Advancing a Data Justice Framework for Public Health Surveillance

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

“…One criticism of a framework where consent or opt‐out affordances are incorporated into MHS/CDR is that some people living with HIV may choose not to participate in programs, thus potentially affecting the quality or completeness of data 22,31 . Indeed, limited research has indicated that some people living with HIV may opt out if offered a choice 22,31 .…”

“…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 …”

“…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 . Others take a mixed view and argue that the benefits and risks are uncertain or call for greater research into MHS/CDR programs in order to understand how they can benefit people living with HIV (especially people who are not yet diagnosed) 22–25 . The MHS/CDR controversy came to a head when PACHA convened a workgroup on the subject in May 2022—in which the first author participated—and then in October 2022 passed its resolution calling on the US Centers for Disease Control and Prevention (CDC) to require local MHS/CDR implementation considerations and other reforms.…”

“…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 …”

“…5,7,8 Others take a mixed view and argue that the benefits and risks are uncertain or call for greater research into MHS/CDR programs in order to understand how they can benefit people living with HIV (especially people who are not yet diagnosed). [22][23][24][25] The MHS/CDR controversy came to a head when PACHA convened a workgroup on the subject in May 2022-in which the first author participatedand then in October 2022 passed its resolution calling on the US Centers for Disease Control and Prevention (CDC) to require local MHS/CDR implementation considerations and other reforms. These include establishing MHS/CDR-specific community advisory boards, requiring jurisdictions to conduct MHS/CDR cost benefit analyses, and other requests.…”