Community engagement is increasingly becoming an integral part of research. “Community-engaged research” (CEnR) introduces new stakeholders as well as unique challenges to the protection of participants and the integrity of the research process. We—a group of representatives of CTSA-funded institutions and others who share expertise in research ethics and CEnR—have identified gaps in the literature regarding (1) ethical issues unique to CEnR; (2) the particular instructional needs of academic investigators, community research partners, and IRB members; and (3) best practices for teaching research ethics. This paper presents what we know, as well as what we still need to learn, in order to develop quality research ethics educational materials tailored to the full range of stakeholder groups in CEnR.
Both general and ethical education may serve to guide policy and facilitate family member requests and informed consent dialogues. Furthermore, helping families to understand and accept not only medical and legal criteria for determining death, but also ethical criteria for withdrawing life support may help them be more comfortable with their decisions.
We analyzed 40 cases of falsification, fabrication, or plagiarism (FFP), comparing them to other types of wrongdoing in research (n = 40) and medicine (n = 40). Fifty-one variables were coded from an average of 29 news or investigative reports per case. Financial incentives, oversight failures, and seniority correlate significantly with more serious instances of FFP. However, most environmental variables were nearly absent from cases of FFP and none were more strongly present in cases of FFP than in other types of wrongdoing. Qualitative data suggest FFP involves thinking errors, poor coping with research pressures, and inadequate oversight. We offer recommendations for education, institutional investigations, policy, and further research.
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