BackgroundDrug 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 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.MethodsThe 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.ResultsThe 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.ConclusionsWe critically discuss implications of the emerging research in this field and provide suggestions for future research and practice. (shrink)

Background: Genetic research involving racial/ethnic populations has novel ethical implications for various stakeholders, but ethical acceptability among stakeholders regarding such research is not clear. Methods: As part of a multifaceted National Institute of Mental Health (NIMH)/National Human Genome Research Institute (NHGRI) funded survey, we used repeated-measures factorial multivariate analysis of variance (MANOVA) to compare the perspectives of institutional review board (IRB) chairs (n = 203), investigators (n = 183), and community members (n = 192) on the ethical acceptability of participating (...) in and reporting of psychiatric genetic research focused on racial/ethnic minority groups. Stakeholder views were assessed with two sets of three questions. Results: All stakeholder groups perceived participation in genetic studies focused on racial/ethnic groups as ethically acceptable and endorsed as ethical any decisions by racial/ethnic minorities to decline to participate in such studies if concerned about possible discrimination/stigmatization based on the study findings. Stakeholders disagreed considerably on the ethical acceptability of researchers or journal editors choosing not to publish genetic study results focused on racial/ethnic minority groups based on potential harm of the study findings. Conclusion: Findings show community and professional stakeholders support participation in genetic research focused on specific racial/ethnic groups but recognize that the results of such studies may contribute to discrimination or stigmatization. Stakeholders differed in their perspectives of investigators and editors in balancing ethical issues intrinsic to advancing science versus minimizing harm to potentially vulnerable populations. (shrink)

Given that health systems research involves different aims, approaches, and methodologies as compared to more traditional clinical trials, the ethical issues present in HSR may be unique or particularly nuanced. This article outlines eight pertinent ethical issues that are particularly salient in HSR and argues that the ethical review process should be better tailored to ensure more efficient and appropriate oversight of HSR with adequate human protections, especially in low- and middle-income countries. The eight ethical areas we discuss include the (...) nature of intervention, types of research subjects, units of intervention and observation, informed consent, controls and comparisons, risk assessment, inclusion of vulnerable groups, and benefits of research. HSR involving human participants is necessary to ensure health systems strengthening and quality of care and to guide public policy intelligently. Health systems researchers must carefully define their intent and goals and openly clarify the values that may influence the premises and design of protocols. As new types of population-level research activities become more commonplace, it is critical that institutional review board and research ethics committee review processes evolve to evaluate these research protocols in ways that address the nuanced features of these studies. (shrink)

The history of research in American Indian/Alaska Native communities has been marked by unethical practices, resulting in mistrust and reluctance to participate in research. Harms are not l...

Background:Africa is increasingly becoming an important region for health research, mainly due to its heavy burden of disease, socioeconomic challenges, and inadequate health facilities. Regulatory...

Research ethics principles and regulations typically have been applied to the protection of individual human subjects. Yet, new paradigms of research that include the place-based community and cultural groups as partners or participants of environmental research interventions, in particular, require attention to place-based identities and geographical contexts. This paper argues the importance of respecting “place” within human subjects protections applied to communities and cultural groups as part of a critical need for research ethics and cultural competence training for graduate research (...) students. These protections and benefits are extensions of the Belmont Principles and have been included in recent recommendations from research regulatory committees. (shrink)