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Marilys Guillemin

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Marilys Guillemin is a sociologist of health and illness, and Professor in the Health Humanities and Social Sciences Unit, in the Centre for Health Equity, School of Population and Global Health at the University of Melbourne. She has conducted research and published widely in the areas of sociology of health, illness and technology, innovative research methodologies, research practice, narrative ethics, and ethical practice in research and in health care. Marilys has also undertaken research and published widely in the area of visual and sensory methodologies. She is particularly interested in the ethical and methodological challenges of visual research.
Phone: 61 3 8344 0827
Address: Associate Dean Learning and Teaching, Faculty of Medicine, Dentistry and Health Sciences
Professor, Centre for Health Equity, Melbourne School of Population and Global Health | The University of Melbourne
Project Lead, University of Melbourne Science in Australia Gender Equity (SAGE) Athena SWAN initiative
Room 225, Level 2, Alan Gilbert Building, 161 Barry St, Parkville, Victoria, 3010

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Papers by Marilys Guillemin

George Libman Engel

The Palgrave Handbook of Social Theory in Health, Illness and Medicine, 2015

Visual methods and ethics: Stories from the field

Visual Methodologies, 2015

Re/formulating Ethical Issues for Visual Research Methods

This paper discusses six categories of key ethical issues that are important to consider when usi... more This paper discusses six categories of key ethical issues that are important to consider when using visual methods in social research. The categories were identified during workshop discussions with researchers working across disciplines and using a range of visual methods. They have been used to inform guidelines for the ethical conduct of research using visual methods. The categories represent both familiar and emerging ethical challenges. They include widely accepted strategies for meeting ethical obligations to ensure participants’ informed consent , to maintain confidentiality , and to design and conduct research that minimises harm . Three further categories represent more novel ethical issues that are particularly prominent in visual methods: managing fuzzy boundaries around the multiple purposes that visual research may serve, addressing questions of authorship and ownership of visual products generated during research, and dealing with representation and audiences when diss...

Advancing the ethical use of digital data in human research: challenges and strategies to promote ethical practice

Ethics and Information Technology, 2018

The proliferation of digital data and internet-based research technologies is transforming the re... more The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explored emerging ethical issues associated with the expanding use of digital data for research. The project involved consulting with researchers from a broad range of disciplinary fields. These discussions identified five key sets of issues and informed the development of guidelines orientated to meet the needs of researchers and ethics committee members. We argue that establishing common approaches to assessing ethical risks of research involving digital data will promote consistency in the ethical standards for research, enable the smooth functioning of ethics committees, and sustain public confidence in research. We conclude with recommendations for the development of educational resources for ethics committees, data management guidelines and further public education.

Technologies and health critical compromises

George Libman Engel: The Biopsychosocial Model and the Construction of Medical Practice

The Palgrave Handbook of Social Theory in Health, Illness and Medicine, 2015

Pick up most medical practice textbooks published in recent decades and the term ‘biopsychosocial... more Pick up most medical practice textbooks published in recent decades and the term ‘biopsychosocial’ is prominent. Over this period, medical curricula internationally have been structured around the teaching of the biopsychosocial model, involving an integration of the biological, psychological and social (Neghme 1985; Suchman 2005). In a survey of 54 medical schools in 1997- 1999, Waldstein et al. (2001) found that 80 to 93 per cent used the conceptualisation and/or measurement of psychosocial factors in their curricula. The biopsychosocial approach is an attempt to redress the traditional model of biomedicine, with its predominant focus on pathophysiology and biological approaches to disease, and its lack of a comprehensive inclusion of the social and psychological aspects of health and illness.

Guidelines for Ethical Visual Research Methods

Road Trips and Guideposts: Identifying and Navigating Ethical Tensions in Research-Based Theater

Qualitative Inquiry

Research-based Theater (RbT) combines research and theater to create novel opportunities for inqu... more Research-based Theater (RbT) combines research and theater to create novel opportunities for inquiry and knowledge translation. Ethical tensions are part of this process. We explore some tensions that can emerge through three types of ethics: professional ethics, institutional research ethics, and everyday ethics. We then propose a series of ethical guideposts developed by engaging RbT practitioners in reflecting on their practice. Like signs on a highway, ethical guideposts do not mandate a destination but rather flag that an approaching decision needs consideration. These guideposts seek to encourage greater attention to ethical aspects of RbT projects and to support ethical decision-making.

Body mapping in process

Reflexivity: Overcoming Mistrust between Research Ethics Committees and Researchers

The SAGE Handbook of Qualitative Research Ethics, 2018

10.1177/1077800403262360 ARTICLEQUALITATIVE INQUIRY / April 2004Guillemin, Gillam / “ETHICALLY IMPORTANT MOMENTS” Ethics, Reflexivity, and “Ethically Important Moments ” in Research

Ethical tensions are part of the everyday practice of doing research—all kinds of research. How d... more Ethical tensions are part of the everyday practice of doing research—all kinds of research. How do researchers deal with ethical problems that arise in the practice of their research, and are there conceptual frameworks that they can draw on to assist them? This article examines the relationship between reflexivity and research ethics. It focuses on what con-stitutes ethical research practice in qualitative research and how researchers achieve ethi-cal research practice. As a framework for thinking through these issues, the authors dis-tinguish two different dimensions of ethics in research, which they term procedural ethics and “ethics in practice. ” The relationship between them and the impact that each has on the actual doing of research are examined. The article then draws on the notion of reflexivity as a helpful way of understanding both the nature of ethics in qualitative research and how ethical practice in research can be achieved.

Gaining insight into women's knowing of postnatal depression using drawings

Ethics and visual research methods: Theory, methodology, and practice

Investigating human research ethics in practice: project report

Conducting research that is ethical is indisputably important. Considerable time and effort is sp... more Conducting research that is ethical is indisputably important. Considerable time and effort is spent by Australian researchers and Human Research Ethics Committees (HRECs) in the process of ethical review to ensure high ethical standards in research practice. This work can be situated in the broader context of health research in developed countries where research proposals are reviewed by Institutional Review Boards (IRBs) in the US, Research Ethics Boards (REBs) in Canada, and Local and Multi-centre Research Ethics Committees in the UK (LRECs and MRECs). Australian ethics committee members are expected to use the ethical guidelines in the National Statement on the Ethical Conduct of Research Involving Humans 1 as the basis for their decisions. Researchers should design their research in accordance with the guidelines. However, little is known about how research ethics is put into practice, and Investigating Human Research Ethics in Practice set out to fi ll this gap. Investigating Human Research Ethics in Practice was funded by the Australian Research Council from 2006-2008. It inquired into the ethical frameworks used by researchers and HREC members. Were they compatible with each other; and were they congruent with the National Statement? The focus of the study was on health research, as this type of research is rich in ethical issues and has the longest history of formal ethical review. Health research is also suffi ciently broad to allow frameworks of different research areas-such as biomedical, clinical/medical, nursing and allied health, public health and social health-to be explored.

What ethical resources are available to Alcohol and Other Drug practitioners? A systematic review

Clinical Ethics, 2017

Clinical work in Alcohol and Other Drugs has not generally been an area of focus for ethicists. L... more Clinical work in Alcohol and Other Drugs has not generally been an area of focus for ethicists. Likewise, ethics is not usually part of Alcohol and Other Drugs training or practice. This means that resources available to Alcohol and Other Drugs clinicians navigating ethical challenges are not widely available. This paper describes a systematic review of literature at the intersection of ethics and clinical practice in Alcohol and Other Drugs. The review will potentially benefit Alcohol and Other Drug practitioners by outlining what resources currently available and will also highlight potential directions for future research. The review searched for all published work in ethics at the intersection with Alcohol and Other Drugs. Searches within academic databases, the World Wide Web, and within journal Tables of Contents identified 18 relevant papers from 1985 onwards. An inductive process of categorisation produced two categories of this literature. The first was codes of ethics, further divided into rule-based codes (n = 4) and principle-based codes (n = 10). The second category was of empirical ethics (n = 4). Rule-based codes are not considered useful to practitioners. They can discourage reflection and potential irrelevance of rules. Principle-based codes are more useful, and principles specific to Alcohol and Other Drugs were identified in some literature. Empirical ethics enable the identification of ethics in everyday clinical work, rather than categorising ethics as a special case in particularly challenging circumstances. The four empirical ethics papers describe highly specific situations, guiding practitioners in these areas. This small body of work demonstrates that future research in empirical ethics is of potential benefit to research in ethics and to clinical practice in Alcohol and Other Drugs.

A Collaborative Inter-Disciplinary Approach to the Evaluation of the Clinicians Health Channel

The Clinicians Health Channel (CHC) is a web-site providing online access to current, accurate an... more The Clinicians Health Channel (CHC) is a web-site providing online access to current, accurate and reliable sources of information to help inform and assist clinicians in decision making, research and education. Resources include an electronic health library with citation databases and full text journals, links to other clinical reference materials, such as guidelines and protocols, and provision for discussion forums on clinical topics. An interdisciplinary, collaborative team from the University of Melbourne is undertaking an evaluation to determine how successfully the introduction of the CHC has met its original aims specifically in relation to the development, implementation and impact on changing behaviour and increasing usage of evidence based health care. A number of key research areas have been identified as important to the evaluation and development of the CHC. These identified research areas fall naturally into the three dimensions technical, social and behavioural of ou...

Enhancing Meaning-Making in Research through Sensory Engagement with Material Objects

There has been increasing awareness and interest in the role of the senses in qualitative researc... more There has been increasing awareness and interest in the role of the senses in qualitative research. We build on this work by focusing on the use of material objects in research. Using material objects in qualitative research, particularly those selected by research participants, offers a different kind of engagement that can add richness and complexity to the knowledge generated. Material objects can either be participant-selected or researcher-selected, each having its own benefits and challenges. Using examples, we explore how participants sensorially engage with these objects, using visual, auditory, olfactory, and tactile means. This engagement with material objects, particularly those that are personally meaningful to participants, is useful when examining research topics that may be sensitive or abstract; it offers the potential for participants to identify salient associations and/or express what may be otherwise unsayable. We discuss practical strategies in using material ob...

Adding the agentic capacities of visual materials to visual research ethics

The focus of visual research ethics has largely been on the ethical effects of visual research on... more The focus of visual research ethics has largely been on the ethical effects of visual research on participants. There is increasing identification of how researchers are ethically affected by visual research. However, there has been no sustained examination into how visual materials themselves have ethical consequences in visual research. In this paper we argue visual research presents with particular ethical challenges because of the agentic capacities of the visual materials themselves. The paper draws on a research project where participants generated two different kinds of visual materials: timeline charts and photos. We show how timeline charts and photos have contrasting imaginative, bodily, memory and synaesthetic capacities. The agentic capacities of the visual materials act in specific ways to co-create a network of relations across the research encounters. This network of relations has the capacity to act in particular ethical ways with serious consequences not just for re...

Editorial: Visual methods and ethics: Stories from the field

This special issue on ethical issues in visual research arose from our collective observation tha... more This special issue on ethical issues in visual research arose from our collective observation that there is an urgent need for researchers to share and reflect upon stories about the ethical challenges they are facing in their research, including how they have navigated the formal procedural ethics review process and how they have identified and responded to ethical challenges in their research practice. Our approach in this special issue has been to call for tales from the field that raise new questions and highlight concerns within the context of real and ongoing research rather than attempt to derive solutions to ethical problems in an abstract or decontextualized way. The overall collection is therefore one that highlights the importance of good descriptive self-reflexive accounts of ethical and methodological issues, especially in terms of what is useful for other visual researchers and also for members of research ethics boards or committees (REB/REC).

HREC administrators: the invisible link

George Libman Engel

The Palgrave Handbook of Social Theory in Health, Illness and Medicine, 2015

Visual methods and ethics: Stories from the field

Visual Methodologies, 2015

Re/formulating Ethical Issues for Visual Research Methods

This paper discusses six categories of key ethical issues that are important to consider when usi... more This paper discusses six categories of key ethical issues that are important to consider when using visual methods in social research. The categories were identified during workshop discussions with researchers working across disciplines and using a range of visual methods. They have been used to inform guidelines for the ethical conduct of research using visual methods. The categories represent both familiar and emerging ethical challenges. They include widely accepted strategies for meeting ethical obligations to ensure participants’ informed consent , to maintain confidentiality , and to design and conduct research that minimises harm . Three further categories represent more novel ethical issues that are particularly prominent in visual methods: managing fuzzy boundaries around the multiple purposes that visual research may serve, addressing questions of authorship and ownership of visual products generated during research, and dealing with representation and audiences when diss...

Advancing the ethical use of digital data in human research: challenges and strategies to promote ethical practice

Ethics and Information Technology, 2018

The proliferation of digital data and internet-based research technologies is transforming the re... more The proliferation of digital data and internet-based research technologies is transforming the research landscape, and researchers and research ethics communities are struggling to respond to the ethical issues being raised. This paper discusses the findings from a collaborative project that explored emerging ethical issues associated with the expanding use of digital data for research. The project involved consulting with researchers from a broad range of disciplinary fields. These discussions identified five key sets of issues and informed the development of guidelines orientated to meet the needs of researchers and ethics committee members. We argue that establishing common approaches to assessing ethical risks of research involving digital data will promote consistency in the ethical standards for research, enable the smooth functioning of ethics committees, and sustain public confidence in research. We conclude with recommendations for the development of educational resources for ethics committees, data management guidelines and further public education.

Technologies and health critical compromises

George Libman Engel: The Biopsychosocial Model and the Construction of Medical Practice

The Palgrave Handbook of Social Theory in Health, Illness and Medicine, 2015

Pick up most medical practice textbooks published in recent decades and the term ‘biopsychosocial... more Pick up most medical practice textbooks published in recent decades and the term ‘biopsychosocial’ is prominent. Over this period, medical curricula internationally have been structured around the teaching of the biopsychosocial model, involving an integration of the biological, psychological and social (Neghme 1985; Suchman 2005). In a survey of 54 medical schools in 1997- 1999, Waldstein et al. (2001) found that 80 to 93 per cent used the conceptualisation and/or measurement of psychosocial factors in their curricula. The biopsychosocial approach is an attempt to redress the traditional model of biomedicine, with its predominant focus on pathophysiology and biological approaches to disease, and its lack of a comprehensive inclusion of the social and psychological aspects of health and illness.

Guidelines for Ethical Visual Research Methods

Road Trips and Guideposts: Identifying and Navigating Ethical Tensions in Research-Based Theater

Qualitative Inquiry

Research-based Theater (RbT) combines research and theater to create novel opportunities for inqu... more Research-based Theater (RbT) combines research and theater to create novel opportunities for inquiry and knowledge translation. Ethical tensions are part of this process. We explore some tensions that can emerge through three types of ethics: professional ethics, institutional research ethics, and everyday ethics. We then propose a series of ethical guideposts developed by engaging RbT practitioners in reflecting on their practice. Like signs on a highway, ethical guideposts do not mandate a destination but rather flag that an approaching decision needs consideration. These guideposts seek to encourage greater attention to ethical aspects of RbT projects and to support ethical decision-making.

Body mapping in process

Reflexivity: Overcoming Mistrust between Research Ethics Committees and Researchers

The SAGE Handbook of Qualitative Research Ethics, 2018

10.1177/1077800403262360 ARTICLEQUALITATIVE INQUIRY / April 2004Guillemin, Gillam / “ETHICALLY IMPORTANT MOMENTS” Ethics, Reflexivity, and “Ethically Important Moments ” in Research

Ethical tensions are part of the everyday practice of doing research—all kinds of research. How d... more Ethical tensions are part of the everyday practice of doing research—all kinds of research. How do researchers deal with ethical problems that arise in the practice of their research, and are there conceptual frameworks that they can draw on to assist them? This article examines the relationship between reflexivity and research ethics. It focuses on what con-stitutes ethical research practice in qualitative research and how researchers achieve ethi-cal research practice. As a framework for thinking through these issues, the authors dis-tinguish two different dimensions of ethics in research, which they term procedural ethics and “ethics in practice. ” The relationship between them and the impact that each has on the actual doing of research are examined. The article then draws on the notion of reflexivity as a helpful way of understanding both the nature of ethics in qualitative research and how ethical practice in research can be achieved.

Gaining insight into women's knowing of postnatal depression using drawings

Ethics and visual research methods: Theory, methodology, and practice

Investigating human research ethics in practice: project report

Conducting research that is ethical is indisputably important. Considerable time and effort is sp... more Conducting research that is ethical is indisputably important. Considerable time and effort is spent by Australian researchers and Human Research Ethics Committees (HRECs) in the process of ethical review to ensure high ethical standards in research practice. This work can be situated in the broader context of health research in developed countries where research proposals are reviewed by Institutional Review Boards (IRBs) in the US, Research Ethics Boards (REBs) in Canada, and Local and Multi-centre Research Ethics Committees in the UK (LRECs and MRECs). Australian ethics committee members are expected to use the ethical guidelines in the National Statement on the Ethical Conduct of Research Involving Humans 1 as the basis for their decisions. Researchers should design their research in accordance with the guidelines. However, little is known about how research ethics is put into practice, and Investigating Human Research Ethics in Practice set out to fi ll this gap. Investigating Human Research Ethics in Practice was funded by the Australian Research Council from 2006-2008. It inquired into the ethical frameworks used by researchers and HREC members. Were they compatible with each other; and were they congruent with the National Statement? The focus of the study was on health research, as this type of research is rich in ethical issues and has the longest history of formal ethical review. Health research is also suffi ciently broad to allow frameworks of different research areas-such as biomedical, clinical/medical, nursing and allied health, public health and social health-to be explored.

What ethical resources are available to Alcohol and Other Drug practitioners? A systematic review

Clinical Ethics, 2017

Clinical work in Alcohol and Other Drugs has not generally been an area of focus for ethicists. L... more Clinical work in Alcohol and Other Drugs has not generally been an area of focus for ethicists. Likewise, ethics is not usually part of Alcohol and Other Drugs training or practice. This means that resources available to Alcohol and Other Drugs clinicians navigating ethical challenges are not widely available. This paper describes a systematic review of literature at the intersection of ethics and clinical practice in Alcohol and Other Drugs. The review will potentially benefit Alcohol and Other Drug practitioners by outlining what resources currently available and will also highlight potential directions for future research. The review searched for all published work in ethics at the intersection with Alcohol and Other Drugs. Searches within academic databases, the World Wide Web, and within journal Tables of Contents identified 18 relevant papers from 1985 onwards. An inductive process of categorisation produced two categories of this literature. The first was codes of ethics, further divided into rule-based codes (n = 4) and principle-based codes (n = 10). The second category was of empirical ethics (n = 4). Rule-based codes are not considered useful to practitioners. They can discourage reflection and potential irrelevance of rules. Principle-based codes are more useful, and principles specific to Alcohol and Other Drugs were identified in some literature. Empirical ethics enable the identification of ethics in everyday clinical work, rather than categorising ethics as a special case in particularly challenging circumstances. The four empirical ethics papers describe highly specific situations, guiding practitioners in these areas. This small body of work demonstrates that future research in empirical ethics is of potential benefit to research in ethics and to clinical practice in Alcohol and Other Drugs.

A Collaborative Inter-Disciplinary Approach to the Evaluation of the Clinicians Health Channel

The Clinicians Health Channel (CHC) is a web-site providing online access to current, accurate an... more The Clinicians Health Channel (CHC) is a web-site providing online access to current, accurate and reliable sources of information to help inform and assist clinicians in decision making, research and education. Resources include an electronic health library with citation databases and full text journals, links to other clinical reference materials, such as guidelines and protocols, and provision for discussion forums on clinical topics. An interdisciplinary, collaborative team from the University of Melbourne is undertaking an evaluation to determine how successfully the introduction of the CHC has met its original aims specifically in relation to the development, implementation and impact on changing behaviour and increasing usage of evidence based health care. A number of key research areas have been identified as important to the evaluation and development of the CHC. These identified research areas fall naturally into the three dimensions technical, social and behavioural of ou...

Enhancing Meaning-Making in Research through Sensory Engagement with Material Objects

There has been increasing awareness and interest in the role of the senses in qualitative researc... more There has been increasing awareness and interest in the role of the senses in qualitative research. We build on this work by focusing on the use of material objects in research. Using material objects in qualitative research, particularly those selected by research participants, offers a different kind of engagement that can add richness and complexity to the knowledge generated. Material objects can either be participant-selected or researcher-selected, each having its own benefits and challenges. Using examples, we explore how participants sensorially engage with these objects, using visual, auditory, olfactory, and tactile means. This engagement with material objects, particularly those that are personally meaningful to participants, is useful when examining research topics that may be sensitive or abstract; it offers the potential for participants to identify salient associations and/or express what may be otherwise unsayable. We discuss practical strategies in using material ob...

Adding the agentic capacities of visual materials to visual research ethics

The focus of visual research ethics has largely been on the ethical effects of visual research on... more The focus of visual research ethics has largely been on the ethical effects of visual research on participants. There is increasing identification of how researchers are ethically affected by visual research. However, there has been no sustained examination into how visual materials themselves have ethical consequences in visual research. In this paper we argue visual research presents with particular ethical challenges because of the agentic capacities of the visual materials themselves. The paper draws on a research project where participants generated two different kinds of visual materials: timeline charts and photos. We show how timeline charts and photos have contrasting imaginative, bodily, memory and synaesthetic capacities. The agentic capacities of the visual materials act in specific ways to co-create a network of relations across the research encounters. This network of relations has the capacity to act in particular ethical ways with serious consequences not just for re...

Editorial: Visual methods and ethics: Stories from the field

This special issue on ethical issues in visual research arose from our collective observation tha... more This special issue on ethical issues in visual research arose from our collective observation that there is an urgent need for researchers to share and reflect upon stories about the ethical challenges they are facing in their research, including how they have navigated the formal procedural ethics review process and how they have identified and responded to ethical challenges in their research practice. Our approach in this special issue has been to call for tales from the field that raise new questions and highlight concerns within the context of real and ongoing research rather than attempt to derive solutions to ethical problems in an abstract or decontextualized way. The overall collection is therefore one that highlights the importance of good descriptive self-reflexive accounts of ethical and methodological issues, especially in terms of what is useful for other visual researchers and also for members of research ethics boards or committees (REB/REC).

HREC administrators: the invisible link