Young people, particularly girls and young women, face a higher risk for HIV infection and mortality. However, they remain underrepresented in HIV studies, partly because of ethical and legal difficulties around informed consent. The Adolescent Bioethics Working Group of the PATC3H Consortium called on individuals from low- or middle-income countries to submit proposals for enhancing young people’s participation in HIV research. Lindokuhle Shandu and Dineo Hobyane, former HSRC PYEI interns, have been selected as finalists in the competition for their idea of implementing community forums on adolescents’ sexual and reproductive health.
The legal age of informed consent in research aims to protect young people. With few exceptions, minors are required to obtain permission from their guardians to take part in studies. However, the resulting challenges around youth participation in HIV research can frustrate efforts to better understand the health needs of young people and to develop evidence-informed safe and effective HIV treatment and prevention tools.
A proposal to run community forums for parents and adolescents around sexual and reproductive health won former HSRC interns Lindokuhle Shandu and Dineo Hobyane a place as finalists in an open call for ideas to enhance young people’s participation in HIV research. The HIV Open Call on Informed Consent and Ethics in Research (VOICE) was organised by the Adolescent Bioethics Working Group of the PATC3H Consortium.
In their proposal, the duo refer to a WHO technical report providing guidance on ethical and legal issues around adolescents’ research participation. In one hypothetical scenario outlined in the report, adolescent participants in an HIV prevalence study elect not to begin treatment after testing positive, because doing so would require sharing their HIV status with their parents. In other cases, adolescents may opt out of studies entirely, or researchers might simply focus their research on other groups at risk for HIV.
Rather than trying to find ways of bypassing the need for parental consent, Shandu and Hobyane sought to address the issues at the heart of young people’s reluctance to talk to their parents about their sexual and reproductive health: ongoing stigma around young people’s sexual activity and around HIV/AIDS. In many communities, sexual activity among youth is considered immoral and punished, Shandu said, making it difficult for young people to access sexual and reproductive health services or participate in research studies.
Changing this narrative will require open discussions that, in their words, ‘deconstruct[s] the fear, shame, and stigma associated with being a sexually active youth, and thus…empower[s] them to take control of their health and well-being…”
“A community forum on sexual and reproductive health of young people wouldcreate an open discussion on the topic,” Hobyane and Shandu write in their proposal. “Community members, young people and their parents would beinvited to join this forum to be educated by local sexual health professionals, HIV researchers, policy makers and youth HIV advocates about the benefits ofprevention over abstinence.”
For young people who are sexually active, abstinence-only messaging is unlikely to be an effectual HIV prevention strategy, and may add to adolescents’ shame around sex. “Why not teach them instead about safe sex to prevent them contracting HIV and other sexually transmitted diseases?” Shandu says.
The proposal was met with recognition from the panel of judges. Along with the other finalists, Shandu and Hobyane have revised and submitted their ideas for a second round of evaluation. The winners will be invited to attend a virtual ‘designathon’ to develop a practical guide to enhancing consent to HIV research among young people. According to the organisers, the guide will be disseminated to stakeholders including national Ministries of Health, the International AIDS Society, and the World Health Organisation.
Shandu says he was inspired to participate because of a passion for research, and a concern that young people are still denied participation in research around a matter that affects them.
Hobyane, who studied a BA in public management and governance from the University of Johannesburg, and Shandu, who has a BSocSci (psychology and criminology and forensic studies) from the University of KwaZulu-Natal, are recent graduates of the HSRC Presidential Youth Employment Intervention internship programme.
“Research is one of the things that I’m super passionate about,” Shandu says. “And I used some of the skills that I acquired from the internship to actually do this research on improving the young people’s participation in HIV research.”