{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,22]],"date-time":"2026-09-22T23:05:15Z","timestamp":1790118315778,"version":"4.0.1"},"reference-count":46,"publisher":"Wiley","issue":"S1","license":[{"start":{"date-parts":[[2023,7,6]],"date-time":"2023-07-06T00:00:00Z","timestamp":1688601600000},"content-version":"vor","delay-in-days":5,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100000060","name":"National Institute of Allergy and Infectious Diseases","doi-asserted-by":"publisher","award":["R01AI127232"],"award-info":[{"award-number":["R01AI127232"]}],"id":[{"id":"10.13039\/100000060","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J Int AIDS Soc."],"published-print":{"date-parts":[[2023,7]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>The widespread implementation of molecular HIV surveillance (MHS) has resulted in an increased discussion about the ethical, human rights and public health implications of MHS. We narrate our process of pausing our research that uses data collected through MHS in response to these growing concerns and summarize the key lessons we learned through conversations with community members.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      The original study aimed to describe HIV transmission patterns by age and race\/ethnicity among men who have sex with men in King County, Washington, by applying probabilistic phylodynamic modelling methods to HIV\u20101\n                      <jats:italic>pol<\/jats:italic>\n                      gene sequences collected through MHS. In September 2020, we paused the publication of this research to conduct community engagement: we held two public\u2010facing online presentations, met with a national community coalition that included representatives of networks of people living with HIV, and invited two members of this coalition to provide feedback on our manuscript. During each of these meetings, we shared a brief presentation of our methods and findings and explicitly solicited feedback on the perceived public health benefit and potential harm of our analyses and results.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Some community concerns about MHS in public health practice also apply to research using MHS data, namely those related to informed consent, inference of transmission directionality and criminalization. Other critiques were specific to our research study and included feedback about the use of phylogenetic analyses to study assortativity by race\/ethnicity and the importance of considering the broader context of stigma and structural racism. We ultimately decided the potential harms of publishing our study\u2014perpetuating racialized stigma about men who have sex with men and eroding the trust between phylogenetics researchers and communities of people living with HIV\u2014outweighed the potential benefits.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>HIV phylogenetics research using data collected through MHS data is a powerful scientific technology with the potential to benefit and harm communities of people living with HIV. Addressing criminalization and including people living with HIV in decision\u2010making processes have the potential to meaningfully address community concerns and strengthen the ethical justification for using MHS data in both research and public health practice. We close with specific opportunities for action and advocacy by researchers.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/jia2.26111","type":"journal-article","created":{"date-parts":[[2023,7,6]],"date-time":"2023-07-06T03:12:52Z","timestamp":1688613172000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":17,"title":["Lessons learned from community engagement regarding phylodynamic research with molecular HIV surveillance data"],"prefix":"10.1002","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9238-9927","authenticated-orcid":false,"given":"Diana M.","family":"Tordoff","sequence":"first","affiliation":[{"name":"Department of Epidemiology University of Washington  Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian","family":"Minalga","sequence":"additional","affiliation":[{"name":"Fred Hutch, Office of HIV\/AIDS Network Coordination  Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alfredo","family":"Trejo","sequence":"additional","affiliation":[{"name":"Department of Political Science University of California Los Angeles  Los Angeles California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alic","family":"Shook","sequence":"additional","affiliation":[{"name":"Seattle University, College of Nursing  Seattle Washington USA"},{"name":"Seattle Children's Center for Pediatric Nursing Research  Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4416-4280","authenticated-orcid":false,"given":"Roxanne P.","family":"Kerani","sequence":"additional","affiliation":[{"name":"Department of Epidemiology University of Washington  Seattle Washington USA"},{"name":"Public Health \u2013 Seattle &amp; King County, HIV\/STD Program  Seattle Washington USA"},{"name":"Department of Medicine University of Washington  Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua T.","family":"Herbeck","sequence":"additional","affiliation":[{"name":"Department of Global Health University of Washington  Seattle Washington USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,7,6]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/QAI.0b013e318185727e"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/J.ANNEPIDEM.2019.02.010"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2019.1343"},{"key":"e_1_2_11_5_1","unstructured":"The Center for HIV Law & Policy.HIV criminalization in the United States: an overview of the variety and prevalence of laws used to prosecute and punish people living with HIV (PLHIV) in the US.2020."},{"key":"e_1_2_11_6_1","unstructured":"U.S. People Living with HIV Caucus.Open Letter to the CDC: Networks of People Living with HIV Demand a Moratorium on Molecular HIV Surveillance 2021. 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