Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders

Molldrem, Stephen; Smith, Anthony K J; Subrahmanyam, Vishnu

doi:10.1080/23294515.2023.2262967

Cited by 4 publications

(3 citation statements)

References 57 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…It is worth considering, however, that informed consent is not a one-dimensional concept. Molldrem et al, for instance, conducted semi-structured interviews to collect different perspectives on informed consent from critical stakeholders involved in molecular HIV surveillance [13]. Within their research, they presented five approaches to consent, each differing in its deviation from the status quo and in its speculation about potential future consent practices in HIV surveillance and prevention.…”

Section: Ethical Considerations 21 Ethical Considerations Regarding A...mentioning

confidence: 99%

Ethical Considerations for Artificial Intelligence Applications for HIV

Garett,

Kim,

Young

2024

View full text Add to dashboard Cite

Human Immunodeficiency Virus (HIV) is a stigmatizing disease that disproportionately affects African Americans and Latinos among people living with HIV (PLWH). Researchers are increasingly utilizing artificial intelligence (AI) to analyze large amounts of data such as social media data and electronic health records (EHR) for various HIV-related tasks, from prevention and surveillance to treatment and counseling. This paper explores the ethical considerations surrounding the use of AI for HIV with a focus on acceptability, trust, fairness, and transparency. To improve acceptability and trust towards AI systems for HIV, informed consent and a Federated Learning (FL) approach are suggested. In regard to unfairness, stakeholders should be wary of AI systems for HIV further stigmatizing or even being used as grounds to criminalize PLWH. To prevent criminalization, in particular, the application of differential privacy on HIV data generated by data linkage should be studied. Participatory design is crucial in designing the AI systems for HIV to be more transparent and inclusive. To this end, the formation of a data ethics committee and the construction of relevant frameworks and principles may need to be concurrently implemented. Lastly, the question of whether the amount of transparency beyond a certain threshold may overwhelm patients, thereby unexpectedly triggering negative consequences, is posed.

show abstract

Section: Ethical Considerations 21 Ethical Considerations Regarding A...mentioning

confidence: 99%

Ethical Considerations for Artificial Intelligence Applications for HIV

Garett,

Kim,

Young

2024

View full text Add to dashboard Cite

show abstract

“…The sample included 26 participants who were demographically diverse, highly educated, and had had long-term involvement and expertise in the HIV/AIDS sector, including as activists, public health professionals, or researchers, with many inhabiting multiple roles over time (for further discussion of participant demographics, see Molldrem, Smith, & Subrahmanyam, 2023). All participants held expertise about the US HIV response, including traditional forms of scientific or public health expertise, policy expertise, and types of 'lay expertise' that have shaped the HIV/AIDS response (Epstein, 1996).…”

Section: The Study: Understanding Criticisms and Concerns About Mhs A...mentioning

confidence: 99%

“…While possibilities for consent were contested, participants collectively argued for greater community education and efforts to inform patients about how their data might be used, noting that neglecting to do so could heighten distrust in health systems (Smith et al, 2023). Demands for consent affordances, opt-outs, or plain-language notifications about MHS/CDR became a specific policy request of many actors in the MHS/CDR counterpublic, which were legitimized by PACHA (Molldrem et al, 2023a, Molldrem, Smith, & Subrahmanyam, 2023PACHA, 2022).…”

Section: New Matters Of Ethical Concern: Challenging Mhs/cdr In Light...mentioning

confidence: 99%

Health policy counterpublics: Enacting collective resistances to US molecular HIV surveillance and cluster detection and response programs

Molldrem,

Smith

2023

Soc Stud Sci

Self Cite

View full text Add to dashboard Cite

Health policies and the problems they constitute are deeply shaped by multiple publics. In this article we conceptualize health policy counterpublics: temporally bounded socio-political forms that aim to cultivate particular modes of conduct, generally to resist trajectories set by arms of the state. These counterpublics often emerge from existing social movements and involve varied forms of activism and advocacy. We examine a health policy counterpublic that has arisen in response to new forms of HIV public health surveillance by drawing on public documents and interview data from 2021 with 26 stakeholders who were critical of key policy developments. Since 2018, the national rollout of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs in the United States has produced sustained controversies among HIV stakeholders, including among organized networks of people living with HIV. This article focuses on how a health policy counterpublic formed around MHS/CDR and how constituents problematized the policy agenda set in motion by federal health agencies, including in relation to data ethics, the meaningful involvement of affected communities, informed consent, the digitization of health systems, and HIV criminalization. Although familiar problems in HIV policymaking, concerns about these issues have been reconfigured in response to the new sociotechnical milieu proffered by MHS/CDR, generating new critical positions aiming to remake public health. Critical attention to the scenes within which health policy controversies play out ought to consider how (counter)publics are made, how problems are constituted, and the broader social movement dynamics and activist resources drawn upon to contest and reimagine policymaking in public life.

show abstract

What to do with the new molecular publics: the vernacularization of pathogen genomics and the future of infectious disease biosocialities

Molldrem

2024

BioSocieties

View full text Add to dashboard Cite

Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders

Cited by 4 publications

References 57 publications

Ethical Considerations for Artificial Intelligence Applications for HIV

Ethical Considerations for Artificial Intelligence Applications for HIV

Health policy counterpublics: Enacting collective resistances to US molecular HIV surveillance and cluster detection and response programs

What to do with the new molecular publics: the vernacularization of pathogen genomics and the future of infectious disease biosocialities

Contact Info

Product

Resources

About