Predictive analytics in HIV surveillance require new approaches to data ethics, rights, and regulation in public health

Abstract

In recent years, applications of big data-driven predictive analytics in public health programs have expanded, offering promises of greater efficiency and improved outcomes. This commentary considers the turn toward predictive modeling in US-based HIV public health initiatives. Through two case studies, we analyze emergent ethical problems and risks. We focus on potential harms related to (1) classifying people living with HIV in public health systems, (2) new ways of combining and sharing individuals' health data that predictive approaches employ, and (3) how new applications of big data in public health challenge the underlying logics and regulatory paradigms that govern data re-uses and rights in public health practice. Drawing on critical technology scholarship, critical bioethics, and advocacy by organized networks of people living with HIV, we argue that stakeholders should enter into a new range of reform-oriented conversations about the regulatory frameworks, ethical norms, and best practices that govern reuses of HIV public health data in the era of predictive public health interventions that target individuals.

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

“…In sum, the introduction of new technology‐enabled paradigms into HIV programs raises the ethical stakes surrounding HIV surveillance in such a way that compels exploring new ethical frameworks that enable individuals to be informed about how their data are used and to assert some controls over these reuses 20,26 . We also recognize that questions about consent, opt‐outs, and plain‐language notifications only speak to some dimensions of the issues raised by uses of these technologies in HIV surveillance and prevention.…”

“…Funded research can include studies that focus on the potential risks of sharing HIV data within the public health system and how to improve these processes, such as by ensuring that Disease Intervention Specialists have adequate training to handle sensitive HIV data along with appropriate cultural safety resources catered to serving people living with HIV. These issues have been discussed by advocates and raised in qualitative and ethical studies of MHS/CDR 11,17,20,22,26,39 …”

“…Concerns expressed by advocates, ethicists, and scholars of HIV surveillance have included a lack of informed consent in HIV surveillance, issues related to bodily autonomy regarding the repurposing of clinical laboratory data for public health purposes, the potential to worsen institutionalized forms of racism in the United States through extracting data from disproportionately affected communities of color, a lack of demonstrated benefit, and how CDR might intersect with HIV criminalization 9–12 . 2018–2023 has seen protests, comments sent to federal agencies, concern from some health department staff, 1 calls for a moratorium on MHS/CDR, and debates in the public health, policy, and ethics literatures to which we have contributed 9,10,13–21 . However, other voices in the field have argued in favor of the practice, ranging from ethicists who have endorsed the benefits of these programs and characterized MHS/CDR technologies as simply “old wine in new bottles” 19 to public health practitioners who advocate for its utility in addressing HIV/AIDS epidemics 5,7,8 .…”

“…These aspects are also potentially the most transformative parts of the resolution because they call for a rethinking of how HIV surveillance and prevention should take place in the era of digitized public health systems, integrated HIV data infrastructures, and routine uses of molecular epidemiology in public health programs. We operate from the premise that new digital health systems and the introduction of pathogen genomics and big data methods into routine practice raise questions about appropriate data uses related to privacy, confidentiality, autonomy, and the right for individuals to be informed that prompt a collective rethinking of traditional public health frameworks that do not require individual consent for infectious disease control programs 20,22,26,27 …”

“…We operate from the premise that new digital health systems and the introduction of pathogen genomics and big data methods into routine practice raise questions about appropriate data uses related to privacy, confidentiality, autonomy, and the right for individuals to be informed that prompt a collective rethinking of traditional public health frameworks that do not require individual consent for infectious disease control programs. 20,22,26,27…”