Health research has relied on ethical principles, such as those of the Belmont Report, to protect the rights and well-being of research participants. Community-based participatory research (CBPR), however, must also consider the rights and well-being of communities. This requires additional ethical considerations that have been extensively discussed but not synthesized in the CBPR literature. We conducted a comprehensive thematic literature review and summarized empirically grounded discussions of ethics in CBPR, with a focus on the value of the Belmont principles in CBPR, additional essential components of ethical CBPR, the ethical challenges CBPR practitioners face, and strategies to ensure that CBPR meets ethical standards. Our study provides a foundation for developing a working definition and a conceptual model of ethical CBPR. ETHICS, DEFINED AS “NORMS for conduct that distinguish between acceptable and unacceptable behavior,” play a vital role in research. 1 Clinical and health services researchers rely on ethical principles and practices to ensure that they treat research participants fairly and balance research risks and benefits. Research misconduct, such as abuse of human participants in biomedical experiments, led to the development of ethical standards that guide the oversight of research protocols. 2 The Belmont Report, 3 which established the gold standard definition of biomedical research ethics, delineated 3 ethical principles to protect the rights and well-being of individual research participants. First, individual autonomy–respect for persons purports that “individuals should be treated as autonomous agents” 3 and that they should be given sufficient information about the study and should independently decide whether they want to participate. 4 Second, beneficence and nonmaleficence require researchers to maximize benefits and minimize harm to research participants and ensure individuals’ well-being by demanding that researchers carefully consider the risk–benefit ratio of participation. 5,6 Finally, justice, or the fairness principle, requires that researchers equitably distribute the risks and benefits associated with research across society. 5,7 In public health, however, researchers focus on the well-being of communities, which creates new ethical dilemmas. 8,9 Among the ethical issues commonly debated in public health are whether the infringement of individual liberties may be considered a morally legitimate cost of improving community health and whether evidence-based approaches to care that may be culturally problematic should nonetheless be implemented. The principles and practices of community-based participatory research (CBPR) provide a powerful approach for engaging community members in developing and evaluating strategies for improving health. CBPR promotes trust and shared power and decision-making between researchers and community representatives, 2-way capacity building, and mutually beneficial cocreation and dissemination of study findings. 10–14 Indeed, CBPR practitioners have questioned the relevance and comprehensiveness of the Belmont principles when applied to the novel ethical situations they confront, including the desire to protect not only individual research participants but also communities and populations. 15,16 Some have even proposed reconceptualizing the Belmont principles. 17 These practitioners have initiated a conversation about the ethical principles and practices that should guide CBPR, which highlights the need for greater attention to matching research goals to community needs and preferences and establishing community-based review boards. 18–20 Others have gone further by describing CBPR as an ethical response to past misconduct and arguing that institutional review boards (IRBs) should incorporate some of the lessons of CBPR into the oversight of traditional biomedical research. 21,22 Because CBPR ethics are an important and much-debated topic, a definition of and a framework for ensuring ethical CBPR are needed. As a first step toward these goals, we summarized the growing literature on ethics in CBPR by conducting a comprehensive thematic literature review 23 structured around 4 questions: How do CBPR researchers understand the meaning of the Belmont principles in partnered projects? What principles that go beyond the ones described in the Belmont Report characterize ethical CBPR? What ethical challenges do CBPR practitioners face when conducting research in close collaboration with community partners? How can research integrity be ensured in CBPR? Our review identified commonly used principles of ethical CBPR and may serve as groundwork for developing a comprehensive conceptual model for conducting ethical CBPR.
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