September/October 2021

Molecular HIV Surveillance (MHS) is the use of data collected during routine drug resistance testing to compare HIV genetic sequences, determine if they are related, and thus identify HIV “risk networks”, as defined here by the Center for Disease Control. For years, people living with HIV have raised concerns with MHS because it denies people living with HIV our agency, privacy, and bodily autonomy. MHS is yet another means through which marginalized communities, like sex workers, people who use drugs, Black and Latinx gay and bisexual men can be placed at risk for criminalization.

Both federal HIV plans, Ending the HIV Epidemic (EHE) and the HIV National Strategic Plan (HNSP), incorporate MHS as a cornerstone to the HIV response and have tied HIV prevention funding to the implementation of MHS in all jurisdictions… But for years, networks of people living with HIV, including members of HNP, have been vocal about the ways MHS presents a potential for serious harm to the health and safety of communities most impacted by the epidemic. Concerns raised by community advocates include the lack of informed consent for data collection, perpetuating distrust of public health and medical institutions, and lack of consistent protection and privacy laws to protect from the use of molecular HIV data in criminal or civil proceedings.

HNP partners have provided comments raising these concerns to federal advisory bodies including The Presidential Advisory Council on HIV/AIDS (PACHA), the CDC/HRSA Advisory Committee (CHAC), and federal agencies including the National Institutes of Health (NIH) and the Department of Health and Human Services.

Recently, the Center for HIV Law and Policy, Positive Women’s Network-USA, and the U.S. People Living with HIV Caucus submitted a joint comment in response to the NIH’s Request for Information on Developing Consent Language for Future Use of Data and Biospecimens, highlighting the need for informed consent, data privacy laws, and strong security protections when dealing with sensitive HIV data and private health information.. Read the entire comment, here.

In a recent interview, Tracked and Monitored: Advocates Call for a Moratorium on Molecular HIV Surveillance, Andrew Spieldenner, vice-chair of the U.S. Caucus of People Living with HIV, and Naina Khanna, Co-Executive Director of Positive Women’s Network-USA, summarized apprehension about the rollout and expansion of MHS, stating “The bottom line is we’re talking about extremely sensitive data, that is private, confidential information about people who are living with an illness that can be criminalized, that is certainly stigmatized, and that can place them at risk for violence—whether it’s interpersonal violence, or discrimination…or violence from the state.”

Privacy, autonomy, and humanity are intertwined in the ways HIV data is collected, monitored, and shared. Spieldenner stated, “As people living with HIV, we have been targets and the objects of HIV surveillance since our diagnosis. And we really want to be able to talk about the embodied experiences of what happens when your body becomes, and your community becomes, tracked, monitored, and intervened on by state apparatuses.”

HNP will continue to advocate that reservations about MHS are taken seriously and that demands for HIV data privacy laws and HIV decriminalization are addressed in current and future iterations of the National HIV/AIDS Strategy and the Ending the HIV Epidemic Plan.