Through the many presentations, activities and events during the three days of the 2nd International Workshop on HIV Adolescence: Challenges and Solutions, the emphasis on youth involvement was highlighted consistently. It is through this lens that SHARE staff reflect on thoughts from youth participants before its closing.
Looking at where we have come from, and where we are in southern Africa’s fight against HIV, it is clear that we have had some monumental successes and some incredible failures along the way, both of which we can learn from to do better. One clear theme throughout the first day of the 2nd International Workshop on HIV Adolescence: Challenges and Solutions was that we have not consistently and adequately gained the insights of the very people who are enrolled in studies to generate evidence on how to address the needs of these populations. Further, we have not committed the resources required to conduct the research on the populations that are difficult to reach, whether due to challenging ethical enrolment or stigma and criminalization of key populations.
Despite the fact that people under the age of 18 make up about 25% of the global population, research among adolescents has been a neglected area. We know that it is important to conduct research among pediatric and adolescent populations, but to date the focus has remained on adults. Just how significant the risks are of not including adolescents in clinical trials emerged as a key theme at the 2nd International Workshop on HIV Adolescence, as well as the logistical, ethical, legal, justice, and human rights considerations that need to be taken into account when designing and implementing research involving adolescents.
It is an internationally accepted principle that ethics norms should be applied and enforced in research with humans through ethics review by research ethics committees (RECs). This places RECs at the very heart of the system for protecting participants and enforcing their rights. In the South African ethical-legal framework for child research, there are divergent approaches to consent - from mandatory parental consent for child research, which limits the authority for proxy consent to parents and legal guardians, to self-consent by older adolescents, provided certain conditions are met, and consent by a range of parental substitutes where there are no available parents or legal guardians.
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This photo story, about implementing the CHARISMA intervention pilot in Johannesburg, South Africa, illustrates how the pilot unfolded, starting with CHARISMA lay counselors conducting relationship assessments in 2016 with women using the vaginal dapivirine ring for HIV prevention in the MTN-025