Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

Author:

Dawson Liza1ORCID,Benbow Nanette2,Fletcher Faith E3,Kassaye Seble4,Killelea Amy5,Latham Stephen R6,Lee Lisa M7,Leitner Thomas8,Little Susan J9,Mehta Sanjay R9ORCID,Martinez Omar10,Minalga Brian11,Poon Art12ORCID,Rennie Stuart13,Sugarman Jeremy14,Sweeney Patricia15,Torian Lucia V16,Wertheim Joel O9

Affiliation:

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

AbstractIn 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.

Funder

National Institutes of Health

National Institute of Allergy and Infectious Diseases

Publisher

Oxford University Press (OUP)

Subject

Infectious Diseases,Immunology and Allergy

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