Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

Liza Dawson; Nanette Benbow; Faith E Fletcher; Seble Kassaye; Amy Killelea; Stephen R Latham; Lisa M Lee; Thomas Leitner; Susan J Little; Sanjay R Mehta; Omar Martinez; Brian Minalga; Art Poon; Stuart Rennie; Jeremy Sugarman; Patricia Sweeney; Lucia V Torian; Joel O Wertheim

doi:10.1093/infdis/jiaa107

Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

J Infect Dis. 2020 Nov 13;222(12):1997-2006. doi: 10.1093/infdis/jiaa107.

Authors

Liza Dawson¹, Nanette Benbow², Faith E Fletcher³, Seble Kassaye⁴, Amy Killelea⁵, Stephen R Latham⁶, Lisa M Lee⁷, Thomas Leitner⁸, Susan J Little⁹, Sanjay R Mehta⁹, Omar Martinez¹⁰, Brian Minalga¹¹, Art Poon¹², Stuart Rennie¹³, Jeremy Sugarman¹⁴, Patricia Sweeney¹⁵, Lucia V Torian¹⁶, Joel O Wertheim⁹

Affiliations

¹ Walter Reed Army Institute of Research, Silver Spring, Maryland, USA.
² Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA.
³ School of Public Health, University of Alabama at Birmingham, Birmingham, Alabama, USA.
⁴ Georgetown University Medical Center, Washington, District of Columbia, USA.
⁵ National Alliance of State and Territorial AIDS Directors, Washington, District of Columbia, USA.
⁶ Yale Interdisciplinary Center for Bioethics, New Haven, Connecticut, USA.
⁷ Virginia Tech, Blacksburg, Virginia, USA.
⁸ Los Alamos National Laboratory, Los Alamos, New Mexico, USA.
⁹ University of California at San Diego, San Diego, California, USA.
¹⁰ Temple University, Philadelphia, Pennsylvania, USA.
¹¹ Fred Hutchinson Cancer Research Center, Seattle, Washington, USA.
¹² University of Western Ontario, London, Ontario, Canada.
¹³ University of North Carolina, Chapel Hill, North Carolina, USA.
¹⁴ Johns Hopkins University, Baltimore, Maryland, USA.
¹⁵ Centers for Disease Control and Prevention, Atlanta, Georgia, USA.
¹⁶ 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.

Keywords: HIV/AIDS; ethics; phylogenetics; public health.

Published by Oxford University Press for the Infectious Diseases Society of America 2020.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Advisory Committees
Biomedical Research / ethics*
Community Participation
Computer Security / standards
Confidentiality / ethics
Confidentiality / legislation & jurisprudence
HIV / genetics*
HIV Infections / prevention & control*
HIV Infections / transmission
Humans
Information Dissemination / ethics
Information Dissemination / legislation & jurisprudence
National Institutes of Health (U.S.)
Phylogeny*
Public Health Surveillance
Research Design
United States / epidemiology

Abstract

Publication types

MeSH terms

Grants and funding