NDLI: Prioritization of ethical concerns regarding HIV molecular epidemiology by public health practitioners and researchers

Content Provider	Springer Nature : BioMed Central
Author	Schuster, Anne L. R. Bollinger, Juli Geller, Gail Little, Susan J. Mehta, Sanjay R. Sanchez, Travis Sugarman, Jeremy Bridges, John F. P.
Abstract	Background HIV molecular epidemiology (HIV ME) can support the early detection of emerging clusters of new HIV infections by combining HIV sequence data routinely obtained during the clinical treatment of people living with HIV with behavioral, geographic, and sociodemographic information. While information about emerging clusters promises to facilitate HIV prevention and treatment efforts, the use of this data also raises several ethical concerns. We sought to assess how those working on the frontlines of HIV ME, specifically public health practitioners (PHPs) and researchers, prioritized these issues. Methods Ethical issues were identified through literature review, qualitative in-depth interviews, and stakeholder engagement. PHPs and researchers using HIV ME prioritized the issues using best–worst scaling (BWS). A balanced incomplete block design was used to generate 11 choice tasks each consisting of a sub-set of 5 ethical concerns. In each task, respondents were asked to assess the most and least concerning issue. Data were analyzed using conditional logit, with a Swait-Louviere test of poolability. Latent class analysis was then used to explore preference heterogeneity. Results In total, 57 respondents completed the BWS experiment May–June 2023 with the Swait-Louviere test indicating that researchers and PHPs could be pooled (p = 0.512). Latent class analysis identified two classes, those highlighting “Harms” (n = 29) (prioritizing concerns about potential risk of legal prosecution, individual harm, and group stigma) and those highlighting “Utility” (n = 28) (prioritizing concerns about limited evidence, resource allocation, non-disclosure of data use for HIV ME, and the potential to infer the directionality of HIV transmission). There were no differences in the characteristics of members across classes. Conclusions The ethical issues of HIV ME vary in importance among stakeholders, reflecting different perspectives on the potential impact and usefulness of the data. Knowing these differences exist can directly inform the focus of future deliberations about the policies and practices of HIV ME in the United States.
Related Links	https://bmcpublichealth.biomedcentral.com/counter/pdf/10.1186/s12889-024-18881-4.pdf
Ending Page	10
Page Count	10
Starting Page	1
File Format	HTM / HTML
ISSN	14712458
DOI	10.1186/s12889-024-18881-4
Journal	BMC Public Health
Issue Number	1
Volume Number	24
Language	English
Publisher	BioMed Central
Publisher Date	2024-05-29
Access Restriction	Open
Subject Keyword	Public Health Medicine Epidemiology Biostatistics Vaccine Environmental Health HIV surveillance Molecular epidemiology Public health surveillance Best–worst scaling Ethics Medicine/Public Health
Content Type	Text
Resource Type	Article
Subject	Public Health, Environmental and Occupational Health
Journal Impact Factor	3.5/2023
5-Year Journal Impact Factor	3.9/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

Using best-worst scaling to inform policy decisions in Africa: a literature review

Ethical issues in public health surveillance: a systematic qualitative review

Female sex workers perspectives and concerns regarding HIV self-testing: an exploratory study in Tanzania

Ethical challenges and moral distress among field epidemiologists

Preferences for health economics presentations among vaccine policymakers and researchers

Assessment of surveillance core and support functions regarding neglected tropical diseases in Kenya

Late presenters among persons with a new HIV diagnosis in Italy, 2010–2011

Comparing HIV prevalence estimates from prevention of mother-to-child HIV transmission programme and the antenatal HIV surveillance in Addis Ababa

Improving public health evaluation: a qualitative investigation of practitioners' needs

Prioritization of ethical concerns regarding HIV molecular epidemiology by public health practitioners and researchers

Similar Documents

Using best-worst scaling to inform policy decisions in Africa: a literature review

Ethical issues in public health surveillance: a systematic qualitative review

Female sex workers perspectives and concerns regarding HIV self-testing: an exploratory study in Tanzania

Ethical challenges and moral distress among field epidemiologists

Preferences for health economics presentations among vaccine policymakers and researchers

Assessment of surveillance core and support functions regarding neglected tropical diseases in Kenya

Late presenters among persons with a new HIV diagnosis in Italy, 2010–2011

Comparing HIV prevalence estimates from prevention of mother-to-child HIV transmission programme and the antenatal HIV surveillance in Addis Ababa

Improving public health evaluation: a qualitative investigation of practitioners' needs

Prioritization of ethical concerns regarding HIV molecular epidemiology by public health practitioners and researchers