An interdisciplinary working group assembled to address ethical challenges in US-based HIV phylogenetic research published recommendations and identified areas of future research. Their findings were published in The Journal of Infectious Diseases.
Phylogenetic analysis of HIV sequence data has been used in recent years to investigate transmission patterns and has been applied to prevention trial data, molecular epidemiology studies, and public health surveillance programs. This work is not without ethical concerns, however, including the potential for stigma and marginalization of groups or the potential identification of HIV transmission between individuals. To address these issues, the working group was assembled and included members with expertise in virology, molecular epidemiology, public health, bioethics, community engagement, social work, community-based HIV research, and law.
In 2018 the group met and discussed 6 priority areas: (1) study design; (2) data security, access, and sharing; (3) community engagement; (4) the interface between research, public health, and clinical care; (5) legal issues; and (6) communication. After preliminary recommendations were discussed, subgroups were formed to specifically address each of the 6 topics. There was no formal consensus methodology, but all recommendations were reviewed and approved by the full working group.
Within each topic authors outlined several recommendations. These are not official policy or regulatory approaches but are suggested approaches designed to promote ethical conduct of HIV phylogenetic research projects and aide researchers, oversight bodies, sponsors, community representatives, community-based organizations,
and other stakeholder groups. The working group also identified 8 research topics where more work is needed to address gaps in the literature. These spanned the subject areas of ethical, social, behavioral, and legal aspects of HIV phylogenetic research.
According to the working group, these ethical considerations will need to be continually revisited as the field evolves, and HIV phylogenetic research in jurisdictions outside of the United States will also need to be explored. They also stated their support “for further empirical and scholarly research on these topics, to better inform research while serving the interests of communities and individuals affected by HIV.”
Dawson L, Benbow N, Fletcher FE, et al; on behalf of the NIH Working Group on Ethical Issues in HIV Phylogenetic Research. Addressing ethical challenges in US-based HIV phylogenetic research [published online June 11, 2020]. J Infect Dis. doi:10.1093/infdis/jiaa107