Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

doi:10.1093/infdis/jiaa107

. 2020 Nov 13;222(12):1997-2006.

doi: 10.1093/infdis/jiaa107.

Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

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.

PMID: 32525980
PMCID: PMC7661760
DOI: 10.1093/infdis/jiaa107

Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

Liza Dawson et al. J Infect Dis. 2020.

. 2020 Nov 13;222(12):1997-2006.

doi: 10.1093/infdis/jiaa107.

Authors

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.

PMID: 32525980
PMCID: PMC7661760
DOI: 10.1093/infdis/jiaa107

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.

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Comment in

Human Immunodeficiency Virus Phylogenetics in the United States-and Elsewhere.
Lapointe HR, Harrigan PR. Lapointe HR, et al. J Infect Dis. 2020 Nov 13;222(12):1939-1940. doi: 10.1093/infdis/jiaa108. J Infect Dis. 2020. PMID: 32529243 No abstract available.

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Recommendations on data sharing in HIV drug resistance research.
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References

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[1] Ping LH, Jabara CB, Rodrigo AG, et al. HIV-1 transmission during early antiretroviral therapy: evaluation of two HIV-1 transmission events in the HPTN 052 prevention study. PLoS One 2013; 8:e71557. - PMC - PubMed

[2] Ping LH, Jabara CB, Rodrigo AG, et al. HIV-1 transmission during early antiretroviral therapy: evaluation of two HIV-1 transmission events in the HPTN 052 prevention study. PLoS One 2013; 8:e71557. - PMC - PubMed

[3] Peters PJ, Pontones P, Hoover KW, et al. ; Indiana HIV Outbreak Investigation Team HIV infection linked to injection use of oxymorphone in Indiana, 2014-2015. N Engl J Med 2016; 375:229–39. - PubMed

[4] Peters PJ, Pontones P, Hoover KW, et al. ; Indiana HIV Outbreak Investigation Team HIV infection linked to injection use of oxymorphone in Indiana, 2014-2015. N Engl J Med 2016; 375:229–39. - PubMed

[5] France AM, Oster AM. The promise and complexities of detecting and monitoring HIV transmission clusters. J Infect Dis 2020; 221:1223–5. - PubMed

[6] France AM, Oster AM. The promise and complexities of detecting and monitoring HIV transmission clusters. J Infect Dis 2020; 221:1223–5. - PubMed

[7] German D, Grabowski MK, Beyrer C. Enhanced use of phylogenetic data to inform public health approaches to HIV among men who have sex with men. Sex Health 2017; 14:89–96. - PMC - PubMed

[8] German D, Grabowski MK, Beyrer C. Enhanced use of phylogenetic data to inform public health approaches to HIV among men who have sex with men. Sex Health 2017; 14:89–96. - PMC - PubMed

[9] Oster AM, Wertheim JO, Hernandez AL, Ocfemia MC, Saduvala N, Hall HI. Using molecular HIV surveillance data to understand transmission between subpopulations in the United States. J Acquir Immune Defic Syndr 2015; 70:444–51. - PMC - PubMed

[10] Oster AM, Wertheim JO, Hernandez AL, Ocfemia MC, Saduvala N, Hall HI. Using molecular HIV surveillance data to understand transmission between subpopulations in the United States. J Acquir Immune Defic Syndr 2015; 70:444–51. - PMC - PubMed

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Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

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Addressing Ethical Challenges in US-Based HIV Phylogenetic Research

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