Ethical considerations in global HIV phylogenetic research

Abstract

Phylogenetic analysis of pathogens is an increasingly powerful way to reduce the spread of epidemics, including HIV. As a result, phylogenetic approaches are becoming embedded in public health and research programmes, as well as outbreak responses, presenting unique ethical, legal, and social issues that are not adequately addressed by existing bioethics literature. We formed a multidisciplinary working group to explore the ethical issues arising from the design of, conduct in, and use of results from HIV phylogenetic studies, and to propose recommendations to minimise the associated risks to both individuals and groups. We identified eight key ethical domains, within which we highlighted factors that make HIV phylogenetic research unique. In this Review, we endeavoured to provide a framework to assist researchers, public health practitioners, and funding institutions to ensure that HIV phylogenetic studies are designed, done, and disseminated in an ethical manner. Our conclusions also have broader relevance for pathogen phylogenetics.

Using social networks to understand and overcome implementation barriers in the global HIV response

“…More recently, two approaches have been used to capture sexual networks de novo: (i) focusing on quasi-closed communities, such as those confined to islands (62) or those with well-defined social networks where boundary specification is relatively straightforward (63,64); and (ii) attempting to gain saturated coverage of behaviorally or geographically defined groups (65-68). One powerful emerging use of social networks for understanding HIV transmission is its combination with phylogenetic data, thereby attempting to minimize the limitations of both data types (69)(70)(71), although there remain important ethical issues to consider in such detailed inference (72).…”

Why ethics guidance needs to be updated for contemporary HIV prevention research

“…The HPTN and other stakeholders have also published empirically derived guidance regarding post‐trial access to successful interventions [24,25]. Finally, molecular epidemiology has been increasingly playing a role in HIV prevention research and raises ethical, legal and social issues related to directionality of HIV transmission, which could result in stigma, discrimination and criminal prosecution [26].…”

Pangea-Hiv 2

“…However, transmission data needs to be handled very carefully to avoid the possibility that individual pairs can be identified, especially as some sexual practices are illegal across African countries. In light of these concerns, the PANGEA consortium convened a think tank meeting in 2017, including ethicists, legal experts, and social scientists, to propose guidelines for phylogenetic analysis [59]. The guidelines highlight the importance of appropriate communication of phylogenetic results, and ensuring public health benefit is balanced against risks to individuals and communities.…”