: 80). Arguments from beneficence provide a ‘prima facie reason
to accept substantive global health ethics’ (Hunter and Dawson 2011: 80).
The argument from justice and harm is based on Thomas Pogge's work, which
argues that global obligations are rooted in negative duties not to harm others
and to make reparations when others have been harmed. As shown in Chapter 1,
the history of exploitation and domination by many nations has led to the current
state of global economic and health inequalities, many of which are perpetuated
by current global governance structures.
Cosmopolitanism indicates that we are citizens of a globalized world, and
further argues that moral considerations are not based solely on the prerogatives
of membership in a particular nation state, culture or ethnic group.
Cosmopolitanism requires us to have a global frame of mind when addressing
issues in global health.

Frameworks in global health


As noted, frameworks are limited in what they can offer – providing only a way
to view an issue or a problem. However, they may assist students and
practitioners to understand the morality of global health, the ‘norms about right
and wrong human conduct’ in this value-laden field. Values evolve over time
and in relation to their contexts and thus we should ask, what values should
guide our work at this moment in global health?
Benatar et al. (2011a) have outlined a framework that argues for global health
ethics as a rationale for mutual caring. They identify seven values required as a
basis for global health ethics:

respect for all human life


human rights, responsibilities (duties) and needs – broadly considered
equity
freedom (freedom from ‘want’ as well as freedom ‘to do’)
democracy (in a participatory sense)
environmental ethics
solidarity.

They argue that none of these principles can stand alone to provide an
overarching account of the values of global health ethics, and that solidarity is
the most important value of all.

They also propose a framework for transformational approaches:

developing a global state of mind


promoting long-term self-interest
striking a balance between optimism and pessimism
developing capacity (to be independent)
achieving widespread access to public goods.

Putting these transformational approaches into practice requires systematic


reflection and engagement with communities locally and globally. Chapter 4 on
human rights and Chapter 11 on advocacy explore how these transformational
approaches can take place.
In the remainder of this chapter, we build upon this framework and one that
we have proposed previously: humility, introspection, social justice and
solidarity (Pinto and Upshur 2009), adding depth and broadening its
applicability. Humility and introspection are addressed in Chapter 3. We will
place particular focus on social justice and solidarity.

E) Social justice and global health


Social justice has been cited frequently as a core value that underpins global
health. It is named in the strategic plans of academic centres of global health, in
the vision statements of non-governmental organizations, and in the policy
papers of key bodies such as the World Health Organization (WHO). This can be
traced to a long history of identifying social justice as central to public health
(Beauchamp 1976), and even as the foundational moral justification for
interventions at the population level (Powers and Faden 2006).
Yet diverse definitions exist about what social justice is and how we can
achieve it (Braveman 2006). A recent WHO discussion paper focuses on looking
at how societies are organized, and on social justice as promoting the ‘common
good’ to which all in the society are expected to contribute (WHO 2011).
Further, promoting social justice is to uphold basic human rights and equitable
access to resources. Similarly, Krieger has defined social justice – particularly
within a research context – as about understanding who benefits and who is
harmed by certain policies or decisions (Krieger 2001). Many others reinforce
the concept that social justice is about ensuring a minimum standard of living,
redistributing societal resources and achieving an egalitarian society. Public
health's ‘dream’ of a society without the current unequal distribution of health
and its determinants – health inequities – is therefore closely tied to the aims of
social justice (Beauchamp 1976).
To understand how this applies to global health, we focus on three interrelated
areas: the drive to reduce health inequities; distributional justice; and the health
of marginalized populations (Bayoumi and Guta 2012).
Reducing health inequities – unjust and unfair differences in health outcomes
between groups that are linked to the rules that govern society (Dahlgren and
Whitehead 2007) – is central to the mandate of global health (see Chapter 1).
Identifying such differences between communities requires forethought when
designing epidemiological surveys and posing research questions; when
considering how to analyze the data collected; and when disseminating the
results (see Chapter 8). However, describing inequities is not sufficient to
achieve social justice. Work to reduce inequities requires innovative solutions
that address root causes in the social determinants of health (Muntaner et al.
2009).
Social justice as applied to global health is also concerned with distributional
justice, meaning identifying and rectifying differences in who benefits from
global resources. Are those who have equal need receiving equal treatment
(horizontal equity)? And are those with a great need for resources receiving
more than those with lesser needs (vertical equity)? Within social justice, we
look beyond the classic interpretation of justice in the allocation of healthcare
services at the individual level to the distribution of wealth, opportunities for
education and employment, and access to healthy environments at the
community, country and international levels. Often, such calls for distributional
justice are tied to the concept of human rights, or claims that citizens can make
on state powers (see Chapter 4). Concrete proposals for redistributing resources
at the global level have included novel taxes on financial transactions (e.g. Tobin
tax), carbon taxes, and exemptions to trade regulations (e.g. TRIPS exemptions).
Calls for alternatives to global neoliberalism, which exemplifies market justice
rather than social justice, have been built on a recognition that the growing gap
between the rich and the poor is directly related to our current economic and
political system (Benatar et al. 2011b; Labonté and Schrecker 2011).
Many global health commentators have called for a focus on the most
marginalized – those who exist at the metaphorical margins of our society. As
Farmer notes, global health should be based on a preferential option for the most
disadvantaged (Farmer 2003). This is a third part of unpacking social justice, as
the marginalization of groups and communities occurs due to discrimination,
racism, and the continuation of historical injustices and unfair policies that
benefit some at the expense of others. This has encouraged some to use equity
lenses or health equity impact assessment to draw attention to how interventions
can sometimes worsen health differences between groups. For example, when a
health promotion campaign leads to improved uptake of a positive behavior
amongst the better-educated, wealthier segment of a population.
Western medicine – embedded within its historical and economic context –
has often been reluctant to engage in such issues as are deemed ‘too political’.
Critical examination of society, understanding overt and covert power relations,
and identifying means to reduce inequities are underdeveloped, with few
exceptions (Waitzkin et al. 2001). A learned helplessness around social justice
sets in, particularly if a clinician is trained to see herself as working in isolation
from others. We contend that social justice is a societal-level challenge and
requires multiple and related social movements (see Box 2.4 ). Political
problems call for political solutions, not technical solutions (Bayoumi and Guta
2012). Throughout, community consultation must be taken seriously, with action
being directed at creating solutions that will actually benefit the most
marginalized.

Box 2.4: Social movements


Social movements are distinct social processes where actors engage in
collective action, and are characterized by involvement in conflictual
relations with clearly identified opponents, dense informal networks, and a
shared and distinctive collective identity (Porta and Diani 2006). Social
movements relate to the central functions of public health, particularly that
of promoting healthy communities. When organized around perceived
threats to health, they can play a crucial role as advocates for change
(Nathanson 1999).
Social movements emerge from the intersection of the personal, the
collective and the historical. They are impacted by societal norms and
attitudes, political opposition and the media, and do not emerge fully
formed. Often, many small groups federate around a core idea to achieve
collective action around a common mission. Ultimately, they are composed
of people who become activated, who get politicized and in turn policitize
others (Eyerman 1989).
Social movements develop out of certain contexts, typically a mix of four
dimensions:

changes in basic conditions of life that produce discontent


change in the beliefs and values used to respond to life circumstances
change in the capacity to act collectively
change in the opportunity for successful action (e.g. weakness of the
opposition, support from powerful allies, success of other social
movements) (Oberschall 1993).

There is a long history of health social movements, defined as ‘collective


challenges to medical policy, public health policy and politics, belief
systems, research and practice which include an array of formal and informal
organisations, supporters, networks of cooperation and media’ (Brown et al.
2004: 52). Much of the history of modern public health was intimately tied
to social movements, particularly struggles around the social determinants of
health (Krieger and Birn 1998). The theory and values of health promotion
emphasize the importance of community mobilization and action (e.g. from
the Ottawa Charter: ‘At the heart of this process is the empowerment of
communities – their ownership and control of their own endeavours and
destinies. Community development draws on existing human and material
resources in the community to enhance self-help and social support, and to
develop flexible systems for strengthening public participation in and
direction of health matters’) (WHO 1986). Health social movements make
an impact by producing changes in the health and public health system, by
stimulating change in science and the selection of certain hypotheses to test,
and by changing institutions that shape health, including funding
organizations and policy-makers (Brown et al. 2004).
An exemplar of a global health social movement has been the struggle to
achieve universal access to HIV/AIDS medications. In high-income
countries, the demand for treatment was built on the growing gay rights
social movement, the community that was hardest hit by the unfolding
epidemic. In low-income countries, particularly sub-Saharan Africa, people
living with HIV/AIDS and allies used legal mechanisms such as court
challenges around the right to health to oppose patent restrictions on
medications. In concert with a broad, global social movement that targeted
pharmaceutical companies, these efforts provoked governments to take
action (Forman 2008). Of note, the failure to fully link these two social
movements has resulted in the current disparity in access that we see
between North and South (see Chapter 4).

F) Solidarity and global health


A second powerful value to bring to global health work is solidarity, which we
posit begins within the practice of humility, reflexivity and introspection –
situating oneself in the world (see Chapter 3). It is intimately related to the
operationalization of social justice. Solidarity is a sociological term first brought
into academic usage in 1893 by Durkheim, who distinguished mechanical
solidarity from organic solidarity. Mechanical solidarity existed when people
related to one another based on similarities, such as their common religion, tribe
or ethnicity. This similar identity produced a ‘collective consciousness’ and
people were motivated to work together towards a common goal: the benefit of
the group. In more modern societies, people relate to one another based on the
division of labor, and hence their differences. Organic solidarity is developed
through mutual interdependence and a reliance on others, with an emphasis on
the individual (Durkheim 1984).
This history is important, as Durkheim uses ‘solidarity’ in an overall analysis
of society from a political economy perspective, focusing on power relations and
the relationship of power to resources and institutions. The term retained its
political connotations during the twentieth century, and was famously used as
the name of the Polish union that brought about democratic change in the 1980s.
Pope John Paul II, a strong supporter of the anti-Communist movement in
Poland, used the term in his encyclical of 1987, Sollicitudo Rei Socialis. He
called for a realization of the Christian duty of solidarity, developing the idea as
embracing a sense of universality, interdependence, and that ‘people are
realizing that they are linked together by a common destiny, which is to be
constructed together’ (Ioannes Paulus 1987). Solidarity continues to be the name
of several trade unions in Europe and North America, and the title of many labor
publications. We define solidarity here as relationships arising from common
responsibilities and interests, as between members of a group or between people,
enacted by individuals as they align their goals and values with those of the
community in which they are working. Such relationships allow approaches to
be built that permit us to relate authentically and for mutual benefit across
distances.
Solidarity has been cited as key to addressing common threats, such as
pandemics and climate change (Brody and Avery 2009). It is also a value to
guide public health programs to reach marginalized communities (Ruger 2009).
However, solidarity is perhaps most relevant to global health as an alternative to
traditional, charity-based approaches. As Galeano wrote: ‘Unlike solidarity,
which is horizontal and takes place between equals, charity is top-down,
humiliating those who receive it and never challenging the implicit power
relations’ (Galeano 1998). Charity, or ‘helping’, leads to the disempowerment of
community leaders, systems and infrastructure, the degradation of autonomy and
a loss of self-determination, and increased community vulnerability to external
exploitation. There is increasing concern that external influence and pressure
within communities receiving aid programs in the name of helping may be left
worse off than prior to a helping intervention (Yamin 2011).
Solidarity exists when citizens of the community are mobilized, when
capacity building of local organizations and strengthened links within civil
society occurs, and when attempts are made to bridge power imbalances between
the wealthy and the poor. It is an active and ongoing process. Barriers to
solidarity include having conflicting views of health and its determinants, and
not recognizing and focusing on power and resource differentials. Facilitators of
solidarity include developing and maintaining deep, honest relationships and
open, purposeful communication, and being explicit about who bears the
benefits and who bears the burden of any global health initiative.
What would a partnership based in solidarity look like? Ideally, this
partnership would be crafted from building blocks of equality and attempts at
mutual understanding. In a solidarity approach, as individual change-makers we
must clarify our motivations and interrogate power relationships within the
relationships we form. The goal of such a partnership would lead to positive,
lasting change coming from inside a community. Ideally, this would be a
pioneering, creative experience. This partnership would provide a container
where members of a community could feel socially safe to make authentic,
thoughtful contributions to a community problem.
A relationship based in solidarity, where two people – perhaps from different
backgrounds, different communities – are working for a common goal, would
encourage them both to be innovative and creative in approaches to problems. It
would create the right environment for the right conversations, where the right
questions are asked. It would provide a space where each party could bring their
unique skills and contributions to the table for them to be used to serve the team
in an environment of respect.
Solidarity is put into action in global health through various means.
Humanitarian medical organizations such as Doctors Without Borders employ
witnessing (témoignage) as a means of expressing solidarity with individuals and
populations whose health has been put at risk owing to war, civil strife or natural
and human-made disasters. Building meaningful partnerships and collaborations
with communities is also an effective means of bringing solidarity from an
abstract principle to a lived engagement (see Chapter 9).

G) Conclusion
Certainly, global health ethics is in its infancy. Medical ethics has evolved since
the 1970s and transformed the relationship between physicians and patients
through a focus on individuals. The emergence of new infectious diseases, and
the challenges of setting priorities in the face of escalating demands and limited
resources, have stimulated a renewed discourse on public health ethics in which
considerations of the common good require greater attention and justification. In
the face of a ‘complex organic crisis’ characterized by multiple overlapping
crises that threaten the health of all globally, there is now a need for yet another
ambitious discourse on global health ethics. Whether or not we consider this to
be intellectually viable, the need to narrow wide and widening injustices in
health cannot be ignored (Hunter and Dawson 2011). We have attempted to
show here some of the directions in which such thinking needs to advance.
While it can be objected that global health ethics is yet another example of
domination from the North, we contend that there has been increasing evidence
of perspectives from low- and middle-income countries taking similar critical
stances (see Chapter 10). Much more needs to be done to advance a global
dialogue, particularly efforts to minimize obstacles to the dissemination of
views. Some may feel that discussions about ethics do not translate into practical
action to improve health. We argue that any effort within global health rests on
some form of ethical commitment, and that these commitments are often tacit
and under-conceptualized. Attention to the ethical dimensions of interventions
holds the possibility of altering them in fundamental ways. Finally, we have
argued that global health ethics entails more than merely attending to issues in
distributive justice. As noted above, looking towards the transformational
capacity of ethics may help bring about a global state of mind that can lead to
more equitable health outcomes.

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Further resources
Books
Benatar, S.R. and Brock, G. (eds) (2011) Global Health and Global Health
Ethics. Cambridge: Cambridge University Press.
Singer, P.A. and Viens, A. (eds) (2008) The Cambridge Book of Bioethics.
Cambridge: Cambridge University Press.

Declarations and codes of ethics


UNESCO Universal Declaration on Bioethics and Human Rights:
www.unesco.org/new/en/social-and-human-sciences/themes/bioethics/bioethics-
and-human-rights

World Medical Association International Code of Medical Ethics:


www.wma.net/en/30publications/10policies/c8

International Council of Nurses, Code of Ethics for Nurses:


www.icn.ch/about-icn/code-of-ethics-for-nurses
Approaching global health as a
3
learner
Malika Sharma and Kelly Anderson

Objectives
To articulate questions that bind us together as global health learners
To identify shared elements in the cycle of global health education
To encourage introspection and humility in global health learning

Case study 3.1

A family medicine residency in an inner-city setting

Ram recently graduated from medical school in a high-income country


(HIC). Beforehand, he spent two years working in northern India with
community health workers. About to start a residency in family
medicine, he wonders how to reconcile his previous experiences with a
medical career that incorporates global health. Ram's medical training
and undergraduate degree in development studies have influenced his
understanding of global health. He sees himself traveling to a low-
income country and working with local nongovernmental organizations,
both practicing medicine and working in program development and
evaluation. He starts a family medicine residency in an inner-city setting
and finds that most of his patients are on social assistance and many are
dealing with chronic pain, addictions or mental health issues. Although
he struggles with ways to make a meaningful impact, he enjoys his work
and sees a connection between what he is doing and the ideas and
principles of global health.
Case study 3.2
An internship at an HIV service organization in Rwanda

Mili recently completed a Master's in Public Health in a HIC. She has an


interest in community-based research and works on a study being carried
out locally with recent immigrants and refugees on barriers to care. She
finds meaning in this work and wonders if this is an example of global
health. Her interests lead her to consider working in Sub-Saharan Africa,
and ultimately she accepts a four-month funded internship working at an
HIV service organization in Rwanda. Upon arrival, she has difficulty
communicating in French with her colleagues and learns little of the local
language. Throughout her time there, she finds herself socializing mostly
with other expatriates. She begins work on several initiatives, but they do
not progress beyond the proposal stage. Upon her return home, she
wonders what she should have done differently, and begins to reflect on
what her motivations were for going in the first place.

A) Introduction
What are the enduring solutions to creating healthy and resilient communities
(Wheatley and Frieze 2011)? Those asking this question are global health
learners. They are students, trainees, activists, artists, academics, practitioners,
researchers, teachers, policy-makers and politicians. Some are new learners with
varying degrees of interest; others are already experts in their field. Yet all ask
questions such as: Where do we fit within global health? How can the right to
health be achieved for all? What obstacles lie in the way? How do we ensure our
work reflects solidarity and not charity (see Chapter 2)?
This chapter explores these questions and examines how learners go about
finding answers. This process is shaped by an individual's context, motivations
and knowledge, all learners have similar questions and experiences. To
understand the global health learning cycle, we outline four common steps
(Figure 3.1), similar to the model described by Arnold et al. (1991) and
discussed elsewhere (see Chapter 12).
Step 1 is about orientation. Learners start to ask themselves and others
fundamental questions, and are shaped by the answers they find. Step 2 is the
visceral experience, where the learner is put into a global health setting and is
confronted by logistical, moral and ethical questions. Step 3 involves
introspection and honest self-reflection about one's motivations, power and
privilege and the limits of individual efforts. Step 4 entails relearning global
health, where learners begin to appreciate the dynamic nature of global health.
Humility is the hallmark of this stage. A clearer sense of how to engage in global
health as a career is developed through this cycle.

Figure 3.1 The global health learning cycle

B) The global health learning cycle

Step 1: Orientation
Learners begin the cycle through hearing about ‘global health’ and becoming
interested in learning more. What is global health (see Chapter 1)? How is it
different from public health, international health or tropical medicine? Where
does global health take place? Who practices global health? Who are leaders in
this field and what do they do? Is engaging in research, education or community-
based field work all forms of global health?
The array of ideas and concepts that fall under the umbrella of global health
can be daunting, but common themes of health equity, human rights and both
individual and population-level interventions emerge (Koplan et al. 2009).
Today, most learners accept that global health is not simply about working in
low- and middle-income countries (LMIC), but can involve working in high-
income countries (HIC) with indigenous communities, the homeless in urban
settings and those without legal status. Indeed, a learner's mentors and personal
learning experiences will continue to reinforce the link between marginalization
and global health (Jarvis-Selinger et al. 2008).
Finally, learners in HIC will begin to contend with the problematic history of
global health (see Chapter 1) and what this means today in terms of an ongoing
connection to foreign policy and ‘corporate colonialism’ (Anonymous 2004). As
learners grow in their political and historical understanding of global health, they
may begin to question whether global health initiatives can lead to deepening
inequalities and further exploitation (Benatar 1998). Unfortunately, many may
ignore such thoughts in order to justify the experiences they want to have.

Step 2: The visceral experience


A common assumption of the global health learner is that she/he must go
‘abroad’ to gain experience. Learners often embark on international electives,
service learning or volunteer positions, bringing them face-to-face with the
issues they have only so far read or heard about. Most often these experiences
occur in LMIC. In 2009, 43.2 per cent of graduating American medical students
had participated in an international elective during their undergraduate medical
training (AAMC 2010).
There are well-documented educational benefits for learners pursuing
international experiences in low-resource areas: a positive influence on
diagnostic skills, positive attitudinal changes, increased knowledge of tropical
diseases, and increased consideration of career choices within primary care and
underserved populations (Thompson et al. 2003; Dowell and Merrylees 2009).
However, the risks of global health electives are less frequently considered. Can
unprepared and inexperienced trainees face ethical challenges and cause harm?
Are there safety risks to themselves and to the communities in which they study
(Pinto and Upshur 2009)?
Bishop and Litch (2000) highlight the risk of medical tourism, defined as
‘travel to a developing region with a brief opportunity to practice medicine on
local community members’ (Bishop and Litch 2000: 1017). They ask: ‘If as a
doctor you cannot resist the lure of medical tourism and insist on the casual or
opportunistic treating of local residents, consider whether you are treating the
patient for your own good or for theirs, and whether your actions may actually
do more harm than good’ (Bishop and Litch 2000: 1017). Medical tourism can
undermine existing health care structures and cause unexpected harm, and this is
true for all health professionals. Many learners find themselves in clinical
situations with little supervision, making decisions that they are inadequately
qualified to make. Shah and Wu (2008) describe an elective student's realization
that he may have sent a child home with a life-threatening condition because of
his junior level of training. This same trainee described stories of his colleagues
performing unsupervised procedures far beyond their level of expertise while on
international electives. Many international experiences involve trainees from
resource-rich countries traveling to countries and institutions in the global South,
with no remuneration to the host institution. These students may also take
precious teaching time from local trainees. Other risks for learners who are ill-
prepared include culture shock, missed learning opportunities, inappropriate
levels of responsibility and a lack of cultural sensitivity, which could potentially
cause harm in the host community (Shah and Wu 2008).
Unfortunately, most students are ill-prepared for these experiences. In a 2005-
06 survey of Canadian medical schools, almost half did not provide adequate
oversight or supervision to students on elective (Izadnegahdar et al. 2008). There
remains a relative paucity of pre-departure training, which is variable across
organizations (Anderson et al. 2012). This is all the more concerning as trainees
are participating in these experiences earlier and earlier in their training (Shah
and Wu 2008).
The desire for a visceral experience leads to another discomforting question:
is there a desire to intervene in the lives of others to make them ‘better’? If so,
who has taught us this need, and on what assumptions is this based? Global
health learners with an urge to change the systems and cultures they encounter,
without a full understanding of context, culture and history, are a risk to the
communities they are visiting. Their enthusiasm, although rooted in good
intention, is often missing a critical understanding of historical and cultural
norms, as well as the inherent strengths and belief systems of a community.
Anthropologist Wade Davis notes about non-Western communities ‘these
peoples are not failed attempts at being modern, quaint and colourful, destined to
fade away by natural law…these are dynamic living peoples being driven out of
existence by identifiable forces’ (Davis 2009: 167). Are visiting learners a small
part of these forces? Can hands-on global health experiences teach us to learn
from the communities we visit instead of trying to help while imposing Northern
values and expectations? Illich (1968) declares ‘If you insist on working with the
poor, if this is your vocation, then at least work among the poor who can tell you
to go to hell.’
Alternatives to an international experience do exist. Local communities may
introduce the learner to questions of power, politics and social determinants of
health, without some of the risks described. We may be more linguistically and
culturally prepared to start our hands-on global health learning at home, and
more capable of asking questions about motivations, impact and risks of harm
when working in our own backyard.

Step 3: Introspection
It is often the visceral elective experience, and an accompanying sense that
‘something is not quite right’, that pushes the learner to start to identify their
own power and privilege. Learners may also realize that their motivations are
not as altruistic as originally imagined, and may question whether their
experience was potentially harmful to the very population they aimed to serve.
The learner may begin to question the basic premise that those in the global
North are in a position to help those in the South, along with the faulty
assumption that ‘some care is better than none’. This awareness may prevent a
trainee from working above their level of training and causing harm. It may lead
to greater respect for the knowledge and skills of local providers. It may even
lead a trainee to forgo pursuing any further experiences or deferring them until
later in her/his training. This humility may be combined with questions about
entitlement. What are our privileges, and from where do they spring (Pinto and
Upshur 2009)? Do we have the right to travel to another country to study and
work there? Why do internationally trained physicians and trainees face
numerous barriers to practicing, even for brief periods, within HIC? The learner
must recognize that ‘medical training in a developed world context does not
translate to competence in all settings’ (Pinto and Upshur 2009: 7). Humility is
essential to undermining the neocolonialism that can characterize North-South
relationships.
There may also be a re-examination of motivations. Philpott (2010)
categorizes these motivations into those we would rather suppress, those we can
tolerate, and those to which we aspire. A willingness to acknowledge less
palatable or admirable motivations, such as ‘the desire for professional
escapades to punctuate an otherwise dreary career’ (Philpott 2010: 231), does
not make them any less real, but may help cultivate humility and transform our
global health learning journey. Were we influenced by the hero myth? Often,
global health ‘heroes’ share a common story: they were called to adventure,
underwent trials and tribulations in a foreign land, and returned home changed
(Rosenzweig 1996). This myth becomes even more entrenched when we return
home to loved ones, who tell us how proud they are that we want to ‘save the
world’. Dagi (1988) turns the problem of ‘physician as hero’ on its head, using
this paradigm instead to suggest that physicians are called to address the broader
determinants of health and social injustice. Here, the physician is a ‘paragon of
virtue’, willing to assume risks, pursue knowledge and act to improve society as
a whole. However, Dagi (1988) recognizes the dangers inherent in this hero
mythology, which can lead to ‘a savior mentality; a sense of invulnerability; a
sense of entitlement and social mandate; and a highly paternalistic approach to
interactions with patients and with the institutions of society’ (Dagi 1988: 57).
Learners may question why they felt they were called to serve in this hero
role. Certainly, humanitarian celebrities play a role by inspiring us, and at times
demonstrating social justice in action and speaking ‘truth to power’ by virtue of
their position. Does seeking our own heroism build into our motivations around
global health work? How does the quest for awards and accolades fall into our
plans? Learners must question this impulse and be cognizant of the impact it can
have on the people they are aiming to serve, who risk becoming mere subjects in
our hero's tale.
Another danger of the hero myth is the ‘danger of the single story’ (Adichie
2009). When we create and narrate a story to ourselves and others about our
global health experiences, ‘[we] create stereotypes, and the problem with
stereotypes is not that they are untrue, but that they are incomplete. They make
one story become the only story.’ Any singular story can dispossess or
disempower, as it is often impossible to relay a story with objective cultural and
historical context. When using a cultural competency-based approach to
understand their global health experience, trainees may actually further ‘other’
certain communities. By focusing too heavily on ethnocultural characteristics,
rather than an understanding of class, geography and political factors as key
determinants of a patient's health, they may fail to understand the complexities
of identity that involve race, ethnicity, class, gender and sexual orientation.
Rather, this approach simplifies patients or groups into one overarching identity
(e.g. African) (Wear 2003).
Students should reflect on how and whether they are implicitly participating in
this simplification, or telling of ‘a single story’, and whether they are failing to
‘connect the idea of diversity with the underlying core concept of social justice
in health care’ (Wear 2003). Adichie (2009) adds, however, that ‘stories can…be
used to empower and to humanize…stories can break the dignity of a people, but
stories can also repair that broken dignity’. In our examination of our
experiences and their consequences, we must consider how we use our stories
and what unexpected effects telling those stories may have. Does the way we
internally examine and communicate our experience build or break stereotypes,
empower or disempower, expand or contract the ability of those around us to
understand the scope of global health?
Finally, how have we been changed by our global health experience? Learners
may find the immense luxury in the global North unsettling or disturbing after
witnessing extreme poverty in low-income settings. We may find the applause
from family and friends jarring, when recognizing that the task of addressing
health inequities is far larger than anything we could have tackled on our own.
We may return home incensed by the injustice that we have witnessed. We may
feel compelled to enact change in some way, or alternatively may feel defeated
by our seeming inability to change the circumstances in our host communities.
We may feel a sense of discomfort in sharing our experience, sensing that we are
in some ways putting the poverty of others on display. Razack (2007) refers to
this peculiar consumption of the pain and suffering as ‘stealing the pain of
others’, and compels us to recognize our economic, missionary and even moral
complicity, and to question the ways in which we may use other people's
suffering to validate things we believe about ourselves, such as our strong
humanitarian impulses or caring natures. This reflection is even more pressing in
the digital era, where blogs and online photo essays may provide catharsis for
the writer, but may also exploit the grief, suffering and poverty of their patients
(Bhan 2005).
This complex process of introspection is meant to be reflexive as well as
constant. Trainees are encouraged to ask themselves a number of questions
before proceeding on a global health elective (see Box 3.1). However, they will
invariably revisit these questions and ask new ones after their global health
experience. This iterative process allows learners to cultivate global health as a
worldview and, ideally, develop a pattern of lifelong learning.

Box 3.1: Questions for students prior to global health work


(adapted from Pinto and Upshur 2009)
Why do I hope to do this work?
What are my objectives (personal and structural, short- and long-
term)?
What are the benefits and who will receive them?
What are the costs and who will bear them?
What do I need to do to prepare for my experience, both practical and
personal?
Is it fair to impose my presence on a community when power
imbalance, language or cultural difference may impede my ability to
understand how welcome or useful I am?
Can I address or prepare for these issues before my departure?
What are the specific weaknesses in my plan?
Is the work feasible, cost-effective, necessary, focused and justified?
Will it work to undermine disparity or actually contribute to it?
What do I hope to bring back to my community and with whom will I
share it with?
How will I assess my impact, both subjectively and objectively?
Where will I get my feedback from?

Step 4: Relearning global health as a worldview


Continual learning is an ongoing process rather than a discrete point in the
learner's trajectory. We come to realize that our experiences, analysis and self-
reflection will continually alter our perceptions of what global health actually
means. We discover that global health is more a way of looking at health and
inequalities, rather than a static field of study or work. We may question whether
simple answers exist at all. This openness to discomfort can help us discover
new ways of community-building, and learn more deeply about belief systems
that differ from our own. Over time, we develop a clearer sense of how we may
pursue a career in global health and try to find mentors who will foster our
vision, as well as institutions that will support us in those goals.
To develop this expansive analysis of global health, learners often turn to
further education. Although an institution's global health curriculum may be
strong, the learner must remain critical of its underlying philosophies. Many
Northern institutions are enthusiastically forming partnerships with Southern
universities. The speed of these developments may not allow for adequate time
to address ethical concerns and develop sustainable relationships (Crane 2011).
When choosing an institution within which to study, it may be incumbent on the
learner to ensure she is part of a thoughtful, collaborative partnership (Chapter
9).
Inspiration is critical at all stages of the learning journey as we seek answers
to uncomfortable questions and sometimes face disillusionment. Surrounding
ourselves with peers and community members who share and expand our ways
of thinking can be an incredible source of support. Cultivating mentorship is
another central aspect to creating a community of practice. The right mentor can
provide insight and inspiration, and encourage learners at pivotal and paradigm-
shifting moments in their careers (Anderson and Anspacher 2011). How can
mentees actively seek out effective but more informal mentorship? Students
must be perseverant and proactive in their search, including setting up meetings
with potential mentors. They must foster the characteristics of an effective
mentee: passion to succeed, proactivity and willingness to learn (Jackson et al.
2003). Similarly, effective mentees prepare for meetings with their mentors,
provide a suggested outline for each discussion, and complete assigned tasks
(Sambunjak et al. 2010).
Lastly, daily experiences can inform our ways of thinking. Does our daily
work create opportunities to engage in local global health sustainably? How
might we build upon these opportunities? Developing global health as a
worldview means finding the applicability of global health in all of these
avenues.

C) Conclusion
The global health learning cycle (Figure 3.1) is meant to represent the dynamic,
flexible nature of the learner's path. Many learners move from initial questioning
to self-reflection without the need for a visceral experience. By understanding
and articulating these various stages, we have a platform to examine some of the
ethical challenges faced by global health learners from the North.
It is essential to create a space and process for self-reflection as part of this
journey, allowing us to understand the potential risks and benefits associated
with global health experiences in low-resource areas. Our ultimate goal is not to
discourage global health work by trainees, but rather to encourage trainees to
engage in their learning in the most ethical, sustainable and just way possible.
Case resolution 3.1

Ram enjoys his inner-city family medicine residency, but struggles with
the recognition that most of his patients live below the poverty line. He
realizes that his medical training takes him only so far when dealing with
the complex issues many of his patients face. Early in his residency, he
has the opportunity to travel to Tanzania on a short-term medical
elective, but declines, recognizing he is not yet comfortable to work
independently in that type of setting. After completing his residency, he
decides to explore family medicine opportunities in northern Canada,
having realized that global health is about marginalized communities
regardless of location. With the permission of a few of his patients, he
begins writing narrative pieces that highlight the social determinants of
health. He is confident that he can continue to weave global health
concepts into his work locally.

Case resolution 3.2

Mili continues to grapple with the difficult questions she began to


explore upon her return home from Rwanda. She realizes that she was
nowhere near as useful to the community as she had anticipated, and
even wonders if the money spent on her position would have better
served her host community in other ways. She regrets her relatively little
interaction with local colleagues there, and feels that four months was too
short to understand the dynamics of the local environment and
institution. However, she decides to persevere with international HIV
work, joining a large non-governmental organization in the field of
monitoring and evaluation. While living in Montreal, she travels
regularly to countries in West Africa to learn from local programs and
attend conferences. Although she still sees ethical challenges in her work,
she feels supported by her organization and is ready to continue asking
these difficult questions to ensure she acts as ethically and responsibly as
possible.
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Human rights discourse within
4
global health ethics
Lisa Forman and Stephanie Nixon

Objectives
To provide an overview of international human rights law, particularly
the right to health
To explore the potential contribution of human rights to the achievement
of global health equity
To explore intersections between human rights and global health ethics

A) Introduction
Despite earlier iterations of rights (including the 1776 US Declaration of
Independence and the 1789 French Declaration of the Rights of Man), the
impetus for the modern development of human rights emerged from the mass
violations of the two world wars (Henkin 1990). In 1945, the United Nations
(UN) was created, in part to reaffirm faith in “fundamental human rights, in the
dignity and worth of the human person, in the equal rights of men and women
and of nations large and small” (United Nations 1945: 2). The 1948 Universal
Declaration of Human Rights was the first explicit human rights instrument of
the contemporary system of international human rights law, articulating a broad
range of rights to be protected in pursuance of the core human rights values of
inherent dignity and equal rights (United Nations 1948). International human
rights law recognizes several categories of rights, including civil and political
rights (including rights to vote, to be free from torture, to have equality before
the law, and to have free expression, movement and association) and economic,
social and cultural rights (including rights to social security, work, education
and participation in cultural life). Despite these categories, within international
human rights law, all human rights are understood to be indivisible, interrelated
and interdependent (United Nations 1993).
Since 1948, these rights have been developed and expanded in multiple
human rights treaties, resolutions and declarations, necessitating the
development of a comprehensive set of international institutions to monitor and
interpret these rights, and prompting the development of regional human rights
systems in Africa, the Americas and Europe. These developments have seen
human rights become the fastest-growing field in international law (Mutua
2001), with international human rights viewed as having become “constitutive
elements of modern and ‘civilized’ statehood” (Risse et al. 1999: 234).

B) The right to health


The right to health has been protected in international law since the inception of
the UN. The 1946 Constitution of the World Health Organization recognizes
enjoyment of the highest attainable standard of health as a fundamental right of
every human being without distinction, and recognizes that governments are
responsible “for the health of their peoples which can be fulfilled only by the
provision of adequate health and social measures” (WHO 1948: 2). The 1948
Universal Declaration of Human Rights recognizes every person's right to a
standard of living adequate for her/his health and wellbeing, which includes
medical care (United Nations 1948). The 1966 International Covenant on
Economic, Social and Cultural Rights (ICESCR) contains the most authoritative
codification of this right, where state parties recognize everyone's right to the
enjoyment of the highest attainable standard of health and agree to take a
number of steps to achieve this (United Nations 1966). Subsequently, numerous
other international instruments have protected rights to health for specific
populations, including racial minorities, women, children, migrant workers and
people with disabilities (United Nations 1965, 1979, 1989; UN General
Assembly 2007). In addition, each of the regional human rights systems contains
treaties with health rights (Council of Europe 1961; African Union 1981; United
Nations 1988).
Yet the right to health had little political or social impact until fairly recently.
A major development came in 2000, when the UN Committee on Economic,
Social and Cultural Rights issued General Comment 14 (UNCESCR 2000),
which significantly advanced clarity regarding the scope and content of the right
to health and the entitlements it confers on rights-holders, and the corresponding
duties it places on states and the international community. The Comment defines
this right not only to include people's ability to access adequate, acceptable and
good quality health care, but to also access the underlying determinants of health
such as food, housing, access to water and adequate sanitation, safe working
conditions and a healthy environment (UNCESCR 2000). General Comment 14
specifies state duties corresponding to entitlements under this right, including
minimum core duties with which states must comply irrespective of resources,
and duties to respect, protect and fulfill access to adequate, affordable health and
health care more generally (UNCESCR 2000).
At the international level, the right to health has similarly been advanced
through the work of a UN-appointed Special Rapporteur on the right to the
highest attainable standard of physical and mental health. The Special
Rapporteur's work has further developed the normative content of this right, as
well as monitoring accountability for realization of this right by states and other
actors. For example, the Special Rapporteur has undertaken missions to multiple
countries (including Peru, Uganda, Israel, Lebanon, Colombia, India, Sweden,
Australia and Guatemala) as well as to international organizations and non-state
actors whose mandates impact on the right to health (including the World Trade
Organization, World Bank, International Monetary Fund and GlaxoSmithKline).
In addition, the Special Rapporteur has expanded the scope of the right to health
by defining pharmaceutical companies’ responsibilities in relation to access to
medicines (UNHRC 2008). The Special Rapporteur also submits annual reports
focusing on issues of particular relevance to the right to health such as poverty,
international trade and health systems (OHCHR 2010).
The prominence of this right has similarly been aided through the
development of a health and human rights movement globally (Hunt 2006;
Beyrer and Pizer 2007; Gruskin et al. 2007; Farmer 2008), emerging from the
thesis advanced by Jonathan Mann that human rights and health are in an
inextricable relationship (Mann et al. 1999). As a result of the growing health
and human rights movement, human rights are now widely seen as essential
components of health-practitioner education across a range of disciplines
(United Nations 1993; Consortium for Health and Human Rights 1998;
International Council of Nurses 1998; World Medical Association 1999;
Rodriguez-Garcia and Akhter 2000), with curricula adopted globally at schools
of public health, medicine, law and policy studies (Harvard School of Public
Health, n.d.).
Nonetheless, the limitations of international human rights law and the right to
health must be acknowledged. This body of law is largely applicable to states
and deals weakly with the human rights duties of corporations or international
organizations. Furthermore, it deals primarily with a state's responsibilities to its
own population. These and other controversies provide important context for this
chapter's discussion of the contribution of the right to health to global health
ethics; for understanding possible institutional and structural factors contributing
to its non-realization; and for identifying areas of research required to strengthen
the legal and ethical framework relating to global health.

C) Human rights and global health


Human rights and the right to health make a distinctive contribution to efforts to
achieve global health equity, through (1) the normative specificity of the right to
health and its legally binding nature, (2) its rhetorical impact and potentially to
empower rights-holders, (3) accountability mechanisms such as UN country
reporting, litigation and advocacy, and (4) the growing adoption of rights-based
approaches to health (Forman 2011).
There is growing clarity in international human rights law regarding
government duties towards health within instruments such as General Comment
14. The elaboration of these duties provides specificity to governments in
fulfilling their population health responsibilities. The duties also provide legal
support for rights-based claims in a variety of formats, including advocacy,
litigation and UN complaints.
The use of rights rhetoric has the potential to shift health claims from appeals
to charity and compassion, to demands based in legally binding duties and
justice. A paradigm shift of this nature would see domestic and global policy-
makers viewing health not simply as superfluous component of budgetary
allocations, but as an area implicating binding legal and moral duties. Rights
may also have a transformative impact on the rights-holder, by empowering
people to make social and political claims backed with the force of law, and by
ensuring that the minimal conditions for individual life and health are met,
whether in the form of medicines or housing.
Human rights can also contribute to the achievement of global health equity
through the use of international, regional and domestic accountability
mechanisms associated with the enforcement of human rights. While most
human rights treaties allow individual complaints to be lodged against state
parties alleging the violation of treaty rights, there is a dearth of international
mechanisms in relation to the right to health. Domestic litigation remains a
primary accountability tool in most regions, albeit that its effective use is
contingent on a number of factors, including the existence of independent
judiciaries. The past decade has seen an exponential rise in right to health
litigation globally, including in low- and middle-income countries (Hogerzeil et
al. 2006; Yamin and Gloppen 2011). These cases have focused on a wide range
of issues, such as access to health services, discriminatory labour practices and
various aspects of the basic determinants of health (Gloppen 2008).
The 2002 South African case on perinatal HIV transmission is one such
example. In this case, social groups used international and constitutional
protections of the rights to health and life to file a case before the Constitutional
Court, claiming access to medicine to prevent mother-to-child transmission
(MTCT) of HIV (Constitutional Court of South Africa 2002). In its decision, the
Court ordered the establishment of a national perinatal program. In South Africa
today, a national MTCT programme provides medicines in over 96 per cent of
government clinics (Statistics South Africa 2010). Similarly, successful litigation
in India and Latin America illustrates how respect for, and promotion of, human
rights can lead to improved access to health care as well as increased budgetary
allocations to health (Singh et al. 2007; Gloppen 2008).
Rights can also work more systematically to advance health equity than the
intermittent incidence and narrow ambit of litigation or issue-based advocacy.
Rights-based approaches seek to operationalize the concepts and standards of
human rights and offer guidance to policy and programs seeking health equity.
They mandate the incorporation of core human rights principles such as non-
discrimination, participation and accountability, demand a focus on the poor and
marginalized, and require explicit reference to international human rights
instruments (Forman and Bomze 2012). One example is a right to health impact
assessment which focuses on the implications of policies on the realization of the
right to health, and explicitly adopting standards on the right to health drawn
from international human rights law (Hunt and MacNaughton 2006). Such tools
not only offer the potential to ensure better realization of the right to health, but
also may offer procedures for ensuring that governmental actions in other
domains, such as trade and commerce, do not unreasonably restrict individuals’
right to health (Forman and Bomze 2012).

D) How global health ethics advances human rights


Whereas the section above has considered the contributions of human rights to
global health, we now reflect on links to global health ethics. We argue that the
two fields are synergistic and their contributions taken together stand to offer
greater weight than either alone (Nixon and Forman 2008). Nonetheless we
acknowledge that there are rare instances where the interests of the two fields
may be viewed as in conflict.
A useful starting point is to examine the ethical underpinnings of human
rights. At the root of human rights is respect for the worth and equal value of
every human life, which may also be framed as the ethical principle of respect
for dignity. This focused ethical foundation means that there are aspects of the
field of global health ethics that do not fall within the purview of human rights.
For instance, global health ethics may include arguments based on compensatory
justice to articulate moral obligations of states to address a problem that their
own past actions served to create or exacerbate. A second example involves the
concern within global health ethics regarding the professional virtues that are
considered important for health care providers from high-income countries
seeking to work in low-income settings, such as humility and capacity for
introspection. While each of these examples offers ethical perspectives to
advance global health, they fall outside the scope of dignity-oriented human
rights.
Rare examples exist whereby the fields of human rights and global health
ethics may stand in conflict with each other. For instance, a dominant value
within some global health ethics perspectives is the role of charity (based on the
ethical principle of beneficence) as one of the mechanisms through which to
respond to global ills (see Chapter 3). However, this orientation of providing
support to those in need based on the kindness of the giver and her/his sympathy
for the recipient is at odds with a rights-based approach that frames responses in
terms of meeting the inalienable human rights of all individuals. This distinction
is important because the implications for action resulting from each rationale
may be vastly different.
A more productive lens seeks to understand the complementarities of the two
fields. First, global health ethics can reinforce the normative claims of
international human rights law. While many aspects of human rights law are
legally binding, some dimensions are more controversial, less developed, and
thus more difficult to enforce. In these instances, ethical arguments can serve to
bolster these normative claims and promote their acceptance as law. For
example, at present, international human rights law is only weakly applicable to
corporate actors. In spite of this, there are growing calls for greater corporate
responsibilities regarding human rights in various areas (Forman and Kohler
2012). Such efforts are exemplified in the emergence of global corporate
responsibility initiatives, such as the United Nations Global Compact and the
International Labour Organization's Tripartite Declaration of Principles
Concerning Multinational Enterprises and Social Policy (ILO 1978). However,
these processes are elucidating ‘soft law’ principles on human rights with which
companies should comply, and have little formal legal status. Similarly, in 2008
the UN Special Rapporteur on the Right to Health released a report entitled
Human Rights Responsibilities for Pharmaceutical Companies in Relation to
Access to Medicines (UNHRC 2008). These duties are not articulated as
peremptory duties with which companies “must” comply, but as actions they
“should” undertake. The guidelines offer a framework of ethical conduct for the
pharmaceutical industry in a range of areas, including access to medicines.
While these responsibilities are couched in the language of rights, they are more
appropriately classified as ethical as opposed to legal duties. The guidelines offer
the pharmaceutical industry greater precision regarding their ethical conduct in a
range of areas, and offer social actors a yardstick by which to measure the
ethical actions of the industry. The combined effect of these guidelines may be
to strengthen both human rights and ethical frameworks in this area, and to
contribute towards a public conception of corporate responsibility, which may,
in the long run, lead to greater legal enforceability of these duties.
Second, global health ethics can broaden the advocacy framework of human
rights. A critical global health ethics seeks to locate phenomena within social,
political, economic and historical contexts. In particular, such an approach
understands dilemmas as arising from institutional arrangements and power
structures (see Chapters 1–3) (Callahan and Jennings 2002). Adding these
complementary forms of argumentation to rights-oriented human dignity
arguments can result in strengthened advocacy calls for action. For example, the
unanimous adoption of the Millennium Development Goals (MDGs) by all UN
member states in 2001 reflects states’ responsibilities to realize rights through
both domestic and international action. MDG 8, “A global partnership for
development”, calls on high-income countries, in particular, to advance
development through various means including improved systems of trade, debt
and aid. While human rights obligations provide one justification for wealthy
countries to comply, a global health ethics approach can illuminate a broader
range of rationales for rich country action in fulfilling MDG 8, such as equity
and solidarity, and utilitarian self-interest arguments based on health, security or
economic returns. Equally relevant is reasoning from critics such as Benatar et
al. (2003) and Pogge (2003), who argue that the past and present policies of
wealthy nations have created and maintained poverty and ill health and,
therefore, that wealthy nations bear a commensurate responsibility to help
alleviate these problems.
Third, global health ethics can assist in resolving the “human rights versus
public health” debate. Inherent to this debate is a critique of human rights as
being overly individualistic, which, it is argued, can detract from the population-
level goals of public health (De Cock et al. 2002). While it is true that rights are
individually held entitlements, rights claims also hold strongly collective
elements. For example, the individual right to vote cannot be realized without a
collective democratic system. Similarly, certain individual claims to the right to
health cannot be met without an adequate collective health care system. A
concern within public health is the extent to which individual rights can “trump”
these collective interests and, conversely, when it is appropriate to limit
individual rights in the service of collective health. Different jurisdictions
attempt to achieve this balance in different ways: the liberty-oriented model
embraced by the US views rights as absolute and able to trump all competing
public interests, whereas the approach advanced in international human rights
law and other constitutional jurisdictions, such as Canada and South Africa,
seeks to balance competing individual rights and collective interests with
attention to both human rights principles and the impact of such limitations on
individual rights and collective interests.
Since the 1980s, international human rights has articulated the Siracusa
Principles, which indicate that rights can be limited in service of public health
provided that such limitations are both necessary and proportional, which
themselves require ethical justification (UN ECOSOC 1985). A current example
of the human rights versus public health debate has occurred in the argument
around patient-initiated (opt-in) versus routine (opt-out) HIV testing. This topic
has received impassioned attention from both public health and human rights
experts (Csete et al. 2004). Public health experts have charged that “human-
rights based approaches to HIV/AIDS prevention might have reduced the role of
public health and social justice, which offer a more applied and practical
framework for HIV/AIDS prevention and care in Africa's devastating epidemic”
(DeCock et al. 2002: 67) Ironically, the Siracusa Principles, which are human
rights norms, provide weighty support for an opt-out approach to HIV testing,
which has traditionally been understood as a predominantly public health
position. Nonetheless, human rights advocates have come to realize that in high
HIV-prevalence settings, routine testing can be seen as both “necessary” and
“proportional” provided that appropriate counselling and protection against
adverse outcomes is provided. Thus the Siracusa Principles offer to resolve
apparent dichotomies between public health's primary mandate of protecting
population health and the human rights imperative to protect individual rights
(Gruskin and Loff 2002). These two goals are not necessarily in conflict and, in
most cases, are mutually reinforcing. Articulating these principles as ethical
norms may strengthen their acceptance and application by those who view
human rights as imposing unacceptable obstacles to public health practice.

E) How human rights advances global health ethics


In a reciprocal and reinforcing way, human rights can advance global health
ethics. First, human rights emphasize the importance of upstream determinants
of health. The 1978 Declaration of Alma-Ata described health as “a social goal
whose realization requires the action of many social and economic sectors in
addition to the health sector” (WHO 1978). From this perspective, the necessary
preconditions of health also include those social and environmental components
necessary for wellbeing, a view reflected in the 1986 Ottawa Charter for Health
Promotion, which proposes that “the fundamental conditions and resources for
health are peace, shelter, education, food, income, a stable ecosystem,
sustainable resources, social justice and equity” (WHO 1986). However, debate
continues to flourish regarding the relative significance of the various factors,
particularly the importance of “upstream” structural factors such as socio-
economic status in comparison with individualistic, behavioural factors such as
exercise (Krieger 1994; Szreter 1998; Tesh 1998). This debate is far from
theoretical; the answer to the question of what determines health has far-
reaching implications for governments in terms of policies, expenditures and
programming. Furthermore, arguments in favour of individualistic determinants
of health shift responsibility and hence cost from the state to individuals.
The field of human rights can bring several decades of debate over the right to
health to bear on this public health dialogue on the determinants of health. In
particular, human rights can contribute to the public health debate over the
relative value of upstream versus downstream (or distal versus proximal)
determinants of health by offering a perspective that explicitly encompasses
structural, system-level forces. This conception of health as part of a
fundamental developmental package is reflected in the UNCESCR's General
Comment 14 (2000). Furthermore, the right to health is understood as indivisible
from other rights. That is, the right to health may be fully achieved only by
realizing other human rights. The notion of indivisibility can contribute to the
current health policy debate around determinants of health by reinforcing the
central role of broader structural factors related to power and oppression in
society.
Second, human rights emphasize the obligations of states toward their
citizens. At a time when many high-income country governments are reducing
public expenditures on health, and after decades of structural adjustment
programmes that have forced the same neoliberal reasoning on developing
countries, a refocus on states’ legal obligations progressively to realize the right
to health of all citizens offers added ammunition in both advocating for public
health and, where necessary, litigating for specific health services. This is
particularly salient for the ongoing debates over what constitutes healthy public
policy, including the role of the private sector in delivering health care. That is,
global health ethics analyses of public policy for health in both resource-rich and
resource-poor countries can be informed by human rights doctrine regarding the
ultimate responsibility for health resting with governments, in contrast to the
alternative perspectives that view health as a commodity that ought to be
regulated by the market. This perspective is reflected in numerous recent global
health policy outcomes, including the 2011 Rio Political Declaration on the
Social Determinants of Health (WHO 2011) and the UN Political Declaration
on the Prevention and Control of Non-Communicable Diseases (United Nations
2011).
Third, human rights contributes to recognizing the protection of rights as itself
a determinant of health. Global health ethics is concerned with identifying and
advancing ideas about what ought to be done to improve the health of societies.
Mann's thesis about the interconnectedness of health and human rights
contributes to the understanding of what makes people healthy or ill (Mann et al.
1999). This recognition that the protection of human rights is itself an important
determinant of health is largely absent from the discourse on determinants.
However, this has been shown to be a crucial factor in health promotion and
disease prevention in contemporary problems like reproductive and sexual health
(Freedman 1999). Furthermore, the recognition of human rights as a determinant
of health opens up avenues for intervention in the pursuit of improved public
health that may not have been realized in the past.

F) Conclusion
Actors within the fields of public health, ethics and human rights can gain
analytic tools by embracing the untapped potential for collaboration inherent in
such a combined approach. As a relatively mature field, human rights offers the
field of global health ethics the benefits of increasingly well-developed notions
of state responsibility with respect to health, and an obligatory legal framework
for action. Conversely, global health ethics offers human rights a strengthened
ethical framework for action, broader justifications for claiming cooperative
action in relation to health, and increased acceptance of collective ethical duties
towards global public health. We argue that the two approaches in tandem offer
a strengthened normative basis for the achievement of global health equity.
In this light, we call for further research to advance understanding and
applications of the intersections of human rights and global health ethics,
including in relation to: (1) limitations of rights in service of global health
interests, (2) responses to new and emerging pandemics, and (3) the legal and
ethical basis for articulating the responsibilities of state and non-state actors
towards global health.

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Global health governance and
5
ethics
Jerome Amir Singh

Objectives
To provide an introduction to governance for global health practitioners
To discuss infection control international governance strategies for
pandemic management
To consider the role of civil society in shaping governance

A) Introduction
Governance structures mediate what the various actors can and cannot do within
global health. Often academics, students and advocates want to see something
changed or something new developed, but are unaware of how things work. This
chapter aims to introduce the global health practitioner to governance.
In broad terms, governance can be defined as the actions and means adopted
by a society to promote collective action and deliver collective solutions in
pursuit of common goals (Dodgson et al. 2002). Governance includes regulation
by states (nation states, intergovernmental organizations); regulation by self-
organization (private sector and civil society); and hybrid forms of regulation,
including cooperation by, and interplay between, states and international
organizations, private sector and civil society (Kohlmorgen 2005). Health
governance concerns the actions and means adopted by a society to organize
itself in the promotion and protection of the health of its population (Dodgson et
al. 2002). For a glossary of terms see Table 5.1.
Global health – aimed at improving health for all people (Institute of Medicine
2009) – is concerned with the role and responsibilities of states and interstate
bodies, such as the United Nations (UN) and its agencies, international financial
institutions such as the World Bank and International Monetary Fund, political
groupings like the G-8 and G-20, private foundations, donors and international
non-governmental organizations (NGOs). It is evident that the nature and scope
of international cooperation has changed dramatically over the past century (see
Chapter 1). The recognition by states that they are no longer effective in
regulating health independently has necessitated a governance system that
encompasses state and non-state actors (Koplan et al. 2009), as well as interstate
bodies and international NGOs. “Global health governance” has been defined as
“the totality of collective regulations to deal with international and transnational
interdependence problems in health” (Hein et al. 2005). It includes the use of
formal and informal institutions, rules, and processes by states,
intergovernmental organizations and non-state actors to deal with challenges to
health that require cross-border collective action (Fidler 2010).
Table 5.1 Glossary of governance terminology
Instrument Example
Charter/Constitution – a set of Charter of the United Nations
foundation principles upon which an
organization or body is governed
Mission statement – comprises a set of Hospital mission statement
fundamental beliefs or guiding
principles that defines what an
organization is, why it exists, its reason
for being
Policy – rules for decision-making and National Department of Health policy
action; not legally enforceable, but on primary health care
usually internally binding within an
organization or body
Resolution – consensus statement of United Nations Security Council
principles which may or may not be Chapter 7 Resolutions (binding) World
binding Health Assembly Resolutions (not
binding)
Code – a set of rules (for example, of Professional association code of
conduct) promulgated by a body or conduct
organization, which is usually binding
on members
Declaration – a set of non-binding World Medical Association
guidance points proposed by an Declaration of Helsinki (2008)
organization or body
Guideline – a set of non-binding WHO guidance documents
recommendations
Regulations – a set of rules, usually International Health Regulations (2005)
with binding effect
Protocol – a set of regulations or Kyoto Protocol to the United Nations
boundaries to operation, recommended Framework Convention on Climate
by a Convention or Commission, in Change
order to comply with the agreement,
convention or treaty; binding on parties
who agree to ratify or accede to it
Treaty – a written agreement between North American Free Trade Agreement
two or more states or Sovereigns,
governed by international law
Convention – an agreement that has Framework Convention on Tobacco
been drafted by or falling under the Control
auspices of an international,
independent organization; binding on
parties who ratify or accede to it

This chapter begins with a brief outline of how global health governance
evolved as a discipline. This is followed by an overview of the World Health
Organization (WHO) and a review of the role the WHO and other interstate
agencies play in global zoonoses governance. This is followed by an overview of
infection-control strategies. The chapter concludes with three case studies.

B) Genesis of global health governance


In the mid-nineteenth century, expanding trade and travel between nations saw
states initiating dialogue and negotiations on health threats considered to be of
international significance, such as plague, cholera and yellow fever. This
evolved to collective action on other health threats, such as mitigating pollution
in rivers and lakes bordered by two or more countries, protecting the health of
combatants during war (now referred to as international humanitarian law), and
protecting workers from occupational safety and health risks, an issue now
governed by the International Labour Organization. While the WHO is the lead
UN agency on global health matters, several players, including other agencies in
the UN system (such as the UN International Children's Emergency Fund,
UNICEF), have since become major players in the global health arena (Table
5.2).

C) World Health Organization


In the wake of World War II, in 1948 the UN created a specialized health
agency, the World Health Organization, to exercise leadership on global health
issues. As of 2012, the WHO has 194 member states and is headquartered in
Geneva, Switzerland. The World Health Assembly (WHA) is the decision-
making body of the WHO and meets annually in Geneva. It is attended by
delegates from all WHO Member States and focuses on a specific health agenda
prepared by the Executive Board. The WHA's main functions are to determine
the policies of the WHO, appoint the WHO Director-General, supervise financial
policies, and review and approve the proposed WHO programme budget.
Its constitution requires the WHO to be the “directing and coordinating
authority on public health” (Art. 2) and endows the organization with extensive
powers (such as the power to pass treaties and regulations), to proactively
promote the attainment of “the highest possible level of health.” Once adopted
by the WHA, the adopted regulations and conventions apply to all WHO
member countries, even those that voted against it, unless the government
specifically notifies WHO that it rejects the regulation/convention or accepts it
with reservations (Gostin and Mok 2009). Despite being equipped with these
extensive powers by its constitution, the WHO has been heavily criticized for its
reluctance to enact and apply stronger international health governance
mechanisms (Lakin 1997; Taylor 2004; Fidler 2005; Gostin and Mok 2009).
Since its establishment, the WHA has adopted only three international
instruments:
Table 5.2 Major players in the global health arena (reproduced with
permission from Fidler 2010)
Player category Examples
States Great powers United States, China
Emerging powers India, Brazil
Developed states Britain, Canada,
Germany, Japan,
Norway
Developing countries Bangladesh, Indonesia,
Kenya, Venezuela
Failing or failed states Congo, Haiti,
Zimbabwe, Somalia
IGOs Multilateral ILO, UN, UNAIDS,
UNICEF, World Bank,
WHO, WTO
Regional African Union,
ASEAN, European
Union
PPPs Mechanisms to increase AMCV; GAVI
access to health Alliance; Global Fund;
technologies IFFIm
Drug and vaccine Drugs for Neglected
development partnerships Diseases Initiative,
International AIDS
Vaccine Initiative,
Medicines for Malaria
Venture, Malaria
Vaccine Initiative, TB
Alliance
Non-state actors Philanthropic foundations Bloomberg Initiative,
Carter Center, Clinton
Foundation, Gates
Foundation,
Rockefeller Foundation
NGOs and civil society Amnesty International,
groups Médecins sans
Frontières, Human
Rights Watch, Oxfam
Multinational corporations Food and beverage,
pharmaceutical, and
tobacco companies

Abbreviations:
AMCV – Advance Market Commitment for Vaccines
ASEAN – Association of Southeast Asian Nations
GAVI – Global Alliance for Vaccines and Immunisation
IFFIm – International Finance Facility for Immunisation
IGO – international governmental organization
ILO – International Labour Organization
NGO – non-governmental organization
PPP – public–private partnership
TB – tuberculosis
UN – United Nations
UNAIDS – Joint United Nations Programme on HIV/AIDS
UNICEF – United Nations International Children's Emergency Fund
WHO – World Health Organization
WTO – World Trade Organization

World Health Regulation No. 1, Nomenclature with Respect to Diseases


and Causes of Death, which formalized a by-then long-established
international process on the classification of disease (WHO 1990). Now
known as the International Classification of Diseases (ICD), the ICD is
recommendatory rather than obligatory.
World Health Regulation No. 2, the International Health Regulations
(IHR), dates back to a series of international sanitary conferences held in
Europe during the second half of the nineteenth century to address the
transboundary effects of infectious diseases. The work initiated by the
international sanitary conferences eventually yielded the International
Sanitary Regulations (ISR), which the WHA adopted in 1951. The ISR
applied only to cholera, plague and yellow fever, and were eventually
renamed the International Health Regulations in 1969.The IHR were
extensively revised in 2005 (www.who.int/ihr/en), with a primary focus
on “public health emergencies of international concern,” defined as “a
public health risk to other States through the international spread of
disease” (WHO 2005, IHR Art. 1). The IHR is binding in nature.
The Framework Convention on Tobacco Control (FCTC) was adopted
by the WHO in 2003. The FCTC is aimed at protecting present and
future generations from “the devastating health, social, environmental
and economic consequences of tobacco consumption and exposure to
tobacco smoke” (Art. 3). It adopts multidimensional strategies, including
demand reduction, supply reduction and tort litigation (Gostin and Mok
2009). The FCTC is binding on ratifying countries.

Because of its poor record in yielding binding governance instruments, the WHO
has been criticized as being “highly skewed towards recommendations over
treaties and regulations” (Gostin and Mok 2009). Recommendations can take
various forms, but two primary types include resolutions and codes of conduct
(Gostin and Mok 2009). Non-binding instruments of this nature are referred to as
“soft law.” Since its founding, the WHO has also assumed a support role to
governments through a variety of initiatives, including the publication and
dissemination of guidelines and the provision of technical advice.
Pandemic management has emerged as one of the WHO's major concerns in
recent years, with the emergence of diseases that can be transmitted between
animals and humans (zoonoses diseases), such as severe acute respiratory
syndrome (SARS), swine flu and avian flu. It is thus important to briefly
consider global zoonoses infection control governance and related containment
strategies.

D) Zoonoses infection control governance


The WHO defines zoonoses as diseases and infections that are naturally
transmitted between vertebrate animals and humans. Zoonoses management falls
under the mandate of three specialized international agencies:

World Health Organization


As noted above, the WHO is the lead UN agency for global human health. The
mandate of the IHR (2005) has been expanded beyond cholera, yellow fever and
plague (the narrow focus of its previous incarnation), and now applies to
zoonoses outbreaks. Some of the containment strategies outlined in the IHR,
such as quarantine and isolation, are discussed below.

Food and Agriculture Organization (FAO)


Headquartered in Rome, Italy, the FAO is a specialized agency of the UN that
leads international efforts to defeat hunger. However, its mandate also includes
zoonoses control, particularly in relation to agricultural animals. In 1994, the
FAO established an Emergency Prevention System for Transboundary Animal
and Plant Pests and Diseases, focusing on the control of diseases such as
rinderpest, foot-and-mouth disease and avian flu. This system is intended to help
governments coordinate their responses to transboundary zoonoses threats.

World Organisation for Animal Health (OIE)


Headquartered in Paris, France, the World Organisation for Animal Health
[originally Office International des Epizooties (International Office of
Epizootics) and still known by its historical acronym] is the intergovernmental
organization responsible for improving animal health worldwide. Created by an
international agreement, the OIE is the sole reference organization for animal
health. Its mandate includes setting standards for animal disease surveillance and
animal health and welfare, with the objective of providing a scientific basis for
safe international trade in animals and animal products and improving animal
health and welfare worldwide. The World Trade Organization, under the
Agreement on the Application of Sanitary and Phytosanitary Measures, formally
recognizes the OIE as the reference organization responsible for establishing
international standards relating to animal diseases, including zoonotic diseases.
In response to a rise in zoonoses threats such as H5N1 and H1N1, the WHO,
FAO and OIE have published a series of guidelines, independently and in
collaboration with each other and other relevant international agencies, to govern
zoonoses threats (FAO 2003, 2009; FAO and OIE 2004; OIE and FAO 2007;
FAO et al. 2008). Some of these responses include pandemic infection control
strategies that impact on human liberties. These containment strategies are
reviewed briefly here.

E) Pandemic management: infection control


governance strategies
Some of the earliest examples of health regulation came in the form of
involuntary isolation, as early societies isolated lepers and others suspected of
carrying diseases. While isolation was practiced by early societies, the word
“quarantine” has Italian origins, meaning “forty days,” the historical period of
time a ship or individuals suspected of carrying plague would have to be isolated
from those who were known not to carry the disease in the mid-1300s.
Surprisingly, despite major advances in diagnostics and prophylaxis since the
fourteenth century, isolation and quarantine are still features of modern infection
control and are loosely referred to as “social distancing” strategies (Table 5.3).
Table 5.3 Summary of infection control governance strategies (adapted
from Singh 2008)
Pandemic management strategy Definition
Quarantine The separation and restriction of
movement of persons who, while not
yet ill, have been exposed to an
infectious agent and therefore may
become infectious (CDC 2004).
Isolation The separation of persons who have a
specific infectious illness from those
who are healthy, and the restriction of
the movement of the sick to stop their
spread of that illness (CDC 2004).
Voluntary isolation Occurs when, after appropriate
counseling (if necessary), an infected
individual voluntarily isolates
him/herself from others who are not
infected to prevent the infection
spreading to the latter. This may take
the form of solitary confinement (where
the infected individual has no
unprotected physical contact with
others) or group confinement (where
the infected individual shares
cohabitation and facilities, and
intermingles with others afflicted with
the same infection).
Involuntary isolation Sometimes referred to as ‘therapeutic
detention’. Applies to infected
individuals who refuse to voluntarily
isolate themselves to prevent their
infection spreading to others. In these
instances, the non-cooperative
individual may be forcibly confined to
a designated setting. Involuntary
isolation/enforced hospitalization
should be considered only as a last
resort.
Incarceration Although the term is sometimes used in
a medical context to refer to isolation
(Burman et al. 1997), from a
governance perspective it
conventionally refers to the
imprisonment of individuals who have
been tried and convicted of a crime, or
to those who violate a court order. This
can include non-compliant patients,
although their incarceration will raise
human rights and public health
concerns.

Social distancing has been described as the practice of “increasing the


physical space between individuals or infected populations with the aim of
delaying spread of disease” (WHO 2006). Social distancing strategies constitute
the backbone of public health law in many countries, allowing authorities to act
decisively in the face of health threats to the wider public, including those of a
trans-boundary nature, even if doing so impinges on an individual's rights. The
most common forms of social distancing are isolation, detention, quarantine and
incarceration (CDC 2004). While these strategies have in common the
confinement of individuals or the restriction of their mobility rights, and are
commonly used interchangeably, each is subtly distinct. Unfortunately, the
misappropriate use of infection control containment terminology can give rise to
concerns amongst human rights activists, who justifiably fear that the
criminalization of infection may stigmatize diseases and drive them
underground. It is thus important to outline their respective natures.

F) Ethical, human rights and social implications of


public health containment strategies
While the above-mentioned containment strategies are arguably effective and
have been incorporated into domestic public health governance frameworks,
they raise numerous ethical, human rights and social concerns.

Confinement and ethics


Since the early 1970s, the principles of biomedical ethics have been touted as the
essential benchmarks of good clinical practice and health research. According to
these principles, health practitioners are expected to uphold, amongst others, the
patient's right to autonomy (which stresses that mentally competent patients have
the right to determine the course of their own health) and non-maleficence
(which stresses that patients have the right not to be harmed). However, both
principles are violated if authorities forcibly confine non-cooperative infected
patients to designated facilities to prevent their infection from spreading to
others. Such an outcome is untenable as it will mean that while a containment
measure may be legal, it would be unethical according to the biomedical ethics
paradigm. Accordingly, the past decade has seen the emergence of various
proposed principles of “public health ethics.”
Public health ethics is increasingly being seen as a distinct branch of bioethics
and has been described as

[t]he principles and values that help guide actions among public health
system actors, which are designed to promote health and prevent injury and
disease in the population. The principal values of public health ethics include
the salience of population health, safety, and welfare; fairness and equity in
the distribution of services; and respect for the human rights of individuals
and groups.
(Gostin 2003)

Nancy Kass (2001), James Childress (Childress et al. 2002), Ross Upshur (2002)
and Lawrence Gostin (2003), amongst others, have proposed various
frameworks of public health ethics – analytical tools of sorts akin to the four
principles of biomedical ethics – designed to help public health professionals
consider the specific ethical implications of proposed public health interventions,
policy proposals, research projects and health programmes. The following
seven-step framework is a brief attempt to synthesize their respective proposals
(Singh 2007):

What are the public health goals of the proposed project? – the principle
of harm prevention and necessity
How effective is the project known to be in achieving its stated goals? –
the principle of effectiveness
What are the known or potential burdens of the project? – the principle of
burden identification
Can the burdens be minimized? Are there alternative approaches? – the
principle of least infringement/restriction/coercion
Is the project implemented fairly? – the principle of proportionality
Can the benefits and burdens of the project be fairly balanced? – the
principle of public justification and transparency
Individuals who are affected by public health initiatives should be
adequately supported or fairly compensated – the principle of reciprocity
Confinement and human rights
Human rights refers to a set of principles and norms internationally agreed upon
by governments that are contained in treaties, conventions, declarations,
resolutions, guidelines and recommendations at the international and regional
levels. Modern human rights instruments have their source in the 1948 Universal
Declaration of Human Rights (see Chapter 4). Although this instrument is not
legally binding on countries, it carries considerable moral authority. At first
sight, infection control containment strategies appear potentially to violate
several rights in this instrument, including Article 3 (Everyone has the right to
life, liberty, and security of person); Article 5 (No one shall be subjected to
torture or to cruel, inhuman or degrading treatment or punishment); Article 9
(No one shall be subjected to arbitrary arrest, detention or exile); Article 12 (No
one shall be subjected to arbitrary interference with his privacy, family,
home…); and Article 25 (Everyone has the right to a standard of living adequate
for the health and well-being of himself and his family, including…medical care
and the necessary social services, and the right to security in the event of…
sickness).
However, human rights doctrine also recognizes the limitation of many rights
in a public health emergency, provided the measures employed are legitimate,
non-arbitrary, publicly rendered and necessary. In this regard, section 25 of the
Siracusa Principles on the Limitation and Derogation of Provisions in the
International Covenant on Civil and Political Rights holds: “Public health may
be invoked as a ground for limiting certain rights in order to allow a state to take
measures dealing with a serious threat to the health of the population or
individual members of the population. These measures must be aimed
specifically at preventing disease or injury or providing care for the sick and
injured.” A particular issue from a human rights perspective is whether the
containment strategy in question represents the least restrictive means to achieve
effective infection control and the extent of the belief in the severity of the
threat. The restrictions imposed by authorities should also be of limited duration
and subject to review.
While the curtailment of rights on the grounds of public health is endorsed by
human rights instruments, health workers should also be cognizant of the social
implications of such measures.

G) Confinement and social factors


As noted above, public health authorities usually focus primarily on the public
health aspects of infection control and rely on judicial and law enforcement
authorities for assistance in this regard. However, social factors often lead to
individuals resisting confinement measures, and addressing their concerns
meaningfully will often hold the key to effective infection control.
For example, in the case of drug-resistant tuberculosis (TB), health authorities
may deem the isolation of the infected individual to be the most effective
containment strategy. However, that individual may be the primary or sole
bread-winner of his/her family, and confinement in a health facility for up to
twenty-four months (in the case of multi-drug-resistant, MDR-TB) or
indefinitely (in the case of extremely drug-resistant, XDR-TB) will effectively
mean that the family of that individual will be deprived of his/her means of
livelihood during this period. Similar factors would apply to infected single
heads of households with dependants: a prolonged or indefinite confinement in a
health facility would likely mean that such dependants would be deprived of
their care-giver during that period.

Case study 5.1

XDR-TB

An arriving traveller presents at an international airport with cough and a


high fever. Emigration officers realize the individual is a highly
infectious defaulting XDR-TB patient who has been placed on an
international watch-list. How should the authorities proceed in the
matter?
The IHR requires signatory nations to notify WHO of (1) any event
that may constitute a public health emergency of international concern
(PHEIC); or (2) any significant evidence of public health risks outside
their territory that may lead to or cause the international spread of disease
(IHR 2005, Art. 6–8). The IHR also requires nations to expand their
national health surveillance capacities and implement certain measures
for regulating international traffic at airports and other entry points (IHR
2005, Art. 5).
Whether the IHR can or should be used to control TB globally is
unresolved because it is not clear whether cases of TB, MDR-TB or
XDR-TB constitute a PHEIC (Calian and Fidler 2007). WHO's Global
Task Force on XDR-TB has suggested that XDR-TB should not be
considered a PHEIC because its origins are attributed to internal state
policies and it is not as much of an acute threat as other diseases such as
SARS (WHO Global XDR-TB Task Force 2007). However, this position
has been challenged (Wilson et al. 2007). There is, however, precedent
for considering MDR and XDR-TB as potential PHEICs. In 2007 the
USA notified WHO of one person with drug-resistant TB who travelled
internationally by commercial aircraft in 2007 as a potential PHEIC
(WHO 2007).

Case study 5.2


Cholera outbreak in Zimbabwe

Due to crumbling infrastructure, sewage plants in Zimbabwe begin


leaking raw sewage into rivers. Within weeks, thousands of people who
rely on the rivers contract cholera. The Zimbabwean government denies
that the country is experiencing a cholera pandemic, despite thousands of
deaths and sick refugees presenting in bordering countries, and refuses to
act on the emergency. Can the international community legally intervene
in instances when a state is unwilling or unable to control an epidemic?
The above scenario mirrors what occurred in Zimbabwe in 2008, and
raises the question of what recourse populations have in the event of a
disaster if their host state is incapable or unwilling to provide basic aid
and is reluctant to request international assistance. Currently there is no
general convention that governs all aspects of disaster relief, in stark
contrast to international humanitarian law, which protects civilians
during armed conflicts (Davies 2010). On the question of humanitarian
access, international law tends to favour the protection of sovereignty
and territorial integrity over the protection of populations (United
Nations 2007). However, while international law does not currently
govern humanitarian disasters, the WHO's revised IHR (2005) lists
cholera as one of the diseases about which states are required to notify
WHO, due to its potential serious public health impact and its ability to
spread internationally. The IHR requires that states request international
assistance if they have insufficient antidotes, drugs, vaccine, protection
equipment and financial, human and material resources to contain the
disease. The breakdown of the public health system in Zimbabwe, the
case fatality rate of cholera victims, and the speed at which the disease
spread in 2008 all pointed to the state being unable to effectively contain
the disease outbreak (Davies 2010). In terms of the IHR 2005,
Zimbabwe's 2008 cholera outbreak constituted an emergency and the
Zimbabwean government had a duty to accept the assistance offered by
WHO and various NGOs. In instances where a state still refuses to accept
international intervention in the face of a major disease outbreak, the UN
Security Council could become involved. The UN High-level Panel on
Threats, Challenges, and Change (United Nations 2004) noted that in
certain instances:

[T]he Security Council should be prepared to support the work of


WHO investigators or to deploy experts reporting directly to the
Council, and if existing International Health Regulations do not
provide adequate access for WHO investigations and response
coordination, the Security Council should be prepared to mandate
greater compliance. In the event that a State is unable to adequately
quarantine large numbers of potential carriers, the Security Council
should be prepared to support international action to assist in cordon
operations. The Security Council should consult with the WHO
Director-General to establish the necessary procedures for working
together in the event.

Due to the possibility of being classified as a failed state (which would


have opened the door to possible UN Security Council intervention), the
Zimbabwe government eventually declared the cholera outbreak a
national emergency in December 2008, and invited WHO to coordinate a
Health Cluster response effort with the cooperation of the Zimbabwe
health ministry and other nongovernmental agencies.

Case study 5.3

Creating novel strains of H5N1


Scientists create novel, highly transmissible forms of H5N1 and want to
publish their methodology and findings. The US government believes
publishing the data could constitute a bioterrorism threat and pressurizes
the receiving journal to publish a redacted version of the manuscript that
does not contain information the government deems sensitive. The
scientists and journal object to this proposal. The US government turns to
the WHO to intervene in the matter. What governance instruments
govern the matter?
As any unintended release of modified H5N1 viruses from laboratories
conducting such research would have the potential for serious global
consequences, the IHR (2005) could be invoked to prevent and control a
possible international spread of H5N1. The application of IHR (2005) to
the given scenario would necessitate the countries hosting such research
to report the research to the international community, amongst other
reporting obligations. Given the potential implications of such reporting,
it is essential that the storage and research involving such materials meet
appropriate requirements for biosafety and biosecurity. In this regard,
aside from IHR (2005), a range of internationally recognized (but non-
binding) standards and guidance can be applied by national authorities to
assist in defining the appropriate conditions for further work on modified
and potentially deadly pathogens:

WHO (2004) Laboratory Biosafety Manual, 3rd edn.


WHO (2006) Biorisk Management: Laboratory Biosecurity
Guidance.
WHO (2010) Responsible Life Sciences Research for Global
Health Security.
CEN CWA 15793 (2011) Laboratory Biorisk Management.
CEN CWA 16393 (2011) Laboratory Biorisk Management –
Guidelines for the Implementation of CWA 15793 (2008).

Currently, no binding international instrument governs the study of


potentially dual-use biological samples and the dissemination of the
results thereof. This speaks to a major gap in biosafety and biorisk
governance, global health research governance, and public health
governance.
H) Conclusion
Global health emphasizes the need for governance that incorporates participation
by a broadly defined “global” constituency, and engaging them in collective
action through agreed institutions and rules (Dodgson et al. 2002). The global
nature of the threat posed by new and re-emerging infectious diseases will
require international cooperation between state and non-state actors in
identifying, controlling and preventing these diseases. Civil society – often as
part of social movements – plays a role in shaping governance, typically through
challenging the (in)action of nation states. The task of defining more clearly the
potential role of non-state actors within a system of global health governance is
challenging, especially as relationships, patterns of influence, and agreed roles
among state and non-state actors within an emerging system of global health
governance are still emerging. Global health governance will continue to evolve,
as stakeholders expand their resources, knowledge and influence.

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Indigenous health and ethics:
6
lessons for global health
Andrew D. Pinto and Janet Smylie

Objectives
To understand the health – and determinants of health – of Indigenous
peoples globally
To examine the historic and contemporary impact of colonization on the
health of Indigenous peoples
To introduce select Indigenous concepts relevant to ethics and global
health
To apply lessons learned from the ethics of working with Indigenous
peoples to other areas of global health

We have survived Canada's assault on our identity and our rights… Our
survival is a testament to our determination and will to survive as a people.
We are prepared to participate in Canada's future – but only on the terms that
we believe to be our rightful heritage.
–Wallace Labillois, Council of Elders, Kingsclear,
New Brunswick (Royal Commission on Aboriginal Peoples 1996)

A) Introduction
There are over 370 million Indigenous peoples living in over 90 countries
around the world (United Nations 2009). The enormous diversity in language,
beliefs and cultural practices seen across 5000 distinct communities belies the
use of a single term to label them all. Yet these communities share a common
history of colonization and marginalization, as well as of resistance against
dominant sectors of society. Resistance has occurred particularly through a focus
on the preservation of their distinct identities and cultural, economic and
political ways of life (UN Permanent Forum on Indigenous Issues n.d.).
While no universal definition of Indigenous peoples has been accepted (WHO
2007a), it is crucial to be mindful of terminology. Being able to define one's
community on one's own terms is a central part of self-determination. It
preserves the right and power of communities to decide who belongs to them,
rather than have this dictated by outsiders (International Work Group for
Indigenous Affairs n.d.). Self-identification happens through language that a
community has chosen, or through terms it has reclaimed. While it is beyond this
chapter to explore the history of terms used and misused to describe Indigenous
peoples (Bartlett et al. 2007), Table 6.1 lists some examples. Most definitions
will include reference to the relationships of Indigenous peoples to a collective
kin group and a current or historic land base. For example, one definition from
the Indigenous Physicians Association of Canada is:

communities, peoples and nations…which, having a historical continuity


with preinvasion and pre-colonial societies that developed on their territories,
consider themselves distinct from other sectors of the societies now
prevailing on those territories, or part of them. They form, at present, non-
dominant sectors of society and are determined to preserve, develop and
transmit to future generations their ancestral territories, and their ethnic
identity, as a basis of their continued existence as peoples, in accordance
with their own cultural patterns, social institutions and legal system.
(Indigenous Physicians Association of Canada and Association of Faculties of Medicine of Canada 2008: 6)

Table 6.1 Terms used when referring to Indigenous peoples in select


countries
Country Terms
Australia Australian Aborigines
Aboriginal Australians
Torres Strait Islanders
Natives
Indigenous Australians
Canada Aboriginal people
First Nations
Indians, Status Indians and Non-Status
Indians
Inuit
Métis
New Zealand Māori
Tangata Whenua (‘people of the land’)
USA Native Americans
Tribes
Indian, American Indians
Native Hawaiians
Native Alaskans

In this chapter, we examine the health of Indigenous peoples, intentionally


focusing on communities in four high-income settler colonial states: Australia,
Canada, New Zealand and the United States (Anderson et al. 2006). We explore
the determinants of health of these communities, particularly colonization as a
key historic and contemporary determinant. We end by reviewing the emerging
body of literature on the ethics of research involving Indigenous communities
and discuss how it can be applied to other global health work.

B) The health of Indigenous people globally


The health of Indigenous peoples living in high-income countries has
traditionally been considered outside the remit of global health, related in part to
the outward-focused gaze of the field (see Chapter 1). However, a growing
awareness of the similarities in health issues faced by Indigenous communities
in high-income countries and large segments of populations in low-income
countries has led to a convergence in theory and practice (University of Victoria
Center for Aboriginal Health Research 2010).
As with many marginalized communities, obtaining accurate data on
Indigenous peoples is difficult. In many regions of the world they are
unrecognized, uncounted and invisible (Stephens et al. 2005; WHO 2007b). Few
data are available from some of the countries and regions with the largest
numbers of Indigenous peoples, including China, India and Russia. This is
related to historical and ongoing efforts by the state to undermine sovereignty
and self-determination. Such structural forces are compounded by geographic
isolation, often a product of explicit efforts by the dominant community. In
addition, definitions of who is Indigenous and who is not are contested, and the
large majority of health information systems do not have inclusive and
appropriate ways of identifying Indigenous identity. For example, in Canada,
assessing the health of Indigenous individuals and communities is hampered by
undercounting, exclusion, or a lack of appropriate identifiers on the national
census, vital registration data, major health surveys, health service utilization
data and data from surveillance systems (Smylie and Anderson 2006; Smylie et
al. 2006).
Perhaps the most important set of issues for Indigenous health and social data
and data systems is the fact that Indigenous concepts of health and Indigenous
peoples are far too often marginalized in the production, analysis, sharing and
application of Indigenous data (Smylie et al. 2006). Indigenous peoples have
diverse and rich understandings of health that are highly relevant to the current
global debates regarding the need to refocus health care systems away from
acute care, high-cost treatments towards upstream prevention. For example, in
Cree, achieving a state of health and wellbeing might be expressed using the
term mino-pimatisiwin. This term can be loosely translated into English as
“living well”. Cree scholar Herman Michell further describes the concept of
health and wellbeing as “more than just the absence of disease and the physical,
it is about an entire philosophy of life, a way of being, a way of knowing, and
way of becoming whole and complete as we move through the different stages
of life” (Michell 2005).
Where available, the data indicate that Indigenous communities have worse
health and lower social status compared with dominant, non-Indigenous
populations (Montenegro and Stephens 2006; Ohenjo et al. 2006). In a study
looking at the health of Indigenous children in Canada, Australia, New Zealand
and the United States, a number of disparities consistently appear. Infant
mortality rates are 1.7 to four times higher than for non-Indigenous infants.
There are much higher rates of sudden infant death syndrome, injuries,
accidental death and suicide (Fantus et al. 2009). Infectious diseases are
significantly higher, including inner ear infections and respiratory tract
infections, and there are higher rates of exposure to environmental contaminants
including tobacco smoke (Smylie and Adomako 2009).
Likewise, adults fare worse than their non-Indigenous counterparts.
Indigenous peoples are more likely to experience disability, reduced quality of
life and death at a younger age (United Nations 2009). In Canada, a gap in life
expectancy of approximately seven years exists between Indigenous peoples and
the general population, while in New Zealand it is 11 years and in Australia 20
years (United Nations 2009). In Canada, the smoking rate in First Nation adults
is more than double the rate in the general Canadian population. The proportion
reporting weekly heavy drinking is double, and there are much higher rates of
obesity, diabetes and other chronic diseases (Health Canada 2005). Infectious
diseases also occur at high rates. For example, the rate of tuberculosis in
Indigenous communities in Canada is 35 to 150 times higher than the general
population, which is similarly noted among the Sami of Greenland and the
Maori of New Zealand (United Nations 2009). HIV and other sexually
transmitted diseases occur at disproportionately high rates, particularly among
women (Health Canada 2010).
Such health inequities are not unexpected when one looks at their broader
determinants. Indigenous peoples’ access to health care service is often
constrained by financial, geographical and cultural barriers. When services are
available, health care staff are often insensitive, discriminatory and unfriendly
(Stephens et al. 2006). Across multiple settings, Indigenous individuals have
lower incomes, lower educational attainment and higher rates of unemployment
(Smylie and Adomako 2009). Finally, the physical environment in which
Indigenous peoples live, work and play is often contaminated by pesticides,
industrial waste and the residue of extractive industries (United Nations 2009).
Focusing on single factors in isolation does not fully capture how multiple
determinants intersect and reinforce one another (WHO 2007b), and may not
reflect the holism apparent in Indigenous conceptualizations of health (Nettleton
et al. 2007). High levels of poverty, low levels of educational attainment and
high rates of unemployment are all causally linked. These, in turn, are
determined by access to physical, economic and social resources, political power
at the individual and community level, and the actions of external forces such as
state governments. All this is shaped by whether Indigenous peoples have
realized certain human rights (see Chapter 4) related to self-determination,
autonomy and self-government, freedom from discrimination and persecution,
and control over education, environment, economic conditions and the land.
While these are all enshrined within the United Nations Declaration on the
Rights of Indigenous Peoples and other international treaties, they are far from
being realized (United Nations 2007). To understand why, we now examine
colonialism, which has been implicated at the heart of the current reality of
Indigenous peoples (Stephens et al. 2006).

C) Colonization and resistance


Global health scholars will be familiar with the legacy of colonialism as a force
that has shaped the health of communities within low-income countries and that
continues to be part of the relationship between the North and South (see
Chapters 1 and 10). While national liberation from colonial powers occurred in
many of these countries beginning in the 1960s, in many ways “Indigenous
peoples represent the unfinished business of decolonization” (Wilmer 1993:
197). Despite the denial by some of a history of colonialism (Ljunggren 2009), it
is essential to see this as a process that is ongoing and not an isolated part of the
historical record.
The impact of colonization in high-income countries has been succinctly
described as “resource exploitation of Indigenous lands, residential school
syndrome, racism, expropriation of lands, extinguishment of rights, wardship,
and welfare dependency” (Alfred 2009: 43). The invasion of traditional lands by
European settlers led to a decimation of populations as a result of dispossession
and dislocation from traditional lands, social change that included cultural
suppression and assimilation, political marginalization and the introduction of
new diseases (Anderson et al. 2006).
Colonialism attacked Indigenous societies at all levels. First, communities
were removed from the land and their traditional way of life (Cunningham and
Stanley 2003). In many cases, this was through direct violence, while in others it
was the outcome of treaty negotiations. Treaties were often negotiated under
duress and in a manner that resulted in significantly different understandings of
what was intended or achieved. The reserve system was born out of these
interactions, created as supposed places of protection but following an ideology
of “separate development.” Importantly, Indigenous peoples typically had no
ownership of the land and very few rights if they left the reserve.
Second, cultural systems and practices were criminalized and undermined
(Reid 2006). Knowledge about infant, child and family health was typically part
of oral histories that were shared verbally and experientially. Overt suppression
of Indigenous cultures and languages had an enormous negative impact on this
intergenerational transmission of knowledge teaching (Smylie and Adomako
2009). In Canada, legislation mandated the removal of Indigenous children from
their homes and their placement in residential schools. Over 150,000 children
were placed in such institutions and the mortality rate was approximately 40 per
cent. Those who survived were subject to severe forms of abuse, neglect and the
active suppression of traditional languages and culture. The removal of children
into residential schools was an extreme manifestation of cultural suppression. As
noted by a Royal Commission, “The bonds between many hundreds of
Aboriginal children and their families and nations were bent and broken, with
disastrous results” (Royal Commission on Aboriginal Peoples 1996).
Unfortunately, in part due to the traumatic legacy of residential schools,
Indigenous children in Canada continue to be removed from homes at very high
rates and placed into protective services (Harris et al. 2007).
A third aspect of colonization was fostering dependency “in physical,
psychological and financial terms, on the very people and institutions that have
caused the near erasure of our existence and who have come to dominate us”
(Alfred 2009: 42). Political and social institutions, such as band or tribal
councils, are often funded by state governments and must operate within their
constraints. Any movement to change the status quo can be neutralized through
defunding. Similarly to many low-income countries where global health
activities take place, Indigenous organizations are often kept busy fulfilling the
needs of funders – through providing reports, attending meetings and
demonstrating change on performance indicators developed externally. The large
proportion of Indigenous peoples – both on and off reserve – who are dependent
on state welfare undermines self-sufficiency. Simultaneously, significant barriers
exist to accessing resources (education, employment) that would enable
Indigenous peoples to participate in and control their own lives.
Finally, colonialism as a process of both physical and psychological
displacement results in the internalization of oppression, resulting in trauma and
self-hatred. Indigenous peoples “bear their past within them” (Said 1993: 212)
and “perceive a need to decolonize our minds” (Smith 1999: 23). Internalizing
the superior/inferior dichotomy of colonial/Indigenous knowledge, language and
cultural practices is perhaps the most devastating aspect of colonialism. It
inhibits the reconstitution of the ability to survive and care for individuals and
communities, reinforcing a sense that one's community is worthless (Alfred
2009).
Highlighting resistance and resilience is as important a task as documenting
the negative impact of colonization. While primary resistance continues against
dominant society hegemony over land and resources, Indigenous peoples are
also engaged in ideological resistance and the reconstitution of community (Said
1993). This occurs in part through exerting the right to self-determination,
through naming and claiming rights, through the restoration of cultural heritage
and through opposing racism and discrimination (WHO 2007b). A full account
is beyond the scope of this chapter, but resistance occurs through establishing
sovereignty (e.g. the Canadian territory Nunavut), winning land claims (e.g.
British Columbia, Canada), and preserving language and cultural heritage (e.g.
New Zealand language nests). At a local level, resistance manifests in
communities that support one another in the face of poverty and discrimination
(Silver 2007) and familial disruption (Baskin 2007). Community-led health
promotion campaigns to increase smoking cessation (Cancer Care Ontario 2008)
and reduce the incidence of diabetes (Potvin et al. 2003) are further examples of
how Indigenous peoples are taking back control of their health and wellbeing.

D) “Decolonizing methodologies”
A crucial aspect of resistance by Indigenous peoples has also been reclaiming
the ability to define and understand their own communities. Research is a site of
this struggle as it is intimately related to protecting and preserving traditional
knowledge (Maina 2003). It is also part of the deeper issue of reframing who is
able to know Indigenous peoples (Said 1979). It should be noted that “aboriginal
knowledge has always been informed by research, the purposeful gathering of
information and the thoughtful distillation of meaning” (Castellano 2004: 98).
As Smith, a Maori scholar, has noted, “Decolonization, however, does not mean
and has not meant a total rejection of all theory or research or Western
knowledge. Rather, it is about centring our concerns and our world views and
then coming to know and understand theory and research from our own
perspectives and for own purposes” (Smith 1999: 39).
Indigenous knowledge that is developed through decolonized methodologies
is a powerful alternative, for both colonizer and colonized. “By animating the
voices and experiences of the cognitive ‘other’ and integrating them into the
educational process, [Indigenous knowledge] creates a new, balanced centre and
a fresh vantage point from which to analyze Eurocentric education and its
pedagogies” (Battiste 2005).
Examples of decolonizing methodologies include a community resisting the
imposition of an externally developed measure of wellbeing and developing a
unique and relevant indicator themselves (Ten Fingers 2005). Another example
is the use of life-course epidemiology to integrate biological and social risk
processes and to conceptualize how socio-economic determinants of health
influence the development of chronic diseases (Estey et al. 2007). A recent
example is community-based participatory research that assesses the health of
urban Aboriginals using respondent-driven sampling (Smylie et al. 2011).
Decolonizing methodologies is also about respecting and upholding
differences in worldviews. Indigenous worldviews place special significance on
the idea of the unification of humans with the natural world, and hence
displacement from the land is particularly traumatic (Matthews 1997). These
worldviews are often centered on the importance of intergenerational
relationships, community wellbeing and a holistic understanding of health (Estey
et al. 2007). They differ from mainstream Western views of health by focusing
not just on the individual, but on the community, the environment (Stephens et
al. 2005) and communal health (United Nations 2009). This is part of the reason
why considering and addressing the social determinants is so essential.
A review of case studies from around the world that discuss ways to address
these social determinants found that successful solutions are holistic – they
address spiritual, physical, mental, emotional, cultural, economic, social and
environmental factors, and address the individual and the context together
(WHO 2007b). The case studies also illustrated the importance of capacity
building (Smylie et al. 2006) better data and supporting community resilience.
Research projects should lead to increases in real financial support for health and
social services and emphasize communal ownership, building strong links with
local community networks.

E) Ethical principles from research involving


Indigenous communities
Global health practitioners working with marginalized individuals and
communities may learn a great deal from Indigenous peoples and the work done
on the ethics of research involving Indigenous communities. Given the historical
and contemporary relationships between dominant societies and Indigenous
peoples, it is not surprising that such ethical guidelines have emerged from grave
concerns about the behavior of researchers (Schnarch 2004). Academics have
played a central role in establishing the superiority of Western knowledge, of
furthering ecological imperialism and cultural appropriation (Ten Fingers 2005).
As Smith has stated, “‘Research’ is probably one of the dirtiest words in the
Indigenous world's vocabulary” (Smith 1999: 1). As in many areas within global
health (see Chapters 8 and 10), studies have been conducted in Indigenous
communities without obtaining community consent. Many examples exist where
researchers have published results without first discussing the implications for
communities. The approaches used have not always reflected Indigenous
worldviews, and have often undermined them as “primitive” or “superstitious”.
Typically, communities have not benefited from the research that has been
conducted upon them. Most concerning, perhaps, have been studies where
scientists have collected biological material (e.g. blood, tissue) from Indigenous
peoples and analyzed these samples without their explicit permission, sometimes
putting forth hypotheses that violate the community's ideas about creation and
their connection to the land. Communities have often had to fight for the return
of these samples (Dodson and Williamson 1999). There are clear links between
contemporary research and colonial practices of studying Indigenous peoples
and stealing cultural property and artifacts.
As a response to such ethical violations, and as part of reclaiming control over
research, Indigenous peoples have developed a variety of ethical guidelines. In
this context, ethics has been defined as a set of written and unwritten rules of
conduct that express important social and cultural values (Castellano 2004).
Indigenous organizations, funding agencies and groups of academics in
Australia, Canada, New Zealand and the United States have published ethical
guidelines to guide such research. In examining these guidelines, several
common, overlapping themes emerge that are instructive to global health
practitioners.

Research should uphold Indigenous self-determination


Indigenous scholar Castellano has noted, “Fundamental to the exercise of self-
determination is the right of peoples to construct knowledge in accordance with
self-determined definitions of what is real and what is valuable” (Castellano
2004: 102). Research should strengthen the ability of communities to define their
own agenda around health improvement and to be able to take actions to
implement this agenda. This includes upholding the right of communities to
define who is and is not a member (Bartlett et al. 2007). Another aspect is
respecting the right of Indigenous communities to govern and manage their own
data. One example of how this right has been implemented in Canada is known
as “ownership, control, access and possession of data” (OCAP) (Schnarch 2004).
Ownership refers to the collective proprietary relationship that Indigenous
communities have with their cultural knowledge, data and information. Control
asserts that Indigenous peoples maintain authority over all aspects of research,
including the conceptualization of the study question and hypothesis, the
development and approval of the research design, data collection and
management, data analysis, and the writing of the final report and its
dissemination (Australian Government National Health and Medical Research
Council 2003). The principle of access refers to the right of Indigenous
communities to manage and make decisions about who can see and analyze data
collected about them. Finally, possession refers to the ongoing retention of data
by communities.
This ethical imperative to support the right of Indigenous peoples to determine
their own knowledge processes has an inherent practicality: Indigenous
involvement means that research knowledge is much more likely to be
immediately relevant and useful to Indigenous communities. Indigenous self-
determination of knowledge processes can therefore exemplify “intrinsic”
knowledge translation processes.

Research should respect community customs and codes


of practice
“Where the social, cultural or linguistic distance between the community and the
researchers from outside the community is significant, the potential for
misunderstanding is likewise significant” (Government of Canada Panel on
Research Ethics 2008). Research should incorporate and value Indigenous
worldviews. Community elders and holders of collective knowledge should be
consulted and included as collaborators. At the same time, there should be an
explicit plan to protect traditional knowledge, recognizing the troubling history
of appropriation, commodification and unauthorized adaptation of Indigenous
knowledge that has occurred. Academics should respect requests by Indigenous
peoples to limit the publication of traditional knowledge.

Research should be centered around community


engagement
Communities are groups of people who share an identity or interests and have
the capacity to act or express themselves as collectives. Community engagement
is “a process that establishes interaction between a researcher or research team,
and the Aboriginal community.…it signifies a collaborative relationship”
(Government of Canada Panel on Research Ethics 2008). This goes beyond
consultation to the involvement of community members and leaders at every
stage of the research process, enhancing the authority of traditional governing
bodies (Dickert and Sugarman 2005). This takes time and involves many steps
(Lavery et al. 2010), including:

Characterizing and building knowledge of the community, its diversity


and changing needs
Clarifying the purpose and goals of the research and understanding
community perceptions and attitudes towards the research
Establishing relationships with formal, informal and traditional
leadership and building collaborative partnerships based on mutual
respect (Tilburt and Kaptchuk 2008)
Developing community assets and capacity
Maximizing opportunities for stewardship, ownership and shared control
by the community
Respecting dissenting opinions and ensuring the opportunity to hear them
Securing definitive permission/authority from the community

Research should be of social value


Research must be relevant to Indigenous communities and address needs and
priorities identified by the community. Knowledge gained should have the
potential to lead to new generalizable knowledge or improvements in health
(Tilburt and Kaptchuk 2008). This relates to a broader concern for community
welfare and contributes to the realization of collective rights. Importantly,
research “should enhance [communities’] capacity to maintain their cultures,
languages and identities” (Government of Canada Panel on Research Ethics
2008). Further, research should build capacity within the community by
improving the infrastructure available and the knowledge and skills of individual
community members.

Researchers should have the utmost respect for human


biological materials
Given the importance placed on biological materials in many Indigenous
cultures – and the troubling history of samples being collected and analyzed
without community consent – the objectives, roles and responsibilities, and
intended use of any samples collected should be clarified in a written research
agreement before any work is undertaken. Following OCAP principles, the
samples should be considered on loan to researchers and the rights to the
samples should be kept by the community. Any secondary use of such samples
would require community consent.

Interpretation and dissemination of research results


Indigenous communities should be the first to be informed of the results of any
research. Community members should have the opportunity to participate in the
data analysis, the writing of reports and presentations made, and should be able
to validate or express concerns about any results before dissemination. Notably,
discussions about intellectual property rights should occur well in advance of
publication.

F) Conclusion
Fanon wrote that colonized societies may be able to “resolve problems to which
Europe has not been able to find answers” (Fanon 1965: 6). Much can be learned
from Indigenous values, which represent a powerful alternative centered on
holism, a focus on community engagement, solidarity and social justice (WHO
2007b). “Values of collectivity, reciprocity, respect and reverence for Mother
Earth, are crucial in the search for a transformed society where justice, equity,
and sustainability will prevail” (Indigenous Peoples’ Caucus 1999).
Global health practitioners can embody these values in their work to reduce
health disparities (Horton 2006), particularly through a focus on addressing the
social determinants of health. This should occur through affirming respect for all
cultures, a focus on ecological renewal and sustainability, political
empowerment, legal and institutional reform, enhancing economic prosperity,
nurturing families and communities, and developing capacity within health and
social systems (WHO 2007b).

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PART II
Practice
Ethics and clinical work in
7
global health*
Athanase Kiromera, Jane Philpott, Sarah Marsh and
Adrienne K. Chan

Objectives
To highlight some of the key ethical considerations encountered in global
health when working in a clinical setting
To discuss the challenges clinical trainees face within global health

A) Introduction
Clinical work is perhaps the most common way in which health professionals
engage in global health. This occurs in a variety of ways, including short- and
long-term missions, work within humanitarian non-governmental organizations
(NGOs) as volunteers or through long-term employment, and within public or
private sector institutions as part of training initiatives and through bilateral
exchange programs. Engaging in patient care is often seen as an opportunity to
apply one's skills in a concrete and immediate way and to address the disparity
seen in access to health services. However, concerns exist about the potential for
negative repercussions when professionals from high-income countries (HIC)
perform clinical duties in low- and middle-income countries (LMIC), not just for
the patient, but also for her community, for the practitioner, and for the
organization to which she belongs.
This chapter seeks to explore key ethical issues in global health clinical work
through a series of cases based on our collective experiences as clinicians. We
draw on the principles of the classic bioethics framework of Beauchamp and
Childress (1989): beneficence (do good), nonmaleficence (do no harm), respect
for individual autonomy and a commitment to justice. However, in order to
explore some of the unique aspects of global health work, including cross-
cultural understandings of health and issues of distributive justice within
resource-limited settings, we also incorporate the framework of Pinto and
Upshur (2009) that has been developed throughout this book: humility,
introspection, solidarity and social justice (see Chapters 2 and 3).

Case study 7.1

Out of her depth

Melanie was a first-year resident from Canada, doing a one-month


elective in a rural hospital in Malawi. Before leaving Canada, Melanie
completed a short pre-departure training course that was mandated by her
program. She attended several lectures on working in low-resource
settings and communicated with more senior trainees who had done
similar electives. Melanie also contacted the physician who coordinated
electives at the hosting hospital in Malawi and discussed her objectives
for the rotation.
With a special interest in obstetrics and gynecology, the physician
agreed to have her spend her time with clinicians and nurses in the Labor
and Delivery ward during her placement. When Melanie arrived in
Malawi she had a brief orientation by her supervisor and was introduced
to the staff. She found the first few weeks difficult as all her interactions
with patients took place in the local language, Chichewa. Melanie often
felt guilty about being a burden to the clinician or nurse she was working
with, as one of the staff always had to act as a translator. Most days she
did not see a single patient who spoke English. Because of ongoing staff
shortages, she was often not supervised. However, she learned to work
independently and assist with many vaginal deliveries and Caesarean
sections. She noted that the techniques employed were quite different
from what she had seen in Canada.
Towards the end of her rotation, on a night while she was on call with
a clinical officer, Melanie saw a woman who had been in labor for two
days. The obstetrical nurse noted that the fetal heart rate was significantly
decreased and conveyed that an urgent Caesarean section was needed.
The clinical officer was called for several times but could not be reached.
The nurse turned to Melanie and said, “You should do the C-section,
otherwise this baby will die.” Melanie was incredibly scared. She had
never done a Caesarean alone and was worried that an attempt could kill
both the woman and the infant. However, she felt that inaction could also
cause the infant to die in utero and possibly harm the mother. Melanie
told the nurse that she did not know how to do a Caesarean section on her
own and encouraged her to call one of the other clinical officers, hoping
that they would respond.

Reflective questions
1 How should a clinician respond when they are asked to perform a task that
they do not feel competent doing? What factors would be important to
consider?
2 With the potential for harm regardless of what Melanie does, how should
she decide on what to do?
3 What are the possible long-term consequences for the patient, for Melanie
and for the hospital if she does or does not perform the caesarean? What
would happen if she does perform it, and there is a positive outcome?
4 Considering global health electives such as the one outlined, who
benefits? Who bears the burden?
5 What factors influence the balance between service and learning in a
global health setting?

B) Discussion of Case Study 7.1


This case illustrates a number of ethical issues, including concerns that are
specific to trainees engaged in global health and concerns about exceeding one's
capacity.
The number of trainees pursuing electives, international service learning and
placements in LMIC under the banner of global health is large and growing
(McKinley et al. 2008; Elit et al. 2011). Many trainees report facing significant
ethical challenges that they were ill-prepared to face (Conard et al. 2006; Einterz
2008; Dowell and Merrylees 2009). A number of factors influence this,
including the level of training of the student, their past experience with working
in resource-limited settings, whether they speak the local language and have
some understanding of the local context, if they have a local mentor and the
duration of the experience (Torjesen et al. 1999; Niemantsverdriet et al. 2005;
Federico et al. 2008). Pre-departure training appears to play some role in
mitigating harm, and seemed to provide Melanie with some background and
resources to employ when she was faced with this and other situations
(Anderson et al. 2012).
This relates to the responsibilities of the sending and hosting institutions to
trainees (Lancet 1993), a discussion that often does not take place. The scope of
practice for each trainee should form part of memoranda of understanding and
uphold local regulating bodies. Host institutions and local supervisors should
ensure the student enters a safe environment that is appropriate for his or her
level of skill and expectations, and should provide ongoing feedback and
evaluation to trainees (White and Cauley 2006; Elit et al. 2011). Sending
institutions should work to ensure trainees are prepared – including clinical skills
and language training – and have clear learning objectives that fit within their
course of study. They bear the ultimate responsibility for the actions of their
trainees, regardless of their location. Further, sending institutions must work
with host institutions to minimize the significant costs that outside trainees
entail. This includes the time taken away from training local students, translation
services and slowing the pace of clinics. The perverse situation whereby LMIC
countries are indirectly subsidizing the training of HIC health professionals has
been addressed in some organizations by providing a stipend to host institutions.
Even better, perhaps, would be having trained faculty from the sending
institution present to share the burden of teaching and to assist in building
relationships and the establishment of true partnerships (see also Chapter 9).
The case clearly highlights a situation that was beyond Melanie's skills and
experience, yet she needed to act. Clinical medicine often presents us with
situations that must be dealt with at the time and decisions that cannot be
deferred. Unfortunately, part of what structured the encounter is the assumption
that Melanie – simply by being from a HIC – would know what to do (see
Chapter 1). Appropriately, Melanie's first response was to show humility in
recognizing that she could not do the Caesarean section alone. Adequate
knowledge of one's level of training and the tasks that one can do independently
or with supervision is crucial (Ackerman 2010). Melanie followed the principle
of nonmaleficence, of particular importance for trainees who may have
significant gaps in their clinical skills but may be under pressure to intervene
given the dire nature of the situation. Importantly, this situation could have been
prevented. Emergency caesarean sections on an obstetrical unit would not be
uncommon. The staff shortages and high workload predictably led to a situation
where Melanie was given unexpected responsibilities, putting the life of the
patient at risk and causing significant distress to the trainee (Crump and
Sugarman 2008).

Case study 7.2

Cultural conflict

A young man is carried by his family into a busy emergency department


of a large city hospital in East Africa. The young man has been in a
motorcycle accident. He is unconscious, covered in vomit, and bleeding
from his mouth and ears. Torsten, a visiting fellow from a HIC,
determines that intubation is necessary. He calls out “Suction, please!”
The head nurse runs for the lone suction machine in the department,
which has just been used for another patient. New tubing and a plug are
required. There is no outlet near the patient's bed so he is wheeled to the
centre of the emergency department where the plug can reach a power
source. It is discovered there is no adaptor and the head nurse rushes off
to find one.
Gradually other items are gathered: Ambu bag, tubing, endotracheal
tube, oral airway. Nurses are asked to rapidly bring together tape,
intravenous (IV) lines and drugs. Slowly, an oxygen tank is brought from
across the room. A visiting professor appears to review with Torsten the
specifics of intubation while the patient receives oxygen. One pupil is
becoming fixed and larger than the other, and he vomits. The clinical
team scrambles to roll the patient on his side.
The suction is connected but the tubing is the calibre of an IV line and
can't adequately clear his mouth. A stylet can't be located so the clinical
team decides to do without. The laryngoscope blade arrives but the light
is not working. A flashlight is produced.
Unaware of the resource situation around ventilators, Torsten speaks to
the family about the need for intubation and asks if they will be willing to
ventilate the patient manually until a ventilator becomes available. They
agree. The drugs are given and the resident prepares to intubate. The
flashlight is held over his shoulder. The height of the bed is non-
adjustable and about eighteen inches lower than ideal. The airway is
suctioned, the light repositioned. It is difficult to pass the tube without a
stylet but he manages after several tries. The portable oxygen saturation
probe reads 85 per cent. The Ambu bag is connected and soon the probe
reads 98 per cent. The family is standing by, obviously worried. With the
tube in place, they breathe a collective sigh of relief. The family begins
to call around to collect the money for a CT scan, watching the rise and
fall of the young man's chest.
It took forty-five minutes to gather half of the equipment required for a
smooth intubation. The next challenge will be finding a ventilator, which
Torsten now realizes may not be readily available. In the meantime,
Torsten begins to express his frustration at the whole scene. He wonders
why they can't keep the proper tubing with the suction equipment. He is
angry about the way everything moved so slowly in the resuscitation
process. At the same time, the head nurse remarks to her colleagues that
these new visitors seem very demanding and they don't really understand
the way things are usually done.

Reflective questions
1 Identify the sources of conflict in this scenario and why each participant
appears to be dissatisfied with how it ended.
2 Why is the visiting fellow angry? What are the underlying assumptions to
his emotions?
3 Could the resident have prepared better for working in this context? How?
4 What are the potential positive and negative consequences of the visiting
fellow's work on the local health care providers?
5 How does decision-making happen in an emergency, and how should
decisions be made about the goals of care?

C) Discussion of Case Study 7.2


This case raises a number of related ethical concerns, including cross-cultural
competencies and concerns related to obtaining informed consent.
Important issues arise when one works in a new clinical setting and
encounters different perspectives and expectations regarding the meaning of
health, illness, treatment and the role of the health care system. It is not unusual
for a newcomer to notice different approaches or priorities in a system with
which they are not familiar. Torsten, similar to many HIC health professionals
who work for a short period in an LMIC, describes these differences in the form
of criticism. All too often this replicates a pattern whereby HIC professionals
feel they know the best way to accomplish something. As an outsider, it may
take many years properly to understand the reasons for the differences noted.
Cultural factors are clearly central. Much medical education scholarship in
this area has focused on improving cultural sensitivity or awareness. In this
conceptualization, the problem is a lack of exposure to the fact that people are
different. Taking this further, achieving cultural competence is framed as
addressing ignorance of other communities and peoples. However, this approach
has been criticized for lumping people together and rarely examining the
interplay between different identities. As an alternative based on critical
pedagogy, insurgent multiculturalism provides opportunities to look at one's own
biases, to challenge assumptions, to know people beyond labels, to confront the
effects of power and privilege (and how life is lived without them), in order to
develop a greater capacity for compassion and respect (Wear 2003). This deeper
and more critical view of medical training is perhaps best suited to global health
and achieving what has been called transnational competency (Koehn 2006).
It can be very difficult for a visiting trainee to understand why their clinical
goals are different from their hosts’. However, it is important to make
observations and ask questions in a manner that is respectful and non-
judgemental. Skillful communication across cultures is an essential area of
competence for all health care providers to achieve. An appreciation of different
values and health care goals is also required.
Informed consent in LMIC can be complex. Even local health practitioners
may struggle to obtain informed consent. The objective is to allow the patient to
make an informed decision based on options that are reasonable for that person
and appropriate given their context. Ultimately it is the patient who assigns
weight to the risks and benefits and who makes the decision to proceed or not.
Very often, patients do not truly understand their options and they may find
explanations to be confusing. Working in LMIC may expose trainees to patients
who do not know their rights. Patients might be afraid to challenge decisions, be
too intimidated to ask questions, or be unaware about alternative options (Crump
and Sugarman 2008; Hanson et al. 2011). Caring for such patients requires good
communication skills, adequate language capabilities or the use of a translator.
Furthermore, without an understanding of social and cultural norms it is difficult
for students to truly obtain informed consent. The patient's community situation,
family and level of education all have an impact on health and should be taken
into consideration when developing a plan of care (Greannam 2003; Einterz
2008).

Case study 7.3

Allocating resources: fifty pills for 100 people

Sangita is working at a rural district referral hospital in Zimbabwe. Her


responsibilities include managing the medical wards with fifty beds, as
well as staffing the outpatient HIV and TB clinic. She is expected to be
on call once every four nights, alternating with two general medical
officers and the Chief Medical Officer.
Although the health infrastructure had been strong historically, with
well-trained professional health staff, the health system is in the midst of
extraordinary challenges. In addition to the significant “brain drain” that
has occurred to neighboring countries, Europe and North America, there
is currently a strike in the public sector. Due to the economic situation,
there are persistent shortages of commodities (including commercial food
supply and drugs), fuel shortages and electricity blackouts. The district
hospital is run administratively by a missionary organization and so is
not prioritized to receive a regular supply of medicines from the
government based on their service agreement with the Ministry of Health
and Social Welfare. Stocks at the hospital, as well as salary top-ups to
support staff retention, are supported primarily by small private
donations from charitable organizations in Canada and Europe, and from
supplies brought in by volunteering physicians.
One night, Sangita's on call and is urgently asked to see a pediatric
patient who was admitted to the hospital during the day. She has just
finished admitting a twenty-five-year-old dehydrated, HIV-positive man
who is on antiretroviral therapy (ART) and cotrimoxazole preventive
therapy (CPT) and has a CD4 of 200 suggesting his immune system is
quite compromised. He presented with fever, myalgia, headache and
vomiting, and has a presumptive diagnosis of malaria, as his malaria
smear is positive. After rehydrating the gentleman, she has asked the
medicine nurse to see if there are any vials of IV quinine on any of the
wards in the hospital.
Immediately after, a nurse has asked Sangita to come immediately
because the child is seizing in the pediatric ward. A three-year-old girl
was brought in by her mother after five days of a febrile illness and
headache. She had been complaining of headache and nausea and was
transferred to the referral hospital yesterday, when she started to develop
decreased level of consciousness and jaundice. She was started on broad-
spectrum oral antibiotics and sulfadoxine-pyremethamine plus
chloroquine in a rural health post for possible malaria and sepsis of
unknown origin. Upon arrival at the hospital, she was obtunded and so
the clinical officer during the day started the child on IV antibiotics due
to possible meningitis. The lumbar puncture results that came back look
normal with zero white blood cells. Chemistry is not available. Gram
stain and India ink are negative. The child's HIV status is unknown
although the child's mother is HIV-positive and on antiretroviral therapy.
Sangita assesses the child and is able to give her diazepam to stop the
seizures, however she is extremely concerned that the child may have
cerebral malaria.
The nurse from the medicine ward comes to find her and tells her that
there is only enough IV quinine for a single individual. The only other
antimalarials in hospital are oral sulfadoxine-pyramethamine and
chloroquine, to both of which the fellow is certain there are high levels of
Plasmodium falciparum resistance. Sangita knows from experience that
she will be unable to obtain IV quinine from other health facilities or
NGOs, due to the absence of fuel. When she assesses the child, her pupils
are fixed and dilated and she is decerebrating; she strongly suspects the
prognosis is poor due to anoxia. She decides to give the quinine to the
adult male, who recovers and is discharged in a day, and palliate the
child. The child dies in the morning.

Reflective questions
1 What are the key ethical principles that one considers when making
decisions about limited resources? How are conflicts between principles
addressed?
2 How would you approach this decision about who receives a potentially
life-saving resource? What would be the factors that you would consider?
3 This scenario occurs in a certain context. Is there a role for health
professionals in addressing the broader issue of social inequity? Is it a
duty?
D) Discussion of Case Study 7.3
This case illustrates a scenario faced by many global health practitioners and the
day-to-day reality of many health systems around the world. When two or more
individuals require a limited resource, who should receive it? Theories may
provide some guidance (see Chapter 2). At first glance, utilitarianism is
intuitively appealing in making health resource allocation choices and seems to
underpin the clinical decisions made by Sangita in this situation. Physicians
make decisions like this every day when they allocate clinical resources or
prioritize patients, whether it is triaging patients in an emergency room, or
deciding on transfers of critically ill patients into intensive care unit beds.
Decisions are made in clinical settings by finding a balance between the greatest
need and also the potential for greatest benefit. The goal of achieving maximum
good, whereby good is equivalent to health for the greatest number of people,
seems to fit with our intuitive notions of justice for all (especially the
marginalized) and our moral obligation. It seems to be a good thing to want
what's best for human beings as a whole and also be concerned with public
health outcomes for overall improvement of wellbeing.
The problem with consequentialism is that there is no moral obligation for the
equal distribution of how interventions to improve public health are shared,
which seems inherently unfair. The only moral obligation for a utilitarian is the
greatest good for the greatest number of people, and as such, a utilitarian is not
concerned at all with equal distribution of resources or how things are shared,
merely with what increases the total good. Sangita's painful choice is a reminder
of the choices that clinicians are forced to make that seem to go against the
principles of justice, and highlights a physician's obligations to his or her
patients that go above the pressing need of the immediate clinical dilemmas that
we face in practice.
Apart from examining consequences, physician advocates should be
concerned with the just and equal distribution of goods, because it is important
that individuals are afforded the same benefit and burden, and fairness is to have
equal treatment of all individuals in a just society, while minimizing in
disparities in health. Sangita's obligations are not simply to following ethical
principles around immediate decisionmaking around the case, but also in going
further to address root causes.
Case study 7.4

Medical humanitarianism and ethics

Max has worked in Haiti for five years as a program coordinator for a
social justice and health non-governmental organization. For over twenty
years this organization has worked in partnership with the Ministère de la
Santé Publique et de la Population (MSPP) to provide primary health
services to the rural poor of central Haiti.
On January 12, 2010, the country experiences a massive earthquake
near the capital, Port-au-Prince (PaP). At the time, Max is at the NGO's
headquarters, sixty miles north of PaP. Eight days later, Max is sent to a
large public hospital supported by his organization to help with
coordinating the response. Earthquake victims have overwhelmed the
hospital. There are over 200 patients requiring surgery, more than ninety
with compound fractures and crush injuries. Much of the hospital staff is
unaccounted for, assumed to be missing, searching for loved ones or
involved in other emergency response efforts in PaP. A team of volunteer
orthopedic and trauma surgeons, anesthesiologists, nurses and operating
room (OR) technicians from the academic medical system of another
country has been on site for several days with little accompaniment. The
hospital is unaccustomed to foreign surgical teams, and Max has been
sent to facilitate because integration of the short-term expatriate
specialist teams has been a challenge.
The visiting team has reorganized the ORs and post-operative space to
meet their needs, without much involvement of the existing staff. Foreign
volunteers and local staff are working almost entirely independently,
with little interaction or communication. The scene is chaotic and the
hospital staff, expatriate volunteers, patients and family members are
exhausted and increasingly frustrated and angry. Several patients have
refused amputations from the volunteer team and have left the hospital.
Upon arrival, Max is immediately bombarded with complaints from all
parties. The visiting team is working tirelessly, but quickly experiences
both physical and emotional burnout. They are frustrated by the lack of
infrastructure and their inability to communicate with local staff and
patients. They perceive a lack of sense of urgency, difference in work
ethic and lack of organization. They would like to run the OR twenty-
four hours a day, but find no support from the Haitian surgical team and
hospital administration. They are disturbed that patients are leaving the
hospital rather than undergoing what they consider life-saving surgery to
amputate limbs. They are concerned that they are unable to convey the
appropriate information to patients and are therefore failing to do their
job. They are also uncomfortable that the Haitian nurse-anesthetists are
recommending regional versus general anesthetic, claiming that patients
are requesting not to be put to sleep for fear that they will not wake up or
that their limbs will be amputated without their consent.
The Haitian team is also demoralized. Most have lost friends and
family members and many have lost their homes. There is a shortage of
skilled providers to meet patient needs. The frequent explosions of anger
and frustration directed at them by the visitors, and the expectation that
the existing system needs to be changed, upset the local staff. They are
opposed to operating the ORs twenty-four hours a day because of a
severe shortage of skilled nurses to provide post-op care to critical
patients. They voice particular concern around autonomy and informed
consent with respect to amputations of crush-injured limbs. The visiting
medical team seems unaware that rehabilitation services and limb
prostheses are unavailable for most in Haiti. Local staff know that
patients are terrified of amputation and feel that it might give them a life
that they would rather not live as a burden to their community. Patients
and their families express to Haitian staff that they feel that the care
provided by the foreign physicians is substandard.
Max realizes that the conflict is reaching a boiling point which, if not
resolved, will be harmful to patients and their immediate and future
surgical and rehabilitation needs, and to the system, which will need the
support and collaboration of multiple partners in order to provide
services under the immense stress caused by this disaster for years to
come.

Reflective questions
1 Why is conflict on teams with shared goals occurring? What is underlying
these tensions?
2 What is the role of local perspectives? What happens when there is
conflict between the views of the local population and the views of the
outsider clinician?
3 In the setting of a humanitarian disaster, is there a moral obligation to
ensure there is adequate post-operative care available as part of short-term
medical relief?

E) Discussion of Case Study 7.4


The medical response to the earthquake in Haiti highlights key ethical issues
common to humanitarian aid and well outlined in the literature (Hunt 2008). The
earthquake catalyzed a rapid response from actors previously unengaged in
medical humanitarian work, but whose skills were critically needed in the early
response to the disaster. The catastrophic event also occurred in the setting of
existing but now incapacitated physical and human resources for health
infrastructure. In Haiti, socio-political factors that existed prior to the event also
determined ‘structured health risks’ that the humanitarian crisis exacerbated
(Pinto 2010; Chung 2012). Clearly the volume and urgency of needs in Haiti
were elevated post-earthquake, which required health workers to work extremely
long shifts. In settings of disaster relief, where expatriate teams and local teams
work closely in a high-pressure situation, differences that exist around cultural
frameworks in how health, wellness, disease and disability are understood and
experienced can be exacerbated (Hunt 2011).
Specifically, carrying out multiple amputations highlighted the tension
between local and foreign views of best practice (Etienne et al. 2011). The
expatriate volunteers felt they were doing the right thing for patients, particularly
given limited resources. Local staff had a different understanding of illness and
disability, and were concerned about the long-term quality of life of patients.
Barriers, not the least of which is language (Bjerneld et al. 2004), can prevent
team members from responding to the cultural values and needs of patients and
their understanding of disease. In Haiti, the loss of a limb appeared to be worse
than death or dying because of the burden that amputees may be to their family
and community. In spite of the clear short-term benefit, the patient perceives that
they will likely become malnourished, maltreated and infected, may sustain
further injury, and will face discrimination within the resource-stretched health
care system, as well as encounter difficulties in procuring gainful employment.
Many short-term surgical teams did not take into consideration that post-
operative care would be a major issue, with very limited rehabilitation services
and access to prosthetics compared with what one would expect in a resource-
rich setting (Iezzoni and Ronan 2010; Landry et al. 2010).
This is not to suggest that a clinician should equate “first do no harm” with
“first do nothing” (Morgan 2007). But it is important that “dominant principles
sometimes need to be prioritized differently to be relevant to the context” (Hunt
2009), and the use of local role models is key. If unavailable, transnational actors
such as Max may serve an important purpose. From an organizational
perspective, imbalances of power that are already inherent in health care
“hierarchy” are amplified in settings like Haiti post-earthquake. Pinto (2010)
writes that the humanitarian impulse informing the international response may
serve to reinforce further the historical relationship between wealthy countries
and Haiti, and may fuel continued underdevelopment. The nature of
organizations and individuals that choose to work in a vulnerable setting can
easily, without critical self-reflection, amplify neocolonial power imbalances
(Hunt 2011).
Finally, workers involved in humanitarian responses have an obligation to
find and formalize consensus around policies, coordination and support to
decrease ambiguity and expectations in these situations. Examples of post-event
initiatives to address the concerns that arose from the Haiti earthquake include
the development of “Consensus statements regarding the multidisciplinary care
of limb amputation patients in disasters or humanitarian emergencies” by
multiple stakeholders (Knowlton et al. 2011) to guide practitioners in similar
situations in the future, as well as a proposal put forth by Médecins sans
Frontières for the formation of an Emergency Surgery Coalition (ESC) of
organizations with extensive experience in delivering care in humanitarian
emergencies, which could deploy rapidly and be involved in pre-disaster
preparation and training, inter-agency coordination and supply chain and
logistics, and monitoring and evaluation post-disaster (Chu et al. 2011).

F) Conclusion
Adopting a critical approach to clinical work both before, during and after
experiences is essential for practitioners to continue to work in resource-limited
settings and in humanitarian crises. Taking the time to think about the complex
ethical dimensions of working in these settings can prevent health workers from
causing unnecessary harm, and also enhance relationships between health
providers and their colleagues in these settings, as well as with patients.
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Further reading
Bhat, S. (2008) ‘Ethical coherency when medical students work abroad’, Lancet,
372: 1133–34.
Crump, J.A., Sugarman, J. and Barry, M. (2010) ‘Ethics and best practice
guidelines for training experiences in global health’, American Journal of
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developing country: ethics and utility’, Journal of Surgical Education, 66: 59–
62.
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of medical education: evidence for cross-cultural exchanges’ Academic
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* The authors wish to acknowledge the contribution of case study content from
Dr. Cheryl Hunchak, Global Health Emergency Medicine, University Health
Network, University of Toronto, Canada.
Ethical challenges in global
8
health research
Ghaiath Hussein and Ross E.G. Upshur

Objectives
To discuss the ethical principles underlying global health research
To discuss the importance of community engagement and respect for
local community process in global health research

A) Introduction
It is well recognized that health research is becoming more “globalized”. While
the large majority of clinical trials are led by teams based in high-income
countries (HIC), health research now takes place in many low- and middle-
income countries (LMIC). For example, health research infrastructure is rapidly
developing in India, South Africa and Brazil. In a recent study, twenty-four of
the twenty-five countries demonstrating the fastest growth in clinical trial sites
were in emerging economies (Thiers et al. 2008). In parallel to the increased
capacity for research, ethical review and oversight of this research is growing,
but has not kept pace. As a report in the British Medical Journal noted:

…of the 100,000 clinical trials carried out around the world each year, some
10 per cent occur in developing countries, where patients are readily
available, regulatory requirements are less strict, and costs are lower. By
2010 European and US drug companies are expected to spend $1.5bn
(#0.8bn; €1.1bn) on trials in India alone. However, many developing
countries, especially in Africa, do not have the logistical support, financial
resources, or trained personnel to establish effective ethical committees or to
supervise the research being carried out among their citizens.
(Watson 2007: 1706).
The emergence of interest in global health research is tied to issues related to the
conduct of certain trials in LMICs. Considerable controversy arose over placebo
controlled trials in Africa, particularly the ACTG 076 trial to prevent mother-to-
child transmission of HIV (Angell 1997). Some argued that using placebos when
an established effective intervention was available, was unethical because it
subordinated the welfare of participants to the goals of science. Others argued
that placebo controlled trials were justified on the basis that participants were
unlikely to be able to access effective preventive therapy in the location where
the studies were being conducted. Furthermore, such trials presented the most
expeditious means of determining whether such therapy was feasible in
comparison with the local standard of care (Lurie and Wolfe 2007).
Global health research also raises issues concerning global justice, what
constitutes fair benefits to individuals and communities participating in research,
individual-level informed consent in communally based societies, and the
importance of community engagement in health research. It has stimulated
efforts to build capacity for ethical oversight in LMICs through training and
educational programs.
The extent of the ethical challenges posed by global health, particularly in
light of the discovery of unethical studies of syphilis transmission in Guatemala,
prompted President Obama to direct the Presidential Advisory Committee to
examine the current status of ethical standards of global health research. The
report, Moral Science, outlines several key challenges that researchers may face
in the conduct of global health research (Presidential Commission for the Study
of Bioethical Issues 2011).
In this chapter, we will provide a brief historical introduction to the evolution
of research ethics, outline its key principles and provide a framework for global
health research, and discuss the importance of securing local review. The
specific focus will be on contextual issues arising from research involving
communities in LMICs that emphasize the importance of community
engagement, particularly on research involving human subjects. Thus we will
not, in this chapter, address ethical issues involved in population-based research.
Also, we will not discuss the particular challenges raised by research in
humanitarian responses.

B) Historical background to the ethical oversight of


research
Modern research ethics has its origins in the Nuremburg trials, which took place
shortly after the end of World War II. At these trials, it came to light that
medical doctors subjected non-consenting humans to a variety of experiments,
the vast majority having no scientific merit. These experiments inflicted untold
suffering and death on those involved. As a result of the trials, the Nuremburg
code enshrined the importance of voluntary consent as a sine qua non of any
research involving human participants. The German and Japanese experiments
were not isolated incidents. The recognition that health research in humans poses
risks and that these risks were often not well communicated to participants was
also apparent.
In subsequent decades, attention to ethical aspects of human subjects research
increased. In 1964, the World Medical Association issued the Declaration of
Helsinki as “a statement of ethical principles for medical research involving
human subjects, including research on identifiable human material and data”
(World Medical Association 1964). Henry Beecher also published an influential
paper in 1966 that outlined ethical flaws in a number of studies (Beecher 1966).
In the early 1970s, in the United States, the Tuskegee syphilis studies were
exposed, where African American men infected with syphilis were studied long
after it was established that penicillin was a safe and effective treatment.
Beecher's paper and the Tuskegee revelations were influential in the creation of
the Presidential Commission that created the Belmont Report. The Belmont
Report identified three core ethical principles: respect for persons, beneficence,
and justice as fundamental to research on human subjects (National Commission
for the Protection of Human Subjects of Biomedical and Behavioral Research
1979).
There are now a wide range of guidance documents on ethical standards in
research. A list of selected guidelines can be found at the end of this chapter.
There are many structural similarities to these varied guidelines, but, more
importantly, there is considerable variability and lack of harmonization across
the globe. Greater efforts at consistency in guideline documents and in research
ethics review is a major focus of current efforts in global health research.

C) Principles of research ethics


The ethical requirements for clinical research contained in the many guideline
documents have been admirably summarized by Emanuel et al. (2000).
Additional considerations for research in LMICs were added in 2004,
emphasizing the importance of building collaborative partnerships (Emanuel et
al. 2004). The principles have been adapted by the international humanitarian
organization Médecins Sans Frontières as a guidance document for researchers
designing studies, and by its ethics review board to assess the quality of the
research (Schopper et al. 2009). These are outlined in Table 8.1.
Core to ethical research, regardless of where the research takes place, are
concerns for the scientific validity and social value of the research. Poorly
designed research will bring no benefit to humanity, squanders scarce resources
and may place participants at needless risk. The criterion of social value directs
researchers to be sensitive to the needs of populations. Fair subject selection and
consideration of the balance of harms and benefits will reduce exploitation.
With respect to the avoidance of exploitation, research in LMICs directs
research teams to think very carefully about ancillary care obligations. Research
studies, particularly clinical trials, are designed to answer a specific hypothesis
about the effects of particular interventions. Enrolled research subjects and the
communities in which they live may have substantial unmet health needs,
outside the scope of the research project, that will raise questions for researchers
regarding the extent of their obligation to provide care. The studied communities
may lack necessary services such as drinking water, basic health care or trained
health care providers. Communities may expect international researchers to
provide them the services they lack.
Table 8.1 Ethics framework for medical research, Médecins Sans Frontières
Principles Benchmarks
Collaborative Engage in partnership with national and/or
partnership international research institutions as relevant
and appropriate.
Collaborate with local and national researchers
and health policy-makers to determine the
importance of health problems; assess the value
of the research; plan, conduct and oversee the
research; and integrate the results of the
research into the health system as relevant and
appropriate.
Respect the community's values, culture,
traditions and social practices.
Involve the community in which the study takes
place (the ‘study community’) through a
consultative process in designing the research,
in its implementation (advice on problems
occurring during study, feedback of
intermediate results) and in assessing how
research results may be made beneficial.*
Contribute to developing the capacity for
researchers and health policy-makers to become
full and equal partners in the research enterprise
where possible.
Share fairly the financial and other rewards of
the research where possible.

Social value Specify the beneficiaries of the research.


Assess the importance of the health problems
being investigated and the prospect of value of
the research for the beneficiaries.
Devise and implement mechanisms to enhance
the social value of the research by:
– disseminating the knowledge gained locally,
nationally, regionally and internationally
– making drugs or interventions tested and found
to be effective available to the study community
through advocacy, by involving policy-makers from
the start, and by staying long enough after research
ends to ensure its application where possible.
Prevent supplanting the extant health system
infrastructure and services.

Scientific validity Ensure the scientific design of the research


realizes social value for the primary
beneficiaries of the research.
Ensure the scientific design realizes the
scientific objectives while guaranteeing
research participants the health care
interventions to which they are entitled (this
includes a sample size sufficient to reach
objectives).
Ensure the research study is feasible given the
social, political and cultural environment and
with sustainable improvements in the local
health care and physical infrastructure.

Fair selection of study Select the study population to ensure scientific


population validity of the research.
Select the study population to minimize risks of
the research.
Formulate clear inclusion and exclusion criteria.
Identify and protect vulnerable populations.

Favorable harm-benefit Assess the potential harms and benefits of the


ratio research to the study participants.
Assess the harm-benefit ratio for the
community.
Involve the community in assessing potential
harms and benefits for study participants and
the community at large.

Informed consent Involve the study community in establishing


appropriate recruitment procedures and
incentives for the participants.
Ensure consent procedures are acceptable
within the study community (may include
supplementary community and familial consent
procedures).
Ensure the method of informed consent (written
versus oral) is appropriate for the study while
respecting a study participant's right to be fully
informed of all implications of their study
enrolment.
Disclose information in culturally and
linguistically appropriate formats. This implies
that:
– any information given during the informed
consent process must be pre-tested with people of a
similar cultural and educational background as
potential study participants
– the information provided on the consent form
must be in simple language, avoiding technical
terms
– the consent form must be translated into the local
language and then back-translated into the
‘international’ language used to verify the accuracy
of the translation
– consent is obtained in culturally and
linguistically appropriate forms** and mistakes
corrected.
Ensure participants fully comprehend the
research objectives and procedures. If needed,
the person should have time to discuss the
information received with members of the
community or family before deciding on
consent. In addition, community information or
‘schooling’ on the research to be done, and on
the purpose and process of seeking informed
consent, will raise pre-enrolment awareness and
help people decide if they want to participate.
Obtain consent in culturally and linguistically
appropriate formats.**
Ensure potential participants are free to refuse
or withdraw from the research at any stage
without penalty.
*‘Community’ can be described in many different ways. Most commonly, community is described as a
geographical, functional or socio-cultural entity with characteristics such as shared interests and
experiences, values, common fate or cultural affinity. Sometimes a community is already organized, for
example in the form of village committees. However, care should be taken regarding their real capacity to
represent the community. In addition, official community groups can be part of government, be repressive
and coercive and deny human rights, severely interfering with the voluntary nature of participation. In some
conflict-ridden environments, the social structure has been destroyed. In these contexts, it must be carefully
explored who best represents the interests of the population.
If it is not possible to have a well functioning community body throughout the research process, at a
minimum the community must be consulted during the planning stage of the research, consulted on an ad
hoc basis while the research is being done, and informed about the results in a structured manner at the end
of the research. It is not enough to carry out this dialogue by consulting local staff, as they may not really
represent the community. One option would be to add a few current or past patients to the group planning
the study to ensure the objectives, approach, etc., are adequate and adapted to the local context.
**In some settings, participants have refused to sign a consent form. Signing a consent form is not
mandatory, but serves as a back-up proof for the principal investigator. If a person refuses to sign, but gives
oral consent, the researcher should keep a written record that the patient has been informed, has understood
and agreed to participate, but has refused to sign.

Researchers need to be clear from the very beginning about what they intend
to do and exactly what “services” they may be able to provide. They should
emphasize that these services are temporary, and that the community may need
to work on making them more sustainable. Whether there is a moral duty on
international researchers to help the studied communities has been debated in the
literature (London 2005; Hawkins and Emanuel 2008). What researchers are
capable of providing should be anticipated in advance, and an agreed-upon
strategy with the community should be negotiated.
Lavery and colleagues have created a series of case studies with commentaries
that illustrate the nuances of the application of ethical principles in actual
research in LMICs (Lavery et al. 2007). It is important to note, as per Chapter 3,
that there will inevitably be disagreement about how the principles should best
be weighed. As noted above, there is still much work to be done to explicate
more fully the extent of duties and obligations of researchers to individuals and
communities involved in research. Judgment will always be required. However,
Table 8.1 provides a framework that articulates the relevant, non-ignorable
ethical considerations. As Emanuel et al. (2004) write:

Disagreement on the balancing of the various benchmarks does not


necessarily make one assessment ethical and the other unethical. Rather, it
may reflect different but legitimate ways of resolving competing ethical
claims. In fact, this framework can help narrow disagreements and elucidate
the different underlying views.
(Emanuel et al. 2004: 936)

D) Contextual considerations in research in LMICs


Research is more than just its conduct. Research affects, and is affected by, the
context in which it is conducted. It is crucial for the researcher to be aware of the
context in which her research is being conducted to avoid unnecessary risks,
delays, or even cancellation of the whole study.
The importance of receiving local ethical review
Researchers must be aware of local research ethics boards and secure approvals
before the commencement of research. This may mean a substantial amount of
pre-departure preparation, as approval from the sponsoring organization or
university may be required as well. It is the responsibility of the researcher to be
aware of all regulations and permissions well in advance of commencement of
the research. Seeking ethical approval from the local authorities, or ethics review
committees, if present, may be seen by researchers as a bureaucratic step to get
the job done. In fact, it may be so, but it serves another important contribution to
sustainable development. If the local health authorities are being asked
frequently for ethical approval of research proposals and not just administrative
approval, this would raise their awareness of the importance of establishing an
ethics review body, or activate it if it is already there. It is quite well established
in the literature that most LMICs have reduced capacity to review and approve
research (Glickman et al. 2009). Unfortunately, this situation has been abused by
some international researchers and companies to conduct clinical trials on
vulnerable people without proper consent or proper research oversight.

The importance of community engagement


Community engagement is increasingly recognized as an essential component of
research in LMICs (Tindana et al. 2007). The recent report of the Presidential
Commission for the Study of Bioethical Issues (2011) listed as one of its
fourteen recommendations the need to promote community engagement. As yet,
there are no agreed-upon standards for the optimal means by which researchers
should engage communities. The ethical basis of community engagement lies in
respect for communities and their cultures. It seeks to create an ongoing dialogue
between communities and researchers. Furthermore, it should allow for the
integration of “community norms, beliefs, customs, and cultural sensitivities into
research activities” (Presidential Commission for the Study of Bioethical Issues
2011: 11). Tindana et al. (2007) have identified the following goals for
community engagement:

To ensure the relevance of research


To assess whether relevant research is culturally and practically
acceptable in the context it is intended
To ensure that community disruption is minimized, e.g. avoiding the
displacement of medical staff from pressing local needs
To avoid exploitation by ensuring fair distribution of the benefits of
research
To take into account the ethical hazards that may be part of the social,
economic and political landscape of the community

An important dimension of community engagement is the return of the results of


research (see also OCAP principles discussed in Chapter 6). If research is to
contribute to social justice, the body of knowledge created should be utilized for
the benefit of the people. This contribution is never accomplished until the
results of the research conducted are shared with relevant stakeholders. The main
focus of many researchers is to share their research with their professional
colleagues through conferences and peer-reviewed publications. The studied
communities are less frequently thought about, especially if we consider that
these communities are far away from the researcher who has conducted the
research for a purpose, which is usually fulfilling an academic or a professional
commitment. However, it could be argued that there is an ethical obligation on
the researcher to share the results of the research with those who were studied.
First, this is usually a part of the consent given by the research participant, and it
is a logical expectation of the people who were studied. This should be
considered as part of the collaborative partnership. Studied populations expect
some benefit from their contribution to research, though they may expect
tangible results such as better services; sharing the results is the least the
researcher can provide to the studied communities.
There may be technical and ethical issues attached to this duty. Technically,
researchers may have signed contracts with their funding agencies or the
academic institutes that prohibit them from sharing any results without prior
written permission from the sponsors. There are also issues related to how to
share the results, and with whom. Are they best shared with the local health
authorities, which will make better, wider-scale use of the results, or with
community leaders, or with individual participants?
Practical approaches to sharing of results with the communities may include
the following.

Prior to the research, the researcher should include the data-sharing plan
and have it approved by the research funders or sponsors. This plan
should be clear about which results will be shared, when, with whom,
and how.
The consent should be clear about the sharing of results, even in cases
where the researcher will not be able to share the results with individual
participants or even community leaders. Participants should be aware of
this, and should approve waiving their right to know the results.
The researcher should collect the contact details of the local health
authorities relevant to the area of research, the leaders of the studied
communities, and the individual participants. The latter should not be
part of the data-collection tool unless needed methodologically.
Researchers do not have to share the results by themselves. This could be
done through local leaders or NGOs working in the studied community.
However, they should ensure the necessary confidentiality of this
information, especially if data are identifiable.
The inclusion of local co-investigators is usually advisable, and
sometimes required by some countries. One of their tasks is to share the
results with their communities in a way that is culturally appropriate.

Informed consent
Informed consent remains an important element of any research involving
human subjects. For consent to participate in research to be ethically valid, it
needs to be obtained from a person who is competent to respond freely and
voluntarily after being fully informed about the relevant information related to
the study in a language that she or he understands. The participant should have
been given the chance to ask questions and have them answered clearly. Usually,
but not necessarily, consent is obtained in writing and signed by the participant.
Implementation of the standards of consent to research by international
researchers in the setting of LMICs is challenged by a number of factors. First,
international researchers frequently have little or no knowledge about the
country in which the research is conducted. This may lead researchers to seek
translation of the consent forms and the data collection tools, especially
questionnaires. The use of translators itself poses a set of ethical issues,
including the extent of precision of the translation – to what extent the
participant was really informed and the confidentiality of the information given
by the participants, especially in smaller, rural communities where most people
are relatives.
Second, the relatively higher rates of illiteracy among vulnerable groups and
in rural areas where there is less access to education, among other basic services,
makes it harder for participants to comprehend the translated consent. Particular
efforts may be required to assure comprehension. Another important cultural
factor that would affect obtaining consent is related to signing forms. Being
asked to place one's signature on papers brought by strangers is treated by
suspicion by many cultures that have suffered from experiences with fraud.
Third, consent may be hard to obtain because of language barriers and the
strong family hierarchy that may be dominated by male members of the family.
Addressing the role of the community leader or head of household in the
decision of a potential participant to participate (or not) should be managed
delicately to avoid unintentional offense to the leader and to ensure the rights of
the participant are respected. If a man tells his wife or daughter to participate in a
research study, you may still ask her in private if she really wants to take part.
The researcher should reassure her that whatever she decides will not be
conveyed to the head of the household.
Fourth, one must be careful and thoughtful about the use of incentives.
Researchers need to avoid direct cash payments, unless justified by
compensation for lost working hours and travel costs. This is not the norm in
many Western countries, where participants are paid at the end of the research.
However, in many LMICs people will volunteer for research and may even feel
offended if they are offered payment for something that is to benefit the
community.
Fifth, access to communities may rely on some form of community consent,
or assent that may be granted only by the community leader(s). Researchers will
need their assistance for official permissions or approvals required for research.
For international researchers, overcoming all these factors when obtaining
consent in the context of LMICs is not easy; however, some practical advice
may include the following.

Have the consent forms and other data-collection tools (e.g.


questionnaires) translated and back-translated by a colleague of the same
country in the researcher's home institution before starting the study.
Recruitment of translators and data collectors from the studied
community should be preceded by proper training on consent and data-
collection tools.
A very clear and strict confidentiality agreement should be attached and
signed by local data collectors when signing the research contract.
Prior to data collection, the translated consent and questionnaire should
be piloted with some lay members of the population to assess their
appropriateness.
If participants refuse to sign the consent, it may be useful to give them
time to consult the community leader or anyone they trust. Providing
them a copy of the consent with the researcher's contacts and affiliations
would be reassuring.
Train better-educated community members as data collectors, focused
not only on the methodology but more importantly on ethical issues,
especially those related to confidentiality.

Respect for communities: social structure, political and


security considerations
Southern hemisphere communities may embody binding sets of family and tribal
values. There may be a strong family and tribal hierarchy, where older persons
are given dominant roles in decision-making. Although this picture is gradually
diminishing due to the Westernization and industrialization of many of these
communities, many people still retain these values.
Researchers may need to be wary of the potential influence of community
leaders who may insist on having particular persons or households selected.
Researchers need to talk to the community leaders and explain to them in simple
terms what sampling is, why it is needed, and how it is done. It is important to
explain that selected members or households will not gain extra benefit from
such involvement, apart from the general benefit for the community.
Many LMICs have experienced political instability due to historic and
contemporary interference by external forces and struggles over power and
resources by internal forces (Hussein 2009). In such environments, where people
are less free to share their opinions and concerns, community members may be
hesitant to express themselves. Moreover, such communities may become
polarized and divided because of competing political allegiances. Tensions
between groups may become violent, especially during times of transition.
Access to the study area may be restricted. This may either delay the start of
the research or adversely affect sampling. Researchers should plan for such
instances when they know about any political or security instability in their
suggested research area. Team members may be at increased risk and this could
lead to serious implications for the progress of the research. Data collectors may
be abducted or seriously threatened if they enter the research community at the
wrong time or by the wrong route. Depending on the anticipated severity of the
condition, the researcher needs to justify imposing such a risk on herself and on
the research team. The team needs to have an evacuation plan in place if things
become unstable. Data collectors should be informed of this and other
contingency plans.
Many of the above-mentioned ways of conducting research in global health
seem to be beyond the scope of the individual researcher. However, there are
some practical approaches that could be taken by individual researchers before,
during and after the conduct of research.

E) A checklist for researchers

Before conducting research


The researcher should choose research questions that are relevant to the
studied population. This would lead to the results being more usable at
the end of the study in assisting the local development of the studied
community. Research that is of high social value will support the
building of collaborative partnerships.
The researcher should have a local co-investigator(s) in the project. This
will help local researchers build, or improve their capacity to conduct
research.
Prior communication with the studied communities before the start of the
study has logistical, technical and ethical significance. Logistically, it
sets the stage for easy access to the community to be studied, which is
technically important to improve sampling, and to be more ethically fair.
This communication can be utilized to provide some education about the
importance of research in general, not only the intended study. This
would raise the awareness of communities about the importance of
research, and make it easier for the researchers to be accepted.
Researchers should plan in advance what benefits can and will be shared
with the studied communities. The concept of benefit should go beyond
traditional, product-oriented benefits to more sustainable benefits. This
would fulfill the requirement of fair subject selection and address issues
related to harm and benefit.
Consent issues should be addressed in terms of cultural appropriateness
and accuracy of translation.

During the conduct of research


The study should include a training component, where local data
collectors develop their capacities in data collection and beyond. This
would reinforce collaborative partnerships.
The research should include training of local co-investigators, not only
on competencies needed to achieve the particular project, but to include a
wider scope of relevant skills and competencies.
The research can also include training and/or health education
components for the studied communities. This is a sustainable benefit
from which the whole community benefits, not only those involved in the
study.
Obtaining consent may seem to be only an ethical (or regulatory)
prerequisite for research. In reality, it can serve to be much more. Taking
proper consents includes sharing of knowledge as well as asking
questions. The exposure of the people to this small element of democracy
will help them become empowered by establishing a trend of having the
right to ask questions and to have them answered clearly. Moreover, the
people may be practicing their right to object or to say no for the first
time in their lives. Only a free community can have truly sustainable
development.

After the end of research


Research results and recommendations should be shared, especially
results that can be utilized within the contexts of the studied
communities.
Communication with local researchers, health authorities and community
leaders should be maintained.
Colleagues at one's home institution may be encouraged to conduct
further research and to join the existing collaboration.
Proper care or referral to better health facilities may be offered for
participants who were found to have diseases requiring special care.
Researchers can act as advocates for the causes related to health research
in LMICs.

F) Conclusion
In this chapter we have argued for the importance of researchers in global health
understanding their ethical duties and responsibilities. They must be aware of
international, national and local guidelines and regulations regarding the conduct
of their proposed research. The process of securing appropriate and necessary
approvals is vital for the ethical conduct of research. It is essential that
researchers know as much as possible in advance about the context in which
they will be conducting research. Community engagement and collaborative
partnerships are vital components of the research process, as is discussing and
negotiating benefit-sharing and the return of results. Ethically sound research is
the best research, and is rewarding to both researchers and participants.

References
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ethical?’, Journal of the American Medical Association, 283(20): 2701–2.
Emanuel, E. et al. (2004) ‘What makes clinical research in developing world
ethical? The benchmarks of ethical research’, Journal of Infectious Disease,
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globalization of clinical research’, New England Journal of Medicine, 360:
816–23.
Hawkins, J. and Emanuel, E.J. (eds) (2008) Exploitation and Developing
Countries: The Ethics of Clinical Research. Princeton: Princeton University
Press.
Hussein, G. (2009) ‘Democracy: the forgotten challenge for bioethics in the
developing countries’, BMC Medical Ethics, 10(3).
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Casebook. New York: Oxford University Press.
London, A. (2005) ‘Justice and the human development approach to
international research’, Hastings Centre Report, 34: 24–37.
Lurie, P. and Wolfe, S. (1997) ‘Unethical trials of interventions to reduce
perinatal transmission of the human immunodeficiency virus in developing
countries’, New England Journal of Medicine, 337: 853–56.
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Behavioral Research (1979) The Belmont Report: Ethical Principles and
Guidelines for the Protection of Human Subjects of Research. Bethesda, MD:
National Institutes of Health. http://ohsr.od.nih.gov/guidelines/belmont.html
Presidential Commission for the Study of Bioethical Issues (2011) Moral
Science: Protecting Participants in Human Subjects Research.
http://bioethics.gov/cms/sites/default/files/Moral%20Science%20%28Updated%202012%2
Schopper, D. et al. (2009) ‘Research ethics review in humanitarian contexts: the
experience of the independent ethics review board of Médecins Sans
Frontières’, PLoS Medicine, 6(7).
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Resources

General guidelines
Canada – Tricouncil Policy Statement – Ethical Conduct for Research Involving
Humans: www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-
eptc2/Default/
Council for International Organizations of Medical Sciences:
www.cioms.ch/publications/guidelines/guidelines_nov_2002_blurb.htm
Declaration of Helsinki: www.wma.net/en/30publications/10policies/b3/
India Council for Medical Research, Ethical Guidelines for Biomedical Research
on Human Participants: http://icmr.nic.in/ethical_guidelines.pdf
Nuffield Council on Bioethics – Research in Developing Countries:
www.nuffieldbioethics.org/research-developing-countries-follow
South Africa – Medical Research Council: www.mrc.ac.za/ethics/ethics.htm
World Health Organization – WHO Research Ethics:
www.who.int/ethics/research/en
Ethical considerations of global
9
health partnerships*
Jill Murphy, Victor R. Neufeld, Demissie Habte,
Abraham Aseffa, Kaosar Afsana, Anant Kumar, Maria
de Lourdes Larrea and Jennifer Hatfield

Objectives
To review the importance of collaboration and partnership for global
health
To develop an understanding of the challenges and opportunities related
to fostering global health collaborations and partnerships
To foster an understanding of “partnership ethics” through examples

A) Introduction
Partnerships are central to global health. In this field, academics, practitioners
and activists are constantly meeting and working with a variety of colleagues
and patients from diverse communities. When approached with care, these
relationships can be rich and beneficial (Royal Society 2011). Nurturing these
relationships, and fostering strong and successful collaborations and
partnerships, requires deliberate thought and action based on ethical conduct.
We define partnership as strategies that facilitate building, consolidating and
sharing knowledge and expertise that contributes to promoting the goals of
global health and building capacity (Canadian Coalition for Global Health
Research (CCGHR) 2009). Partnerships can describe the way large-scale global
health initiatives are funded, including public–private partnerships (e.g. Roll
Back Malaria, Stop TB Partnership) and donor-country partnerships where
governments of high-income countries (HICs) fund health programs in low- and
middle-income countries (LMICs). Partnership may also refer to a way of
working together with communities as an alternative to top-down initiatives. In
the context of global health research, researchers from HICs and LMICs may
collaborate to study complex challenges related to global health.
Much of the literature in this area pertains to research partnerships. Of equal
importance are educational partnerships, which commonly take the form of joint
degree programs between institutions in HICs and LMICs (Sewankambo 2011).
These partnerships can be beneficial to each institution, and can help to fill a
critical gap in training to support human resource capacity development in
LMICs. Other types of partnership include those involving the actual delivery of
clinical services and study placements, where a trainee is placed at another
institution.
Understanding these different relationships is essential for ethical global
health work. It helps in building trust between researchers, communities and
institutions. This chapter provides examples of collaboration and partnership for
global health, and of how principles such as social justice and solidarity (see
Chapter 2) are realized through such relationships.

B) Benefits of partnerships
Partnerships are the result of a variety of motivations (Katz and Martin 1997)
and benefits (Oldham 2005), which results in diverse impacts (Association of
Universities and Colleges of Canada 2006).

Knowledge production
Research partnerships and collaborations may lead to the critical analysis of
existing systems, the sharing of resources and the development of innovative
interventions. According to Oldham (2005), scientists in LMICs often want to
access the knowledge and expertise of their counterparts in HICs, in order to
apply this knowledge to address local challenges. Importantly, knowledge
sharing is certainly not a “one-way street.” Partners from HICs and LMICs learn
from one another, leading to broadened perspectives and new solutions to key
challenges (Association of Universities and Colleges of Canada 2006).
Researchers in HICs have a significant amount to learn from their colleagues in
LMICs, for example about topics such as the control of diseases such as
HIV/AIDS, malaria and TB and how to effectively use research findings to
influence policymakers. For example in Cameroon, researchers have used policy
briefs and stakeholder engagement to promote access to artemisinin-based
combination therapies for malaria (Ongolo-Zogo and Bonono 2010).

Capacity development
Partnerships lead to strengthened capacity among individuals, institutions and
systems in both HICs and in LMICs (Association of Universities and Colleges of
Canada 2006; Bradley 2007). Strong, equitable and mutually beneficial research
partnerships can lead to better health and health system outcomes (Bradley
2007). Again, researchers from HICs learn as much, if not more, from their
LMIC colleagues, including increased knowledge of different cultural contexts
and the adaptation of methodologies to various research contexts (Bradley
2007).

Access to resources
Access to both scientific (laboratories, equipment) and financial (grant money,
institutional research budgets) resources is a benefit of collaboration (Oldham
2005). For example, research funding by organizations such as Canada's
International Development Research Centre (IDRC) and the Swedish
International Development Agency (SIDA) specifically promote collaboration as
a key outcome of research initiatives.

Policy influence
Research partnerships between HICs and LMICs may often lead to new
perspectives that inform or influence policy and subsequently address health
challenges (Oldham 2005; Association of Universities and Colleges of Canada
2006).

C) Challenges of partnerships

Unequal access to resources


The reality of the disparity between LMICs and HICs is a major challenge to
partnerships and a threat to equitable collaboration. This includes disparities in
access to information (e.g. scientific literature), training and funding
opportunities, international conferences and opportunities to publish. This is
compounded by the dominance of languages such as English or French over
local languages, and the dominance of Western knowledge and methods over
local knowledge and methods (see Chapter 6). Bradley (2007) states that:
“asymmetry between partners remains the principal obstacle to productive
research collaboration” (ibid.: 2). Also detrimental, she states, is the
“disproportionate influence of Northern partners in project administration and
budget management” (ibid.). Similarly, Forti (2005) identifies inequalities in
access to information and publishing opportunities as a major barrier to equity in
partnerships. It is important to note that poor infrastructure and inefficient
systems in LMICs may also be considered challenges for people from HICs
working in LMICs. This may also be seen as a result of unequal access to
resources, and requires long-term solutions.

Priority setting
Many LMICs have weak national health research systems and limited local
sources available for research funding. This means that initiatives are generally
funded by foreign donors, who often control the project's priorities (Forti 2005).
Costello and Zumla (2000) state that: “[f]oreign domination in setting research
priorities and project management may have negative consequences which
outweigh the apparent benefits of the research findings” (Costello and Zumla
2000: 827).Therefore a lack of control of the research agenda by partners from
LMICs might result in an imbalance of benefits in the favour of partners from
HICs (Forti 2005; Oldham 2005.)

Exploitation
All too often, a pattern is seen whereby the academic partner from the LMIC
will be employed as a data collector or research assistant, while their HIC
counterpart takes on a leadership position (Oldham 2005). Partners from HICs
may also fail to ensure that results from research are properly owned and
controlled by local stakeholders. This, in turn, may lead to the research
partnership being of great benefit to partners from HICs, while in fact being
detrimental to their partners in LMICs. This may diminish the positive potential
of the partnership to develop capacity, as described above. In order to avoid the
exploitation of colleagues from LMICs, investment in long-term capacity
development is needed to “level the playing field” and to balance power. In other
words, where benefits exist as outlined above, risks are also present if
partnerships are not properly designed and conducted.
Such challenges are reflective of the ‘10/90 Gap’, where only 10 per cent of
research funding is directed to health challenges that 90 per cent of the world's
populations face (Commission on Health Research for Development 1990).
Research funding is heavily weighted in favour of HICs, causing challenges to
equity in health research. This can be seen throughout global health policy and
practice.

D) Principles for conducting partnerships


The stated goal of global health partnerships is often the reduction of disparities
in health outcomes. Hence, it is essential that institutional and organizational
arrangements do not replicate the power differentials that are at the root of such
disparities. Partnership ethics are guiding principles for the ways in which global
health partnerships – in the fields of research, public health, medical practice and
development projects – are conducted. Committing to partnership ethics is a
commitment to ensure partnerships are enriching for all parties, in a way that
brings no harm, supports mutual capacity development, and has an impact on
health equity. Partnership ethics are based in a normative recognition of the need
for equity in the way in which global health collaboration is carried out. It is
useful to complement these normative principles with mechanisms that support
equitable partnership practice. Engaging in equitable global health research
partnerships requires deliberate and thoughtful input from all parties. As
Zarowsky (2011) states, it requires of collaborators “&listening, responsiveness,
flexibility, willingness and capacity to follow as well as lead” (Zarowsky 2011:
1).
A number of principles for health research partnerships were advanced as a
response to the flawed nature of many global health research partnerships. In its
1998 document Guidelines for Research in Partnership with Developing
Countries (KFPE 1998), the Swiss Commission for Research Partnership with
Developing Countries advanced eleven principles for health research
partnerships*. These principles were developed to address the need for global
research capacity to address critical world issues. The KFPE asserts that research
partnerships are an effective way of improving LMICs’ capacity to do effective
and essential research, thus increasing the potential of finding solutions to major
global challenges (ibid.). They suggested the following eleven partnership
principles:

Decide on the objectives


Build up mutual trust
Share information; develop networks
Share responsibility
Create transparency
Monitor and evaluate the collaboration
Disseminate the results
Apply the results
Share profits equitably
Increase research capacity
Build on the achievements

In 1999, the Netherlands Development Assistance Research Council (RAWOO)


held an expert meeting on research partnership building, hosted by the Kerala
Research Programme on Local Level Development (KRPLLD/IDS) at the
Centre for Development Studies in Trivandrum, India. The meeting sought to
generate discussion between actors from HICs and LMICs on a central question:
“&is the current practice of North–South cooperation satisfactory to all
concerned&?” (RAWOO 2001: 8). They defined “research cooperation” broadly
as referring to collaboration that takes place between HICs and LMICs with a
mandate for development. Six colleagues from LMICs made presentations about
their experiences. The meeting resulted in the call for efforts on behalf of
researchers in LMICs and HICs to work together to achieve the goal of “fruitful
partnerships,” and the recognition that constant effort is required so that “the
effects of asymmetry&be neutralized.” In the report, three guidelines for fruitful
partnerships were advanced (ibid.: 29–30):

Strengthening the capacity for conducting socially relevant research


should be a specific aim of the partnership
The Northern partner should be prepared to relinquish control and to
accept considerable autonomy on the part of the Southern partner
A broad-based consultative process, however painstaking and time-
consuming it may be, should precede any programme

The report also calls for a paradigm shift in research, so that the “culture of the
science system” better acknowledges socially relevant research, thus opening
new channels for collaborative research (ibid.).
In 2000, Costello and Zumla advanced four broad principles for a partnership
model to improve the practice of research in LMICs. They based their principles
on a criticism of the practice of “annexed research” whereby researchers from
HICs create research sites that are managed by expatriate staff, and often employ
local people at inflated salaries. They argued that these “annexed” sites are
damaging in that they attract local researchers away from national institutions
and rarely involve sufficient local ownership to lead effective or appropriate
policy influence (Costello and Zumla 2000). The principles are:

Mutual trust and shared decision-making


National ownership
Emphasis on getting research findings into policy
Development of national research capacity

There is a need to unpack the challenges of partnerships. These frameworks


contain gaps, most notably the lack of Southern perspective on partnerships. The
majority of what has been written about partnerships has been generated by
academics or institutions from HICs. Similarly, much of what has been written
about the benefits and challenges of global health research partnerships was also
written in HICs and much of the discussion has occurred at the macro level.
While important, there is little discussion of how the values can be put into
action and into “real life” situations. While the Swiss, RAWOO and Costello and
Zumla (2000) principles all capture key elements of what is needed to improve
global health research partnerships, they do not give direction about what actions
must be taken to achieve these goals. The Swiss principles do provide practical
examples and checklists for each; Costello and Zumla (2000) also provide a
checklist to accompany their principles. These checklists may be effective, but
more direction is required to allow all partners to make use of them. Finally, the
principles that each checklist advance are relevant primarily at the beginning of
research partnerships. More guidance is needed to allow for such principles to be
maintained throughout the duration of a partnership.
Box 9.1 Eliciting the “southern voice” in building effective and
sustainable partnerships
The Canadian Coalition for Global Health Research (CCGHR or “the
Coalition”) is a non-governmental organization with the goal to “promote
better and more equitable health worldwide through the production and use
of knowledge” (CCGHR 2011). With the support of the IDRC, the Coalition
was able to implement the Building Partnerships (BP) project. Consultations
took place with researchers, decision-makers, funders, representatives of
civil society organizations, and students in three regions: South Asia (Dhaka,
Bangladesh), the Andean region of South America (Quito, Ecuador), and
English-speaking Africa (Addis Ababa, Ethiopia).
The key finding was the reality of persistent inequity in the way health
research partnerships are conducted and managed. Participants across the
three regions spoke of negative partnership experiences in which Southern
partners had been treated exploitatively and with disrespect, and where the
partnership was exclusively beneficial to the most resourced partner – in
particular, but not exclusively, partners from HICs. These inequities were
felt not only between researchers or research institutions, but also between
researchers and funders of research. During the African regional consultation
in 2009, participants critiqued the “briefcase model” of health research
partnerships, a model that many had experienced in practice. This involved
researchers from the North arriving to “fill their briefcases” with data to take
back to their home country or institution. Within this model, capable
researchers from the South were often relegated to the tasks of data
collection, and were unacknowledged in subsequent dissemination of
findings such as papers and conference presentations.
Inequity often persists due to an unequal balance of resources, as funds
and technology are often controlled by Northern institutions. There is also a
lack of discussion and formal agreement about the terms of the partnership
and a failure to articulate clearly the interests, benefits and contributions of
each partner. The absence of formal agreements often leads to a lack of
leverage for negotiation for the less resourced partners.
A key resource that emerged from this project is the Partnership
Assessment Tool (PAT), developed by academics from LMICs, which
guides participants throughout the stages of partnership development
(available at www.ccghr.ca).
Case study 9.1

Capacity development for primary health care management: a


Canada-Brazil partnership

The University of Toronto's Department of Family and Community


Medicine (DFCM) has worked in partnership with colleagues and
institutions in Brazil for over a decade to increase primary health care
capacity in the country. In 2007, the DFCM responded to a request by the
Brazilian Ministry of Health to develop the Primary Health Care
Management (AGAP) project, to strengthen capacity in primary health
care while promoting gender and racial equality. The project took place
in four states and involved forty-one projects in each state. The program
integrated capacity development in four areas -care, management,
training and communication – and involved managers, clients and their
families from the communities served. The project led to improved
capacity and increased quality of care in previously underserved disease
areas such as tuberculosis and leprosy.
Several challenges arose during the AGAP project. Cultural difference
was an important factor: the bureaucratic culture of the Canadian funding
environment was unfamiliar to many of the Brazilian colleagues,
requiring careful translation of expectations between teams to ensure all
requirements were met. Similarly, linguistic differences between
Canadian and Brazilian colleagues had to be navigated. This was
mitigated by translating lectures by Canadian partners into Portuguese so
that they could be re-used for future training sessions.
Building trust over time was essential, as was the initiation by the
Brazilian side. The AGAP project was mutually beneficial in that
Canadian and Brazilian teams learned from each other. Brazil has carried
out the largest primary health care reform in the world, and this was of
great interest to Canadians working in the primary health care field in
Canada. Brazilian colleagues were able to learn from Canadians about
approaches to specific health challenges such as mental health.
Case study 9.2

Global health partnership in Zambia

The Zambia Forum for Health Research (ZAMFOHR) is a non-


governmental organization specializing in knowledge translation. Its goal
is to: “improve the health quality of Zambians by ensuring that health
research evidence forms the basis for the policy and practice that drives
the healthcare system” (ZAMFOHR n.d.). Master's of Public Health
students attending Simon Fraser University have worked within
ZAMFOHR to conduct locally relevant research, often with the
mentorship of faculty at the University of Zambia. This has facilitated
access to key informants and ensured that all research is done within the
context of ZAMFOHR's strategic initiatives. Partnerships have been
mutually beneficial for students and Zambian faculty.

Case study 9.3

Collaborating to build public health capacity in Tanzania: the


University of Calgary and the Catholic University of Health and
Allied Sciences – Bugando

Training and retention of health professionals is a challenge faced by


many LMICs. The Catholic University of Health and Allied Sciences-
Bugando (CUHAS-Bugando) is one of two medical universities certified
to train physicians outside Tanzania's capital. The Department of
Community Medicine had attempted to develop a Master of Public
Health (MPH) program for several years, but capacity and resource
challenges held up progress. Based on a history of previous
collaboration, the leadership of CUHAS-Bugando invited the University
of Calgary to help in developing the MPH Program. Representatives
from both universities collaborated on the development of a curriculum,
with University of Calgary faculty playing a key role in curriculum
delivery through the first years of the program. Simultaneously, local
staff were to be trained, with responsibility for teaching being passed on
to CUHAS-Bugando staff.
During 2010–11, twenty University of Calgary faculty travelled to
Tanzania to collaborate on the first year of the MPH program. The first
eight students graduated in November 2011, with the rest of the inaugural
class expected to graduate in early 2012. The second year is now under
way, and two MPH graduates have been hired by CUHAS-Bugando to
begin building long-term capacity.
Challenges faced along the way included concerns by University of
Calgary faculty about receiving support in terms of safety, transportation
and orientation while visiting Tanzania. CUHAS-Bugando
representatives shared their concerns about commitment and the
sustainability of the partnership. Also of major concern to both parties
was the concept of capacity building. The University of Calgary's goal
was to build the capacity of faculty to engage in educational experiences
and research in resource-constrained settings. They wanted to learn from
Tanzanian colleagues how public health challenges were managed in a
country that faced urban and rural divides, indigenous populations that
experience worse health outcomes and significant human resource
challenges. The Tanzanian partners were very interested in building their
capacity to run a high-quality nationally recognized MPH.
The approach taken to negotiating the partnerships and discussing
these concerns was crucial to the success of this partnership. The partners
made use of the PAT, drawing on it to guide frank and open discussions
through the “inception phase” of the partnership. Using the PAT created
a safe environment in which both parties could be open about their
motivations and interests.

Case study 9.4

Building capacity and promoting community-based impact: the


Ecuador Eco-Health Initiative

The University of British Columbia; the National Institute of Hygiene,


Epidemiology and Microbiology in Cuba; and Mexico's National
Institute of Public Health have partnered with universities in Ecuador on
the Ecuador Eco-Health Initiative, which seeks to build a community of
practice to support environmental health in Ecuador.
Since it began in 2004, its Master's program, which takes a
participatory action approach, has led to community-based impact that
ranges from the development of dengue prevention programs to the
identification and prevention of lead poisoning in the artisanal
community of San Jose de Balzay. Its PhD program in Society,
Environment and Health is a partnership between the University of
British Columbia, the University Andina Simon Bolívar, FIOCRUZ in
Brazil and the Andean Health organization. This program benefits
students from all Andean countries. The project has also been successful
in building capacity among Ecuadoran master's and doctoral graduates,
which enables them to remain, and to build careers, in the Andean region
(Speigel et al. 2011). This means the impact of this partnership will be
felt long after students have graduated and will be of lasting benefit for
the region.

E) Conclusion
Ethics and equity must be at the heart of partnerships in order for them to be
successful. Partnering is not just a way in which to get things done – it is about
people and relationships, and therefore must be approached with care, thought
and consideration. Students engaging in partnerships must also recognize the
bigger picture of global health, grounded in the desire to improve health
outcomes and health equity on a global scale. Successful partnerships depend on
ethical conduct. Not only that, successful partnerships are also more likely to
lead to results that influence health policy, practice and outcomes to have a real
impact. In the course of their careers, students might be faced with situations in
which they recognize unethical conduct in partnerships.
This chapter draws on the experiences of its authors. Some key additional
recommendations are as follows.

Before entering into a partnership or collaboration, consider motivations.


Ask yourself if the relationship will benefit you specifically, or if it will
be mutually beneficial. Ask yourself if you are perpetuating the
“briefcase model” or are entering into a true collaboration. Ask whether
what you are doing will add value (for example through knowledge
production) on a broader scale.
Be aware that learning is a two-way street. Ask yourself what you can
learn from your colleagues and the communities with whom you are
working. Ask yourself what you can learn from your patients or clients.
Ask yourself what they can learn from you.
Check in frequently on the health of your partnership – is everyone
involved happy, learning and able to work to their full capacity? If a
problem arises, are you able to discuss it in an open and honest way?

References
Association of Universities and Colleges of Canada (2006) Highlighting the
Impacts of North-South Research Collaboration among Canadian and
Southern Higher Education Partners. Ottawa: Association of Universities and
Colleges of Canada.
Bradley, M. (2007) North-South Research Partnerships: Challenges, Responses
and Trends; a Literature Review and Annotated Bibliography. Canadian
Partnerships Working Paper #1. Ottawa: International Development Research
Centre.
CCGHR (2009) Partnership Assessment Tool. Ottawa: Canadian Coalition for
Global Health Research.
www.ccghr.ca/Resources/Documents/Resources/PAT_Interactive_e.pdf
— (2011) About Us. www.ccghr.ca/about_us
Commission on Health Research for Development (1990) Health Research:
Essential Link to Equity in Development. New York: Oxford University Press.
Costello, A. and Zumla, A. (2000) ‘Moving to research partnerships in
developing countries’, British Medical Journal, 321: 827–29.
Forti, S. (2005) Building Partnerships for Research in Global Health: Analytical
Framework. Ottawa: Canadian Coalition for Global Health Research.
Katz, J.S. and Martin, B.R. (1997) ‘What is research collaboration?’, Research
Policy, 26(1): 1–18.
KFPE (1998) Guidelines for Research in Partnership with Developing
Countries: 11 Principles. Swiss Commission for Research Partnership with
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www.kfpe.ch/key_activities/publications/guidelines/guidelines_e.php
Oldham, G. (2005) International Scientific Collaboration: A Quick Guide.
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briefs/international-scientific-collaboration-a-quick-gui.html
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artemisinin-based combination therapies for malaria in Cameroon’,
International Journal of Technology Assessment in Health Care, 26: 237–41.
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Trivandrum Expert Meeting Report, 1999. The Hague: RAWOO.
Royal Society (2011) Knowledge, Networks and Nations: Global Scientific
Collaboration in the 21st Century, RS Policy Document 03/11. London: The
Royal Society.
Sewankambo, N. (2011) ‘The value and challenges of institutional partnerships
in global health: a view from the South’, in: Building Institutions Through
Equitable Partnerships in Global Health Conference, Royal College of
Physicians, London, 14–15 April. www.rcplondon.ac.uk/policy/reducing-
health-harms/global-health/global-partnerships-2011
Speigel, J. et al. (2011) ‘Establishing a community of practice of researchers,
practitioners, policy-makers and communities to sustainably manage
environmental health risks in Ecuador’, BMC International Health and
Human Rights, 11(Suppl. 2).
ZAMFOHR (n.d.) About ZAMFOHR. Lusaka: Zambia Forum for Health
Research. www.zamfohr.org/aboutus.html
Zarowsky, C. (2011) ‘Global health research, partnership, and equity: no more
business-as-usual’, BMC International Health and Human Rights, 11(Suppl.
2).

* We wish to acknowledge the contributions of Yves Talbot and Clément


Habiyakere to the case studies in this chapter. We would also like to
acknowledge the contributions of Aleida ter Kuile and Roberta Lloyd, whose
hard work was essential to the success of the CCGHR's “Building
Partnerships” project. Finally, we would like to acknowledge the generous
contributions of the International Development Research Centre.

* The KFPE revised the 11 principles in 2012. The revised principles can be
accessed at: http://kfpe.ch/11_Principles/
Perspectives on global health
10
from the South
Ana Sanchez and Victor A. López

Objectives
To discuss reasons for the under-representation in the literature on global
health from Southern authors based in the South, despite collaboration
with Northern partners
To consider guidelines and recommendations for ethical conduct being
developed for students, researchers and countries in the North
collaborating with LMICs

A) Introduction
The existing body of literature on global health – its evolving definitions, scope
and, very importantly, the values and competencies required for ethical practice
– reveals a troubling imbalance: there is little contribution from Southern authors
based in the South. This under-representation is even more striking when
considering the enormous growth in global health activity, particularly the
hosting of Northern partners as part of the myriad of research and training
opportunities taking place in low- and middle-income countries (LMICs).
Undoubtedly such opportunities are beneficial for the arriving guests (Crump
and Sugarman 2008; Fennell 2009; Plugge and Cole 2011), but are they
beneficial to the hosts? Laabes et al. (2011) suggest that while some African
schools receive much needed funding from an ever-increasing number of
European and American graduate programs, these collaborations often
perpetuate “post-colonial syndrome,” a legacy of reckless, exploitative and
unequal interactions (Laabes et al. 2011). Conversely, Glew (2008) argues that
not all Western investigators are necessarily cultural imperialists, and prefers to
believe his American students and colleagues when they express noble motives
for undertaking research or studies in Africa (Glew 2008). An examination of
the impact of study-abroad students in Chilean institutions and society concludes
that these opportunities can contribute greatly to world peace through a better
understanding of different values and cultures in both the sojourner and the host
(Stephenson 1999).

B) Guidelines for international collaborations


The growing consensus is, however, that international training experiences may
be a substantial burden on already resource-constrained hosts (Redwood-
Campbell et al. 2011). Moreover, recognizing that considerably less attention
has been given to the ethics of global health training than to global health
research, the Working Group on Ethics Guidelines for Global Health Training
(WEIGHT) guidelines have been proposed. These suggest best practices for
Northern students, teachers, donors and institutions engaged in global health
training experiences in LMICs (Crump and Sugarman 2010). In addition to
addressing ethical conflicts emerging from international service learning
programs, other authors have expanded the scope of ethical conduct and
incorporated recommendations related to project sustainability and community
involvement (Reisch 2011). In particular, the concept of capacity-building in the
South has evolved from simply a desirable outcome to a vital measure of the
ethical value of undertaking of these partnerships (Ijsselmuiden et al. 2010;
Bates et al. 2011).
Similar to the challenges surrounding training activities, the global health
enterprise at large can also be plagued by ethical concerns (Ijsselmuiden et al.
2010) and can perpetuate the very inequities it is seeking to address (Costello
and Zumla 2000). Acknowledging that North–South research collaboration is
essential for the advancement of science and society, in 2008 a Working Group
on International Research Collaborations (I-Group) was formed in the United
States to look systematically at international research collaborations. As part of
its activities, a Workshop on Examining Core Elements of International
Collaboration was held in July 2010. The report from the workshop is rich in
case studies and suggestions, concluding that there is a need to put together a
“primer or guide that would outline the necessary steps in forming and
undertaking various types of collaboration,” and inherently one that would
ascertain possible pitfalls of such collaborations, as well as provide insight for
understanding and managing potential risks that may arise from such endeavors
(Sauer and Arrison 2011) (see also Chapter 9). Indeed, as the global health field
continues to expand, an additional need for global health diplomacy expertise
has begun to emerge (Kickbusch et al. 2007).
Notwithstanding these efforts, and the fact that existing or future guidelines
for best practices on global health training and research can be interpreted and
adapted by recipient LMICs, the voices from the South are yet to be heard in the
same explicit mode and in international spaces. The manner and mechanisms in
which training and research partnerships are agreed upon and implemented in
the South for the most part go unrecorded. There are a few exceptions, however,
documenting North–South research cooperation, although none explicitly
suggests guidelines for equitable cooperation.
A recent article analyzing four successful projects between African countries
and the Liverpool School of Tropical Medicine identifies criteria for sustainable
capacity-building and emphasizes the importance of promoting local ownership
from the onset (Bates et al. 2011). An additional example is an article recounting
the experience of scientific cooperation between Zimbabwe and Denmark, which
demonstrates a longstanding relationship that was able to endure cultural and
political differences (Chandiwana and Ornbjerg 2003). The authors propose
“Most institutions in developing countries, particularly those in Africa, are too
weak to participate effectively in joint research programs with institutions in
industrialized countries” (ibid.: 293). They also conclude that autonomy and
capacity-building, including research leadership, are crucial for an effective and
sustainable role in research productivity and North–South as well as South–
South cooperation (Chandiwana and Ornbjerg 2003).
Publications from developing countries in Latin America that effectively
engage in global health activities with countries from the North are even more
difficult to find in the literature. An exception to this is a recent paper from
Central America that illustrates the development of scientific capacity over a
period of more than twenty years with the assistance of the Swedish
International Development Cooperation Agency (Moreno et al. 2011). In this
case, the ultimate objective of the cooperation program was improving the
sustainability of scientific research in the region through the creation of
NeTropica, a not-for-profit organization with the mandate of funding local
research and sustaining a network for knowledge exchange. NeTropica has
operated successfully for ten years; unfortunately, its future is uncertain unless it
can secure ongoing funding from local and international partners (Moreno et al.
2011).
These examples provide hope that egalitarian partnerships may be more
common than previously thought. On the other hand, they may illustrate a
publication bias whereby success stories may be more amenable to report
(Corbin et al. 2011). By the same token, they may exemplify situations of
official bilateral agreements that were initiated due to the needs of the Southern
partner and may not be reflective of smaller-scale interactions between
institutions and/or academics. Of the latter, the perception exists that training
needs are fulfilled and research interests prioritized to the detriment (sometimes
overt but more often subtle) of the hosting developing country, but the paucity of
published work makes it difficult to ascertain its validity and to offer
recommendations on how to promote more equitable collaborations.
In the absence of substantial written evidence, the question may arise: are
researchers and institutions based in resource-constrained countries interested in
producing guidelines for partnership setting with the North? The international
literature is scarce on this issue, but there is reason to believe such interest exists.
A good example of these emerging voices is an article by Adamson Muula from
Malawi, who asks researchers to refrain from issuing “condescending,
paternalistic and offensive” descriptions of his country, and suggests ethical
guidelines for taking photographs of peoples and places (Muula 2010).
A second, even more important question also remains: do Southerners in
global health alliances feel empowered enough to believe that their guidelines –
if produced -will be taken seriously when negotiating agreements? When
searching for answers, the contextual aspects of these questions need to be kept
in mind. Facing serious economic and social challenges, the prioritization of
research may not be at the top of LMIC governments’ agendas.
To bring life to this abstract discussion, the following three case studies are
offered to exemplify views on global health from the South, specifically in terms
of hosting students from the North (Case 10.1), experiences of individual
research collaboration (Case 10.2) and authorship (Case 10.3).

Case study 10.1

Hosting students from the North

Every year, hundreds of undergraduate and graduate students from the


North travel to Guatemala and Honduras to take part in different training
initiatives in global health, including research and service activities.
The visiting students are generally well received and usually are
provided with access to procedures and experiences that are not usual in
their home countries. In most cases, foreign students are given privileges
and preferences that are not afforded to local students. Additionally,
receiving visitors entails a variety of timeconsuming duties for the host
institutions and personnel, including supervision, guidance, tutoring and
socializing. Even when universities from the North are appreciative of
these efforts, they are commonly performed in a “collaborative” way
without economic compensation or academic recognition for the hosts.
Similarly, the actual and direct benefits for the country and the
population are not always clear. Hosting student placements can be
unfair to countries in the South, even when it seeks to address issues such
as inequity and social injustice.

Case study 10.2

North–South collaborations may start well, but their fate is


sometimes uncertain

“We have always wanted to help find a solution for a health condition
affecting livestock and people in our country, so we approached a group
of researchers from a developed country that had produced and was
testing a treatment for the disease in animals. They were happy to
entertain our ideas and accepted our country as a research site. With our
own funding, we tested the treatment using a very expensive, rigorous
and ethical experimental protocol. The one-year trial was a success and
we were interested in doing a larger study. We sent samples to the
foreign researchers’ lab for some additional testing, but a year passed
without feedback. Every so often we would ask for results, but our emails
went unanswered. One day we were finally told that our findings didn't
show anything new as they already had proof of the treatment's efficacy;
they were also busy testing the treatment at a larger scale elsewhere so
could not continue working with us. This was extremely disappointing
and made us regret having spent our resources and time on this study.
Finally, in an attempt to rescue something, we asked if at least we could
publish the results, but they said that the study didn't prove anything new
and was now too old to be published. That was the last time we heard
from them.” (Source: a biomedical researcher from the South.)
Even though proficient researchers in less developed countries are
indeed capable of initiating collaboration with researchers in the North,
an equitable and lasting partnership can develop only when both parties
perceive the association as mutually beneficial and synergizing. There is
also a need to establish a written agreement that explicitly outlines each
partner's expectations and obligations at the outset.

Case study 10.3

Global health research and equitable authorship

At the end of a collaborative project with Northern partners, a group of


researchers and practitioners from the South expressed the tensions
arising when negotiating the dissemination strategy. For the Northern
side of the team, however, the most pressing issue was to publish in
English language peer-reviewed journals, as within their context this kind
of output is highly valued and an indication of success. For the Southern
colleagues, the priority was to produce reports and presentations to
engage local decision-makers and the communities where research
participants were recruited. They asserted that the granting agency's
project evaluation framework did not fully consider the realities and
priorities of developing countries. Further, the Southern researchers
stated that, albeit desirable, publications were not necessarily the ultimate
research output: many collaborative projects seek to build capacity
(strengthen processes, transfer technology, form mentors, instill
leadership) and, although their achievements can, and perhaps should, be
counted and recounted, the individual, institutional and societal
transformations stemming from them are far better indicators of success
than a handful of publications. They also emphasized that, more often
than not, LMICs’ decision-makers and research-users are either unaware
of such publications, have no access to them, or simply cannot
understand the jargon (and sometimes the language) in which they are
written.
This underscores the need for a mutual understanding with regard to
the value, weight and relevance of research publications. Few in the
North would negate the importance and appropriateness of research
dissemination in LMIC. However, what is perhaps needed is an evolution
of the “peer-review” concept and an expansion of project evaluation
criteria that bestow equal merit on a variety of forms and channels that
global health researchers must utilize for knowledge sharing.

C) Recommendations
It is imperative that scientific collaboration between researchers, institutions and
countries – whether for training, research, or both – operates under the guiding
principles of reciprocity, solidarity and social justice. This is particularly
important where one of the partners may be more vulnerable due to historic,
economic or political reasons. To this extent, it is commendable that guidelines
and recommendations for ethical conduct are being developed for students,
researchers and countries in the North. Of equal importance, LMIC stakeholders
should endeavor to develop similar regulations based on their own insights and
perspectives, thus bringing their essential voices to the dynamic conversation
about the ethics of global health – one that continues to be dominated by
Northern voices.

References
Bates, I., Taegtmeyer, M., Squire, S.B., Ansong, D., Nhlema-Simwaka, B.,
Baba, A. and Theobald, S. (2011) ‘Indicators of sustainable capacity building
for health research: analysis of four African case studies’, Health Research
Policy and Systems, 9: 14.
Chandiwana, S. and Ornbjerg, N. (2003) ‘Review of North–South and South–
South cooperation and conditions necessary to sustain research capability in
developing countries’, Journal of Health, Population, and Nutrition, 21: 288–
97.
Corbin, J.H., Mittelmark, M.B. and Lie, G.T. (2011) ‘Mapping synergy and
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— (2010) ‘Ethics and best practice guidelines for training experiences in global
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The political context of global
11
health and advocacy
Nathan Ford

Objectives
To offer an overview of global health advocacy
To introduce a framework for global health advocacy that draws on
policy analysis

A) Introduction
The practice of health advocacy has existed for hundreds of years. Rudolf
Virchow's (1840) often-cited claim that “Medicine is a social science, and
politics is nothing else but medicine on a large scale” (cited in Sigerist 1941: 93)
may be seen as recognition of intensive health activism taking place at that time.
In the United Kingdom, for example, campaigning by pressure groups to
promote the sanitary reform brought about the 1848 Public Health Act (Berridge
2007).
Global health advocacy – which could be defined as people in one part of the
world advocating for the improved health of people in another part of the world -
also has a long history. Recent advocacy efforts to draw attention to the lack of
drug development for neglected tropical diseases of the developing world (Barry
2003) are the latest in a 100-year-long struggle to control these diseases
(Janssens et al. 1992).
In a world driven by humanitarian concerns alone, funding would be
prioritized according to medical and public health need, with particular attention
to factors such as marginalization and discrimination that deliberately promote
poor health among certain groups, or exclude them from accessing care.
Unfortunately, such a global health utopia does not exist. In reality, national
interests play a substantial role in donors’ decisions to respond to major health
challenges. Just as colonial interests drove the United Kingdom's tropical disease
research in the first half of the twentieth century (see Chapter 1), more recent
international efforts to fight diseases such as HIV, tuberculosis and malaria have,
in part, been driven by diplomacy and national security considerations
(Feldbaum et al. 2010). This can have mixed or even contradictory
consequences. For example, national security concerns formed part of the US
government's decisions to invest in global funding for HIV (Feldbaum et al.
2006), resulting in the largest international funding effort against a single disease
(Ford et al. 2011). At the same time, however, domestic trade interests led the
US government to lobby for trade rules that protected the patents of
pharmaceutical companies and limited access to the most affordable treatments
for HIV.
This chapter provides an overview of global health advocacy, introducing the
reader to a useful framework that draws on policy analysis. Advocacy efforts to
increase access to HIV treatment will be illustrated as a key example.

B) A framework for global health advocacy


There are a number of features common to successful global health advocacy
campaigns. The first step is defining the problem, which in general should be
political in nature – that is to say, amenable to a political solution. For example,
if a medicine is expensive because the manufacturing process is complex and
labour-intensive, then advocacy will be of little use. However, if a medicine is
known to be cheap to make, but is sold at a very high price, then public pressure
may be effective in reducing the price. Such public pressure creates political
tension that can force governments to intervene, for example by negotiating
discounts from pharmaceutical companies, or seeking generic alternatives to
more expensive patented drugs. Next, evidence needs to be gathered to support
the case. In the era of evidence-based health care, policy makers will usually
require data to substantiate the importance of a particular health problem. Then,
for advocacy to be successful, a clear policy solution needs to be proposed. At
the same time, allies need to be identified to help support the case that the issue
of concern is not a marginal one, but matters to a range of stakeholders.
Opportunities to promote the solution will arise, and these need to be seized.
Finally, if successful, advocates should be ready to play a supportive role in
implementation of the solution.
In reality, policy change does not occur in a linear fashion, and advocacy
rarely takes such a stepwise approach. According to health policy theory,
opportunities to change policy (“policy windows”) arise only when three
separate and independently evolving streams – problems, policies and politics –
converge. Advocacy efforts aim to influence these three different streams, and
need to evolve rapidly in response to opening and closing of policy windows
(Kingdon 1984).
Nevertheless, a stepwise framework is useful for outlining distinct stages in an
advocacy campaign. In this chapter, the framework is used to describe advocacy
efforts to improve access to treatment for HIV in Africa.

Example: Access to treatment for people living with


HIV in Africa
Defining the problem
The first step in any advocacy effort is to agree on the problem that needs to be
overcome. There are an overwhelming number of examples of inequalities in
health care around the world, and reasonable people can hold different or even
opposing views about which problem should take priority.
Medicines to treat HIV have been available since the first antiretroviral drug,
zidovudine, was marketed in 1987. But it was only with the advent of triple
therapy in 1996 that major gains were made in long-term survival for people
living with HIV (Ford et al. 2011). For decades, the greatest burden of HIV has
been in Africa. In 2001, some 20.3 million people were living with HIV in sub-
Saharan Africa. According to more recent estimates, that figure is now 22.5
million (UNAIDS 2010). Initially, antiretroviral medicines were priced out of
reach for the majority of people in need, costing more than $10,000 per
patient/year in developing and developed countries alike, and there was
considerable disagreement about whether the focus of attention should be on
prevention or treatment. For example, researchers at the World Health
Organization (WHO) concluded, on the basis of a review of cost-effectiveness
data at the time, that prevention should take precedence over treatment in
developing countries (Creese et al. 2002). Others argued that health systems in
sub-Saharan Africa could not cope with the strain of providing treatment to
millions of patients in need (McCoy et al. 2005). Concern was even expressed
that adherence to treatment in Africa would be suboptimal (Attaran 2007).
Civil society groups, and in particular people living with HIV, played a central
role in arguing the case that access to treatment had to become a major
international political priority. Patient groups in Thailand, Brazil, South Africa,
India, Kenya, Uganda and other high-burden countries formed alliances with
health providers, NGOs and health groups in developed countries to argue the
case that the cost of treatment was too high and must be reduced (Ford et al.
2011). The fact that life-saving treatment existed, but was not being made
available to those in greatest need because of the high cost of the medicines, was
considered unacceptable and a violation of human rights (see Chapter 4). The
politicization of the problem came from the understanding that drug prices were
not a reasonable reflection of the cost of researching, developing and
manufacturing, but were artificially high and based on the profits sought by
pharmaceutical companies.
Thus, while not universally accepted, there was sufficiently broad agreement
among groups in both developed and developing countries that access to life-
saving treatment needed to be improved, and this became an advocacy priority
for much of the next decade.

Gathering the evidence


Advocacy for scale-up of antiretroviral therapy relied on at least three different
types of data: epidemiological data, drug pricing data and treatment efficacy
data.
Data describing the burden of HIV disease was essential to building the case
that treatment was a priority. In 1999, the United Nations (UN) published
epidemiological data that outlined the following points: there were an estimated
33.6 million HIV-infected individuals, 23.3 million of them living in Africa; in
1999, there were 5.6 million new infections, with the majority, 3.8 million, again
in Africa; since the epidemic began, there have been 2.6 million AIDS-related
deaths; and life expectancy in much of the continent dropped to forty-five years
or less (UNAIDS 2000). These data, which are now published annually as part
of the UNAIDS global HIV/AIDS epidemic update, formed the basis for
advocacy and for expanded efforts to improve treatment and care for people
living with HIV worldwide.
The availability of comparative drug-pricing data also proved critical to
advocacy efforts. The fact that in early 2000 antiretroviral therapy was priced
out of reach of those in need was recognized as a problem at the highest political
levels. However, in the absence of data to demonstrate the inequalities in pricing
of medicines around the world, the high price of drugs was not challenged. That
pharmaceutical companies spent money on drug research and development, and
that these companies needed to recoup their investments, was accepted as a fact.
The collection and publication of pricing data for medicines to treat HIV and
opportunistic infections helped to challenge this argument. In 2000, Médecins
Sans Frontières (MSF) published data from countries in Asia, Africa and Latin
America that showed a 100-fold variation in the price of fluconazole, a drug to
treat AIDS-related meningitis (Perez-Casas et al. 2000). MSF, the WHO and
other UN agencies also published pricing surveys for selected drugs used in the
care of people living with HIV (UNICEF et al. 2000). Such data have been
critical to ensure ongoing pressure on pharmaceutical companies to lower the
price of antiretroviral medicines for developing countries, and have formed the
basis of policy discussions towards greater flexibility in international law to
allow countries to access the best available prices on the global pharmaceutical
market (Hoen et al. 2011).
Finally, early treatment outcome data demonstrating the safety and efficacy of
providing antiretroviral therapy in resource-limited settings helped convince
international donors and national governments that the provision of antiretroviral
therapy was a life-saving public health priority (Kasper et al. 2003).

Championing a solution
Up until 2000, the high cost of antiretroviral medicines excluded widespread
access to treatment in Africa. Although there had been calls in the past for
reducing the prices charged by pharmaceutical companies, these were by and
large comfortably ignored (Altman 2006).
The potential for antiretroviral drugs to be manufactured at substantially lower
prices was being explored by two middle-income countries with a high burden of
people living with HIV – Brazil and Thailand (Ford et al. 2007). However, such
initiatives were focused mainly on developing affordable medicines for their
own populations, with no major ambition to produce medicines for export to
other countries.
A major breakthrough came in 2001, when the Indian generics company Cipla
announced that it could manufacture triple therapy for US$350 per person per
year (Hoen et al. 2011). It rapidly became clear that the global patent rules that
permitted or hindered the international movement of medicines, as determined
by the World Trade Agreements, had a major influence over the ability of
developing countries to be able to access generic drugs at the price being offered
by the Indian manufacturers.
The availability of affordable generic antiretrovirals in India represented a
solution that could help drive an advocacy strategy both to pressure other
companies to lower the prices of their medicines and, at the same time, to
encourage governments and intergovernmental agencies to support the export of
Indian generic drugs to Africa.

Building alliances
In order to build the case that increased access to antiretroviral therapy should be
a priority, expertise and experience from a range of fields was required.
Intellectual property experts provided an analysis of the legal aspects of
international and national laws that determined the possibility of overriding
patents in order to manufacture and export generic medicines. Clinicians gave
advice about which drugs were most urgently required and, through treating
patients as soon as medicines were available, provided evidence that treating
HIV in resource-limited settings was feasible. In order to address concerns about
poor adherence and the risk of drug resistance, researchers gathered and
synthesized data that showed that adherence to treatment in Africa was as good
as, if not better than, adherence in North America (Mills et al. 2006). Health
economists modelled data to show that treating HIV was cost-effective. NGOs
launched public campaigns to challenge pharmaceutical patents and support
access to medicines in trade laws. Pharmacists advised on the quality of generic
versions of patent drugs. And, perhaps most importantly, the voices of patients
themselves articulated the urgency of the need.
One of the landmark cases illustrating the strength of such collaborative
efforts was a court case that took place in South Africa. Between 1997 and 2001,
a consortium of thirty-nine pharmaceutical companies litigated against the
government of South Africa, which at the time was trying to pass a Medicines
Act that would allow for the import of medicines being sold at a lower price in
neighbouring countries. At that time (and still today), South Africa was the
country with the largest number of people living with HIV, estimated at around
5.6 million. A dedicated advocacy campaign was mounted against the court case,
bringing together a coalition of lawyers, doctors, NGOs and local and
international activist groups. A local activist group, the Treatment Action
Campaign, challenged the court case on the grounds that it was a violation of the
human right to health. MSF co-ordinated a petition that collected over 250,000
signatures. These and other actions led to such forceful international public
pressure that the pharmaceutical industry was forced to drop the case (Forman
2008; Hoen et al. 2011).
Challenging the status quo
By definition, advocacy is confrontational because it involves, at least in the
early stages, challenging the status quo. The proposal that the needs of patients
in developing countries should be prioritized over the patents of pharmaceutical
companies and that affordable generic medicines should be purchased in order to
scale-up treatment was, in 2000, a radical idea that met with strong opposition
from Western governments. The pharmaceutical industry tried to deflect
attention, arguing that the price of medicines was not the most important issue,
and that efforts should first address poverty rather than medical patents
(GlaxoSmithKline 2011). UN officials who conducted investigations into
pharmaceutical pricing policies were threatened, sometimes violently (Vidal
2001). Western governments, protecting the interests of their domestic
pharmaceutical industries, threatened trade sanctions against developing
countries that attempted to override medical patents (Wilson et al. 1999). The
establishment of broad coalitions was essential to help overcome these pressures
and provide political support to groups that may otherwise have been forced to
abandon the cause.

Seizing opportunities
Opportunism has played an important part in furthering global advocacy to
support access to affordable HIV medicines. The decision by the consortium of
pharmaceutical industries to sue the South African government was an
unplanned opportunity that turned into a public relations disaster for the
pharmaceutical industry. The case was portrayed in the media as a “David and
Goliath” battle that pitted the health of millions of poor Africans’ health against
the corporate wealth of billion-dollar drug companies (Hoen et al. 2011). The
publicity around the case helped garner global public attention around an issue
that was previously seen as a technical legal issue.
In late 2001, responding to a perceived threat of terrorism, the US government
took steps to secure a stockpile of generic ciprofloxacin, the antibiotic to treat
anthrax, because the patented drug was considered too expensive. The example
was immediately seized upon as an instance of global health hypocrisy, given
that the US government was, at the time, lobbying to protect industry interests
and limit the ability of developing countries to access generic antiretroviral
drugs. The publicity generated helped to garner support for the Ministerial Doha
Declaration in 2001 that prioritized public health over patents in trade
negotiations that were taking place at the time (Boseley 2001).

Building consensus
Advocacy will fail if everyone agrees on the problem but disagrees on the
solution. Initially, while most health advocacy groups agreed that access to HIV
medicines needed to be improved, there was some disagreement among
advocacy groups about what solution should be defended. Should the public
health safeguards that are written into trade law be defended, or should the laws
be rewritten completely? Divergent views existed about what solution to push
for. Some campaigners took the view that the current intellectual property
system was flawed and should be scrapped altogether (Tickell 2001). Others
considered this to be a high-risk advocacy strategy, preferring to defend the
public health safeguards within the system (Hoen et al. 2011). After some
discussion, the latter solution gained precedence, and advocacy efforts were
directed at promoting the public health safeguards that permitted developing
countries from manufacturing or importing generic medicines. The fact that
today over 90 per cent of people on antiretroviral therapy in developing
countries are receiving generic medicines shows that the advocacy strategy was
successful in achieving its goal (Hoen et al. 2011).

Supporting implementation
Arguably, the success of the global campaign for access to antiretroviral drugs
over the past decade can, in great part, be attributed to the fact that many of the
actors involved–patient groups, health providers, developing country
governments – had a practical interest in solving the problem. This meant that
short-term solutions, such as drug donations or time-limited discounts, were not
accepted because it was clear that in the long term they would not solve the
problem. Many of the groups involved in advocacy for affordable medicines
were doing so because they were affected, and once generic medicines became
available, the same groups began to start providing the medicines to patients.
Unless there is a clear commitment to implement the solution, the gains made
will likely be quickly reversed. Those opposed (e.g. patent-holders) will promote
the failure of implementation as evidence that the solution is flawed, while those
in support (e.g. generics companies) will abandon the project due to lack of
demand.
C) How students have supported global advocacy to
increase access to antiretroviral therapy
The past decade has seen an increasing interest in global health as a discipline,
with a proliferation of courses for undergraduates and postgraduates. The
importance of advocacy in advancing health benefits is also a growing
discipline, with advocacy increasingly being taught as part of formal training for
health professionals (Pinto 2008). What is perhaps less well appreciated is the
role that students have played as agents of change.
A striking example of the power of student advocacy comes from the early
days of challenging antiretroviral patents. Students at Yale University discovered
that researchers from the university had discovered a key antiretroviral drug,
stavudine. The university handed over the license to the pharmaceutical
company Bristol-Myers Squibb, who refused to sell the drug at a fair price to
developing countries. Yale students formed a pressure group aimed at shaming
the university for their role in contributing to licensing of inventions for profit
(Borger and Boseley 2001). As a consequence of this pressure, Bristol-Myers
Squibb allowed generic stavudine to be bought and sold within South Africa –
and this led to a thirty-fold reduction in the price of the patented drug in South
Africa (Chokshi 2006).
This action gave rise to a broad coalition of student activists, such as the
Universities Allied for Essential Medicines (UAEM), which is now represented
in over sixty universities across North America, with chapters in Europe, Africa
and Asia (UAEM 2010). Building on the initial advocacy around stavudine,
UAEM's mission evolved to more broadly challenge universities to be more
responsive to the needs of developing countries and to undertake research and
policy analysis to determine how best to improve access to medicines for poor
countries (Chokshi 2006).

D) Conclusions
The scaling-up of antiretroviral therapy in the developing world is one of the
most remarkable achievements in global health. In less than a decade, over 8
million people have been initiated on treatment. Novel international funding
mechanisms and clear targets for future scale-up have been established, and
political commitments are carefully scrutinized by strong civil society activism
to hold governments to account (Schwärtlander et al. 2011).
Global health advocacy efforts are often understood as people in well-
resourced settings advocating for improved health of populations in
disadvantaged settings. The history of HIV treatment activism shows that this is
not always the case. Civil society groups in Asia, Latin America and Africa have
worked together to support each other's advocacy efforts in an effort to improve
access to medicines for all.
This chapter describes a stepwise approach of global health advocacy to
increase access to antiretroviral therapy. In reality, progress has not been linear.
Access to affordable medicines is again becoming a major challenge as a
growing number of people in treatment are developing resistance to first-line
antiretrovirals and need to access more expensive, second-line medications
(Hoen et al. 2011). The need to focus on HIV care as a global health priority is a
concern that requires constant justification. The global HIV programme has been
subjected to constant challenges, including pressure from the pharmaceutical
industry to limit access to generic medicines, increasing global intellectual
property protection that has limited the ability of generics companies to
manufacture affordable versions of newer drugs for HIV, competition for global
health resources from other diseases, concern that disease-specific funding has
been to the detriment of broader goals of health systems strengthening, and
changes in political leadership (Mills et al. 2010). Such challenges require
constant efforts to gather and publish evidence of the broader benefits of
providing HIV treatment at scale.
Global health advocacy focuses on immediate needs and is highly reactive to
daily changes in political commitments. In order to develop a broad strategic
framework for global health advocacy, it has been suggested that advocates work
alongside health policy researchers as a way to encourage more systematic
approaches to data collection and policy analysis (Buse 2008). The emerging
analytical approaches to health policy analysis will doubtlessly be beneficial to
understanding why certain advocacy efforts succeed and others fail (Walt et al.
2008). The challenge will be to connect the lessons learned by academic scholars
to health activists, who are intensely focused on responding to the daily,
immediate challenges of improving the health and wellbeing of disadvantaged
populations across the world.

Case study 11.1

Improving the treatment of malaria


Malaria is responsible for around 800,000 deaths each year, mostly
children in Africa. In the late 1990s it became apparent that Plasmodium
falciparum, the malaria parasite responsible for the fatal form of the
disease, had developed resistance to the standard treatments, chloroquine
and sulfadoxine-pyrimethamine. Countries such as Burundi were
confronted with high mortality due to a malaria epidemic in which more
than 700,000 cases of malaria and several hundred deaths were recorded
in November 2000 (Etchegorry et al. 2001). In response, MSF launched
an advocacy campaign to press for policy change (MSF 2003).
Faced with a lack of data and the reluctance of international technical
advisors and donors to review treatment strategies, MSF undertook a
number of drug resistance surveys to gather data to document the waning
efficacy of chloroquine and press for a revision of treatment guidelines.
Another treatment, artemisinin-based combination therapy (ACT), had
been used in Southeast Asia since the early 1990s, and was highly
effective against strains of P. falciparum resistant to chloroquine.
The WHO had recommended switching to ACT-based treatment since
2001 (Roll Back Malaria and WHO 2001). Between 1996 and 2004,
some forty-three drug efficacy studies were carried out by MSF in
eighteen countries to support advocacy for policy change (Guthmann et
al. 2008). These surveys all reinforced the need to move away from older
drugs in favour of ACTs. However, a number of governments were
resistant to making the policy switch, mainly because of the higher cost
of ACTs. In order to support African governments to make this switch,
international donors became an advocacy target. In 2003, a group of
academics from ten countries published an article accusing international
donors of “medical malpractice” for continuing to fund older, ineffective
treatments (Attaran et al. 2004). Partly in response to these efforts,
donors changed their funding policies to support ACT implementation,
and ACTs became the first-line treatment option across all malaria-
endemic countries.

Case study 11.2

Resurrecting an old drug for African sleeping sickness


Human African trypanosomiasis (or sleeping sickness) is an old disease
which was under control in all endemic countries in the 1950s. However,
lack of human and financial resources and years of conflict in the most
affected countries (such as Sudan, Uganda, Angola and Democratic
Republic of Congo) hampered efforts to monitor and control the disease,
which reemerged in the 1980s. Sleeping sickness is a daily threat to more
than 60 million people in thirty-six countries of sub-Saharan Africa
(Barrett 1999).
Until the late 1990s, the standard treatment for sleeping sickness was
melarsoprol, an arsenic-based medicine that caused fatal side-effects in 5
per cent of patients and, due to rising drug resistance, was ineffective in
up to 30 per cent of patients. In the late 1990s, an alternative drug,
eflornithine, was found to be highly effective against sleeping sickness.
However, eflornithine was originally intended as an anti-cancer drug, and
when clinical studies for cancer failed, the drug was abandoned in 1999.
The WHO, with support from MSF, tried to identify an alternative
manufacturer of eflornithine without success – sleeping sickness was a
neglected disease affecting poor communities in Africa, and was
therefore not deemed attractive by the pharmaceutical companies.
An advocacy opportunity came when another pharmaceutical company
launched a drug called Vaniqa, which was an eflornithine-based women's
facial hair remover. Ad campaigns in women's magazines stated: “If the
mustache that prevents you from getting close is yours (not his), it may
be time for a beauty about-face. Millions of women like yourself battle
unwanted facial hair.” The fact that pharmaceutical companies were
willing to manufacture eflornithine as a beauty product, but not as a cure
for a fatal disease that killed thousands of people in sub-Saharan Africa,
was highlighted in The New York Times (McNeil 2001). There is little
doubt that the media attention sparked by the Vaniqa launch accelerated
eflornithine's subsequent return to production as a treatment for sleeping
sickness. In May 2001, the WHO signed a deal ensuring the continued
production of eflornithine.
The case of sleeping sickness also led to broader attention to the lack
of drug research and development for diseases of the poor. A study
supported by MSF found that fewer than 1 per cent of new chemical
entities marketed in twenty-five years between 1975 and 1999 were for
tropical diseases and tuberculosis (Trouiller et al. 2002). This
understanding of the need to address the broader market failure led MSF
and partners to establish in 2003 the Drugs for Neglected Diseases
Initiative, a collaborative, non-profit drug research and development
(R&D) organization that aims to develop new treatments for Neglected
Diseases.

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Teaching global health ethics*
12 Donald C. Cole, Lori Hanson, Katherine D. Rouleau,
Kevin Pottie and Neil Arya

Objectives
To explore pedagogy for teaching global health ethics and its content,
primarily to high-income country learners
To consider the role of high-income country institutions in supporting
ethical learning and decision-making in global health
To stimulate new ideas on assessing the development of ethical global
health practice

A) Why discuss the teaching of global health ethics?


Earlier chapters of this book have considered the nature of global health
(Chapter 1), key principles that should be considered in the practice of global
health (Chapter 2), and challenges faced in global health clinical work (Chapter
7) and research (Chapter 8). We have also examined the journey of learners
(Chapter 3) and how global health ethics is incorporated into this journey.
This chapter is written by a group of global health clinical and public health
practitioners and researchers who are all educators, actively engaged with
learners in thinking about global health ethics in global health practice. We
argue that a primary goal of teaching global health is to enhance competency in
ethical reasoning. Many students agree (Parikh 2010). Yet a recent systematic
review of global health competencies for medical students makes no reference to
global health ethics (Battat et al. 2010).
An orientation towards health for all and health equity is a key characteristic
of global health, and hence “learning opportunities in ‘global health’ should
adopt and impart [both] the ethical and practical aspects of achieving ‘health for
all’” (Bozorgmehr et al. 2011: 3). This is in keeping with the recent call for
transformative professional education for equity in health (Frenk et al. 2010),
which argues that health professionals need to learn values and leadership skills
to act as change agents (see Figure 12.1).
As educators, we have a responsibility to provide practical tools for learners to
address ethical dilemmas encountered in a wide variety of activities such as
advocacy, public policy, research, education and clinical care. Ethics is a vast
subject area, as noted in Chapters 3–5. In the context of already “crowded”
curricula in most formal health educational programs, adding the fundaments of
theoretical background, ethical principles, normative frameworks such as human
rights, and common ethical reasoning processes can be challenging.
Nevertheless, learners need to develop a certain depth of understanding of
ethical principles if they are to be able to apply more discipline-specific or
context-specific ethical reasoning.
In this chapter we focus on how to foster a sustained commitment to realizing
principles of global health ethics, with a variety of students across diverse sites
of teaching and learning. Throughout, we cite resources and the limited
analogous evidence available. We provide examples from our own experiences,
some more formally in the form of vignettes. We start with our pedagogical
stance, before turning to the contexts and content of global health ethics training.
We next consider the roles of institutions in fostering ethical thinking and
decision-making in global health (see Chapter 9). We note challenges in the
assessment of competency in global health ethics, and some potential future
directions.
Figure 12.1 Framework for transformative and interdependent professional
education for equity in health (Frenk et al. 2010: 53; reproduced with
permission)

B) How should we approach the teaching of global


health ethics?
Three educational approaches hold particular promise for fostering appropriate
attitudes and practices for ethical practice in global health: transformative
education, experiential learning and critical pedagogies. These have informed
web-based curricula (e.g. Ethics of International Engagement and Service-
Learning Project, University of British Columbia), global health certificate
programs for undergraduates (e.g. Making the Links, University of
Saskatchewan), enhanced skills programs in global health for family medicine
graduates (University of Toronto), and approaches in Masters in Community
Health Sciences programs (Hanson 2008).
Transformative education can be conceived as moving learners through a
spiral of iterative learning (Figure 12.2), such as that laid out by participatory
educators in development education (Arnold et al. 1991). This model is aptly
coined “education for a change.” The teacher assists the learner in making sense
of their own experience (1 in the spiral), questioning it (2), discovering new
insights (3) and deepening their understanding of how and why things are as
they are (4), leading to both key lessons (5) and new actions (6). The
teacher/mentor plays the roles of facilitator, advocate and role model. Often the
teacher/mentor shares her/his own actions and reflections and encourages
expressions of the same by the learner.
Experiential learning can be defined most simply as planned learning from
an experience within a clinic, course, program, project or curriculum (1 in the
spiral model).
Figure 12.2 A spiral model for fostering ethical practice in global health
(adapted from Arnold et al. 1991)
The essential element that moves experience into experiential learning is
systematic reflection (2 on the spiral). Service-learning is a type of experiential
learning employed in teaching on social determinants of health, health inequities
and global health. As described by Deeley (2010), service-learning seeks to
provide relevant and authentic professional experiences in real-life settings, with
graduated challenges and opportunities for reflection. Service-learning is a
pedagogical resource utilized across the globe, and at every level of education
(Billig and Furco 2002). A key dimension of service-learning, and one that
underpins its ethical foundation, is that the experience and therefore the learning
is, in part, determined by the community being served. This element was key in
establishing a mandatory six-month practicum in a partner hospital in Malawi
for learners enrolled in the enhanced skills program in global health with the
Department of Family and Community Medicine at the University of Toronto. In
a global health course that was part of the University of Waterloo's distance
Master's in Public Health, many students cited the service-learning component as
the place they truly learned ethical principles, such as the respect for autonomy
and participation. They rated it the best part of their program.
Turning to critical pedagogies, Freire's (1970) and Mezirow's (1997) work
can assist us in understanding key assumptions, emphases, processes and
methods. According to Freire (1970), education can have either an instrumental
or an emancipatory purpose. To achieve the latter, educators need to encourage
the learner to question, to challenge and to see the exercise of unjust power as
problematic (Shor and Freire 1986). The process by which educators can enact
Freire's theories is via the “but why” methodology. It seeks an ever-widening
and deepening analysis of why things are as they are (4 on the spiral). Mezirow
(1997) offers a comprehensive description of the process by which individual
learners construe, validate and reformulate their experience through critical
reflection, eventually learning to act on their own purposes, values and beliefs,
rather than acting uncritically on those of others. Through three major phases of
structured or captured learning moments, learners work through (i) a disorienting
dilemma, (ii) critical reflection, and (iii) reflective discourse (4 on the spiral).
Over time, the associated shifts in perspective lead learners to become more
discriminating, to gain a more integrative perspective (5 on the spiral), to think
more autonomously, and to be willing to make choices or intentionally act upon
these new understandings (6 in the spiral). Case study 12.1 provides an example
of such reflection by a resident in a clinical setting.

Case study 12.1

A clinical encounter generates reflection

A refugee patient from the Horn of Africa presented at a family


physician's office with a relatively new onset of lower abdominal pain.
An unexpected positive pregnancy test led to suspicion of an ectopic
pregnancy. Sensitive to the discomfort of the patient, alone in Canada
with her husband in a third world country, a female resident argued for
referral to Emergency, where a gynecologic examination would be
performed. The male supervisor insisted on an exam in the office, which
the resident performed. The exam did reduce the level of suspicion of an
ectopic, allowing an ultrasound to be arranged electively rather than
precipitating an immediate Emergency Room consultation. The patient
ultimately was found to have a normal pregnancy.

Reflection 1
In a post-consultation discussion, the resident argued that she felt coerced
within the teaching hierarchy by her male supervisor, and that the patient
could not provide true consent. The teaching physician recognized the
gendered, hierarchical nature of his own power over the resident.
However, he perceived the calmer office environment, assistance of a
translator, and clinical examination performed by a female resident, to be
more comfortable for the patient.

Reflection 2
Months later, the resident acknowledged that an emergency referral
would have resulted in greater discomfort and would have been less
respectful of the patient's autonomy. The teaching physician recognized
that his busy office constrained reflection and ethical discussion,
producing a less than desirable learning experience for the resident.

C) Where can we engage in global health ethics


teaching?
Teaching and learning in global health happen in many formal and informal
settings in the course of multiple activities: through discussions in the classroom
or at the bedside, during research field work or in conversations using social
media and e-learning modules, while undertaking policy development, doing
community advocacy, or organizing clinical practice, among others. Because
global health as a field is not located “overseas” or in low- and middle-income
countries (LMICs), learning global health ethics ultimately can occur
everywhere that inequities exist. For example, at the University of Western
Ontario, a Marginalized Community Elective involved medical students in
refugee clinics facilitating reflection on the contexts and situations from which
patients are fleeing, its roots, and the role of high-income country (HIC)
governments in fueling or precipitating conflict. As global health educators, our
challenge is to seize such learning moments intentionally, set up opportunities
for reflection, and support students through the sometimes challenging emotions
associated with reflection (Rich and Parker 1995). Learning about ethical
engagement works best when it is context- and situation-specific.
Personal experience and social location – the personal learning context –
include learners’ sense of their social position i.e. gender, race, class, sexual
orientation and religion, each of which is often associated with social inequities.
Situating such personal contexts is crucial to understanding global health ethics,
particularly understanding one's relative privilege in HICs and, as teachers, our
own power relative to students. The influence of one's cultural background,
personal experience of an LMIC, or powerlessness may afford “insider”
knowledge of appropriate ethical practice (see Chapter 3). For example, one of
us lectured on global health to Palestinian Master's in Public Health students.
After speaking for about half an hour on determinants of health in LMICs, he
suddenly realized how the daily reality of his students – checkpoints, roadblocks,
frequent tear-gassing as part of the Occupation (Horton 2009) – was outside his
usual experience.
Collaboration across different disciplines may provide alternative
conceptualizations of health that assist in understanding global health ethics. In
the development and health literatures, a broad array of diverse, often opposing
views exist on why and how inequities persist. Similar diversity exists on the
sources of human values, rights and responsibilities among philosophers and
applied ethicists (Benatar and Brock 2011), and among different organizations.
The perspective of the headquarters of a humanitarian organization (Schwartz et
al. 2010) is different from that of a Ministry of Health or an academic health
sciences centre. The impact of cultural and jurisdictional context has been
explored extensively for health research ethics (see Cash et al. 2009). Case study
12.2 provides an example where the differences between the perspectives of an
HIC research ethics board and LMIC research participants led one of us to
modify her teaching accordingly.

Case study 12.2

Cross-cultural perspectives on recruitment into community-based


research

A Master's student embarks on a global health research project to


document the life histories of traditional birth attendants (TBAs).The
project had originated from a long-term relationship between her
Canadian supervisor and a Nicaraguan nurse colleague with a thirty-year
history of working with TBAs. The Canadian university Research Ethics
Board queried how the midwives were to be contacted and recruited –
independently by the nurse, with no repercussions for non-participation
on the TBAs.
Mid-way through field work, the Canadian supervisor received an
exasperated email from the student. The procedures she had laid out in
the Research Ethics Board submission had already been violated,
ironically by the friendliness and informality that characterized the
relationships at the core of the study. The nurse had informally
introduced her and her project directly to several midwives, who
immediately and enthusiastically embraced her and said – “So, you want
to write our story? Pues, vamos! (Let's start!)” Every time she had begun
to outline the consent procedure verbally, the TBAs became distracted or
uncomfortable, with one even leaving the room to go stir the bean pot.
Implementation of what was approved by a Canadian Research Ethics
Board was considered rude, and quite possibly suspicious or unethical.
Reflection on this experience has led the supervisor-educator to
incorporate global health research ethics scenarios that juxtapose formal
university ethics procedures with in-field interpretations and she asks
students to analyze and pose resolutions to them.

D) When might we teach global health ethics?


The need for training in ethical reasoning and reflection is common across
clinical medicine, public health and global health educational programs, hence
some joint responsibility should be possible. Timing may be important. At the
University of Western Ontario (Marchington and Lappano 2011), ethical issues
are raised prior to international experiences during pre-departure training and
language courses, as well as afterwards, during post-return reflection and
debriefing. At the postgraduate medicine level, a group of Ontario family
physicians, including the authors, has developed a curriculum framework for
global health in family medicine – emerging principles, competencies and
educational approaches – which includes global health ethics (Redwood-
Campbell et al. 2011).
For the teacher, part of the challenge is to identify key “teachable moments”
in which ethics fundamentals can be applied in the midst of educational activities
that may not be focused primarily on the teaching of ethical reasoning. Ethics by
definition addresses dilemmas and uncertainty around the right action to take.
Global health commonly presents competing values, duties or rights. “Grey
zones” are common and are often layered with complex political and cultural
issues. One of the key tasks in teaching global health ethics is to enable the
learner to become comfortable navigating through decision-making processes in
which complexity and uncertainty are unavoidable.
In addition to a solid understanding of fundamental principles, the ability to
prioritize principles within particular contexts, and the demonstration of the right
level of cultural and political sensitivity and personal reflexivity, are needed. At
the other end of the spectrum, learners need to be able to distinguish between
flexibility and an overly permissive relativism. The effective teaching of global
health ethics should enable the learner to ground decisions in clear, non-arbitrary
principles and to apply them deftly in the context of uncertainty. Encouraging
learners to disclose their reasoning pathway can help distinguish between
relativistic and flexible approaches. Practical guides can be useful, such as a
series of questions for students (Pinto and Upshur 2009) which have been
incorporated into resident materials for consideration prior to international
electives, such as the Public Health and Preventive Medicine policy at McMaster
University.

E) Shaping institutions to support the learning of


global health ethics
In reflecting on bio-ethics training of medical students, Singer (2003)
emphasized the critical place of creating an ethical learning climate or
environment, that is, “paying serious attention to role modeling in the learning
environment and implementing policies and processes to ensure the learning
climate is conducive to ethical development”(Singer 2003: 854). As noted
above, cultures and institutions differ geographically, yet share histories of
structured inequalities, which pose challenges for ethical global health practice
both across and within countries (Benatar and Brock 2011). Academic
institutional ethics were a concern of sub-Saharan African doctoral students in a
course one of us taught, with both tensions and agreement among HIC and
LMIC participants (Case study 12.3).

Case study 12.3

Institutional ethics – perspectives from the South


Funded by a suite of northern private foundations, doctoral students from
a variety of universities and research institutes in sub-Saharan Africa
came together for an intensive, several-week seminar on conducting
population health research in an East African city. Most were lecturers at
their own universities, some already actively engaged in research. The
session on research ethics around a sub-Saharan African case study of a
sexual activity survey went well, but the ethical issues about which
students were passionate had more to do with power relations with their
supervisors or senior researchers, about fairness amidst hierarchy, and
their universities’ limited oversight (institutional ethics). They asked:

Does a senior researcher have the right to put their name as


principal investigator on a grant the student mostly wrote? Maybe
sometimes, depending upon university policy, said others.
How about someone in another department who sits on the
university ethics committee holding up ethical approval of one's
proposal until they get their own research on a related topic done?
Most agreed this was unfair.
Is there some periodicity with which one should be able to meet
with one's supervisor? “Regularly” may be defined in some
universities, says a visiting HIC resource person, as including
feedback within weeks rather than months.
Does one's supervisor have the right to put other colleagues’
names before yours on a paper you have worked hard on? And as
their frustrations continued – How can one obtain recourse
around seeming injustices?

No easy answers, but cultural changes in higher educational institutions


are needed, agreed all.

Tackling relationships between HIC and LMIC institutions in fostering ethical


learning environments is a key part of the Working Group on Ethics Guidelines
for Global Health Training (WEIGHT) (Crump et al. 2010), a set of guidelines
for institutions, trainees and sponsors of field-based global health training. The
WEIGHT group “encourages efforts to develop and implement a means of
assessing the potential benefits and harms of global health training programs”
(Crump et al. 2010: 1178). Their checklists are a good start for international
training partnerships (see Chapter 9). However, promoting “transformation”
requires not only programs but also institutional changes (Hanson 2008; Frenk et
al. 2010) guided by faculty social accountability-responsibility goals. Good
examples of institutional ethics in global health across a range of organizations
are provided by Evert et al. (2011), indicating that consciously building ethical
approaches to global health is possible.

F) How do we evaluate trainee competency in global


health ethics?
The assessment of competency in a domain as complex as global health ethics is
challenging, from definition through measurement to interpretation. Yet
assessing performance is likely important both for learners and teachers (Singer
2003). We can start with awareness of ethical dilemmas, something pre- and
post-session quizzes tap readily. From there, evaluations of pre-departure
training (Xu et al. 2011) and course work could assess both the impacts of
program offerings in preparing students, and students’ understanding of the
content. The specific elements might include knowledge of ethical principles,
demonstration of ethical reasoning, self-reflection on personal motivations,
ability to span levels of responsibility from local to global, and demonstration of
cultural competency in decision-making. Some of these overlap with domains
that bio-ethics colleagues have some experience assessing (Singer 2003), while
others may pose substantial assessment challenges.
How does one assess humility, introspection, solidarity and social justice, as
Pinto and Upshur (2009) have argued for in students studying global health? If
one connects these broader competencies to those associated with global
citizenship, perhaps they could be assessed as externally performed (e.g. when a
student participates in acts of solidarity), or as internalized (e.g. via observations
of shifting discourse) (Hanson 2008). Overall development in global health
ethics might include a summative assessment using a real or fictitious case.
Assessment of critical reasoning through vignettes and matched scales has been
elaborated for medical ethics by Savulescu et al. (1999). Alternatively, a global
assessment by a preceptor could draw upon their own and students’ field notes
involving critical incident debriefing (Rich and Parker 1995). Self-reflection and
key learning moments on global health ethics could be documented, as has been
done with passports in other programmes.

G) Future directions in global health ethics teaching


The development of educational tools including web-based resources, scenarios
such as our vignettes, and assessment methods should take advantage of the
range of learning contexts we have outlined above. For example, the Canadian
Collaboration for Immigrant and Refugee Health and the University of Ottawa
has launched a Refugees and Global Health e-learning Program to ensure early
introduction of global health ethics, advocacy and communication skills for
students entering refugee health service learning programs (Pottie et al. 2012).
As educational scholars, we should also be evaluating our global health ethics
training, including program process, through combinations of questionnaires,
focus groups and tutor evaluation rating scales, similar to Goldie et al.’s (2000)
assessment of a new medical ethics curriculum. A key step in the teaching of
global health ethics will be the involvement of educational partners and
preceptors from resource-poor and vulnerable communities, both within and
outside the health sciences, to teach and assess learners and our joint programs.
As educators committed to mentoring primarily health science learners in global
health ethics, we can learn from an experienced philosopher and global health
ethics teacher, John Dwyer (2011). Dwyer started reaching the nature of global
inequities and theories of justice, but after 15 years he has arrived at
emphasizing responsibility and responsiveness, offering opportunities for
engagement, and offering hope to learners. May we all do so.

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* We wish to acknowledge the contributions of Dan-Bi Cho for searches and


feedback; and the Joint Centre for Bioethics seminar participants, particularly
Solly Benatar and Barry Pakes for important clarifications.
Afterword
Solomon Benatar

Several interlinked global crises in the early twenty-first century are generating
serious challenges to the health and wellbeing of billions of people. In order to
narrow unacceptably wide disparities in health and diminish threats to our planet
and the health of its inhabitants, new forms of societal action are required. Such
innovation could transform health care and social systems that promote health
into better structured, highly functional, more equitable and sustainable
endeavours.
Many of the ideas and much of the content covered in this book, which were
discredited or ignored in the past, are now appropriately becoming credible and
achieving a high profile. Twenty-first-century thinking is required to solve
twenty-first-century problems, just as advances in quantum physics 100 years
ago began to reveal answers to questions that Newtonian physics could not
provide.
Many of today's young professionals are justifiably critical of the world they
have inherited from previous generations, who were swept along by a belief that
the world's problems could be solved through a combination of endless
economic growth, the pursuit of highly individualistic, consumer-driven needs,
and advances in science and technology. The excessive focus on research as the
highest goal has also somewhat eclipsed what it means to be a “good” health
care professional.
While acknowledging the major contributions made to health and longevity
through scientific advances and economic progress, it is arguable that the
potential for human advancement globally is undermined by a failure to
recognize the crucial need for major changes in the values, discourses and
practices that have sustained defective global economic policies and distorted
health care systems to the detriment of social justice.
The aspirations of new generations of health professionals, many of whom
have a deep commitment to reducing local and global inequities and improving
global health, offer the potential for reflexive examination of our goals and
visionary collaborative social endeavours. This book provides readers with
insights into such new frontiers of ethical and social progress, as well as
provocative perspectives on ethical dilemmas in international and global health
projects that could foster transformative pathways into a better future.
Index

Aboriginal people 4, 77–9, 81


ACTG 76 trial 103–4
Adichie, C. 41
advocacy 27, 49–50, 52–4, 115, 136–47, 149, 152, 157
Afghanistan 3
Africa 5, 48, 53, 103, 123, 129–31, 137–45, 151
African-Americans 4, 105
Afsana, K. 117–28
Agreement on the Application of Sanitary and Phytosanitary Measures 63
alliance building 140
altruism 40
Andean Health Organization 126
Anderson, K. 36–46
Andes 126
Angola 144
annexed research 122
anthropologists 40
antiretroviral therapy (ART) 95, 138–43
applied ethics 19–20, 22–3
argumentation 23–5
Aristotle 25
Arnold, R. 37
artemisinin-based combination therapy (ACT) 144
Arya, N. 148–58
Aseffa, A. 117–28
Asia 139, 142–3
assessment 157
asymmetrical relations 119, 121
Australia 4, 49, 75–6
autonomy 89, 98, 121, 131, 151–2
avian flu 63

Bangladesh 4, 123
Beauchamp, T.L. 23, 89
Beecher, H. 105
Belgium 6
Belmont Report 105
Benatar, S.R. 16–35, 52, 159
beneficence 89, 105
best practice 99, 130
biological materials 82
bioterrorism 69
Birn, A.-E. 3–15
Bishop, R. 39
Bradley, M. 119
brain drain 95
Brazil 4, 103, 123–4, 126, 138–9
briefcase model 123, 126
Bristol-Myers Squibb 142
Buddhism 22
Building Partnerships model 122–3
bureaucracy 109, 124
burnout 97
Burundi 144

Cameroon 118
Canada 4, 39, 44, 52, 75–7; challenges 90; clinical work 95; partnerships 119, 124; research 80; teaching
152–4
Canadian Coalition for Global Health Research (CCGHR) 122
Canadian Collaboration for Immigrant and Refugee Health 157
capacity building 79, 81–3, 118–20, 122, 124–6, 130–1, 133
case resolutions 44–5
case studies 36–7, 60, 67–70, 79, 90–100; advocacy 143–5; collaboration 123–6; research 109; Southern
perspectives 130–3; teaching 151–6
Castellano, M.B. 80
casuistry 22
categorical imperative 20
catharsis 42
Catholic University of Health and Allied Sciences - Bugando 125
census data 75
Central African Republic 3
Central America 131
Centre for Development Studies 121
Chad 3
Chan, A.K. 89–102
charity 31, 50–1, 95
checklists 114, 122, 156
Chichewa 90
Childress, J.F. 23, 66, 89
Chile 129
China 75
cholera 60, 62–3, 68–9
Christianity 22, 31
Cipla 139
citizenship 156
civil society 11, 31, 58, 70, 123, 138, 143
climate change 31
clinical trials 103–4, 110
clinical work 89–102, 118
codes of conduct 62, 80–1
Cold War 5, 7
Cole, D.C. 148–58
collaboration 117–28, 130–3, 153, 159
Colombia 49
colonialism 5–8, 12, 38, 75–6, 80, 129, 136
colonization 73, 77–8
Commission on the Social Determinants of Health 3
commodification 81
Commonwealth Fund 7
communism 31
competency evaluation 156–7
confidentiality 111–12
confinement 65–70 Congo 6
consensus building 141
consequentialism 21, 23, 25, 96
containment strategies 65–7
contextual considerations 109–13
contingency plans 113
contracts 110
corporate responsibility 38, 51–2, 141
cosmopolitanism 26
Costello, A. 120, 122
cotrimoxazole preventive therapy (CPT) 95
Cree 75
critical pedagogy 94, 150–1
cross-cultural perspectives 153–4
Cuba 6
Cuban National Institute of Hygiene 126
culture shock 39
Dagi, T.F. 41
Davis, W. 40
Dawson, A. 26
debt 17, 52

Declaration of Alma-Ata 53
Declaration of Helsinki 104–5
Declaration of Independence 47
Declaration on the Rights of Indigenous Peoples 76
Declaration of the Rights of Man 47
decolonizing methodologies 78–9
Deeley, S.J. 151
Democratic Republic of Congo 144
dengue fever 126
Denmark 130
deontology 20–1, 23, 25
descriptive ethics 20
desert-based theories 25
development studies 36
diabetes 76, 78
diarrhea 3, 7
disability-adjusted life years (DALYs) 21
dissemination 82, 121, 123, 133
distributive justice 25, 28, 31, 89
Doha Declaration 141
dominant discourse 17
Durkheim, E. 30–1
Dwyer, J. 157

earthquakes 97–9
East Africa 92, 155
East Asia 6
Eco-Health Initiative 126
Ecuador 123, 126
education 38–9, 47, 53, 76, 78–9; clinical work 94; ethics 148–57; partnerships 118, 125; research 104,
112–14
egalitarianism 25
Emanuel, E. 105, 109
Emergency Prevention System for Transboundary Animal and Plant Pests and Diseases 63
Emergency Surgery Coalition (ESC) 99
English language 75, 90, 119, 123, 133
Ethiopia 123
Eurocentrism 79
Europe 5–7, 31, 48, 62, 77
evaluation 156–7
Evert, J. 156
experiential learning 150–1
exploitation 120, 123

failed states 69
Fanon, F. 82
Farmer, P. 29
fear agenda 18
feedback 43, 91, 132, 156
feminism 23, 25
financial crisis 4, 17
FIOCRUZ 126
First Nation people 76
Food and Agriculture Organization (FAO) 63
food security 17
foot-and-mouth disease 63
Ford Foundation 7
Ford, N. 136–47
Forman, L. 46–57
Forti, S. 119
Framework Convention on Tobacco Control (FCTC) 62
frameworks 22–3, 27, 49, 52, 54–5; advocacy 137–42; governance 66; political context 143; teaching 149,
154
France 6, 47, 63
Freire, P. 151
French language 37, 119
fruitful partnership goals 121
future directions 157
future generations 62

G–8 58
G–20 58
Galeano, E. 31
Gates Foundation 7, 11
General Comment 14, 48
Geneva Conventions 7
Germany 104
GlaxoSmithKline 49
Glew, R.H. 129
Global Compact 51
Global Fund for AIDS, Tuberculosis and Malaria 11
Global Task Force 68
globalization 8, 17–18, 26, 103
Goldie, J. 157
good practice 118
Gostin, L. 66
governance 58–72
Greenland 76
grey zones 154
Guatemala 49, 104, 132
guideline documents 105, 114–15, 126–7, 130–3
Guidelines for Research in Partnership with Developing Countries 121

H1N1 63
H5N1 63, 69–70
Habte, D. 117–28
Haiti 97–9 Hajj 6
Hanson, L. 148–58
Hatfield, J. 117–28
Health for All by the Year 2000 7
Health Cluster 69
hegemony 78
hero myth 41
High-Income Countries (HICs) 8–9, 11, 30, 38, 40; clinical work 89, 91–3; human rights 51–2, 54;
Indigenous people 75, 77; partnerships 118–23; research 103; teaching 152–3, 155–6
Hinduism 22
HIV/AIDS 8, 10, 30, 37, 45; challenges 94–5; collaboration 118; human rights 50, 53; political context
137–43; research 76, 104
homelessness 38
human rights 8, 11, 21, 27–8, 38; governance 65–7; Indigenous people 76; political context 138, 140; role
46–57; teaching 149, 153
Human Rights Responsibilities for Pharmaceutical Companies 51
Humanitarian Charter 12
humanitarianism 41–2, 60, 68, 97–100, 105, 136, 153
humility 21, 27, 30, 38, 40–1; challenges 89; clinical work 92; human rights 51; teaching 156
Hunter, D. 26
Hussein, G. 103–16

Iceland 3
ideology 36, 77–8
Illich, I. 40
illiteracy 112
imperialism 5–7, 12, 79, 129
implementation 142
India 36, 49–50, 75, 103, 121, 138–40
Indigenous people 4, 6, 38, 73–85
Indigenous Physicians of Canada 74
Indonesia 4
industrial revolution 5
industrial waste 76
industrialization 113, 131
infection control 60, 62–7
information 18
informed consent 92–4, 98, 110–12, 114, 152, 154
institutional learning 155–6
intellectual property rights 18, 140–1, 143
International Classification of Diseases (ICD) 62
International Committee of the Red Cross (ICRC) 7
international community 68, 70
International Council of Nurses 12
International Covenant on Civil and Political Rights 66
International Covenant on Economic, Social and Cultural Rights (ICESCR) 48
International Development Research Centre (IDRC) 119, 122
International Federation of Red Cross and Red Crescent Societies 12
international health 5, 7–9, 12, 38
International Health Board and Division 7
International Health Regulations (IHR) 62, 67–70
International Labour Organization (ILO) 51, 60
international law 47–52, 60, 68, 139–40
international level 11
International Monetary Fund (IMF) 9, 11, 49, 58
International Sanitary Bureau for the Americas 6
International Sanitary Conference 6
International Sanitary Regulations (ISR) 62
interpretation 82, 154
introspection 37, 40–3, 51, 89, 156
Islam 22
Israel 49
Italian language 64
Italy 63

Jamaica 6
Japan 3, 7, 104
jaundice 95
John Paul II, Pope 31
Judaism 22
justice 25–30, 41, 51, 53, 82; clinical work 89, 96–7; future trends 159; Indigenous people 82; partnerships
118; research 104–5, 110; Southern perspectives 132, 134;teaching 156–7

Kant, I. 20–1
Kass, N. 66
Kellogg Foundation 7
Kenya 138
Kerala Research Programme on Local Level Development 121
Kiromera, A. 89–102
knowledge production 118, 127
Krieger, N. 28
Kumar, A. 117–28

Laabes, E.P. 129


language training 91, 94
Latin America 50, 131, 139, 143
Lavery, J.V. 109
leadership 60, 81, 111–13, 115, 120; political context 143; Southern perspectives 131, 133; teaching 149
League of Nations Health Organization (LNHO) 6
learners 36–46
Lebanon 49
leprosy 63, 124
libertarianism 25
life expectancy 3–4, 76, 139
lifelong learning 42
Litch, J.A. 39
Liverpool School of Tropical Medicine 130
local reviews 109–10
logistics 37
López, V. 129–35
Lourdes Larrea, M. de 117–28
Low- and Middle-Income Countries (LMICs) 3–4, 8–11, 31, 38–9, 50; clinical work 89, 91, 93–4;
partnerships 118–23, 125; research 103–5, 109–13, 115; Southern perspectives 129–31, 133–4; teaching
152–3, 155–6
Lower-Income Countries (LICs) 9, 30, 75, 77–8

McMaster University 155


maize 17
malaria 3, 6, 95, 118, 137, 143–4
Malawi 90, 131, 151
Mann, J. 49, 54
Maori people 76, 78
marginalization 28–9, 31, 38, 44, 50; clinical work 96; Indigenous people 73, 75, 77, 79; political context
136; teaching 152
market forces 8, 18, 25, 54
marketing 18, 138, 145
Marsh, S. 89–102
Mécins Sans Frontiès (MSF) 7, 31, 99, 105, 139, 144–5
media 18, 141, 145
medical tourism 39
Medicines Act 140
memoranda of understanding 91
meningitis 95, 139
Mezirow, J. 151
Michell, H. 75
Milbank Fund 7
Millennium Development Goals (MDGs) 52
Moral Science 104
moral theory 20
mortality rates 3–4, 76–7, 144
mother-to-child transmission (MTCT) 50
multiculturalism 94
Murphy, J. 117–28
Muula, A. 131

neocolonialism 40, 99
neoliberalism 8, 17–18, 28, 54
Netherlands Development Assistance Research Council (RAWOO) 121–2
NeTropica 131 Neufeld, V.R. 117–28
New Constitutionalism 17
New Zealand 75–6
Nicaragua 153
Nixon, S. 46–57
Nomenclature with Respect to Diseases and Causes of Death 62
non-cognitivism 21–3
non-governmental organizations (NGOs) 7, 9–10, 27, 45, 58; clinical work 89, 95, 97; governance 60, 69;
partnerships 122, 124; political context 138, 140; research 111
nonmaleficence 89, 92
normative ethics 20
North 30–1, 40, 42–4, 77, 119, 121, 123,
129–34
North America 5, 7, 9, 31, 48, 95, 140, 142
Nuremberg trials 104

Obama, B. 104
obesity 76
OCAP 82
Office International des Epizooties (OIE) 63
Oldham, G. 118
oral history 77
orientation 37–8
Other 5, 41, 79
Ottawa Charter for Health Promotion 30, 53

Palestine 153
Pan-American Health Organization 6
Panama Canal 6–7
pandemic management 63–5
Panel on Threats, Challenges and Change 69
paradigm shifts 122
Partnership Assessment Tool (PAT) 123, 125
partnerships 9, 31–2, 43, 52, 81; benefits 118–19; challenges 91, 97, 105, 110, 114–15, 119–20; definition
118; principles 120–6; role 117–28; Southern perspectives 131; teaching 156–7
patents 30, 137, 140–3 paternalism 41, 131 peer review 133 penicillin 105 Peru 49 pesticides 76
pharmaceuticals 18, 30, 49, 51–2, 137–43, 145
Philpott, J. 41, 89–102
Pinto, A.D. 3–35, 73–85, 89, 156
placebo controls 103–4
plague 60, 62–4
pneumonia 3, 10
Pogge, T.W. 26, 52
Poland 31
policy windows 137
political context 113, 136–47
Political Declaration on the Prevention and Control of Non-Communicable Diseases 54
Political Declaration on the Social Determinants of Health 54 political economy 9–11, 17, 31 population
level 38, 52–3, 67 Portugal 5
Portuguese language 124
post-colonial syndrome 129
Pottie, K. 148–58
poverty 17, 26, 42, 44, 49; human rights 52; Indigenous people 76, 78; political context 141
power relations 16–17, 29, 31, 42, 52; clinical work 99; human rights 54; partnerships 120; teaching 152–3,
155
Presidential Commission for the study of Bloethical issues 105, 110
Primary Health Care Management (AGAP) 123–4
priority setting 120
private sector 58, 89
privatization 17
proportionality 66
public goods 27
Public Health Act 136
public health emergencies of international concern (PHEIC) 67–8
public sector 89, 95

quality-adjusted life years (QALYs) 21

Rawls, J. 25
Razack, S.H. 42
re-learning 37–8, 43–4
reasoning 23–5
reciprocity 82, 134
recruitment 153–4
reflective questions 90–1, 93, 96, 98
refugees 152, 157
Refugees and Global Health Program 157
rehabilitation services 98
relativism 21–3
religion 22
Republic of Korea 3
research 73, 79–82, 103–16, 121, 130–3, 153–6
Research Ethics Board 153–4
reserve system 77
resistance 73, 77–8
resource allocation 16–17, 25, 28, 31, 94–7, 119–20
right to health 48–50, 52–4
rights-based approaches 49–51
rinderpest 63
Rio Health Conference 4
Rockefeller Foundation 7
role models 99, 150, 155
Rouleau, K. 148–58
Royal Commissions 77
Russia 75
Rwanda 37, 44

Sami people 76
Sanchez, A. 129–35
SARS 68
Savulescu, J. 157
Scotland 4
security considerations 113
Security Council 69
self-determination 74, 76, 80–1
self-reflection 37, 44
September 11 2001 8, 18
service learning 130, 151, 157
sexually transmitted disease 76
Shah, S. 39
Sharma, M. 36–46
Singer, P.A. 26, 155
Singh, J.A. 58–72
Siracusa Principles 53, 66
sleeping sickness 144–5
Smith, L.T. 78, 80
Smylie, J. 73–85
social distancing 64–5
social factors 67–70
social justice 25, 27–30, 41, 53, 82; clinical work 89, 97; future trends 159; partnerships 118; research 110;
Southern perspectives 132, 134
social movements 29–30, 70
social structure 113
solidarity 27, 30–2, 52, 82, 89, 118, 134, 156–7
Sollicitudo Rei Socialis 31
South 30, 39–40, 43, 77, 113; partnerships 121–3; perspectives 129–35, 155–6
South Africa 50, 52, 103, 138, 140–2
South America 48, 123
South Asia 5–6, 123
Southeast Asia 144
Soviet Union 7
Spain 5
stereotypes 41–2
stewardship 81
structural adjustment 54
student activism 142
study placements 118
Sub-Saharan Africa 30, 37, 138, 144–5, 155
Sudan 144
Suez Canal 6
sustainability 43–4, 82–3, 109, 114, 125, 130–1, 159
Sweden 49, 119
Swedish International Development Agency (SIDA) 119
Swedish International Development Cooperation Agency 131
Swiss Commission for Research Partnerships with Developing Countries 121–2
Switzerland 60
syphilis 104–5
systematic approaches 24

Tanzania 44, 125


taxation 28
teachable moments 154
teaching 148–58
terrorism 141
Thailand 138–9
Third World 7
Tindana, P.O. 110
trade liberalization 17–18
traditional birth attendants (TBAs) 153–4
trainee competency 156–7
transdisciplinarity 22
transformative education 150
translation services 91, 94, 111–12, 114, 124, 152
transnational competency 94
Treatment Action Campaign 140
Tripartite Declaration of Principles Concerning Multinational Enterprises and Social Policies 51
tropical medicine 5, 7–9, 12, 38
trypanosomiasis 144–5
tuberculosis (TB) 7, 67–8, 76, 94, 118, 124, 137, 145
Tuskegee syphilis studies 105

Uganda 49, 138, 144


UNAIDS 8, 139
unemployment 17, 76
United Kingdom (UK) 136
United Nations Committee on Economic, Social and Cultural Rights (UNCESCR) 48, 54
United Nations International Children's Emergency Fund (UNICEF) 7, 60
United Nations (UN) 7, 11, 47–52, 54, 58; governance 60, 63, 69; Indigenous people 76; political context
139, 141
United States Institute of Medicine 8
United States (US) 4, 6–8, 17, 39, 47
Universal Declaration of Human Rights 47–8, 66
universalism 20–1
Universities Allied for Essential Medicines (UAEM) 142
University Andina Simon Bolivar 126
University of British Columbia 126
University of Calgary 125
University of Ottawa 157
University of Toronto 123, 151
University of Waterloo 151
University of Western Ontario 152, 154
University of Zambia 124
Upshur, R.E.G. 3–35, 66, 89, 103–16, 156
utilitarianism 21, 52, 96

values 11–12, 18, 23–4, 27, 40; clinical work 99; future trends 159; human rights 51; Indigenous people 80,
82; principles 30; research 113; Southern perspectives 129; teaching 149, 151, 153
Vienna, Congress of 6
Virchow, R. 136
virtue theory 21, 25
visceral experience 37, 39–40, 44

welfare theory 25
West Africa 45
Working Group on Ethics Guidelines for Global Health Training (WEIGHT) 130, 156
Working Group on International Research Collaborations (I-Group) 130
Workshop on Examining Core Elements of International Collaboration 130
World Bank 8–9, 11, 49, 58
World Conference on Social Determinants of Health 4
World Economic Forum 4
World Health Assembly (WHA) 60, 62
World Health Organization (WHO) 7–8, 27–8, 48, 60–3, 67–70, 138–9, 144–5
World Medical Association 12, 104
World Organisation for Animal Health 63
World Trade Agreements 140
World Trade Organization (WTO) 49, 63
World War I 7
World War II 7, 47, 60, 104
worldviews 43–4, 79–81
Wu, T. 39

Yale University 142


yellow fever 6, 60, 62–3

Zambia 124
Zambian Forum for Health Research (ZAMFOHR) 124
Zarowsky, C. 121
Zimbabwe 68–9, 94, 130
zoonoses 60, 62–3
Zumla, A. 120, 122

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