Debate

Informed recruitment in partner studies of HIV transmission: an ethical issue in couples research

Louise-Anne McNutt^1,2 , Elisa J Gordon³ and Anneli Uusküla⁴

¹Department of Epidemiology and Biostatistics, University at Albany, State University of New York, Rensselaer, NY, USA

²School of Public Health, Tbilisi State Medical University, Tbilisi, Georgia

³Institute for Healthcare Studies, Division of Organ Transplantation, Department of Surgery, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

⁴Department of Public Health, University of Tartu, Ravila Tartu, Estonia

author email corresponding author email

BMC Medical Ethics 2009, 10:14doi:10.1186/1472-6939-10-14

Published:	27 August 2009

Abstract

Background

Much attention has been devoted to ethical issues related to randomized controlled trials for HIV treatment and prevention. However, there has been less discussion of ethical issues surrounding families involved in observational studies of HIV transmission. This paper describes the process of ethical deliberation about how best to obtain informed consent from sex partners of injection drug users (IDUs) tested for HIV, within a recent HIV study in Eastern Europe. The study aimed to assess the amount of HIV serodiscordance among IDUs and their sexual partners, identify barriers to harm reduction, and explore ways to optimize intervention programs. Including IDUs, either HIV-positive or at high risk for HIV, and their sexual partners would help to gain a more complete understanding of barriers to and opportunities for intervention.

Discussion

This paper focuses on the ethical dilemma regarding informed recruitment: whether researchers should disclose to sexual partners of IDUs that they were recruited because their partner injects drugs (i.e., their heightened risk for HIV). Disclosing risks to partners upholds the ethical value of respect for persons through informed consent. However, disclosure compromises the IDU's confidentiality, and potentially, the scientific validity of the research. Following a brief literature review, we summarize the researchers' systematic evaluation of this issue from ethical, scientific, and logistical perspectives. While the cultural context may be somewhat unique to Eastern Europe and Central Asia, the issues raised and solutions proposed here inform epidemiological research designs and their underlying ethical tensions.

Summary

We present ethical arguments in favor of disclosure, discuss how cultural context shapes the ethical issues, and recommend refinement of guidance for couples research of communicable diseases to assist investigators encountering these ethical issues in the future.