CHLP Participates in SESAME Convening Resulting in Journal Article on Ethical Necessities in Molecular HIV Surveillance Programs
Earlier this year, CHLP Executive Director S. Mandisa Moore-O'Neal participated in a working group of clinicians, community members, ethicists, public health practitioners, and scientists convened to address the competing tensions related to disclosure regarding MHS as part of SESAME (Study of Stakeholder Attitudes towards HIV Molecular Epidemiology).
SESAME was set up to gather empirical data on the ethical, legal, and social implications of HIV molecular epidemiology—including surveillance methods like using antiretroviral resistance testing (ARVRT) data for public health purposes. The convening was held in spring of 2025 to deliberate on its recent findings and culminated in the article, Achieving Greater Transparency Regarding Molecular HIV Surveillance: A Proposal to Move Beyond the Status Quo published in the July 2025 issue of the journal Open Forum Infectious Diseases (OFID).
The article summarizes these SESAME-driven discussions to support their main argument: that increased transparency and active disclosure are ethical necessities in molecular HIV surveillance programs. It examines the ethical challenges of using HIV genetic sequence data to identify transmission clusters and guide public health interventions. The piece calls for a balanced approach that upholds public health goals while protecting the rights of impacted communities.
Article Contributors
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
