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J Empir Res Hum Res Ethics. 2019 Feb;14(1):61-77. doi: 10.1177/1556264618809608. Epub 2018 Nov 28.

Experts' Perspectives on Key Ethical Issues Associated With HIV Phylogenetics as Applied in HIV Transmission Dynamics Research.

Author information

1
1 University of KwaZulu-Natal, South Africa.
2
2 KwaZulu-Natal Research Innovation and Sequencing Platform (KRISP), College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa.
3
3 Centre for the AIDS Programme of Research in South Africa, Durban, South Africa.

Abstract

The use of phylogenetics in HIV molecular epidemiology has considerably increased our ability to understand the origin, spread, and characteristics of HIV epidemics. Despite its potential to advance knowledge on HIV transmission dynamics, the ethical issues associated with HIV molecular epidemiology have received minimal attention. In-depth interviews were conducted with scientists from diverse backgrounds to explore their perspectives on ethical issues associated with phylogenetic analysis of HIV genetic data as applied to HIV transmission dynamics studies. The Emanuel framework was used as the analytical framework. Favorable risk-benefit ratio and informed consent were the most invoked ethical principles and fair participant selection the least. Fear of loss of privacy and disclosure of HIV transmission were invariably cited as key ethical concerns. As HIV sequence data become increasingly available, comprehensive guidelines should be developed to guide its access, sharing and use, cognizant of the potential harms that may result.

KEYWORDS:

HIV phylogenetics; and burdens of research/beneficence and non-maleficence; benefits; data sharing; in-depth interviews; informed consent; molecular epidemiology; people with HIV/AIDS; privacy/confidentiality; qualitative methods; risks

PMID:
30486713
DOI:
10.1177/1556264618809608

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