Ethics Case Vignettes: Participant Perspectives on HIV/Drug Research
Existing federal research regulations and ethical standards often fall short when investigators apply them to the study of vulnerable populations and marginalized communities. One such population is illicit drug users who are living with or at high risk of acquiring HIV/AIDS. In response to this serious ethical concern, the aim of this National Institute on Drug Abuse (NIDA)-funded research project (R01 DA015649) was to give individuals who use drugs and who are positive or at high risk for HIV/AIDS a voice (through focus groups, individual interviews, and surveys) in how drug and HIV/AIDS research is conducted within their communities. In general, such ethical issues concern the risks and benefits of research recruitment and participation, how well informed participants are about the nature of their study and research rights, how confidential information will be protected and when it may be disclosed to others, and ethically appropriate and inappropriate ways of compensating individuals for their research participation. This research project (co-directed by Dr. Celia Fisher, Fordham University, and Dr. Merrill Singer, University of Connecticut) was conducted in collaboration with Housing Works, a New York City-based social service and advocacy group serving homeless individuals who are living with or at high risk for HIV/AIDS.
The following ethics case vignettes may be used to prompt discussion among communities on HIV/AIDS and drug abuse research.
Reference: Fisher, C. B., Oransky, M., Mahadevan, M., Singer, M., Mirhej, G., & Hodge, G. D. (2008). Marginalized populations and drug addiction research: Realism, mistrust, and misconception. IRB: Ethics & Human Research, 30(3), 1–9. PMID:18814439.
Reference: Oransky, M., Fisher, C. B., Mahadevan, M., & Singer, M. (2009). Barriers and opportunities for recruitment for non-intervention studies on HIV risk: Perspectives of street drug users. Substance Use & Misuse, 44, 1642–1659. PMI
Fisher, C. B., & Goodman, S. J. (2009). Goodness-of-fit ethics for non-intervention research involving dangerous and illegal behaviors. In D.Buchanan, C. B. Fisher, & L. Gable (Eds.), Research with high-risk populations: Balancing science, ethics, and law (pp. 25–46). Washington, DC: APA Books.