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  1. Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders.Stephen Molldrem, Anthony K. J. Smith & Vishnu Subrahmanyam - 2024 - AJOB Empirical Bioethics 15 (1):66-79.
    Background The emergence of molecular HIV surveillance (MHS) and cluster detection and response (CDR) programs as key features of the United States (US) HIV strategy since 2018 has caused major controversies. HIV surveillance programs that re-use individuals’ routinely collected clinical HIV data do not require consent on the basis that the public benefit of these programs outweighs individuals’ rights to opt out. However, criticisms of MHS/CDR have questioned whether expanded uses of HIV genetic sequence data for prevention reach beyond traditional (...)
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  • Advancing a Data Justice Framework for Public Health Surveillance.Mara Buchbinder, Eric Juengst, Stuart Rennie, Colleen Blue & David L. Rosen - 2022 - AJOB Empirical Bioethics 13 (3):205-213.
    Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with 24 people living with HIV who had (...)
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