Volume 20, Issue 10, October 2020, Page W1-W3.

Jennifer Blumenthal-Barby (2024) argues that “[i]t is time for bioethics to end talk about personhood” (11). The author calls on the field to ask different kinds of normative questions about the mo...

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. (shrink)

The COVID-19 pandemic coincided with a transition in my scholarly life. Specifically, I shifted from being a postdoctoral fellow in an anthropology department at a traditional university to a tenure track position as an assistant professor at an institute for bioethics and health humanities within an academic health center. This development has been instructive, partly because I have begun learning about how the political economies of academic medicine and the traditional university differ, align, and respectively shape institutional research cultures. My (...) primary research interests are focused on ethical and socio-technical issues in infectious disease research and control, including in initiatives that are... (shrink)