Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms

Abstract

Policy Points Molecular HIV surveillance and cluster detection and response (MHS/CDR) programs have been a core public health activity in the United States since 2018 and are the “fourth pillar” of the Ending the HIV Epidemic initiative launched in 2019. MHS/CDR has caused controversy, including calls for a moratorium from networks of people living with HIV. In October 2022, the Presidential Advisory Council on HIV/AIDS (PACHA) adopted a resolution calling for major reforms. We analyze the policy landscape and present four proposals to federal stakeholders pertaining to PACHA's recommendations about incorporating opt‐outs and plain‐language notifications into MHS/CDR programs.

Health policy counterpublics: Enacting collective resistances to US molecular HIV surveillance and cluster detection and response programs

“…There has not been a controversy related to uses of HIV data in the US at the scale of the MHS/CDR conflict since debates about the introduction of names-based case reporting in the 1990s and 2000s (Fairchild et al, 2007). In the context of growing investments in big data and digital health, controversies over HIV data are likely to extend beyond this case: The matters of concern generated by the MHS/CDR health policy counterpublic were explicitly focused on broader issues in the political economy of health data (McClelland et al, 2020;Molldrem et al, 2023aMolldrem et al, , 2023bSmith et al, 2023). Implementers of new policies related to HIV prevention and surveillance should consider how programs interact with existing HIV criminalization laws and practices, community trust in healthcare, stigma and discrimination, and data sharing, privacy, and security regulations.…”

“…The MHS/CDR health policy counterpublic has consistently gained state recognition, perhaps most notably in the 2022 resolution calling for reforms to MHS/CDR programs that was passed by PACHA, the highest federal advisory body on matters related to HIV policy-a resolution which was followed by a response from the White House Office of National AIDS Policy (ONAP) in March 2023 (Molldrem et al, 2023a;PACHA, 2022;Phillips, 2023). However, several years before this, in 2019, protests about MHS/CDR directed at then-CDC director Robert Redfield played a key role in advancing the counterpublic's policy agenda (Molldrem & Smith, 2020).…”

“…This health policy counterpublic mobilized protracted forms of public protest-including protests in the aesthetic and confrontational traditions of radical AIDS activismalong with scientific publication, blasting out press releases, circulating petitions, issuing major reports, filing public comments to state agencies during designated periods where public input was sought, stakeholder engagement sessions, and conversations in arenas of health policymaking accessible only to those with some degree of insider access (Epstein, 1996(Epstein, , 2007(Epstein, , 2008Keller & Packel, 2014). Along with capacity-building around the issue within the community of critical stakeholders, this diversity of tactics has been crucial to the measure of success that the MHS/CDR health policy counterpublic has had in affecting the trajectory of policy (Molldrem et al, 2023a).…”

“…While possibilities for consent were contested, participants collectively argued for greater community education and efforts to inform patients about how their data might be used, noting that neglecting to do so could heighten distrust in health systems (Smith et al, 2023). Demands for consent affordances, opt-outs, or plain-language notifications about MHS/CDR became a specific policy request of many actors in the MHS/CDR counterpublic, which were legitimized by PACHA (Molldrem et al, 2023a, Molldrem, Smith, & Subrahmanyam, 2023PACHA, 2022).…”

“…Many competing positions have been put forward in debates over the future of these programs, ranging from the view that MHS/CDR activities pose no special ethical dilemmas and that the technologies that enable these programs are simply 'old wine in new bottles' (Dawson & Latham, 2020), to demands that HIV surveillance and prevention ought to be 'abolished' as currently practiced (Bernard et al, 2020). In response to these developments, the Presidential Advisory Council on HIV/AIDS (PACHA), the US's highest federal HIV/AIDS advisory body, has issued a pointed call for major reforms to MHS/CDR (PACHA, 2022; see also Molldrem et al, 2023a).…”