by Drs. Karine Dube and Joseph D. Tucker
How do key stakeholders understand the risks and benefits associated with participating in an HIV remission research study? This was the core question asked in our team’s research study published in PLoS ONE. Much of HIV remission research to date has focused biomedical science, and with good reason. There are still many biological hurdles to identifying an HIV cure.
At the same time, people living with HIV (PLWHIV) have an important place in the long journey towards an HIV cure. During the 1980s, PLWHIV were at the forefront of HIV science, literally re-drawing the framework for how drugs were approved by the United States Food and Drug Administration (FDA). HIV activists have made substantial contributions to HIV science from the earliest moments of the HIV epidemic.
Bringing this long tradition forward to the present, the research study examined PLWHIV’s perspectives on the risks and benefits of taking part in HIV remission research. The qualitative study interviewed 36 individuals, including people living with HIV (PLWHIV), biomedical cure researchers, policy makers, and bioethicists. One of the four main themes identified in this research study was that PLWHIV needed more information about the state of HIV cure research. One of the participants noted, “All I see is benefits in the search for a cure.” This suggests the need for further community engagement activities related to HIV cure and remission science.
Further community-based activities and research are needed to bridge the gap between scientists and the communities they serve.