Background: The ethical concerns associated with HIV prevention and treatment research have been widely explored in South Africa. However, HIV cure research is relatively new to the region and significant ethical and social challenges are anticipated as various scientific strategies including early treatment of acute infection, neutralizing antibodies, gene therapy and therapeutic vaccines are explored. Consequently, early stakeholder engagement is critical. While two studies in China and Australia have researched stakeholder perspectives, there has been no similar published empirical enquiry in Africa regarding HIV cure research. This study was conducted to gain preliminary data from South African HIV clinicians, patients, caregivers, medical students, researchers and activists.
Methods: In-depth interviews were conducted on a purposive sample of thirty-five stakeholders in South Africa from October 2015 to February 2016. In addition five focus group discussions (FGDs) were conducted with adolescent patients, caregivers, adult patients, Community Advisory Board members and medical students. Audiotaped interviews and FGDs were transcribed verbatim with concurrent thematic analysis. Analyst triangulation occurred as the data were analysed by three researchers independently and then integrated via discussion.
Results: Common themes emerged from the interviews. The rapid evolution of HIV cure research agendas was prominent with participants expressing some concern that the global North was driving the cure agenda. Assessing and managing knowledge and expectations around HIV cure research emerged as a central theme related to challenges to constructing ''cure''. Distinguishing between biomedical and emotional cure, remission and healing was highlighted as important. Avoiding curative misconception would be critical. Treatment interruption was regarded as a major risk if “cure” failed.
Conclusions: A holistic approach integrating biomedical treatment, prevention and cure research is critical to achieve HIV eradication. The synergistic effect of such scientific research will be enhanced if the social and ethical dimensions of cure are taken into account. The findings of this study have important implications for community engagement, consent processes and possibly compensation for failed interventions in future cure trials. Undoubtedly, knowledge and resource sharing in the context of collaboration between research scientists working in cure and those working in treatment and prevention will accelerate progress towards cure.