Ethical issues in HIV phylogenetics and molecular epidemiology

Abstract

Purpose of review: HIV phylogenetic and molecular epidemiology (ME) analyses are increasingly being performed with a goal of improving HIV prevention efforts. However, ethical, legal and social issues are associated with these analyses, and should be considered when performed.Recent findings: Several working groups have recently outlined the major issues surrounding the use of ME for HIV prevention. First, the benefits of HIV ME remain unclear, and further work is needed to quantitatively demonstrate the benefits that can be expected. Second, privacy loss is an important risk, with implications of disclosure varying by the regional legal and social climate. Inferential privacy risks will increase with technological improvements in sequencing and analysis. Third, data sharing, which enhances the utility of the data, may also increase the risk of inferential privacy loss. Mitigation strategies are available to address each of these issues. Summary:HIV ME for research and public health pose significant ethical issues that continue to evolve with improving technology, increased sampling, and a changing legal and social climate. Guidance surrounding these issues needs to be developed for researchers and public health officials in an iterative and region specific manner that accounts for the potential benefits and risks of this technology.

Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice

“…Despite being nationally rolled out as the "fourth pillar" of Ending the HIV Epidemic (Fauci et al 2019), there is little high-ranking evidence demonstrating the benefit or efficacy of MHS and CDR (see Burns et al 2011 on levels of evidence, and Rychetnik et al 2002). Mehta et al (2019) pointed out that no controlled trials or prospective empirical observations have been conducted with MHS, and all currently published studies have been uncontrolled observational studies. In stating this we note that there are important critiques of evidence-based medicine, particularly regarding how evidence is not simply implemented, but rather is made through the contingencies of implementation (Rhodes and Lancaster 2019).…”

“…The potential for MHS to lead to new forms of reidentification is a concern, particularly because MHS relies on demographic, behavioral, and other data in addition to HIV genetic sequence data to make any meaningful public health intervention (Mehta et al 2019). Mehta et al (2019) therefore argued that great care needs to be taken in presenting such data, even in an aggregated form, in geographically concentrated analyses.…”

“…The potential for MHS to lead to new forms of reidentification is a concern, particularly because MHS relies on demographic, behavioral, and other data in addition to HIV genetic sequence data to make any meaningful public health intervention (Mehta et al 2019). Mehta et al (2019) therefore argued that great care needs to be taken in presenting such data, even in an aggregated form, in geographically concentrated analyses. In their article about HIV phylogenetics in public health, Brooks and Sandstrom (2013) cited human genomics researchers who were able to reidentify individuals through a combination of publicly available genetic ancestry data with metadata and internet searchable information (Gymrek et al 2013).…”

“…These are key elements of voluntary participation in research, but are not currently applicable to uses of molecular HIV data by public health agencies (Mutenherwa et al 2019). In the absence of informed consent, Mehta et al (2019) and CDC technical guidance suggest that community engagement should take place as part of the rollout of MHS and CDR (CDC 2017a 35, 43; CDC 2018, 50-52). As CDR initiatives move ahead, health departments are required to "inform community stakeholders about cluster response efforts and to garner community feedback, support, and potential collaboration in the process" (Galletly et al 2019).…”

Molecular network-based intervention brings us closer to ending the HIV pandemic

“…Evolutionary studies on non-B HIV must be strengthened to provide a stronger theoretical basis for non-B HIV molecular network studies. Finally, ethical, legal, and social issues remain for HIV molecular network analyses aimed at targeted intervention, as reviewed by Mehta et al recently [96]. The legal provisions and public opinion on disclosure vary greatly from country to country.…”