Hiv Consent Age KenyaPolicyAssessment

June 2018
CHILDREN’S CONSENT FOR HIV SERVICES

A Policy Analysis of the Health, Social Welfare, and Education
Sectors in Kenya
JUNE 2018
This publication was prepared by Kipling Beardsley of the Health Policy Plus project.
Suggested citation: Beardsley, K. 2018. Children’s Consent for HIV Services: A Policy Analysis of the Health,
Social Welfare, and Education Sectors in Kenya. Washington, DC. Palladium, Health Policy Plus.
ISBN-13: 978-1-59560-175-9
Health Policy Plus (HP+) is a five-year cooperative agreement funded by the U.S. Agency for International
Development under Agreement No. AID-OAA-A-15-00051, beginning August 28, 2015. The project’s HIV
activities are supported by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR). HP+ is implemented
by Palladium, in collaboration with Avenir Health, Futures Group Global Outreach, Plan International USA,
Population Reference Bureau, RTI International, ThinkWell, and the White Ribbon Alliance for Safe
Motherhood.
This report was produced for review by the U.S. Agency for International Development. It was prepared by HP+.
The information provided in this report is not official U.S. Government information and does not necessarily
reflect the views or positions of the U.S. Agency for International Development or the U.S. Government.
Children’s Consent for HIV Services:
A Policy Analysis of the Health, Social Welfare, and Education Sectors in Kenya
Contents
Acknowledgments ..................................................................................................................... iv
Abbreviations ............................................................................................................................. v
Executive Summary................................................................................................................... vi
Introduction ............................................................................................................................... 1
Purpose ..................................................................................................................................................... 1
Definitions and Terminology .................................................................................................................... 2
Alignment across Health, Social Welfare, and Education Sectors ........................................................ 2
Incremental Implementation ................................................................................................................... 3
Policy Assessment..................................................................................................................... 5
Rights ........................................................................................................................................................ 5
Right to Health ......................................................................................................................................... 5
Protection from Harmful Cultural Practices............................................................................................ 6
Best Interests of the Child ....................................................................................................................... 6
Children’s Right to Participation.............................................................................................................. 7
Authorization and Capacity to Provide Consent .................................................................................. 17
Summary................................................................................................................................................ 20
Annex A: Summary of Findings ............................................................................................... 21
Annex B: Children’s Consent Summary .................................................................................. 24
Annex C: Consultation Attendees ............................................................................................ 26
References .............................................................................................................................. 27
iii
Acknowledgments
The author would like to thank the teams from the U.S. Agency for International Development
(USAID) in Washington and Nairobi for their support and engagement, especially Ariel Berry,
Katherine Farnsworth, Rose Mokaya, Tara Reichenbach, Teresa Simiyu, and Lola Walker.
This review is based on the concepts and structure of the forthcoming Children’s Consent
Framework, supported by orphans and vulnerable children and HIV teams at USAID and in
collaboration with the framework technical advisory group.
And finally, none of this work would have been possible or relevant without the engagement,
experience, and wisdom of local policy and program experts. The author specifically appreciates
the contributions of staff from County Health Services – Nairobi City County, the Department of
Children’s Services, Children of God Relief Institute, and the USAID/Kenya and East Africa Afya
Jijini Program.
iv
Abbreviations
ART antiretroviral therapy
CHALN Canadian HIV/AIDS Legal Network
COE Council of Europe
HP+ Health Policy Plus
IASSW International Association of Schools of Social Work
IFSW International Federation of Social Workers
MGCSD Ministry of Gender, Children and Social Development
MLSS&S Ministry of Labour Social Security and Services
MOE Ministry of Education
MOH Ministry of Health
MOPH Ministry of Public Health and Sanitation
NACP National AIDS Control Programme
NASCOP National AIDS & STI Control Programme
NCCS National Council for Children’s Services
OAU Organisation of African Unity
OHCHR Office of the United Nations High Commissioner for Human Rights
RELAF Red Latinoamericana de Acogimiento Familiar
ROK Republic of Kenya
UN United Nations
UNGA United Nations General Assembly
UNICEF United Nations Children’s Fund
USAID U.S. Agency for International Development
WHO World Health Organization
v
Executive Summary
Through incorporation of international law, participation in international treaties, and new
policy documents such as the 2010 Constitution, Kenya has a strong underlying policy
foundation establishing the rights of children and is evolving in its practices related to children’s
rights. However, there is not a national, comprehensive guiding policy standard for how to
manage the engagement of children in the decisions effecting their health and health data (e.g.,
in the Health Act or Children Act) against which sector- and service-specific policies and
guidelines must align on the components of consent, the authorization for consent, or the
contexts in which consent applies.
Kenya’s health, social welfare, and education sectors have best practices that may be adapted
and applied across sectors. In general, this assessment found that across the three sectors,
general medical policy is stronger on issues of formal informed consent, HIV providers are more
comfortable with lower ages of consent, and both general and HIV-specific social welfare
practices are strongest on integrating child assent and assessing and developing caregiver
capacity to support children’s consent processes throughout program implementation.
The policy and guideline framework related to consent for children’s access to HIV social and
medical services and management of confidential HIV data is a patchwork of conflicting,
inadequate, and often absent policy. This fragmented policy environment contributes to the
programmatic experience described by providers, policymakers, and adolescent representatives
in which consent practices for children are ad hoc and inconsistent. This policy and ad hoc
practice environment contributes to risk for providers in an increasingly litigious culture, as well
as children for whom consent may not be sought or obtained.
Findings of the policy assessment (summarized in Annex A) can be divided into two groups. In
the first group is the enforcement and enactment of existing rights to health, protection from
harmful cultural practices, ensuring the best interest of the child, and maturity-aligned
participation. The second group consists of the need for service-specific policy guidance that is
consistent across health, social welfare, and education sectors for clear and consistent assent
and consent guidelines related to medical and social HIV services and sharing of confidential
HIV data.
While there are certainly strengths in the policy framework and in sector practices, there are
also critical weaknesses that affect access to and retention in HIV services for children,
especially most-at-risk children. Most critical are the need to align consent policy for HIV
testing and treatment and the need for enforcement and redress mechanisms for breaches of
consent—particularly in the education sector.
vi
Introduction
Purpose
Childhood and adolescence is a period of rapid social, cognitive, and physical development, and
engagement of this population must align with the individual’s capacity to make decisions.
During this period of physical and psychological development, children are generally
extraordinarily self-conscious, and many of their health-related problems are associated with
behaviors that they find shameful and embarrassing—which can be exasperated for children at
risk for or living with HIV.
Clinical and social service providers recognize that, in many settings, children—especially those
who are vulnerable and marginalized—are at high risk for HIV, with limited access to prevention
and diagnostic services and poor treatment outcomes. However, many HIV prevention, testing,
treatment, and care policies and guidelines for informed consent and the management of
confidential HIV data are not designed to address the needs and contexts of children. For
example:
 The lack of training, tools, and staffing required to navigate the cultural, social, and
moral complexities of children prevents most providers from addressing the
compounded needs of HIV during a particularly challenging time in life.
 Provider decision making regarding consent can be influenced by personal opinions and
a lack of clarity in laws and guidelines.
 Inconsistent policies and practices in assessing child capacity to give/withhold consent
and the related need for caregivers to help children navigate consent decisions puts
providers at legal and professional risk and creates barriers for children’s access to HIV-
related services and effective management of confidential HIV data (WHO, 2013b, pg.
18).
In January 2018, the Health Policy Plus (HP+) project, funded by the U.S. Agency for
International Development, conducted a consultation on children’s consent in Kenya. The
purpose of this consultation was to gain insight into the country context of children’s consent for
HIV services and to validate the need for and concepts of the Children’s Consent Framework,
currently in development. HP+ staff met with government and donor stakeholders,
organizations implementing medical and social welfare HIV services for children, and youth
representatives. Consistent themes from these meetings included:
1. Both overarching and HIV-specific children’s consent policies were at best conflicting,
often inadequate, or absent.
2. Most HIV programs were child-centered and engaged children in decision making, but
consent practices were ad hoc.
3. The core principle of maturity-aligned consent resonated with stakeholders.
The purpose of this assessment is to combine this stakeholder feedback with documentation of
the language of policies and guidelines in Kenya to identify policies that are enabling, absent,
conflicting, restrictive, or inadequate in guiding the practices related to children’s consent for
HIV-related medical and social services and management of confidential HIV data.
1
This assessment is grounded in the perspective that policies must be responsive to the most
vulnerable and marginalized children who are at the highest risk for HIV and poor treatment
outcomes—children excluded from services because of age, lack of information, discriminatory
attitudes of service providers, gender-based discrimination, and societal norms (UNICEF, 2015,
pg. 12). This vulnerability stems from little or no access to basic needs and rights, including a
“right to a safe home and community environment; education; love, family care and support;
sufficient food and nutrition; protection from maltreatment and neglect; protection from abuse
and violence; adequate clothing; and the right to make lifestyle choices” (WHO, 2011, pg. 26).
Definitions and Terminology Disclosing a Child’s HIV Status to the

The following terms are used as defined below
Child
throughout the document.
Consent to share confidential HIV data in this
document is not specific to child disclosure
Children: Anyone under the age of 18,
protocols. However, there are some common
regardless of legal, cognitive, and social
capacity to consent. relevant issues.
The confidential HIV data of a child for whom
Caregiver: An individual who (1) has the a caregiver has been providing consent
cognitive and social capacity to make decisions “belong” to that caregiver and, as such, the
regarding HIV-related social and medical caregiver must give consent for them to be
services and management of confidential HIV shared with the child.
data, and (2) is supportive of the child. This
individual may be a parent, guardian, another Disclosure to a child of their HIV status may,
child or peer, healthcare/social service by proxy, disclose the status of parent(s). The
provider, informal caregiver, or other HIV status of the parent(s) is their personal
supportive individual. HIV data and, as such, requires the consent
of the parent to disclose to the child.
Policies in the health sector tended to use the Strong policy language on the paramountcy
terms “parents” and “guardians,” while policies of the best interests of the child and the
in the social welfare sector use the terms authority of a provider to make consent
“parents” and “caregivers.” Stakeholder decisions in the absence of a supportive
consensus was to use the term “caregiver,” as it caregiver can guide difficult decisions if
is more encompassing than the narrow legal parents are resistant to providing consent to
definition of guardian and reflects the reality of inform a child of the child’s HIV status.
most-at-risk children, especially those whose
parents are not present or supportive.
Confidential HIV data: Information that indicates HIV-positive or -negative status or risk
(e.g., results of tests, participation in medical or social support interventions, or behavioral
risks).
Sharing confidential HIV data: Confidential HIV data shared (or consented to be shared)
by an individual who owns these data, either because the data is related to themselves and/or
related to a person for whom the individual has consented (e.g., mother sharing the HIV status
of an infant).
Alignment across Health, Social Welfare, and Education Sectors

Children and their caregivers interact with providers across multiple sectors and their
experience in one sector informs a collective perspective of how the rights of children will be
2
approached by service providers in general. For example, stakeholders described experiences of

children’s HIV status being broadcast without consent in school settings. This experience of
witnessing the careless and non-consensual sharing of children’s status (and by proxy,
potentially the status of the parents), and the perceived or real risk that it will happen again
becomes part of the risk-benefit analysis that children and their caregivers make when they are
considering accessing HIV-related medical or social services.
Another reason for looking across sectors is to identify best practices that may be adapted and
applied in other settings. This assessment found that among the health, social welfare, and
education sectors, general medical policy is stronger on issues of formal informed consent, HIV
providers are more comfortable than social welfare providers with lower ages of consent, and
both general and HIV-specific social welfare practices are stronger on integrating child assent
and assessing and developing caregiver capacity to support children’s consent processes
throughout program implementation.
This assessment focuses on HIV-related services and information because of the critical issues
involving real, perceived, or feared stigma and discrimination, the potential for ongoing risk of
transmission and need for identification of partners, and the experience of living with a chronic
disease throughout the developmental stages of a childhood and adolescence. But overarching
concepts regarding informed consent and confidentiality have broad application and can be
broadly harmonized across many health and social services for children.
This assessment does not address consent and confidential data sharing issues for:
1. Suspected or documented emotional, physical, or sexual abuse
2. Underage sexual activity
3. Unconsented or coerced use of HIV self-testing technologies
4. Child abuse and neglect due to withholding of medical or social services
5. Required reporting of infectious diseases
6. Research
7. Exposure risk and treatment for providers in occupational settings
8. Emergency diagnosis and medical care or social support
It is also important to note that assessment of decisional capacity in the context of HIV medical
or social services, or decisions regarding sharing of confidential HIV data, does not imply
physical, cognitive, or emotional capacity to consent for all medical and social services or
capacity on issues such as marriage, sexual behavior, or criminal/legal liability.
Incremental Implementation
Finally, while core values of informed consent/refusal and data confidentiality are non-
negotiable, the decisions about the formality with which they are implemented should be scaled
to the risk posed to the provider or child by the HIV medical or social intervention or HIV data
sharing request. As risk grows, the implementation of consent requirements moves from
implicit to explicit and documentation may move from assumed to verbal to written. To reduce
implementation inconsistencies, program managers need to consistently map the intervention
on a risk spectrum and align the application of consent practices accordingly.
3
Implicit presumption of decisional capacity and informed consent
Informal assessment/documentation of decisional capacity and informed

General audience written
consent
materials (e.g., behavior change, Explicit assessment/documentation of
stigma reduction,
Routine labs decisional capacity and informed consent
disease/intervention information)
Community-wide social Changing antiretroviral therapy
interventions regimen HIV testing/coinfection diagnosis
General, non-HIV-specific services Referral/linkage to external Confirmation of HIV self-testing
(e.g., nutrition) services results
Routine follow-up visit/ Initiation of individual, HIV- Partner notification
participation with long-term stable specific social interventions Initiation of biomedical prevention or
client Sharing personal health data clinical interventions
Anonymous or non-identified among health or service team Stopping or refusing medical or social
health data Changes in personal context of interventions
client and/or supportive proxy Sharing personal health data with
external entities or programs
Any individual whose decisional
capacity has been previously
assessed to be lacking
Context where there is a likely risk to
confidentiality (small communities,
detention settings, school settings)
4
Policy Assessment
Rights
The Kenya Constitution incorporates both international law and any ratified convention or
treaty into the laws of Kenya (ROK, 2010, Art 2[5][6]). Among many other related instruments,
Kenya ratified the Convention on the Rights of the Child in 1990 and the African Charter on the
Rights and Welfare of the Child in 2000.
The Kenya Constitution specifically identifies a fundamental duty of the State to “observe,
respect, protect, promote, and fulfill” the rights of children and youth (ROK, 2010, Art 21[1],
[3]). The Children Act commits the government to “achieving progressively the full realization of
the rights of the child” to the “maximum of its available resources” (ROK, 2001, Art 3), the HIV
and AIDS Prevention and Control Act extends full protection of human rights and civil liberties
for every person suspected or known to be infected with HIV (ROK, 2006, Art 3[b]), and the
vision of the National Children Policy is to “create an environment where all the rights of the
child in Kenya will be fulfilled” through objectives that include a holistic, coordinated, and
evaluated policy framework (NCCS, 2010, pg. 7).
In the education sector, child rights, protection, and responsibilities are a component of school
health programming, with a focus specifically on the rights to play, leisure, and participation
(ROK, 2009a, pg. 10, 19, 22).
Following, we explore the key rights most relevant to the policy environment for children’s
consent—the right to health, protection from harmful cultural practices, acting in the best
interest of the child, and the child’s right to participation.
Right to Health
Both the Convention on the Rights of the Child and the African Charter on the Rights and
Welfare of the Child identify health as a child’s right (OAU, 1990, Art 14[1]); UNGA, 1990, Art
24[1]). The Kenya Constitution and Health Act also provide for this right and include the right to
healthcare services, including reproductive healthcare for all men and women of reproductive
age (ROK, 2010, Art 43[1][a]; ROK, 2010, Art 53[1][c]; ROK, 2016, Art 3[a][b]; ROK, 2016, Art
6[1][a]). Antiretroviral therapy (ART) guidelines direct that all people living with HIV qualify for
ART (MOH, 2016, pg. 19).
However, ART guidelines identify an uncited contraindication for pre-exposure prophylaxis in
adolescents under 15 years of age. Thus, while there is no specific guideline on age of eligibility
or process for consent in either the pre-exposure prophylaxis guidelines or implementation
framework, this “contraindication” creates an informal restriction on this health service (MOH,
2016, pg. 132; NASCOP and MOH, 2017).
Finding
1. While the right to reproductive healthcare is well established, access to and consent for pre-
exposure prophylaxis for HIV is not clearly defined and is indirectly restricted for those under
the age of 15—with or without parental/caregiver consent.
5
Protection from Harmful Cultural Practices

Article 21 of the African Charter on the Rights and Welfare of the Child requires Kenya to
eliminate harmful social and cultural practices and customs, particularly those prejudicial to the
child’s health or life and those that are discriminatory based on sex or other status. The
Constitution also calls for protection from harmful cultural practices (OAU, 1990, Art 21[1];
ROK, 2010, Art 53[1][d]).
Kenya’s policies identify cultural and traditional practices as one of the major challenges to the
full realization of child rights in Kenya. Harmful cultural practices are defined as “activities that
impact negatively on a child’s physical, emotional and behavioral development, their general
health, his/her family and social relationships, self-esteem, educational achievements and
aspirations” (MGCSD, 2013, pg. 64). Protections from “retrogressive and repugnant cultural,
beliefs and practices” (NCCS, 2010, pg. 15) apply to institutional, education, and health settings
(MOPH and MOE, 2009, pg. 17; NCCS, 2010, pg. 9; MGCSD, 2013, pg. 64).
In spite of these protections, negative cultural and religious beliefs of providers are still cited as
“the single most important barrier to youth access to reproductive health services” (MOH, 2005,
pg. 11, 16).
Finding
2. Children are broadly protected from activities and beliefs that negatively impact their health;
however, the religious and cultural beliefs of providers are still significant barriers to youth’s
access to reproductive health services.
Best Interests of the Child

The shift from the best interests of
The Convention on the Rights of the Child identifies that, a child being “a” primary
for all actions concerning a child, the best interests of the consideration to “the” primary
child shall be a primary consideration, while the African consideration reflects a cultural
Charter on the Rights and Welfare of the Child requires shift from children being the
that the best interests of the child be the primary property of their parents to children
consideration (OAU, 1990, Art 4[1]; UNGA, 1990, Art being full rights-holders with a
3[1]). This is an important distinction, as the use of the degree of self-determination (Lloyd,
indefinite article “a” only requires that the best interests 2002).
of the child be considered as one among many other
considerations. The use of the definite article “the” This evolution requires both policy
prescribes a higher standard—that where there are any reform and a fundamental
competing interests (e.g., cultural, economic), the well- philosophical shift on the part of
being and safety of the child is of overriding importance providers and caregivers to assure
(Lloyd, 2002). For example, the Convention on Human the effective engagement of
Rights and Biomedicine indicates that the interests and children in the decisions regarding
welfare of the individual shall prevail over the interests of their care.
society and science (COE, 1997, Art 2).
The Kenya Constitution aligns with the higher standard and stipulates that a child’s best
interests are of paramount importance in every matter concerning the child (ROK,
2010, Art 53[2]). This higher standard is reflected in the National Children Policy (NCCS, 2010,
pg. 7, 8) and for victims of violence against children (ROK, 2014c, Art 17[5][c]).
6
However, policy language in the Children Act (perhaps because it was written before the new
Constitution) stipulates that the best interests of the child:1
 Are only a primary consideration (ROK, 2001, Art 4[3])
 Should be taken into account (ROK, 2001, Art 69[3])
 Should be given regard to (ROK, 2001, Art 83[1][j], Art 148[5], Art 187)
 Must be reasonable (ROK, 2001, Art 100)
Guidelines for alternative care of children clearly identify the best interest of the child as a core
value and integrate the need for best interest assessment and determination. But the guidelines
are inconsistent, both aligning with the Children Act and the Convention on the Rights of the
Child as well as referring to best interests as paramount in guiding the selection of foster parents
and guaranteed during a guardianship process (ROK, 2014a, pg. 62, 78). Psychosocial support
guidelines place the best interests of the child in the vaguely expressed “center of all decisions,”
while not specifying where it ranks relative to other central considerations (MLSS&S, 2015, pg.
2).
Also failing to meet the constitutional standard are HIV policies in the education sector which
stipulate that the best interests of the child only “guide” decisions related to sharing confidential
HIV data (ROK, 2013, pg. 6–7). And key HIV policies from the health sector are either silent on
the concept of best interest of the child or fail to elevate this right above all others (MOH, 2005,
2012, 2013, 2014, 2016; NACP, 2002).
Findings
3. The Children Act does not reflect the standard of ensuring that the best interests of the child
are paramount, as reflected in the Constitution (may be resolved in the new 2018 Children
Act).
4. The Guidelines for Alternative Care are inconsistent in their prioritization of the best interests
of the child.
5. Guidelines for the education sector do not reflect the standard of ensuring that the best
interests of the child are paramount, as reflected in the Constitution.
6. HIV policies are entirely silent on the paramountcy of the best interests of the child.
Children’s Right to Participation

The Convention on the Rights of the Child identifies that children must provide their views and
have their view given due weight on issues that will affect them (OHCHR, 2003, Art 28).
Children who do not have the maturity to fully provide or withhold informed consent have the
right to a maturity-aligned role in the decisions that affect them. In all cases, it is important to
involve the child in decisions regarding their physical and social health and decisions on the
management of confidential HIV data, commensurate to their developmental age and level of
1As of the date of this assessment, a new Children Act 2018 was being drafted to replace the 2001 version
reviewed for this assessment. While the final language was not available for assessment, draft language in
the new 2018 Act appears to potentially address some of the findings in this report related to the
supremacy of the best interests of the child.
7
maturity (WHO and UNICEF, 2010, pg. 2, 7). In the field

“Young people know better how to
of social work, this incremental engagement can be
identify their health and related
aligned to the concept of respecting the right to self-
needs. They are in a better position
determination (IASSW and IFSW, 2012).
to prescribe solutions in meeting
those needs. Their involvement in
Maturity-aligned designing, planning, and running
Current authorizing factors for providing consent in the services can greatly assist in
Kenya focus on biological (e.g., age, pregnancy) social mobilizing support and sustaining
(e.g., marriage, non-reliance on parents), or behavioral motivation to utilise the services by
markers. However, current authorizing factors do their peers.” (MOH, 2005, pg. 18)
not provide information on the capacity of the
individual to engage in decisions related to HIV-
services and data. Informed consent/refusal requires decisional capacity. At the very core of
seeking informed consent is the assumption that the individual making decisions about the
engagement/non-engagement in HIV medical or social services or the sharing/lack of sharing of
confidential HIV data has the emotional and cognitive maturity to consent. This implicit,
intrinsic, and requisite assessment of maturity should be present in every provider-child
interaction, regardless of age of consent laws (Ho et al., 2005; Appelbaum, 2007; Chenneville et
al., 2010; WHO, 2016a, pg. 116).
Kenya policies consistently require alignment of

participation to the maturity of the child. The Example of Maturity-Aligned
Children Act specifies the requirement to take children’s Language
opinions into account commensurate to the child’s
Consent for HIV services may be
maturity (ROK, 2001, Art 4[4]). The National Children’s
given by:
Policy notes that the participation rights of children
counter the sociocultural norm of ignoring children when (a) ….
making decisions that affect them and that this right
(b) ….
requires the provision of accurate information to children
at all stages of maturity (NCCS, 2010, pg. 16). Other (c) the child, if the child is of
policies require maturity-aligned engagement around the sufficient maturity to
following topics: understand the benefits, risks,
and social implications of such
 Participation and expression of opinion in services
matters affecting health and education in school
settings (ROK, 2009c, pg. 25; ROK, 2009b, pg. (adapted from Government of
21) South Africa, 2005, Sect 130)
 Involvement in development of individual
childcare plans and making care decisions in institutional settings (MGCSD, 2013, pg.
52, 75)
 Best practices for the care of children (NCCS, 2011, pg. 150)
 Guidelines for engaging children in tracing and reintegration processes and decisions
regarding adoption (ROK, 2014a, pg. 35, 84)
However, a maturity qualification authorizing an individual to provide or withhold consent for

health services is absent in guiding policy language in the Health Act, which only requires “legal
capacity” to provide informed consent (ROK, 2016, Art 9[3]). Maturity qualification is also
absent in all HIV-testing guidelines, which favor biological, social, and behavioral markers to
8
indicate capacity to consent. Finally, none of the existing policy language supporting maturity-
aligned engagement describes how to assess maturity.
Findings
7. Existing indicators of capacity to consent are biological, social, and behavioral markers, rather
than cognitive and emotional maturity measurements.
8. A maturity qualification to authorize an individual to provide consent is absent in overarching
and HIV-specific health policy language.
9. Guidance on how to assess maturity is absent in existing language supporting maturity-
aligned engagement.
Assent/Dissent Required
Assent/dissent is the requirement, for children without the capacity to provide informed
consent, of engaging a child so that they understand, appreciate, and can give an opinion on
accepting/rejecting decisions that are being made for them. This assent requirement applies to
proposed interventions such as tests, therapies, and sharing of confidential HIV data. A child’s
dissent should be taken seriously, especially when the proposed intervention is not immediately
essential and/or can be delayed without substantial risk (Bartholome, 1995).
Kenya’s guidelines for caring for children and adolescents living with HIV specify that children
be given the opportunity to contribute to plans for their care and sh always be allowed to express
their opinion (MOH, 2015, pg. 52, 83, 84). Individual and institutional caregivers of children in
social welfare and education sectors are directed to allow children to express their views and to
take these views into consideration. (ROK, 2009c, pg. 25; ROK, 2009b; NCCS, 2011, pg. 147;
MGCSD, 2013, pg. 52, 75). Furthermore, providers are directed to assess the awareness of a
caregiver’s capacity to support this participatory right of a child (MOH, 2015, pg. 66). However,
none of these guidelines provide specific guidance on the components of assent or the process
for managing dissent. Guidelines in the health sector are largely silent on the requirement for
child assent.
Findings
10. Policy language on child assent is largely absent in the health sector.
11. There is no specific policy guidance on the requirements and components of assent or the
process for managing dissent.
Informed Consent
Informed consent, in varying degrees of formality, is required for medical and social services
and may be withdrawn at any time. The Convention on Human Rights and Biomedicine states
that health interventions may only be carried out after an individual has given free and informed
consent (COE, 1997, Art 5). In addition, lessons learned from behavioral and social
interventions with marginalized populations highlight the need for engaging participants in
decisions as to whether they want to participate in social interventions (CHALN, 2007, pg. 11).
9
Consent is required for all interventions, including:

 Behavioral interventions (CHALN, 2007)
 Biomedical prevention (UNICEF, 2015, pg. 9–10; PEPFAR, 2017)
 HIV testing, including provider-initiated HIV testing and counseling (WHO and
UNICEF, 2010, pg. 7; WHO, 2013b, pg. 46; WHO, 2016, pg. 51)
 Partner notification (WHO, 2016b, pg. 42)
 Medical treatment and ART (OHCHR, 2003, Art 29; WHO, 2013a, pg. 45)
 Care and social support (IASSW and IFSW, 2012)
 Sharing of confidential health data (WHO and UNICEF, 2010, pg. 10; WHO, 2013b, pg.
46)
In all settings:
 Hospital and clinical settings (WHO and UNICEF, 2010, pg. 7)
 Social work settings (IASSW and IFSW, 2012)
 School health settings (WHO, 2014, pg. 5)
The general components of informed consent are information on purpose, nature,

consequences, and risk of the intervention, and understanding that patients may freely
withdraw consent at any time (COE, 1997, Art 5). While there is no standard defining the
components of informed consent in Kenya, there is a general policy consensus on these
components. The Health Act identifies the components of consent as being information on
health status, treatment options, benefits and risks, and the right to refuse treatment (ROK,
2016, Art 8[1]). The Patient Rights’ Charter adds information regarding the costs (MOH, 2013,
Chapter 1[8]). Guidelines on youth-friendly services indicate that legal requirements for
engaging parents should be explained to youth (MOH, 2005, pg. 21). Finally, the HIV and AIDS
Prevention and Control Act defines consent as “consent given without any force, fraud or threat
and with full knowledge and understanding of the medical and social consequences of the
matter to which the consent relates” (ROK, 2006, Art 2).
Policy language in Kenya is inconsistent as to the form that consent must take. HIV testing
guidelines indicate that consent can be either written or oral—without identifying exceptions for
children, but the HIV and AIDS Act indicates that if a child is tested, consent must be in writing
from the parent/guardian or “emancipated minor” (ROK, 2006, Art 14[1][b]). In addition, the
HIV self-testing guidelines indicate that verbal consent is sufficient (NASCOP, 2015, pg. 15).
Policy language on the release of HIV-related information is also contradictory, with the Health
Act indicating only written consent as acceptable (ROK, 2016, Art 11[2][a]) and the HIV and
AIDS Act indicating that consent can be either written or oral (ROK, 2006, p. 22[1][d]).
Findings
12. Policy language is inconsistent on whether written or oral consent is required for HIV testing
of children and for sharing confidential HIV data.
10
Enforcement and Redress

The Health Act fails to identify breaches of consent as an offence or to prescribe penalties such
as are described for breaches of policy for other components of the Act, such as provision of
emergency medical treatment, human organ transplant, blood transfusion, and participation in
health information management systems (ROK, 2016, Art 7, 80, 85, 105). The HIV and AIDS
Act identifies compulsory testing and testing without consent as offences (ROK, 2006, Sect 13,
14, 23). HIV service-specific guidelines do not identify enforcement and redress mechanisms for
failures in the assent or consent processes. For example, while prohibiting coercive testing, HIV
self-testing guidelines fail to identify specific mechanisms to prevent and address coercion,
including clarification that coercive testing violates legal prohibitions against compulsory testing
in the HIV and AIDS Prevention and Control Act (ROK, 2006, Art 14[4]; NASCOP, 2017, pg. 10,
15). Service guidelines for consent in the social welfare and education sectors are silent on
enforcement and redress systems.
Findings
13. The Health Act fails to identify breaches of consent as an offence.
14. HIV self-testing guidance fails to clarify that coercive HIV testing is a violation of compulsory
testing prohibitions in the HIV and AIDS Prevention and Control Act.
15. Policy language identifying enforcement and redress for violations of consent are absent in
HIV medical and social welfare guidelines.
Providing/Withholding Consent for Medical and Social Services

The Kenya Patients’ Rights Charter identifies the right to informed consent to treatment (MOH,
2013, Ch 1, Art 8), the Health Act identifies the requirement for patient consent for all health
services (ROK, 2016, Art 9[1]), and the Children Act specifies that only one person needs to
consent for a child (ROK, 2001, Art 24[6]). The HIV and AIDS Prevention and Control Act
specifically identifies the requirement of consent for HIV testing, but not for any other service
(ROK, 2006, Art 14), and it identifies training on informed consent as a required topic for
healthcare providers (ROK, 2006, Art 6[3]).
While all stakeholders and service providers interviewed

eloquently describe processes of engaging children and their
Stakeholders identified a
caregivers in decisions regarding medical and social services, they
strong, albeit altruistic,
also stated that these informed consent processes were
intention to “facilitate” or
mostly ad hoc due to a lack of specific, standardized
“encourage” consent—
guidelines and procedures.
representing an
Except for HIV testing, formal concepts of informed consent underlying personal and
are mostly absent in HIV service-specific guidelines for programmatic goal of
both children and adults. The only specific reference to universal participation in
consent in HIV treatment guidelines was regarding the need for HIV services but perhaps
patient consent for providers to contact them by phone or during jeopardizing long-term
house visits (MOH, 2016, pg. 74). In addition, while processes like engagement and buy-in
adherence and treatment readiness counseling are prime of clients and a related
opportunities to ensure understanding of and consent for services, commitment to
it is not clear that the counseling protocols specifically assess adherence.
capacity to provide consent or require all components of consent—
11
especially the right to withdraw consent and withdraw from treatment at any time. For example,
the script for gender-based violence screening does not seek consent or give the option to refuse
(MOH, 2016, pg. 36). The Adolescents Package of Care was the only policy document identified
that included the right to withdraw consent (MOH, 2014, pg. 13).
Policies on consent in the context of HIV self-testing are still evolving. The HIV and
AIDS Act still assumes management of consent in the context of provision of HIV testing by a
medical practitioner (ROK, 2006, Art 14). Furthermore, while the HIV self-testing manual
emphasizes consent (NASCOP, 2017, pg. 15), there are no specific guidelines on how this will be
achieved in a non-clinical setting.
Home-based care guidelines contain concepts like consulting and involving people living with
HIV on matters concerning them (NACP, 2002), guidance for children caregivers identifies the
importance for the client’s well-being if clients are able to make choices about treatment (NCCS,
2011, pg. 150), and guidelines for charitable children’s institutions give a general directive to
obtain consent of the parent/guardian before involving children in activities (MGCSD, 2013, pg.
74).
The education sector health programming policy makes a general reference to allowing children
to participate and express opinions in all matters that affect them (ROK, 2009c, pg. 25; ROK,
2009b, pg. 21). However, school health programming guidelines fail to mention or provide
guidance on either child or caregiver consent for medical or social services (MOPH and MOE,
2009; ROK, 2009a).
Finally, there are examples of required interventions that by their compulsory nature violate the
right to informed consent. These include required treatment for “venereal disease” until cured
or noncommunicable (ROK, 2012b, Art 44, 46) and the requirement for girls to undergo
“voluntary” medical screening for pregnancy once per term (ROK, 2009c, pg. 23; ROK, 2009b,
pg. 17).
Annex B documents the service-specific policies that identify (or fail to identify) processes for
obtaining consent.
Findings
16. Requirements for consent are most clearly described for HIV testing. Other HIV-related
services fail to identify consistent consent processes and requirements.
17. Social service guidelines fail to identify consistent consent processes and requirements.
18. Education sector health guidelines fail to identify consistent consent processes and
requirements.
19. Required (compulsory) interventions violate informed consent—treatment for sexually
transmitted infections until cured or non-communicable (ROK, 2012b, Art 44, 46) and the
requirement for girls to undergo medical screening for pregnancy once per term (ROK, 2009c,
pg. 23; ROK, 2009b, pg. 17).
Providing/Withholding Consent for Management of Confidential Health Data

The requirement to obtain informed consent for the release or sharing of confidential health
data is a critical component of the right to confidentiality. Children and their caregivers must be
12
informed of their right to confidentiality and engaged in the

planning of how, when, and to whom confidential health data The diagnosis of a client
should be disclosed (WHO, 2015, pg. 30). Protection of is not a community
confidentiality has a direct relationship to increasing access to issue.
services and improving health outcomes as the risk of (NACP, 2002, pg. 65)
unconsented disclosure drives key, marginalized, and
vulnerable populations, and adolescents living with HIV, away
from services and discourages retention in care (WHO, 2013b,
pg. 59).
The following rights to privacy and confidentiality appear in the Kenya legal code:
 Right to privacy for information relating to family or private affairs (ROK, 2010, Art
31[c])
 Right to privacy and confidentiality for victims of crime (ROK, 2014c, Sect 8)
 Right to confidentiality regarding health status for persons deprived of liberty (ROK,
2014b, Part II[16])
 Requirement for patient consent for the release of confidential health information (ROK,
2016, Art 11[1],[2])
 Right to privacy and required written consent for the release of the result of an HIV test
or any related assessments (ROK, 2006, Art 3[b][ii], Art 22[1][a],[c])
 Responsibility of individuals to seek permission before discussing or sharing an
individual’s HIV-status (NACP, 2002, pg. 65)
 Right to privacy and confidentiality for children subject to parental guidance (ROK,
2001, Sect 19)
Kenya documents identify the fear of breach of confidentiality of HIV data as a limitation to
referral and networking (NACP, 2002, pg. 30). In addition, guidelines and strategies for youth-
friendly services underscore the central ethical and legal value of privacy and confidentiality
regarding health issues for children. Policy directs that this value of confidentiality must
be upheld so diligently that there is not even the opportunity for children to feel or
suspect that confidential data are being shared—including with parents (MOH,
2005, pg. 12, 15, 17, 21; NCCS, 2011, pg. 147-148; NCCS, 2015, pg. v).
In general, a good rule is that confidential data are only shared with the individual who has
given consent for the medical or social intervention and that that individual retains the right to
provide or withhold consent for further sharing of information regarding this intervention. For
example, HIV testing guidelines direct that if a 15-year-old has consented for an HIV test, the
decision of whether or not to share the results with parents/caregivers rests with that child
(NASCOP, 2015, pg. 27). The 2006 HIV and AIDS Prevention and Control Act aligns
“emancipated minor’s” consent to test, release of information only to the “tested person,” and
the requirement to obtain consent of that individual to disclose HIV-related information (ROK,
2006, Sect 14[1][b], 18[a][b], 22[1][c]). However, the HIV and AIDS Prevention and Control Act
directs that post-test counseling be provided to the person undergoing an HIV test and “any
other person likely to be affected by the results of such test” without mentioning the need to get
the consent of the tested person to engage “other persons” (ROK, 2006, Art 17[1]).
13
The practice of aligning consent provided by a child for interventions with consent
from that child for the sharing of confidential data is not uniformly described in
other policy documents. The following policy examples fail to provide guidance or recognize
that a child can consent for interventions as an emancipated minor or someone over the age of
15 years.
 “Parents should disclose the status of their children to facilitate treatment and
adherence” (NASCOP, 2015, pg. 13).
 “Every health care provider shall inform a user or, where the user of the information is a
minor or incapacitated, inform the guardian” (ROK, 2016, Art 8[1]).
 “HIV test results for children up to 14 years will be given to the parents/guardians whose
consent is needed for testing them” (NASCOP, 2015, pg. 27).
Programmatically, confidentiality is identified as a required topic in the training of healthcare

providers (ROK, 2006, Art 6[3]) and caregivers of children in institutionalized settings
(MGCSD, 2013, pg. 31–32). Confidentiality is emphasized throughout home-based care
guidelines for both patients and family/caregivers, and trainings for home-based care
emphasize the potential for and include issues related to conflicts in confidentiality
requirements (NACP, 2002, pg. 25). Childcare guidelines identify the optimal practice of written
consent (even for family members) to identify who has access to medical records and permission
to divulge information concerning the family or children (NCCS, 2011, pg. 147–148, 150).
The National School Health Policy identifies the child’s right to privacy and confidentiality
regarding their health and restricts sharing of health status and medical conditions with other
children without the consent of the child or legal guardian; however, it also states that medical
information may be accessed by blanket categories of “health personnel, parents, and teachers”
for broad, vague reasons such as “providing medical advice” and “preventing spread of
infectious disease” without requiring consent for that access (ROK, 2009c, pg. 16, 17). School
health implementation guidelines fail to address confidentiality or provide guidance on how
consent for sharing confidential health data is managed (MOPH and MOE, 2009; ROK, 2009a).
Given these weak standards of consent for sharing of confidential HIV information in the
education sector, it is not surprising that stakeholders shared examples of breaches of
confidentiality of students’ HIV status in school settings.
There is conflicting policy guidance regarding the assumption that people living
with HIV will share their confidential HIV data. Testing guidelines recognize that clients
may not be in a supportive environment and may experience stigmatization and discrimination,
and that the sharing of their HIV status “should not be treated as an event that must happen”
(NASCOP, 2015, pg. 26–27). However, other policy language assumes and requires that people
living with HIV will share their confidential HIV data. HIV testing policy emphasizes that HIV-
positive youth should be encouraged to share their status with parents/caregivers, and that in
the event of challenges, the provider should support disclosure (NASCOP, 2015, pg. 12, 27).
Willingness to share one’s HIV status is a criterion listed in the ART readiness assessment with
the accompanying directive that if the response to this criterion is “No,” there should be a
strategy to address the issue as quickly as possible, with the potential for deferment of ART until
the criterion is met (MOH, 2016, pg. 71). Home-based care guidelines indicated that the HIV-
status of the individual will be known to the caregivers, the individual’s spouse, and, if the
individual is not married, the parents—instructing the counselor to “prepare the PLWHA
[person living with HIV] well enough to be able to communicate the diagnosis to the relevant
people with ease.” It is further indicated that this shared confidentiality will alleviate fear and
14
suspicion among the immediate family members (NACP, 2002, pg. 65)—contradicting the
philosophy of the best interest of the child by identifying the emotional comfort of the family on
par with or above the best interest of the person living with HIV.
Findings
20. The HIV and AIDS Prevention and Control Act fails to require consent from the tested
individual for “other persons” to be involved in post-test counseling.
21. Multiple policy documents do not recognize the possibility of “emancipated minor” consent
for testing and the aligned right of that child to provide/withhold consent for the sharing of
confidential HIV data.
22. The National School Health Policy and practice gives permission to share confidential HIV
data with broad categories of people without the consent of the child or caregiver.
23. The requirement of obtaining consent before sharing confidential HIV data is not addressed in
school health guidelines.
24. Multiple programmatic guidelines (e.g., HIV testing guidelines, ART readiness protocols, and
home-based care guidelines) fail to recognize the right of HIV-positive people to withhold
consent for the sharing of confidential HIV data.
25. Best practices for childcare include a strong emphasis on confidentiality and having clients
give permission to divulge confidential information. However, the definition of client is not
clear and seems to include both children and parents/guardians, and while there is
recognition of the capacity to make informed choices, there is no guidance on protocols for
implementation (NCCS, 2011, pg. 147–148).
Shared Confidentiality
The sharing of confidential HIV data among direct provider teams is known as shared
confidentiality. Shared confidentiality within a service setting and among direct provider teams
facilitates provision of quality services. In addition, it is clear that holistic clinic- and
community-based services and support are required for positive health outcomes. However, the
role of providers is to identify and refer clients to resources rather than share confidential HIV
data outside of the direct provider team. Only with specific consent of the child or caregiver can
providers directly engage or share information with external individuals or services (WHO and
UNICEF, 2010, pg. 10; WHO, 2014, pg. 5, 6, 8; WHO, 2015, pg. 63). Providers in community,
education, and detention settings fall under the same requirements to respect rights to privacy
and confidentiality as do those in healthcare settings, which limits the sharing of confidential
health data outside of the direct “care” team (UN, 1985, Sect V.87.e; IASSW and IFSW, 2000,
pg. 1; WHO, 2003, pg. 13; RELAF and UNICEF, 2011, pg. 24; WHO, 2013b, pg. 60).
The purpose and scope of “shared confidentiality,” even within a service setting, should be
discussed with the child and their caregiver to obtain agreement as to (1) the benefits of the
provider team knowing this information, (2) the confidentiality protections and procedures that
prohibit sharing beyond this team, and (3) strategies to address any risks that might be present
(e.g., friends/family working in the clinic) (WHO, 2015, pg. 29).
Kenya policy language provides limited and conflicting guidance on shared

confidentiality—sometimes within the same policy statement. For example, HIV testing
guidelines state, “Confidentiality is not secrecy. Client’s names will be used in order to facilitate
15
referral to other services and test results may be shared with other health care workers
providing services to the client; referred to as shared confidentiality” (NASCOP, 2015, pg. 19).
Similarly, the guidelines state that “a health care provider may disclose patient HIV results to
another provider for purposes of further care/management” (NASCOP, 2015, pg. 27). Neither of
these statements places limits on providers, defines services, or provides a requirement for
consent for the sharing of this information. However, other statements in the same document
identify the scope of information sharing as being among “health care workers who are directly
involved in the management of the client” (NASCOP, 2015, pg. 28), and it is only a disclosure
scenario graphic that seems to indicate the requirement of client consent for sharing
confidential information with a third party healthcare worker (NASCOP, 2015, pg. 29). The sum
of these statements is inconsistent direction on how and when consent is needed for the sharing
of confidential HIV data and complete omission of the engagement of the client in decisions
being made about sharing their confidential HIV data within a direct provider team.
Guidelines in the social and education sectors, in general, provide supportive

language regarding confidentiality but fail to provide clear guidance of when and
how confidential HIV data are shared among a provider team and how to engage
the child in this decision. Guidelines for children caregivers describe confidentiality as a
legal and ethical obligation. However, they are also unclear about who makes decisions to share
information with whom. While there is an overarching directive that caregivers share
information on a “need to know” basis, there is no description of what that means. Use of the
word “client” is unclear, whether it is a child or their caregiver, and terms like “unauthorised”
and “authorised” persons do little to distinguish between core providers and other individuals
(NCCS, 2011, pg. 147–148). Guidelines for charitable children’s institutions indicate that the
institution “shall avail a child’s information to any person” and seem to define core providers as
those working “in the best interest of the child e.g. child welfare, exit purposes and other
relevant positive intentions” (MGCSD, 2013, pg. 31–32). In addition, the Education Sector
Policy on HIV and AIDS identifies protections for confidentiality but also the directive to
“establish mechanisms for confidentially identifying learners living with HIV including those
with special needs for appropriate support at all levels” without discussion of consent for
collecting these confidential HIV data (ROK, 2013, pg. 13).
In the medical sector, referrals for services outside of the core care team use triplicate referral
forms, which by their nature disclose confidential HIV information (NASCOP, 2015, pg. 20,
Annex 1). Stakeholders interviewed described these forms as shared with providers either by
client-initiated or direct provider-to-provider distribution, with the former approach giving the
client control over the sharing of their confidential HIV data. Stakeholders also suggested that
adding a simple client consent statement and signature to the form would provide a reminder to
providers to obtain consent from the client before sharing their information. Consistent
guidance regarding the need to obtain consent for the sharing of confidential HIV
data beyond core care teams will be critical for any integrated service structure,
such as:
 Coordination of care and treatment among partners and families (MOH, 2016, pg. 17)
 Family-based case management
 Electronic health information systems (ROK, 2016, Part XV)
 Single registries for social welfare programs across target groups and program areas
(ROK, 2011, pg. 27)
16
Findings
26. Guidance on engaging a child and/or caregiver in understanding the shared confidentiality of
their HIV data is absent in all sectors.
27. Consistent definitions and practices for requiring consent for the sharing of confidential HIV
data between direct provider teams and external providers are absent for all HIV health and
social services.
28. Education sector policy directs collection of confidential HIV data without mechanisms for
obtaining consent for the collection of these data.
Authorization and Capacity to Provide Consent

Capacity to Act in the Best Interests of the Child
Proxies (whether provider, biological parent, guardian, or caregiver) who support children in
assent/dissent and make decisions to provide/withhold consent to HIV medical or social
interventions or the sharing of confidential HIV data must have the capacity to act in the best
interests of the child. When observing the interactions of a proxy and child, the following
characteristics should be present:
 The proxy identifies and protects the child from emotional, physical, sexual, or religious
abuse.
 The proxy engages in respectful, two-way communication with the child.
 The proxy fosters self-resiliency in the child.
 The proxy is nonjudgmental of the child’s HIV status and risk behaviors (HP+,
forthcoming).
Kenya social welfare and HIV policies identify factors that may present barriers to these
responsibilities that include health, ability to understand, depression, alcohol and other drug
use, distance, economic stability, level of affection, support systems for the caregiver (MOH,
2016, pg. 73), and any environment of abuse, neglect, and exploitation (ROK, 2014c, Sect 18;
MLSS&S, 2015, pg. 21). Correspondingly, policy documents identify the need to assess and build
caregiver capacity to support a child’s right to engage in decisions about their life (MLSS&S,
2015; MOH, 2015, pg. 66). These policies focus on the capacity of the parent, guardian, or
caregiver, but there is no policy language about assessing and developing the capacity of
providers who find themselves in the role of supporting a child in making decisions about their
services or management of their confidential data.
Kenya HIV guidelines also identify the importance of building a therapeutic relationship
between provider and patient that is independent of caregivers (MOH, 2015, pg. 61), as well as
the importance of adolescent identification of supportive adults and friends for linkage to care
and treatment (MOH, 2016, pg. 17) and adherence (MOH, 2016, pg. 79).
Findings
29. Policy guidance on assessing and developing the capacity of providers to engage children in
consent processes is absent in all sectors.
17
Children
The standard for consent in Kenya is “legal capacity,” which is age 18 years (ROK, 2012a, Sect 2;
ROK, 2016, Art 9[3]). For HIV testing, current language identifies the requirement for child
assent and parental/guardian consent up to the age of 14 years and child consent at age 15
(NASCOP, 2015, pg. 18). This current policy language leaves out guidance on authority to
consent for children in their fourteenth year, but common implementation of the law assumes
the need for parent/guardian consent through the fourteenth year. There is also no reference to
the age at which children can purchase HIV self-test kits (NASCOP, 2017). There is a vague
reference in the ART guidelines that “all PLHIV [people living with HIV] qualify for ART
irrespective of … age” (MOH, 2016, pg. 19). However, this guidance does not address the subject
of consenting for treatment. Additionally, child survivors of sexual violence may be tested
without the consent of parents/guardians, provided that they are given age-appropriate
counseling (NASCOP, 2015, pg. 16). The challenge with this current policy structure is
that without clear guidance that aligns age of consent for testing with other HIV
services, children under the age of 18 can consent to HIV testing but technically
need to have caregiver consent for ART, social welfare services, or decisions
related to confidential HIV data.
Findings
30. Policy for age at which children can use HIV self-testing technologies is absent.
31. Current policy language does not provide guidance on authority to consent for HIV testing for
children in their fourteenth year.
32. Policy language on authorizing consent for testing does not align with policy language
authorizing consent for other HIV services.
Emancipated Minors
There is no formal and consistent definition of emancipated minor in the legal
code. The HIV Testing Services Guidelines defines an emancipated minor as “a person, who is
not legally an adult but who, because he or she is married, is the mother/father of a child, or
otherwise no longer dependent on the parents. S/he may not require parental permission for
medical or surgical care” (NASCOP, 2015, pg. x). The HIV and AIDS Prevention and Control Act,
does not specify the classification of “emancipated minor” but allows for a “child that is
pregnant, married, a parent, or is engaged in behaviour which puts him or her at risk of
contracting HIV” as having the authority to consent to an HIV test (ROK, 2006, Art 14[1][b]).
These two descriptions fail to align on the critical component of behavioral risk.
The definition of emancipated minor is not included in the Health Act (ROK, 2016), Children
Act (ROK, 2001), or National Children Policy (NCCS, 2010), giving limited support to the
concept and implementation of emancipated minor consent. Also, the reference to “medical and
surgical care” for which parental permission “may not” be required is vague and not within the
scope of HIV testing guidelines. Finally, there is no corresponding reference to the ability of
emancipated minors to consent for any other HIV service other than HIV testing (ROK, 2009a;
ROK, 2011; MOH, 2012, 2014, and 2016; NASCOP and MOH, 2017).
18
Findings
33. Definitions of emancipated minors are not consistent or integrated into relevant documents.
34. Policy language stating that emancipated minors may not require permission for medical or
surgical care is unclear and beyond the scope of HIV testing guidelines.
Parents
Engagement of a parent is not always possible or in the best interests of the child. Parents may
be absent (e.g., migrant workers), incapacitated (e.g., ill health), or judgmental and
unsupportive of the services required for children from key, marginalized, and vulnerable
populations (WHO, 2013b, pg. 19; UNICEF, 2015, pg. 9, 10). In cases where children seek HIV
prevention, testing, care, or treatment without parental consent, it stands that they may do so
because of lack of parental involvement or fear of revealing stigmatized behaviors. (Chenneville
et al., 2010). Current social welfare and HIV policy language identifies the need to assess and
build capacity of parents and caregivers to act in the best interests of the child (MLSS&S, 2015;
MOH, 2015, pg. 66) but does not provide guidance on how to do this assessment or what to do if
a parent is unable to be a supportive presence in a child’s life.
Finding
35. Policy language is absent on how to assess and develop the capacity of parents to act in the
best interests of a child and how to respond if a parent is unable to be a supportive presence
in a child’s life.
Caregiver versus Guardian

In general, when referring to a non-parent in a child’s life, health sector documents tend to use
the term guardian, identifying a legal relationship with the child (ROK, 2006, Art 2; NCCS, 2011,
pg. 7), and social welfare sector documents use the term caregiver, which includes broader
supportive roles in care and well-being, including biological parents, children in the family,
relatives and house help (ayahs), teachers, health workers, law enforcement officers, children
officers, and workers in children’s homes and statutory institutions, among others (NCCS, 2011,
pg. 7, 10; MLSS&S, 2015, pg. v).
As identified in Annex B, the discrepancy between caregiver and guardian creates

contradictions in who has the authority to support a child’s consent, depending on
the service and sector. It also can create confusion as to who, among legal guardians and
perhaps multiple caregivers, actually has the authority to provide consent. Given the complex
relationships between children and parents, guardians, and caregivers, stakeholders interviewed
recommended moving to consistent use of the term and concept of caregiver, noting that further
mechanisms would need to be put in place to identify which caregiver had authorization to
provide consent.
Finding
36. Policy language inconsistently uses the terms “guardian” and “caregiver” in different sectors.
19
Providers
In circumstances where no one is available or willing to provide As a general principle,
consent for a child, and life-saving treatment is available, a health when life-saving
or social service provider should provide consent and initiate treatment is available,
testing, interventions, or the sharing of confidential health data if and all efforts to obtain
it is in the best interests of the child (WHO and UNICEF, 2010, pg. parental consent have
3, 7, 8). failed, the provider has
an ethical responsibility
Policy language in Kenya only allows for healthcare providers to to act in the best
consent for HIV testing of individuals with disabilities that would interests of the child
restrict their ability to provide consent and where there is no other (WHO and UNICEF, 2010,
person present or willing to give consent (ROK, 2006, p. 14[1][c]; pg. 3).
MOH, 2015, pg. 83, 84).
Finding
37. The Health Act does not authorize health service providers to provide consent for children
who may not have a present or supportive parent or caregiver.
Summary
The policy and guideline framework related to consent for children’s access to HIV-related social
and medical services and management of confidential HIV data is a patchwork of conflicting,
inadequate, and often absent policy. This fragmented policy environment contributes to the
programmatic experience described by providers, policymakers, and adolescent representatives
in which consent practices for children are ad hoc and inconsistent. This environment
contributes to risk for providers in an increasingly litigious culture, as well as children for whom
consent may not be sought or obtained.
Findings of the policy assessment can be divided into two groups. In the first group is the
enforcement and enactment of existing rights to health, protection from harmful cultural
practices, ensuring the best interest of the child, and maturity-aligned participation. The second
group consists of the need for service-specific policy guidance that is consistent across health,
social welfare, and education sectors for clear and consistent assent and consent guidelines
related to medical and social HIV services and sharing of confidential HIV data.
20
Annex A: Summary of Findings

1. While the right to reproductive healthcare is well established, access to and consent for pre-
exposure prophylaxis for HIV is not clearly defined and is indirectly restricted for those
under the age of 15—with or without parental/caregiver consent.
2. Children are broadly protected from activities and beliefs that negatively impact their health;
however, the religious and cultural beliefs of providers are still significant barriers to youth’s
access to reproductive health services.
3. The Children Act does not reflect the standard of ensuring that the best interests of the child
are paramount, as reflected in the Constitution (may be resolved in the new 2018 Children
Act).
4. The Guidelines for Alternative Care are inconsistent in their prioritization of the best
interests of the child.
5. Guidelines for the education sector do not reflect the standard of ensuring that the best
interests of the child are paramount, as reflected in the Constitution.
6. HIV policies are entirely silent on the paramountcy of the best interests of the child.
7. Existing indicators of capacity to consent are biological, social, and behavioral markers,
rather than cognitive and emotional maturity measurements.
8. A maturity qualification to authorize an individual to provide consent is absent in

overarching and HIV-specific health policy language.
9. Guidance on how to assess maturity is absent in existing language supporting maturity-

aligned engagement.
10. Policy language on child assent is largely absent in the health sector.
11. There is no specific policy guidance on the requirements and components of assent or the
process for managing dissent.
12. Policy language is inconsistent on whether written or oral consent is required for HIV testing
of children and for sharing confidential HIV data.
13. The Health Act fails to identify breaches of consent as an offence.
14. HIV self-testing guidance fails to clarify that coercive HIV testing is a violation of
compulsory testing prohibitions in the HIV and AIDS Prevention and Control Act.
15. Policy language identifying enforcement and redress for violations of consent are absent in
HIV medical and social welfare guidelines.
16. Requirements for consent are most clearly described for HIV testing. Other HIV-related
services fail to identify consistent consent processes and requirements.
17. Social service guidelines fail to identify consistent consent processes and requirements.
21
18. Education sector health guidelines fail to identify consistent consent processes and
requirements.
19. Required (compulsory) interventions violate informed consent—treatment for sexually

transmitted infections until cured or non-communicable (ROK, 2012b, Art 44, 46) and the
requirement for girls to undergo medical screening for pregnancy once per term (ROK,
2009c, pg. 23; ROK, 2009b, pg. 17).
20. The HIV and AIDS Prevention and Control Act fails to require consent from the tested
individual for “other persons” to be involved in post-test counseling.
21. Multiple policy documents do not recognize the possibility of “emancipated minor” consent
for testing and the aligned right of that child to provide/withhold consent for the sharing of
confidential HIV data.
22. The National School Health Policy and practice gives permission to share confidential HIV
data with broad categories of people without the consent of the child or caregiver.
23. The requirement of obtaining consent before sharing confidential HIV data is not addressed
in school health guidelines.
24. Multiple programmatic guidelines (e.g., HIV testing guidelines, ART readiness protocols,
and home-based care guidelines) fail to recognize the right of HIV-positive people to
withhold consent for the sharing of confidential HIV data.
25. Best practices for childcare include a strong emphasis on confidentiality and having clients
give permission to divulge confidential information. However, the definition of client is not
clear and seems to include both children and parents/guardians, and while there is
recognition of the capacity to make informed choices, there is no guidance on protocols for
implementation (NCCS, 2011, pg. 147–148).
26. Guidance on engaging a child and/or caregiver in understanding the shared confidentiality
of their HIV data is absent in all sectors.
27. Consistent definitions and practices for requiring consent for the sharing of confidential HIV
data between direct provider teams and external providers are absent for all HIV health and
social services.
28. Education sector policy directs collection of confidential HIV data without mechanisms for
obtaining consent for the collection of these data.
29. Policy guidance on assessing and developing the capacity of providers to engage children in
consent processes is absent in all sectors.
30. Policy for age at which children can use HIV self-testing technologies is absent.
31. Current policy language does not provide guidance on authority to consent for HIV testing
for children in their fourteenth year.
32. Policy language on authorizing consent for testing does not align with policy language
authorizing consent for other HIV services.
22
33. Definitions of emancipated minors are not consistent or integrated into relevant documents.
34. Policy language stating that emancipated minors may not require permission for medical or
surgical care is unclear and beyond the scope of HIV testing guidelines.
35. Policy language is absent on how to assess and develop the capacity of parents to act in the
best interests of a child and how to respond if a parent is unable to be a supportive presence
in a child’s life.
36. Policy language inconsistently uses the terms “guardian” and “caregiver” in different sectors.
37. The Health Act does not authorize health service providers to provide consent for children
who may not have a present or supportive parent or caregiver.
23
Annex B: Children’s Consent Summary

Consent Process (not Authorized to Provide Consent
Service Reference
specified—assumption) (not specified—assumption)
All health services Consent  Patient or their appointee ROK, 2016, Art 9
 Next of kin
 Requires legal capacity
Provider-initiated HIV Consent (Service- and context-specific MOH, 2016, pg. 15
testing and counseling guidelines)
HIV testing < 18 months (Provider-initiated HIV (Parent or appointee) MOH, 2016, pg. 8
testing and counseling)
HIV testing 18 months–9 Assent Parent (or appointee) MOH, 2016, pg. 8
years
HIV testing Consent  7–13 years assent with MOH, 2016, pg. 8;
consent of NASCOP, 2015, pg.
parent/guardian/caregiver 18
 15+ years
 Emancipated minors
HIV self-testing Not specified Not specified MOH, 2016, pg. 7,
9; NASCOP, 2017
Pre-exposure prophylaxis Adherence readiness 15+ years MOH, 2016, pg.
counseling 130
Post-exposure Consent Patient; no guidance on < 18 MOH, 2016, pg.
prophylaxis years 127
Infant ARV (Provider-initiated HIV (Parent or appointee) MOH, 2016, pg. 8
prophylaxis/DNA PCR testing and counseling)
testing/ART initiation
HIV education and Collaborative Patient or caregiver MOH, 2016, pg. 65
adherence counseling
Second/third-line ART (Treatment readiness (Patient or caregiver) MOH, 2016, pg.
assessment) 64, 67, 83, 87, 88
Enhanced adherence (Collaborative) (Patient or caregiver) MOH, 2016, pg.
counseling 81–83
Medication and Enhanced adherence (Patient or caregiver) MOH, 2016, pg.
appointment adherence counseling 74, 81–83, 151
support:
 Case management
 Disclosure
 Home visits
 Treatment supporters
 Directly observed
therapy
 Support groups
24
Consent Process (not Authorized to Provide Consent

Service Reference
specified—assumption) (not specified—assumption)
Referrals Collaborative discussion (Patient or caregiver) Stakeholder
interviews; MOH,
2016, pg. 17
Sharing confidential data (Assumed) (Not required) MGCSD, 2013;
within provider teams ROK, 2013;
NASCOP, 2015
Sharing confidential data  Collaborative decisions (Patient or caregiver) Stakeholder
with service providers  Patient personally interviews; no
beyond care team transfers data formal guidance
 Provider directly
transfers data
Sharing child’s Consent Consent from child or guardian ROK, 2009c, pg.
confidential data in for sharing with other children 16, 17
school settings
No consent No consent required for sharing ROK, 2009c, pg.
with health personnel, parents, 16, 17
and teachers
Guided by best interest of Not specified ROK, 2013, pg. 6
child
Screening for gender- Not specified  Females 15+ years MOH, 2016, pg. 36
based violence  Emancipated minors
 No guidance on < 15 years
Medical care after rape Informed written consent Survivor or guardian MOH, 2014, pg. 49
Home-based care Consultation but assumed People living with HIV NACP, 2002
disclosure
School-based health Not specified Not specified ROK, 2009c, pg.
services 25; MOPH and
MOE, 2009, pg. 21
Activities for Voluntary participation of Parent/guardian MGCSD, 2013, pg.
institutionalized children child 73, 74
—unclear if applies to
HIV/health
Medical interventions for Consent  Next of kin or legal custodian MGCSD, 2013, pg.
institutionalized children  Authority of staff 53, 54
Care for children Agreement and choice Client (parent or child?) NCCS, 2011, pg.
between alternatives 150
Tracing and reintegration Signed consent form Child, family, and respective ROK, 2014a, pg.
services organization 35
Kinship care Consent Family ROK, 2014a, pg.
47
Kafaalah Consent Relative/involvement of ROK, 2014a, pg.
institution management 51
25
Annex C: Consultation Attendees

Name Organization Title
Kevin Kipkan COGRIL (LEA TOTO PROGRAM) Peer Educator
Florence Nyandwaro COGRIL (LEA TOTO PROGRAM) Psychologist
Rodah Jemeli COGRIL (LEA TOTO PROGRAM) OVC Program Coordinator/Social
Worker
Lucy Alivitsa COGRIL (LEA TOTO PROGRAM) Peer Educator
Christopher Muthoka AFYA JIJINI Technical Officer
Shelvin Mairura HP+ Kenya Program Officer
Betty Odero AFYA JIJINI CEA
Susan Ouma Department of Children Services DC5
Rose Mokaya USAID/KEA PMS/OVC
Florence Kabuga CHO SNO
Leah Rutto NCCG-CHO CNCAH
Lillyan M. Mutua NCCG-CHO CHPC
Valerie Ndege PM-NILINDE PM
Ashley Gibbs HP+ Sr. Associate
Kip Beardsley HP+ Senior Technical Advisor
26
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30
For more information, contact:
Health Policy Plus

Palladium
1331 Pennsylvania Ave NW, Suite 600
Washington, DC 20004
Tel: (202) 775-9680
Fax: (202) 775-9694
Email: [email protected]
www.healthpolicyplus.com

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June 2018

CHILDREN’S CONSENT FOR HIV SERVICES

CHALN Canadian HIV/AIDS Legal Network

COE Council of Europe

HP+ Health Policy Plus

IASSW International Association of Schools of Social Work

IFSW International Federation of Social Workers

MGCSD Ministry of Gender, Children and Social Development

MLSS&S Ministry of Labour Social Security and Services

MOE Ministry of Education

MOH Ministry of Health

MOPH Ministry of Public Health and Sanitation

NACP National AIDS Control Programme

NASCOP National AIDS & STI Control Programme

NCCS National Council for Children’s Services

OAU Organisation of African Unity

RELAF Red Latinoamericana de Acogimiento Familiar

ROK Republic of Kenya

UNGA United Nations General Assembly

UNICEF United Nations Children’s Fund

USAID U.S. Agency for International Development

WHO World Health Organization

Definitions and Terminology Disclosing a Child’s HIV Status to the

Alignment across Health, Social Welfare, and Education Sectors

approached by service providers in general. For example, stakeholders described experiences of

Implicit presumption of decisional capacity and informed consent

Informal assessment/documentation of decisional capacity and informed

Protection from Harmful Cultural Practices

Best Interests of the Child

Children’s Right to Participation

maturity (WHO and UNICEF, 2010, pg. 2, 7). In the field

Kenya policies consistently require alignment of

However, a maturity qualification authorizing an individual to provide or withhold consent for

Consent is required for all interventions, including:

The general components of informed consent are information on purpose, nature,

Enforcement and Redress

Providing/Withholding Consent for Medical and Social Services

While all stakeholders and service providers interviewed

Providing/Withholding Consent for Management of Confidential Health Data

informed of their right to confidentiality and engaged in the

Programmatically, confidentiality is identified as a required topic in the training of healthcare

Kenya policy language provides limited and conflicting guidance on shared

Guidelines in the social and education sectors, in general, provide supportive

Authorization and Capacity to Provide Consent

Caregiver versus Guardian

As identified in Annex B, the discrepancy between caregiver and guardian creates

Annex A: Summary of Findings

8. A maturity qualification to authorize an individual to provide consent is absent in

9. Guidance on how to assess maturity is absent in existing language supporting maturity-

13. The Health Act fails to identify breaches of consent as an offence.

19. Required (compulsory) interventions violate informed consent—treatment for sexually

Annex B: Children’s Consent Summary

Consent Process (not Authorized to Provide Consent

Annex C: Consultation Attendees

Canadian HIV/AIDS Legal Network (CHALN). 2007. A Human Rights-based Commentary on

Government of South Africa. 2005. Children’s Act 38 of 2005.

International Association of Schools of Social Work (IASSW) and International Federation of

IASSW and IFSW. 2012. “Statement of Ethical Principles.” Available at:

Lloyd, A. 2002. “A Theoretical Analysis of the Reality of Children's Rights in Africa: An

Republic of Kenya (ROK). 2001. Children Act (rev. 2016).