The ethics of community-based research with people who use drugs: results of a scoping review.

BACKGROUND: Drug user networks and community-based organizations advocate for greater, meaningful involvement of people with lived experience of drug use in research, programs and services, and policy initiatives. Community-based approaches to research provide an opportunity to engage people who use drugs in all stages of the research process. Conducting community-based participatory research (CBPR) with people who use drugs has its own ethical challenges that are not necessarily acknowledged or supported by institutional ethics review boards. We conducted a scoping review to identify ethical issues in CBPR with people who use drugs that were documented in peer-reviewed and grey literature. METHODS: The search strategy focused on three areas; community-based research, ethical issues, and drug use. Searches of five academic databases were conducted in addition to a grey literature search, hand-searching, and consultation with organizational partners and key stakeholders. Peer reviewed literature and community reports published in English between 1985 and 2013 were included, with initial screening conducted by two reviewers. RESULTS: The search strategy produced a total of 874 references. Twenty-five references met the inclusion criteria and were included in our thematic analysis. Five areas were identified as important to the ethics of CBPR with people who use drugs: 1) participant compensation, 2) drug user perspectives on CBPR, 3) peer recruitment and representation in CBPR, 4) capacity building, and 5) participation and inclusion in CBPR. CONCLUSIONS: We critically discuss implications of the emerging research in this field and provide suggestions for future research and practice.

Comparing Payments Between Sociobehavioral and Biomedical Studies in a Large Research University in Southern California.

Given the dearth of regulatory guidance and empirical research on practices of providing payments to research participants, our study aimed to examine whether there were significant differences in payment amounts between sociobehavioral and biomedical studies and to examine study factors that may explain payment differences. This study reviewed 100 sociobehavioral and 31 biomedical protocols. Results showed that both biomedical studies and sociobehavioral studies had a wide variation of payments and, on average, the biomedical studies paid significantly more. Additionally, more biomedical studies offered payment than sociobehavioral studies. The primary factors that explained differences in payment amounts between sociobehavioral and biomedical studies were the number of study visits, study time, participation type, risk level, and research method. These findings provide pilot data to help inform future ethical decision-making and guidance regarding payment practices.

Ethical Reflections on the Conduct of HIV Research with Community Members: A Case Study.

Some researchers continue to engage in "helicopter" or "parachute" research and do not ethically engage or collaborate with communities from which data are collected. This paper uses a case study to discuss the ethical issues arising from these research practices and the importance of increasing meaningful community involvement in research. Set in the context of research among older people living with HIV, the case study is followed by the perspectives of four research stakeholders. Through these perspectives, this paper demonstrates the ethical perils and harms that stem from research practices exemplified in the case. We argue instead for researchers to practice participatory research methods in line with community-based participatory research approaches (CBPR), good participatory practices (GPP), the Denver Principles, and CIOMS guidelines. Towards this end, we describe tools developed in collaboration with stakeholders in the research process to help researchers incorporate community participation and reduce unethical research conduct.

Factors Associated With Payments to Research Participants: A Review of Sociobehavioral Studies at a Large Southern California Research University.

Along with a dearth of regulatory guidance, little empirical research has examined factors related to participant payment in research. We conducted a cross-sectional study of 100 institutional review board (IRB)-approved sociobehavioral human subjects research protocols at a large research university in Southern California. The proportion of studies that paid participants differed significantly by type of research (p < .001) and study population (p = .009). The average payment amount also differed significantly by study population (p < .001) and type of participation (in-person vs. remote; p < .001). In addition, studies that required more visits (p < .001) and more time (p = .011) paid significantly more than studies with fewer and shorter visits, respectively. These findings provide data to help inform future ethical payment practices.