Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders

Abstract

Background

The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals’ routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals’ rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional public health ethics frameworks. This study aimed to explore views on consent within MHS/CDR among critical stakeholders.

Methods

In 2021 we interviewed 26 US HIV stakeholders who identified as being critical or concerned about the rollout of MHS/CDR. Stakeholders included participants belonging to networks of people living with HIV, other advocates, academics, and public health professionals. This analysis focused on identifying the range of positions among critical and concerned stakeholders on consent affordances, opt-outs, how to best inform people living with HIV about how data about them are used in public health programs, and related ethical issues.

Results

Participants were broadly supportive of introducing some forms of consent into MHS/CDR. However, they differed on the specifics of implementing consent. While some participants did not support introducing consent affordances, all supported the idea that people living with HIV should be informed about how HIV surveillance and prevention is conducted and how individuals’ data are used.

Conclusions

MHS/CDR has caused sustained controversy. Among critical stakeholders, consent is generally desirable but contested, although the right for people living with HIV to be informed was centrally supported. In an era of big data-driven public health interventions and routine uses of HIV genetic sequence data in surveillance and prevention, CDC and other agencies should revisit public health ethics frameworks and consider the possibility of consent processes.

Keywords:

• Health policy
• public health ethics
• empirical bioethics
• ending the HIV epidemic
• data justice

Acknowledgements

The authors thank the study participants, the editors of AJOB Empirical Bioethics, and the anonymous reviewers. SM also thanks Tom Boellstorff for his support during the conceptualization and execution of this study and for his mentorship while SM was a postdoctoral fellow.

Disclosure statement

The authors have no conflicts of interest to disclose.

Ethical approval

This study was considered category 2 exempt human subjects research by the University of California, Irvine IRB, where SM was employed when the research was conducted. All participants were given the study’s informed consent document via email during recruitment and provided verbally recorded consent before interviews.

Additional information

Funding

Funding for this study was provided by the University of California President’s Postdoctoral Fellowship Program, through SM.