Chapter 1. Part 4. The Ethics of Community Engaged Research

What to know

In this ethical framework, studies are understood to fall into two general categories: those that present minimal risk to participants, and those that may subject participants to more than minimal risk. Debates about the ethics of clinical research are not new, but community-engaged research (CEnR) raises additional questions and challenges.

Section Overview

Community engagement is about relationships between and among communities, researchers, and research institutions. What ethical code should we use to assess the conduct of those relationships? How should that code be monitored and enforced? Developing a comprehensive list of ethical questions for CEnR is challenging because the purpose, approach, and context for such research varies. Ethics for CEnR may be considered through traditional Institutional review boards (IRB). IRBs are required for all federally funded research that involves living people.

Other groups like, Yale's Community Alliance for Research and Engagement (CARE) Ethical Principles of Engagement Committee developed a set of principles. These principles may be used to guide ethical considerations.

Keep in mind‎

University Researchers should involve Community partners as early as possible in discussions about the potential uses of all data to be collected, including a dissemination plan for the sharing of the research findings with the wider [non-academic] Community, and should develop a process for handling findings that may reflect negatively and thus cause harm to one or both partners (CARE, 2009, p. 3).

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Agency for Toxic Substances and Disease Registry