Ethical Considerations for a Public Health Response Using Molecular HIV Surveillance Data: A Multi-Stakeholder Approach
On May 10 and 11, 2017, the Third Coast Center for AIDS Research (CFAR), in collaboration with Project Inform, sponsored a multi-sector stakeholder consultation in Chicago, IL, to discuss the potential benefits and drawbacks to the now-expanding use of analyses of relatedness of HIV genetic sequences (called phylogenetic analyses of HIV) as another tool for guiding public health efforts aimed at limiting HIV spread. Phylogenetic analysis derives from HIV resistance genotyping, which has been used since the late 1990s, to guide the selection of antiretroviral drugs. As of January 1, 2018, the Centers for Disease Control and Prevention (CDC) funds all health departments to support reporting and monitoring of these results which is referred to as Molecular HIV Surveillance (MHS).
Local, state and federal public health agencies have analyzed MHS data to identify, investigate and respond to growing clusters of newly diagnosed individuals who share closely related HIV genetic sequences, referred to as molecular clusters. Anticipating the imminent expansion of the use of MHS to guide public health efforts, the Third Coast CFAR thought that it was important to hold a consultation to discuss potential benefits, drawbacks, and ethical considerations of utilizing HIV sequence data for public health action to inform implementation of this new approach. The consultation, with participation from local and state health departments, federal funders, researchers, bioethicists, legal scholars and advocates from both local and national HIV organizations led to recommendations in four overarching themes:
a) Community education and engagement;
b) Law and ethics;
c) Public health policies and procedures; and
d) Effectiveness and implementation research.
This new public health strategy brings new challenges, opportunities and promise to HIV prevention. The consultation highlighted the need for: in-depth understanding of what current technology can and can’t tell us about HIV transmission using reportable resistance genotyping results; research to assess the impact of this new approach in decreasing new HIV infections; and optimal state and local policies and procedures to increase its benefit and, minimize its risk to people living with HIV.