Changes to parental consent procedures in South Africa – implications for school-based adolescent sexual health research

To the Editor: How can a researcher protect the rights of adolescents who want to take part in school-based sexual health research, ensuring that informed consent to participate is properly obtained, without hindering the potentially beneficial research itself? In South Africa, the National Health Act 2003 (the Act)1 Sections 71(2) and 71(3), when enacted, may inadvertently compromise the rights of adolescents to benefit from preventive school-based health research, rather than protect them from research-related exploitation.

The proposed changes to the Act will require active consent from a legal guardian for all research conducted with subjects under the age of 18 for so-called ‘therapeutic research’, and both parental consent and ministerial consent for ‘non-therapeutic research’. No other caregiver or custodian will be able to give consent for a child’s participation in research. While current guidelines such as the Department of Health’s ‘Ethics in Health Research’2 state that adolescents defined as ‘persons who have reached puberty’ are able to consent unassisted to research so long as it poses minimal risk and is unlikely to be objectionable to parents and community members, the National Health Act provides no such leeway.2

We feel that the proposed new guidelines are inappropriate for the South African social context. The Act has the potential to prevent children without a legal guardian from accessing research that could potentially benefit them. This is especially problematic, given that those without parents or legal guardians are more vulnerable to early sexual debut and contracting HIV.3 The Act may also compromise an adolescent’s right to dignity and privacy.4 Confidentiality is paramount in research that explores sensitive topics such as sexuality. In South Africa, discussions surrounding HIV/AIDS and sex are often shrouded in stigma, and parent-child communication about these issues is invariably difficult.5 An adolescent who is required to confront a parent or guardian about participation in a sexual health research study may be vulnerable to violence or reproach.

Students should be allowed to participate in school-based sexual health research that recognises and seeks to understand adolescents’ unique needs and that develops programmes to promote their well-being, even if their parents would choose to deny them access on moralistic grounds. In line with other countries, current South African ethics guidance requires that any research content is examined and approved by relevant research ethics committees before it reaches the students. Furthermore, empirical evidence has shown that 14-year-olds may be just as competent as adults in their ability to provide informed consent in terms of ‘stringent legal standards of competency’.6

We suggest that other methods be considered as options for consent to participate in school-based adolescent sexual and reproductive health research. Such methods may include passive parental consent, community consent, and/or independent adolescent consent. We feel that these alternate methods may better reflect the South African social context, and serve the interests of South African adolescents who wish to take part in school-based sexual health research. In this, we do not suggest undermining parental authority but rather encouraging parallel efforts to promote shared decision-making about enrolment in important research.

Amanda J Mason-Jones

Health Systems Research Unit

South African Medical Research Council

Cape Town; and

Adolescent Health Research Unit

University of Cape Town

amanda.mason.jones@mrc.ac.za

Melanie Zuch

Department of Community Health

Brown University

Providence
Rhode Island
USA

Cathy Mathews

School of Public Health and Family Medicine

University of Cape Town; and

Health Systems Research Unit

South African Medical Research Council

Cape Town

Lesley Henley

School of Child and Adolescent Health

University of Cape Town