{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,18]],"date-time":"2026-06-18T10:14:14Z","timestamp":1781777654400,"version":"3.54.5"},"reference-count":29,"publisher":"Public Library of Science (PLoS)","issue":"10","license":[{"start":{"date-parts":[[2025,10,6]],"date-time":"2025-10-06T00:00:00Z","timestamp":1759708800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["R01Al135970"],"award-info":[{"award-number":["R01Al135970"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS One"],"abstract":"<jats:sec id=\"sec001\">\n<jats:title>Background<\/jats:title>\n<jats:p>The practice of using molecular HIV epidemiology (MHE) to enhance surveillance activities has generated much discussion, partly because it typically involves sequencing viral samples from persons living with HIV without their knowledge or consent.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec002\">\n<jats:title>Methods<\/jats:title>\n<jats:p>Using individual, semi-structured in-depth interviews, we asked 41 individuals from a range of groups affected and\/or involved in MHE and related health services in North Carolina their views about consent and MHE.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec003\">\n<jats:title>Findings<\/jats:title>\n<jats:p>Although there was no unanimity of opinion, our interview participants were largely (82.5%) supportive using MHE for public health surveillance without obtaining consent, including those living with HIV, though there was also broad support across groups for raising public awareness about MHE. The reasons against consent for MHE included: consent is not traditionally solicited or required in other medical or public health surveillance activities; consent for MHE could deter people from getting tested or entering care; refusals could diminish the accuracy and utility of MHE data due to the resulting evidence gaps; and consent is impractical when there is an urgent need for data during disease outbreaks. Reasons in favor of consent included: a sample is something personal for which it is appropriate to ask permission for its use; failure to ask for consent is an unjustified curtailment of personal rights; people should be able to choose what information related to themselves that they share or do not share with others. There were also mixed responses, where the appropriateness of asking for consent depended on certain conditions.<\/jats:p>\n<\/jats:sec>\n<jats:sec id=\"sec004\">\n<jats:title>Conclusion<\/jats:title>\n<jats:p>These study findings reveal some support among communities of interest for the current approach to consent along with a need for greater community awareness of MHE, and contribute to the ongoing policy conversation about whether the current practice of not obtaining consent for MHE and HIV surveillance purposes should be revisited.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0330733","type":"journal-article","created":{"date-parts":[[2025,10,6]],"date-time":"2025-10-06T17:26:11Z","timestamp":1759771571000},"page":"e0330733","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":2,"title":["Consent in the practice of molecular HIV epidemiology: A qualitative study of the perspectives of diverse communities of interest"],"prefix":"10.1371","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3844-972X","authenticated-orcid":true,"given":"S.","family":"Rennie","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"U.","family":"Onyeama","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K.","family":"Sullivan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"Day","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0687-9661","authenticated-orcid":true,"given":"A.","family":"Dennis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2025,10,6]]},"reference":[{"issue":"5","key":"pone.0330733.ref001","doi-asserted-by":"crossref","DOI":"10.1016\/S2352-3018(16)30012-1","article-title":"Translating phylogeny into action for HIV surveillance","volume":"3","author":"JL Gardy","year":"2016","journal-title":"Lancet HIV"},{"issue":"9","key":"pone.0330733.ref002","doi-asserted-by":"crossref","first-page":"844","DOI":"10.1001\/jama.2019.1343","article-title":"Ending the HIV Epidemic: A Plan for the United States","volume":"321","author":"AS Fauci","year":"2019","journal-title":"JAMA"},{"issue":"1","key":"pone.0330733.ref003","doi-asserted-by":"crossref","DOI":"10.1057\/s41599-020-0522-4","article-title":"The ethical and epistemological pitfalls of translating phylogenetic HIV testing: from patient-centered care to surveillance","volume":"7","author":"T Sandset","year":"2020","journal-title":"Humanit Soc Sci Commun"},{"issue":"10","key":"pone.0330733.ref004","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1080\/15265161.2020.1806373","article-title":"Reassessing the Ethics of Molecular HIV Surveillance in the Era of Cluster Detection and Response: Toward HIV Data Justice","volume":"20","author":"S Molldrem","year":"2020","journal-title":"Am J Bioeth"},{"issue":"10","key":"pone.0330733.ref005","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1080\/15265161.2020.1809550","article-title":"We Are People, Not Clusters!","volume":"20","author":"EJ Bernard","year":"2020","journal-title":"Am J Bioeth"},{"key":"pone.0330733.ref006"},{"issue":"10","key":"pone.0330733.ref007","doi-asserted-by":"crossref","first-page":"44","DOI":"10.1080\/15265161.2020.1806392","article-title":"HIV Molecular Epidemiology: Tool of Oppression or Empowerment?","volume":"20","author":"S Rennie","year":"2020","journal-title":"Am J Bioeth"},{"issue":"10","key":"pone.0330733.ref008","doi-asserted-by":"crossref","first-page":"39","DOI":"10.1080\/15265161.2020.1806393","article-title":"Molecular HIV Surveillance and Public Health Ethics: Old Wine in New Bottles","volume":"20","author":"L Dawson","year":"2020","journal-title":"Am J Bioeth"},{"issue":"4","key":"pone.0330733.ref009","doi-asserted-by":"crossref","first-page":"1033","DOI":"10.1111\/1468-0009.12663","article-title":"Advancing Dialogue About Consent and Molecular HIV Surveillance in the United States: Four Proposals Following a Federal Advisory Panel\u2019s Call for Major Reforms","volume":"101","author":"S Molldrem","year":"2023","journal-title":"Milbank Q"},{"issue":"14","key":"pone.0330733.ref010","doi-asserted-by":"crossref","first-page":"129","DOI":"10.15257\/ehquidad.2020.0015","article-title":"Informed consent for HIV phylogenetic research: A case study of urban individuals living with HIV approached for enrollment in an HIV study","volume":"2020","author":"AE Rudolph","year":"2020","journal-title":"EHQUIDAD"},{"issue":"1","key":"pone.0330733.ref011","doi-asserted-by":"crossref","first-page":"61","DOI":"10.1177\/1556264618809608","article-title":"Experts\u2019 Perspectives on Key Ethical Issues Associated With HIV Phylogenetics as Applied in HIV Transmission Dynamics Research","volume":"14","author":"F Mutenherwa","year":"2019","journal-title":"J Empir Res Hum Res Ethics"},{"key":"pone.0330733.ref012","article-title":"Lessons learned from community engagement regarding phylodynamic research with molecular HIV surveillance data","author":"DM Tordoff","year":"2023","journal-title":"J Int AIDS Soc"},{"issue":"3","key":"pone.0330733.ref013","doi-asserted-by":"crossref","first-page":"992","DOI":"10.4081\/jphr.2017.992","article-title":"Perceptions of molecular epidemiology studies of HIV among stakeholders","volume":"6","author":"C Schairer","year":"2017","journal-title":"J Public Health Res"},{"issue":"3","key":"pone.0330733.ref014","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1080\/23294515.2019.1601648","article-title":"Trust and Expectations of Researchers and Public Health Departments for the Use of HIV Molecular Epidemiology","volume":"10","author":"CE Schairer","year":"2019","journal-title":"AJOB Empir Bioeth"},{"issue":"2","key":"pone.0330733.ref015","doi-asserted-by":"crossref","first-page":"87","DOI":"10.1097\/QAI.0000000000003179","article-title":"Brief Report: Challenges in Obtaining the Informed Perspectives of Stakeholders Regarding HIV Molecular Epidemiology","volume":"93","author":"JM Bollinger","year":"2023","journal-title":"J Acquir Immune Defic Syndr"},{"issue":"1","key":"pone.0330733.ref016","doi-asserted-by":"crossref","first-page":"66","DOI":"10.1080\/23294515.2023.2262967","article-title":"Toward Consent in Molecular HIV Surveillance?: Perspectives of Critical Stakeholders","volume":"15","author":"S Molldrem","year":"2024","journal-title":"AJOB Empir Bioeth"},{"key":"pone.0330733.ref017","unstructured":"Kaiser Family Foundation. The HIV\/AIDS Epidemic in the United States: The Basics. August 16, 2024. https:\/\/www.kff.org\/hivaids\/fact-sheet\/the-hiv-aids-epidemic-in-the-united-states-the-basics\/"},{"issue":"9","key":"pone.0330733.ref018","doi-asserted-by":"crossref","first-page":"1245","DOI":"10.1097\/ACM.0000000000000388","article-title":"Standards for reporting qualitative research: a synthesis of recommendations","volume":"89","author":"BC O\u2019Brien","year":"2014","journal-title":"Acad Med"},{"key":"pone.0330733.ref019","doi-asserted-by":"crossref","first-page":"482","DOI":"10.1186\/1471-2458-13-482","article-title":"Modified social ecological model: a tool to guide the assessment of the risks and risk contexts of HIV epidemics","volume":"13","author":"S Baral","year":"2013","journal-title":"BMC Public Health"},{"key":"pone.0330733.ref020","volume-title":"Qualitative inquiry and research design: Choosing among five approaches","author":"JW Creswell","year":"2007","edition":"2"},{"issue":"9","key":"pone.0330733.ref021","doi-asserted-by":"crossref","first-page":"1277","DOI":"10.1177\/1049732305276687","article-title":"Three approaches to qualitative content analysis","volume":"15","author":"H-F Hsieh","year":"2005","journal-title":"Qual Health Res"},{"issue":"1","key":"pone.0330733.ref022","doi-asserted-by":"crossref","first-page":"1436","DOI":"10.1186\/s12889-024-18881-4","article-title":"Prioritization of ethical concerns regarding HIV molecular epidemiology by public health practitioners and researchers","volume":"24","author":"ALR Schuster","year":"2024","journal-title":"BMC Public Health"},{"issue":"10","key":"pone.0330733.ref023","doi-asserted-by":"crossref","first-page":"47","DOI":"10.1080\/15265161.2020.1806388","article-title":"Benefit of HIV Molecular Surveillance is Unclear, but Risks to Prevention Norms Are Clear","volume":"20","author":"B Haire","year":"2020","journal-title":"Am J Bioeth"},{"key":"pone.0330733.ref024","author":"A Sadeghi","year":"2023"},{"key":"pone.0330733.ref025","unstructured":"Ferguson E. On this National Black HIV\/AIDS Awareness Day, we must resist surveillance technology like MHS. 2024. https:\/\/prismreports.org\/2024\/02\/06\/we-must-resist-surveillance-technology-hiv\/"},{"key":"pone.0330733.ref026","unstructured":"The Center for HIV Law and Policy. Is Molecular HIV surveillance worth the risk? 2019. https:\/\/www.hivlawandpolicy.org\/sites\/default\/files\/CHLP%20Molecular%20Surveillance%20Final.pdf"},{"key":"pone.0330733.ref027","unstructured":"The Center for HIV Law and Policy. How to talk about molecular HIV surveillance. 2019. https:\/\/www.hivlawandpolicy.org\/resources\/how-talk-about-molecular-hiv-surveillance-chlp-pwn-us-plhiv-caucus-2023"},{"key":"pone.0330733.ref028","unstructured":"HIV Justice Worldwide. Molecular HIV Surveillance: A Global Review of Human Rights Implications. 2021. https:\/\/www.hivjusticeworldwide.org\/wp-content\/uploads\/2021\/10\/HJWW-MHS-Paper-English-Final.pdf"},{"issue":"2","key":"pone.0330733.ref029","article-title":"The Meaningful Involvement of People with HIV\/AIDS (MIPA): The Participatory Praxis Approach to Community Engagement on HIV Surveillance","volume":"14","author":"A Spieldenner","year":"2022","journal-title":"JCES"}],"container-title":["PLOS One"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0330733","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,6]],"date-time":"2025-10-06T17:26:14Z","timestamp":1759771574000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0330733"}},"subtitle":[],"editor":[{"given":"Ayi Vandi","family":"Kwaghe","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2025,10,6]]},"references-count":29,"journal-issue":{"issue":"10","published-online":{"date-parts":[[2025,10,6]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0330733","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,10,6]]}}}