Jeremy Sugarman

Background: HIV molecular epidemiology (HIV-ME) uses genetic sequencing to study viral evolution, detect transmission clusters, and guide public health responses. Ethical, legal, and social implications of HIV-ME have been raised, yet quantitative evidence on community perspectives remains limited. We quantified community priorities for HIV-ME program features and examined their heterogeneity. Methods: Adult cisgender men who have sex with men, including people living with HIV (PLWH), were recruited from the 2023-2024 American Men’s Internet Survey. Best-worst scaling assessed the importance of 11 HIV-ME features across 11 choice tasks using a Youden experimental design. Aggregate results were estimated using conditional logit models and rescaled to importance scores summing to 100%. Heterogeneity in priorities was assessed using stratified models and latent class analysis. Results: Among 747 people who completed the survey, 18% were PLWH, 35% were under 40, 34% reported concern about stigma, and 38% resided in states with active HIV criminalization statutes. “Ensuring privacy” was the most important feature, followed by HIV-ME uses for cluster detection and response, studying viral evolution, and evaluating prevention. Priorities did not differ when stratified by HIV status (p<0.01). Two latent classes emerged: a larger “Use the Data” group (n=472, 63%) placed 64% of importance on HIV-ME uses, and a smaller ‘Protect the Data’ group (n=275, 37%) placed 26% of importance on HIV-ME uses and 64% on: ensuring privacy, obtaining permission for and providing disclosure about data use, and limiting law-enforcement access. Conclusions: Community support is broad for HIV-ME uses, particularly with protections for data privacy, access, and use.

Background: Donation-based prosocial interventions for health, such as monetary donations for diagnostic tests, aim to encourage voluntary actions that benefit others while fostering public participation to promote health. These interventions are increasingly used in public health, but the associated ethical issues have not been comprehensively described. Methods: We conducted a scoping review using the Arksey and O’Malley framework to synthesize bioethics and public health literature on the ethical issues encountered with donation-based prosocial interventions for health. We searched PubMed, PsycINFO, SCOPUS, NIH Reporter, and ClinicalTrials.gov for empirical qualitative, quantitative, and mixed-methods studies. Two independent reviewers extracted data and coded data from each study according to a codebook. Categories of similar codes were analyzed to name cross-cutting issues across the included studies. Results: The search identified 2,585 citations; 34 publications were included in our review. The publications described studies involving donations of blood, organs, biospecimens, data, and money. Most studies (32/34) were conducted in high-income countries and used observational designs (31/34). We identified three broad categories of benefits associated with donation-based interventions: health (physical and psychological), social (generosity, kindness, and community cohesion), and economic (improving welfare). We also identified several problematic ethical concerns at different levels (donor, recipient, provider, and system), such as undue pressure, privacy concerns, and inaccurate information. To mitigate these concerns, the literature discussed strengthening informed consent, ensuring confidentiality, building public trust, and ensuring appropriate stewardship of donations. We found that most studies did not empirically measure adverse consequences associated with donation-based prosocial interventions. Conclusions: Donation-based prosocial interventions offer several health, social, and economic benefits. However, it is essential to consider the potential ethical concerns that may arise in their design and dissemination. Further research is needed to evaluate the success of mitigation strategies for addressing these concerns and thereby enhance the overall benefits of prosocial interventions.

Background: Molecular HIV surveillance (MHS) is used in the U.S. to inform public health prevention and intervention activities aimed at helping end the HIV epidemic. Its application in this context is currently challenged by ethical, legal, and social concerns, with gaps in understanding how end users weigh these issues. We sought to identify the preferences of MHS end users for improving MHS. Methods: End users completed 12 choice experiment tasks evaluating five attributes of MHS for cluster detection and response. We generated a choice model using conditional logit and report results as relative attribute importance scores, comparing them to attitudinal data from close-ended questions. Responses to open-ended questions provide additional context on areas for MHS improvement. Results: We report findings from 55 of 90 potential end-users who felt capable and agreed to participate. End users include researchers (n = 28) and public health practitioners (n = 27); their preferences do not differ significantly (p = 0.174) so their responses are combined. The highest weight is placed on certainty of MHS benefit (38%), followed by depth of HIV sequence sampling (26%). Lower weight is given to reducing stigma (20%) and personalized inferences (10%) and communication (6%). End users highlight improving MHS through implementation support, community engagement, transparent communication, intervention assistance, risk minimization, and impact assessment; researchers stress the need for better data access. Conclusions: End users place the highest value on having more evidence of MHS benefits. Improving MHS requires attention to implementation support, community engagement, transparent communication, intervention assistance, risk mitigation, impact assessment, and data access.

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Background: Sexual and gender expansive (SGE) individuals in Kazakhstan are disproportionately affected by HIV yet stigma and discrimination pose ethical and practical challenges for HIV prevention research involving them. Although researchers are tasked with ensuring that risks of research participation are reasonable in relation to its benefits, participant-reported risks and benefits of research participation—including negative (NSIs) and positive social impacts (PSIs) on personal relationships, social status, health, and other life domains—among SGE populations have received little attention. Methods: We examined NSIs and PSIs of research participation among SGE individuals in a three-city HIV prevention study in Kazakhstan at the trial’s follow-up visits. We analyzed responses from 579 unique participants who completed a total of 2648 follow-up visits over the 36-month study period (2019–2022). Results: Overall, NSIs were rare: 9 (2%) participants reported NSIs during the study; nearly no NSIs ( =0.0037, SD=0.03) were reported at follow-up visits. These few NSIs included ‘trouble with friends, family, or acquaintances’ and ‘other’. By contrast, PSIs were extensive: 515 (89%) participants reported PSIs during the study; an average of almost five PSIs ( =4.8, SD=3.4) were reported at follow-up visits. The most frequently reported PSIs were ‘gained knowledge’, ‘improvement in HIV-related issues’, and ‘improvement in mental health’. Conclusions: Our findings demonstrate the potential for HIV prevention research to be associated with PSIs for SGE individuals experiencing stigmatization and discrimination. Future research should address NSIs, particularly confidentiality breaches and interpersonal challenges, within HIV prevention research to minimize risks and burdens of participation.

Molecular HIV surveillance is used to in effort to enhance HIV prevention efforts by identifying emerging clusters of rapid HIV transmission. In the United States, it relies upon data from antiretroviral resistance testing done in the context of clinical care. However, information about the public health uses of these data are not always disclosed to patients at the time of testing, which raises ethical concerns. Building upon accumulating data about this practice, a multidisciplinary group argues that there is a need to increase transparency of the practice through active disclosure.

The “least infringement condition” offers a reasonable articulation of the obligation to use less morally sensitive methods and materials to achieve important scientific objectives.