Old Pictures in New Frames, Old Wine in New Bottles and the Social Sciences of HIV Cure Research
By Karine Dubé, Adam Gilbertson and Stuart Rennie
National Institutes of Health/National Institute of Mental Health held a think tank meeting in Bethesda, MD on 22 – 23 September 2014 to discuss key research priorities related to social and ethical issues connected to HIV cure research. The meeting was attended by social scientists, ethicists, patient advocates and HIV cure research scientists from around the world, as well as members from the searcHIV working group.
There was a broad consensus among meeting participants that many of the ethical issues related to current HIV cure research have been encountered in the past and that there is much to be gained by learning from other fields such as oncology as well as from past efforts to address other infectious diseases, including TB and syphilis. Long-standing questions in bioethics, such as the fair and balanced selection of study participants, equal distribution of risks/burdens and benefits, the informed consent process, stakeholder engagement and communication of research all must be addressed by HIV cure researchers and other stakeholders. However, key questions remain about the unique ethical challenges encountered in HIV cure related research including those related to the risks of suspending participants’ ART in clinical research, the inclusion of children and women of reproductive potential, managing risks to intimate partners of cure trial participants, and the issues of ongoing and ancillary care.
Meeting participants emphasized the need to understand better patients’ reasons for participating in HIV cure studies, as well as their expectations, preferences and overall lived experiences of trial participation and living with HIV. Gaining a better understanding of how patients and the public understand notions of cure and how identities –especially HIV-positive identities – are affected by the prospects of a cure were also highlighted as priorities. Additionally, meeting members acknowledged the need to manage expectations and to determine how to communicate better the uncertainties within the science and the risks of HIV cure research. The topic of treatment interruption and appropriate endpoints in HIV cure studies will be a priority for social scientists, together with notions of therapeutic/curative misconception and optimism. Finally, meeting participants discussed the importance of scientific literacy around HIV cure research for stakeholder communities, as well as the need for biomedical scientists to know and understand the various communities that are most likely to be impacted by their research practices, discoveries, and future interventions.
Overall, there was a broad realization that the various approaches to eliminate HIV persistence, such as early treatment, gene transfer, latency reversing agents or pediatric studies, are highly heterogeneous. While we will need to appreciate the broad research agenda of HIV cure research, we will also need to appreciate each research modality in its own right. Furthermore, empirical research will need to be linked with theoretical frameworks, and normative questions will need to be considered separately from empirical questions. We will need to adopt a human rights/distributive justice perspective and engage potential study participants as equal partners in the research enterprise.
Social scientists should appreciate lessons learned from proxy fields, but also consider and appreciate the unique aspects of HIV cure research. Community engagement will not serve as a substitute for the social sciences as there are independent empirical questions that need systematic study, such as researcher and research ethics committee member’s views on acceptable risk in HIV cure research. We will also need to adopt a spirit of multi-disciplinarity and consilience when addressing social and ethical issues related to HIV cure research.
Luckily, we are catching the field at an early stage and we are at a critical juncture. We are given a unique opportunity to integrate the social sciences in the HIV cure research agenda in a meaningful way and to start asking the key ethical and social sciences questions.
