Achieving Greater Transparency Regarding Molecular HIV Surveillance: A Proposal to Move Beyond the Status Quo (July 14, 2025)

A multidisciplinary  group of professionals from John Hopkins, Emory and Duke Universities, and The Center for HIV Law and Policy convened recently to deliberate about gathered health data, informed consent, and "the ethical, legal, and social risks of HIV molecular epidemiology". A result of this convening was the academic paper and article, Achieving Greater Transparency Regarding Molecular HIV Surveillance: A Proposal to Move Beyond the Status Quo, just published online in the Open Forum Infectious Diseases, Volume 12, Issue 7, July 2025, ofaf362 by Oxford Academic

Molecular HIV surveillance (MHS) uses data from antiretroviral resistance testing (ARVRT) in effort to enhance HIV prevention efforts by identifying emerging clusters of rapid HIV transmission. Although ARVRT is often conducted during treatment initiation for people with HIV to inform clinical decisions, MHS is a public health activity [1].

Approximately 120 conditions are notifiable by the National Notifiable Diseases Surveillance System, including infectious diseases, foodborne outbreaks, and noninfectious conditions of interest [2]. However, HIV data arguably differ from those related to other reportable conditions, due in part to their potential use for HIV criminalization and stigma. Unlike many other reportable conditions, HIV exposure and the condition itself are criminalized in some jurisdictions [3–5]. There are also factors about HIV making MHS fundamentally different from molecular surveillance of other pathogens. For instance, HIV disproportionately impacts marginalized communities who experience social villainization, heightened stigma, and overpolicing [6, 7]. Furthermore, HIV transmissions often occur through stigmatized activities such as sex and injection drug use.

Concerns regarding the public health uses of ARVRT data are intensified by the routine absence of disclosure and consent for this data sharing [8]. Worries about privacy and autonomy have in turn led to calls for increased transparency about this process [1, 9]. In 2022, the Presidential Advisory Council on HIV/AIDS recommended obtaining informed consent for the use of health data for MHS [10]. However, public health practitioners have raised objections to obtaining consent, citing concerns about feasibility and potential reductions of the amount of public health data that might then be available to fuel robust MHS [11].

As part of the Study of Stakeholder Attitudes towards HIV Molecular Epidemiology (SESAME), a large project designed to gather empirical data to inform deliberations about the ethical, legal, and social risks of HIV molecular epidemiology, we convened a multidisciplinary group of clinicians, community members, ethicists, public health practitioners, and scientists to address the competing tensions related to disclosure regarding MHS. The discussion is summarized here, beginning at the section Spectrum Of Disclosure Regarding MHS.

To read the complete paper, click the file "Achieving Greater Transparency" below. 

You can also see the related news release here.

Contributors to The Article/Paper 

Caroline Lumpkins - Berman Institute of Bioethics, Johns Hopkins University, Baltimore MD

Gail Geller -   Berman Inst. of Bioethics and School of Medicine, Johns Hopkins Univ, Baltimore MD

Travis Sanchez - Dept of Epidemiology, Rollins School of PH, Emory University, Atlanta GA

Janesse Brewer - Dept of International Health, Bloomberg School of PH, Johns Hopkins Univ

Juli Bollinger - Berman Institute of Bioethics, Johns Hopkins University, Baltimore MD

S Mandisa Moore-O’Neal - The Center for HIV Law and Policy, Brooklyn, New York

Coralei Neighbors - Dept of Population Health Sciences, Duke Univ Sch. of Medicine, Durham NC

Carlos Saldana - Dept of Medicine, Div of Infectious Diseases, Emory Univ School of Medicine

Jeremy Sugarman - Berman Inst. of Bioethics and School of Medicine, Johns Hopkins Univ, Baltimore MD