Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice
- PMID: 32945756
- DOI: 10.1080/15265161.2020.1806373
Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice
Abstract
In the United States, clinical HIV data reported to surveillance systems operated by jurisdictional departments of public health are re-used for epidemiology and prevention. In 2018, all jurisdictions began using HIV genetic sequence data from clinical drug resistance tests to identify people living with HIV in "clusters" of others with genetically similar strains. This is called "molecular HIV surveillance" (MHS). In 2019, "cluster detection and response" (CDR) programs that re-use MHS data became the "fourth pillar" of the national HIV strategy. Public health re-uses of HIV data are done without consent and are a source of concern among stakeholders. This article presents three cases that illuminate bioethical challenges associated with re-uses of clinical HIV data for public health. We focus on evidence-base, risk-benefit ratio, determining directionality of HIV transmission, consent, and ethical re-use. The conclusion offers strategies for "HIV data justice." The essay contributes to a "bioethics of the oppressed."
Keywords: Public health; confidentiality & privacy; genetic research; health policy; human subjects research; informed consent.
Comment in
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HIV Molecular Epidemiology: Tool of Oppression or Empowerment?Am J Bioeth. 2020 Oct;20(10):44-47. doi: 10.1080/15265161.2020.1806392. Am J Bioeth. 2020. PMID: 32945759 Free PMC article. No abstract available.
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Fourth Pillar or "Third Rail?:" Towards a Community-Centered Understanding of the Role of Molecular HIV Surveillance in Ending the HIV Epidemic in the United States.Am J Bioeth. 2020 Oct;20(10):5-6. doi: 10.1080/15265161.2020.1812266. Am J Bioeth. 2020. PMID: 33016820 No abstract available.
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Conceptualizing a Bioethics of the Oppressed: Oppression, Structure, and Inclusion.Am J Bioeth. 2020 Oct;20(10):42-44. doi: 10.1080/15265161.2020.1806386. Am J Bioeth. 2020. PMID: 33016821 No abstract available.
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Ethical Convergence and Ethical Possibilities: The Implications of New Materialism for Understanding the Molecular Turn in HIV, the Response to COVID-19, and the Future of Bioethics.Am J Bioeth. 2020 Oct;20(10):26-29. doi: 10.1080/15265161.2020.1806400. Am J Bioeth. 2020. PMID: 33016822 No abstract available.
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Benefit of HIV Molecular Surveillance is Unclear, but Risks to Prevention Norms Are Clear.Am J Bioeth. 2020 Oct;20(10):47-49. doi: 10.1080/15265161.2020.1806388. Am J Bioeth. 2020. PMID: 33016824 No abstract available.
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Wise Use of Surveillance Data: Evolving HIV Policy and Emerging Considerations Regarding COVID-19.Am J Bioeth. 2020 Oct;20(10):36-39. doi: 10.1080/15265161.2020.1806384. Am J Bioeth. 2020. PMID: 33016828 No abstract available.
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Advancing Data Justice in Public Health and Beyond.Am J Bioeth. 2020 Oct;20(10):32-33. doi: 10.1080/15265161.2020.1806945. Am J Bioeth. 2020. PMID: 33016829 No abstract available.
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Furthering Discussion of Ethical Implementation of HIV Cluster Detection and Response.Am J Bioeth. 2020 Oct;20(10):24-26. doi: 10.1080/15265161.2020.1806398. Am J Bioeth. 2020. PMID: 33016830 Free PMC article. No abstract available.
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What is a Bioethics of the Oppressed in the Age of COVID-19?Am J Bioeth. 2020 Oct;20(10):29-31. doi: 10.1080/15265161.2020.1806397. Am J Bioeth. 2020. PMID: 33016831 No abstract available.
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Adding a Voice to the Unique Ethical Considerations in Molecular HIV Surveillance.Am J Bioeth. 2020 Oct;20(10):34-36. doi: 10.1080/15265161.2020.1806399. Am J Bioeth. 2020. PMID: 33016832 No abstract available.
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Molecular HIV Surveillance and Public Health Ethics: Old Wine in New Bottles.Am J Bioeth. 2020 Oct;20(10):39-41. doi: 10.1080/15265161.2020.1806393. Am J Bioeth. 2020. PMID: 33016834 No abstract available.
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