ArticleEHQUIDAD
Informed consent for HIV phylogenetic research: A case study of urban individuals living with HIV approached for enrollment in an HIV study.
Article in EHQUIDAD. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed.
- Ethical considerations and the social context of HIV phylogenetic research in uMkhanyakude district, KwaZulu-Natal, South Africa.Southern African journal of HIV medicine · 2026Article
- Action needed to address molecular HIV surveillance ethical concerns.Canadian journal of public health = Revue canadienne de sante publique · 2025Article
- Consent in the practice of molecular HIV epidemiology: A qualitative study of the perspectives of diverse communities of interest.PloS one · 2025Article
- Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel's Call for Major Reforms.The Milbank quarterly · 2023Article
- Integrating a web-based survey application into Qualtrics to collect risk location data for HIV prevention research.AIDS care · 2022Article
- Informed Consent in Molecular HIV Epidemiology: A Rapid Review of the Literature to Identify Concerns and Recommendations.Public health reports (Washington, D.C. : 1974)Review
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
introductionPhylogenetic analyses can provide insights on HIV tansmission dynamics. Country and state-level differences in HIV criminalization and disclosure laws and advances in next generation sequencing could impact perceived study risks.
methodsWe present study opt-out rates and the reasons provided during enrollment for a study conducted in Boston (6/2017-8/2018).
resultsOf 90 patients approached to participate, 45 did not consent to participate. Reasons for not participating included unwillingness to discuss their HIV status, privacy and confidentiality concerns, disinterest, and lack of time. CONLUSIONS: Given low participation rates and concerns related to HIV disclosure, privacy, and confidentiality, these questions remain (1) should informed consent be required for all phylogenetic analyses, including deidentified and surveillance data? (2) what additional steps can researchers take to protect the privacy of individuals, particularly in contexts where HIV is criminalized or there have been civil/criminal cases investigating HIV transmission? And (3) what role can community members play to minimize the potential risks, particularly for those most marginalized? These questions require input from both researchers and community members living with HIV/AIDS.
Indexed as
Identifiers
32954381PMC7497840What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.