Abstract
BackgroundMuch 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.DiscussionThis 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.SummaryWe 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.
Highlights
Much attention has been devoted to ethical issues related to randomized controlled trials for HIV treatment and prevention
Couples research raises important questions: What are researchers' obligations to disclose information about HIV risk when HIV risk is a central component of study selection and eligibility? How much information should be provided to potential recruits about their risk as part of the informed consent process? How do researchers balance the rights of each individual within a couple, and study validity, in the informed consent process?
This paper focuses on ethical dilemmas that arise when injection drug users (IDUs) are recruited into behavioral research on HIV that will involve their sexual partners
Summary
The Estonian Study The study discussed here, a joint project of Estonian and US researchers, took place in 2007 following Institutional Review Board approval for the study granted by both US and Estonian institutions. Even if the sex partners were not informed of the IDU status of the index participants during the recruitment process, all participants received state-of-the art education about behavioral risk factors and harm reduction techniques, which should minimize their risk of transmission Another argument is that providing additional risk information does not necessarily enhance the study participant's protection. Studies of HIV transmission that include diverse risk groups and follow the transmission risk to multiple sex http://www.biomedcentral.com/1472-6939/10/14 partners may benefit from rapid tests and real time data processing to provide appropriate information about disease risk to recruited individuals. Without these technologies, general statements related to risk of HIV can be made to all participants. LAM and EJG drafted the manuscript based on these discussions and AU edited the manuscript in an iterative process
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