Addressing ethical challenges in US-based HIV phylogenetic research.,The Journal of Infectious Diseases

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Addressing ethical challenges in US-based HIV phylogenetic research.
The Journal of Infectious Diseases ( IF 5.0 ) Pub Date : 2020-06-11 , DOI: 10.1093/infdis/jiaa107
Liza Dawson ₁ , Nanette Benbow ₂ , Faith E Fletcher ₃ , Seble Kassaye ₄ , Amy Killelea ₅ , Stephen R Latham ₆ , Lisa M Lee ₇ , Thomas Leitner ₈ , Susan J Little ₉ , Sanjay R Mehta ₉ , Omar Martinez ₁₀ , Brian Minalga ₁₁ , Art Poon ₁₂ , Stuart Rennie ₁₃ , Jeremy Sugarman ₁₄ , Patricia Sweeney ₁₅ , Lucia V Torian ₁₆ , Joel O Wertheim ₉

Affiliation

Walter Reed Army Institute of Research, Silver Spring, Maryland, USA.
Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA.
School of Public Health, University of Alabama at Birmingham, Birmingham, Alabama, USA.
Georgetown University Medical Center, Washington, District of Columbia, USA.
National Alliance of State and Territorial AIDS Directors, Washington, District of Columbia, USA.
Yale Interdisciplinary Center for Bioethics, New Haven, Connecticut, USA.
Virginia Tech, Blacksburg, Virginia, USA.
Los Alamos National Laboratory, Los Alamos, New Mexico, USA.
University of California at San Diego, San Diego, California, USA.
Temple University, Philadelphia, Pennsylvania, USA.
Fred Hutchinson Cancer Research Center, Seattle, Washington, USA.
University of Western Ontario, London, Ontario, Canada.
University of North Carolina, Chapel Hill, North Carolina, USA.
Johns Hopkins University, Baltimore, Maryland, USA.
Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
New York City Department of Health, New York, New York, USA.

Abstract

In recent years, phylogenetic analysis of HIV sequence data has been used in research studies to investigate transmission patterns between individuals and groups, including analysis of data from HIV prevention clinical trials, in molecular epidemiology, and in public health surveillance programs. Phylogenetic analysis can provide valuable information to inform HIV prevention efforts, but it also has risks, including stigma and marginalization of groups, or potential identification of HIV transmission between individuals. In response to these concerns, an interdisciplinary working group was assembled to address ethical challenges in US-based HIV phylogenetic research. The working group developed recommendations regarding (1) study design; (2) data security, access, and sharing; (3) legal issues; (4) community engagement; and (5) communication and dissemination. The working group also identified areas for future research and scholarship to promote ethical conduct of HIV phylogenetic research.

中文翻译：

解决美国艾滋病毒系统发育研究中的伦理挑战。

抽象的

近年来，HIV 序列数据的系统发育分析已被用于研究中，以调查个体和群体之间的传播模式，包括对 HIV 预防临床试验、分子流行病学和公共卫生监测项目的数据进行分析。系统发育分析可以为艾滋病毒预防工作提供有价值的信息，但它也存在风险，包括群体的耻辱和边缘化，或可能识别个体之间的艾滋病毒传播。为了回应这些担忧，成立了一个跨学科工作组来解决美国艾滋病毒系统发育研究中的伦理挑战。工作组就以下方面提出了建议：(1) 研究设计； (2) 数据安全、访问和共享；（三）法律问题； (4) 社区参与； (5)沟通与传播。工作组还确定了未来研究和学术领域，以促进艾滋病毒系统发育研究的道德行为。

更新日期：2020-11-13

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