Ann Strode

Child consent in South African law: Implications for researchers, service providers and policy-makers

Children under 18 are legal minors who, in South African law, are not fully capable of acting independently without assistance from parents/legal guardians. However, in recognition of the evolving capacity of children, there are exceptional circumstances where the law has granted minors the capacity to act independently. We describe legal norms for child consent to health-related interventions in South Africa, and argue that the South African Parliament has taken an inconsistent approach to: the capacity of children to consent; the persons able to consent when children do not have capacity; and restrictions on the autonomy of children or their proxies to consent. In addition, the rationale for the differing age limitations, capacity requirements and public policy restrictions has not been specified. These inconsistencies make it difficult for stakeholders interacting with children to ensure that they act lawfully.

Enrolling adolescents in HIV vaccine trials: reflections on legal complexities from South Africa

BackgroundSouth Africa is likely to be the first country in the world to host an adolescent HIV vaccine trial. Adolescents may be enrolled in late 2007. In the development and review of adolescent HIV vaccine trial protocols there are many complexities to consider, and much work to be done if these important trials are to become a reality.DiscussionThis article sets out essential requirements for the lawful conduct of adolescent research in South Africa including compliance with consent requirements, child protection laws, and processes for the ethical and regulatory approval of research.SummaryThis article outlines likely complexities for researchers and research ethics committees, including determining that trial interventions meet current risk standards for child research. Explicit recommendations are made for role-players in other jurisdictions who may also be planning such trials. This article concludes with concrete steps for implementing these important trials in South Africa and other jurisdictions, including planning for consent processes; delineating privacy rights; compiling information necessary for ethics committees to assess risks to child participants; training trial site staff to recognize when disclosures trig mandatory reporting response; networking among relevant ethics commitees; and lobbying the National Regulatory Authority for guidance.

Inclusion of disability within national strategic responses to HIV and AIDS in Eastern and Southern Africa

Purpose. National strategic plans (NSPs) provide a framework for a comprehensive response to human immunodeficiency virus (HIV) including strategies such as prevention, treatment, care and support for all affected. Research indicates limited recognition of the interrelationship between disability and HIV in the Eastern and Southern Africa (ESA). This paper analyses the extent to which NSPs in ESA address disability, and identify good practice. Method. Using a tool based on relevant rights in the UN Convention on the Rights of Persons with Disabilities and the UNAIDS International Guidelines on HIV and Human Rights, a review of 18 NSPs in ESA was conducted to determine the extent to which they included disability. Results. Although many NSPs fail to integrate disability issues, there are examples of good practice from which much can be learned, particularly with respect to disability and HIV-prevention efforts. There is limited provision for treatment, care and support for disability in the context of HIV and AIDS. Conclusions. Many NSPs in ESA are due for review, providing ample opportunities for the development of disability-inclusive responses. Future NSPs need to integrate the needs of people with disabilities within structures, programmes and monitoring and evaluation, and make provision for increased rehabilitation needs caused by HIV. A rights-based approach and specific financial allocation of resources are crucial for this process.

She made up a choice for me: 22 HIV-positive women's experiences of involuntary sterilization in two South African provinces.

Abstract Since 1998 South African law has provided that adults should have access to sterilization but only with their informed consent. However, the right to sterilization and other sexual and reproductive rights have not been fully realized as women struggle to access limited services, and there are allegations of discrimination and sterilization abuses. This qualitative study explores the experiences of 22 HIV-positive women in two provinces who reported being sterilized between 1996 and 2010 without their informed consent (n=18) or without their knowledge (n=4). Key issues reported by participants included failure to respect their autonomy, lack of information given about what sterilization entailed, and subtle or overt pressure to sign the consent form. Although the legal framework was intended to ensure informed decision-making regarding sterilization, these protections appear to have failed the HIV-positive women in this study. The findings suggest that some health professionals may consider a signature on a consent form as sufficient regardless of how it was obtained. Furthermore the women’s perceptions that they were singled out as needing to be sterilized simply because they were HIV-positive warrants further investigation. More research is required on the nature of the problem and on other stakeholders’ perceptions. Résumé Depuis 1998, la loi sud-africaine garantit l’accès des adultes de plus de 18 ans à la stérilisation, mais seulement avec leur consentement éclairé. Néanmoins, le droit à la stérilisation et d’autres droits génésiques ne sont pas pleinement réalisés puisque les femmes luttent pour accéder à des services limités et que certaines se plaignent de discrimination et de stérilisations abusives. Cette étude qualitative menée dans deux provinces analyse l’expérience de 22 femmes séropositives qui ont indiqué avoir été stérilisées sans leur consentement éclairé (n=18) ou à leur insu (n=4). Les principales questions citées par les participantes concernaient le non-respect de leur autonomie, le manque d’informations sur les conséquences de la stérilisation et les pressions subtiles ou manifestes exercées pour leur faire signer le formulaire de consentement. Même si le cadre juridique avait pour but de garantir une prise de décision éclairée sur la stérilisation, les garanties ne semblent pas avoir protégé les femmes séropositives de l’étude. Il apparaît que certains professionnels de santé considèrent comme suffisante une signature dans un formulaire de consentement, quelle que soit la manière dont elle a été obtenue. De plus, l’impression des femmes qu’elles ont été orientées vers la stérilisation simplement du fait de leur séropositivité doit être examinée plus attentivement. Davantage de recherches sont nécessaires sur la nature du problème et les perceptions d’autres parties prenantes. Resumen Desde 1998, la ley de Sudáfrica dispone que toda persona adulta debe tener acceso a esterilización pero solo con su consentimiento informado. Sin embargo, el derecho a la esterilización y otros derechos sexuales y reproductivos no se han realizado plenamente, ya que las mujeres luchan por tener acceso a servicios limitados y existen alegaciones de discriminación y abuso de esterilización. En este estudio cualitativo se exploran las experiencias de 22 mujeres VIH-positivas en dos provincias, quienes relataron haber sido esterilizadas sin su consentimiento informado (n=18) o sin su conocimiento (n=4) entre 1996 y 2010. Los asuntos clave mencionados por las participantes fueron: falta de respeto por su autonomía, falta de información respecto al procedimiento de esterilización y presión sutil o explícita para firmar el formulario de consentimiento. Aunque el marco legislativo fue creado para garantizar una toma de decisiones informadas respecto a la esterilización, estas protecciones parecen haberles fallado a las mujeres VIH-positivas en este estudio. Los hallazgos indican que algunos profesionales de la salud consideran que basta con tener una firma en el formulario de consentimiento, sin importar cómo se obtuvo. Más aún, las percepciones de las mujeres de que fueron señaladas como que necesitaban ser esterilizadas simplemente porque era VIH-positivas, merecen una investigación más a fondo. Se necesitan más investigaciones sobre la naturaleza del problema y sobre las percepciones de otras partes interesadas.

HIV vaccine research - South Africa\'s ethical-legal framework and its ability to promote the welfare of trial participants

An effective ethical-legal framework for the conduct of research is critical. We describe five essential components of such a system, review the extent to which these components have been realised in South Africa, present brief implications for the ethical conduct of clinical trials of HIV vaccines in South Africa and make recommendations. The components of an effective ethical-legal system that we propose are the existence of scientific ethical and policy-making structures that regulate research; research ethics committees (RECs) that ethically review research; national ethical guidelines and standards; laws protecting research participants; and mechanisms to enforce and monitor legal rights and ethical standards. We conclude that the ethical-legal framework has, for the most part, the necessary institutions, and certain necessary guidelines but does not have many of the laws needed to protect and promote the rights of persons participating in research, including HIV vaccine trials. Recommendations made include advocacy measures to finalise and implement legislation, development of regulations, analysis and comparison of ethical guidelines, and the development of measures to monitor ethical-legal rights at trial sites.

“I feel like half a woman all the time”: The impacts of coerced and forced sterilisations on HIV-positive women in South Africa

abstract HIV-positive women are entitled to sexual and reproductive health rights, including access to contraceptives of their choice. One such option is sterilisation. Given its permanency, a womans decision to sterilise should be voluntary and fully informed. However, there have been multiple reports that HIV-positive women are being sterilised without their informed consent, and sometimes without their knowledge, in southern Africa and elsewhere. The Article explores the socio-cultural, physical and emotional/psychological impacts of coerced and forced sterilisations on HIV-positive women. It is part of a larger qualitative study, conducted in South Africa, which explored the experiences of 22 HIV-positive women who reported being sterilised without their informed consent. Involuntary sterilisation has devastating impacts on women, affecting them mentally and physically, and impacting on their relationships with their partners, families and the wider community. Many interviewees reported that being sterilised profoundly affected their perceptions of themselves as women. Involuntary sterilisations have grave social and emotional implications for already marginalised HIV-positive women. Therefore efforts should be made to address human rights violations in South African healthcare settings and to prevent further gender-based abuses.

Using the concept of ‘parental responsibilities and rights’ to identify adults able to provide proxy consent to child research in South Africa

There are circumstances where independent consent to research by children is appropriate (for example, where the participants are older adolescents and the research approximates minimal risk). However, in many instances an important safeguard will be a dual consenting process involving an appropriate adult alongside the potential child participant (according to their evolving capacities). But what adults are appropriate in what instances? We attempt to use principles set out in the Children’s Act (2010) to address this question. This article differentiates between those adults who according to the Children’s Act (2010) have full parental responsibilities and rights (i.e. parents/guardians) and those who have no parental responsibilities and rights (i.e. caregivers). We argue that some responsibilities accorded to caregivers are substantially similar to the authority to provide proxy consent to research in which the research risks approximate those risks present in the child’s everyday life. In these instances, we argue that where parents and guardians are not available, caregivers should be considered by research ethics committees as a possible source of proxy consent for younger children. This approach might not be logically extended to caregiver consent for clinical trial enrolment, for which alternative arguments may need to be debated.

Implications of the ethical-legal framework for adolescent HIV vaccine trials--report of a consultative forum.

The ethical-legal framework in South Africa is in a period of transition, with a number of new developments changing the substantive principles and procedures for health research in the country. Some of the changing dynamics include both law reform and the review of ethical guidelines. This changing environment poses many complexities for researchers, research ethics committees and participating communities involved in planning, implementing and reviewing research with child participants, including HIV vaccine trials. This paper presents the major themes and outcomes of a consultative meeting convened by the HIV AIDS Vaccines Ethics Group in July 2004 for key stakeholder groups. At this forum participants discussed the complexities posed by a transitional and sometimes contradictory ethical-legal framework and how the framework could be improved to simultaneously promote critical research and the welfare of child participants.

Medicine and the law - amendments to the Sexual Offences Act dealing with consensual underage sex : implications for doctors and researchers : in practice

In terms of the Sexual Offences and Related Matters Amendment Act, consensual sex or sexual activity with children aged 12 - 15 was a crime, and as such had to be reported to the police. This was challenged in court in the Teddy Bear case, which held that it was unconstitutional and caused more harm than good. In June 2015, the Amendment Act was accepted by both the National Assembly and the National Council of Provinces, and came into operation on the 3 July 2015. This article looks at the amendments to sections 15 and 16 of the Act and what the reporting obligations for medical professionals and researchers are in light of the amendments, as well as the duty to provide medical services and advice to adolescents.

Disability rights in the context of HIV and AIDS: a critical review of nineteen Eastern and Southern Africa (ESA) countries

Purpose: Many Eastern and Southern African (ESA) states are obliged to review and amend their legal frameworks with regards to disability since signing and ratifying the UN Convention on the Rights of Persons with Disabilities (CRPD). The HIV epidemic is one of the main health concerns in the region and is becoming increasingly associated with causing disabilities. In addition, people with disabilities are particularly at risk of exposure to HIV. Despite this, HIV programming has not yet included the interrelationship of disability and HIV. The principles within the CRPD may create much-needed international pressure and so provide a platform for the integration and inclusion of disability into HIV policies and programs. Method: This paper is based on a review of the legal framework in relation to HIV and disability in 19 ESA countries. It identifies 12 key articles of the Convention, which are particularly relevant to the interrelationship of HIV and disability. The paper assesses how these are integrated in the region’s disability or HIV legal frameworks and identifies the main gaps within these legal systems. Results: While many country’s constitutions, disability and HIV laws protect certain key rights, such as the rights to equality and nondiscrimination, employment and health, there are clear gaps in the legal responses to disability and HIV. In particular, legal frameworks fail to provide adequately for accessibility, mobility and access to justice and protection from violence for people with disabilities. This results in limited protection for people with disabilities from HIV exposure and access to services to address HIV-related health and welfare needs. Conclusions: The paper identifies the gaps and makes recommendations for implementing steps toward the integration of disability into HIV-related laws, policies and programs. Implications for Rehabilitation Rehabilitation in Eastern and Southern Africa has to cater for an increasing number of people living with HIV who experience disability. The legal obligation of Article 25 in the Convention on the Rights of Persons with Disabilities (CRPD) obliges African states to provide appropriate rehabilitation and access to health care services for people with disabilities.