Discussion

The majority of CBPR research and evaluation projects lie within the domain of public health. Public health is primarily concerned with the health of the entire population, rather than the health of individuals, and emphasizes the promotion of health and the prevention of disease and disability and the collection of qualitative and quantitative health data.27,28 Public health also recognizes the multidimensional nature of health determinants and the complex interactions of biological, behavioral, social, and environmental factors in striving to develop effective interventions.27

The risks and potential harms of public health interventions include ineffective, counterproductive, or harmful interventions; unanticipated consequences; and labeling or stigmatizing of individuals and communities. Undue stress on the individual’s role in the cause of illness could lead to a “blame the victim” mentality. The dilemma is how to advise people that they might be at risk for potentially serious health complications without labeling them, contributing to their anxiety, or adversely affecting their well-being.

Ethical considerations for prevention trials and community interventions include an assessment of risks and benefits, the need for voluntary participation and avoidance of excessive incentives, and justice-related issues. There is a need for sensitivity to ethnic and cultural habits and norms and to avoid “top-down” planning, in which the health concerns and self-defined information needs of the target population are ignored in favor of professional preoccupations and concerns. Such concerns have been successfully addressed through CBPR. Ethical issues in health communication include the need to avoid conflicts of interest, to present facts about health hazards or health opportunities in a truthful, balanced, and timely fashion, and to avoid distorting the facts or concealing ambiguities in the scientific evidence.

The CBPR approach emphasizes colearning, the reciprocal transfer of expertise between community members and academic partners, and mutual ownership of research products.10 The process of colearning brings academic researchers and community members together and empowers community participants to increase control and self-ownership of their health and lives.29 Community members, organizational representatives, and academic researchers participate in and share control over all phases of the research process, including assessment, definition of the problem, selection of research methods, data collection, and analysis, interpretation, and dissemination of findings. The CBPR research paradigm represents a fundamental shift in academic researchers’ views of community residents, from patients and research subjects who may benefit from medical advances to essential partners who can help explain the social determinants of illness and energize their communities to develop effective, sustainable interventions to improve health and eliminate health disparities.30 Researchers have generally found these methods, which seek to empower communities and increase community benefits, lead to robust ethical research practices, even though important ethical challenges arise in CBPR related to community representation, distribution of resources and potential benefits, and dissemination of sensitive information.31

Building and sustaining trust is essential in all aspects of CBPR studies.32 Community members may distrust researchers from outside organizations because of a history of racism, marginalization of minority communities by healthcare systems, or earlier experiences of researchers entering communities, collecting data, and leaving without providing any direct benefits or even informing residents of the results of the research.30

Some authors have argued that the ethical principles identified in the landmark Belmont Report, “Ethical Principles and Guidelines for the Protection of Human Subjects of Research” (respect for persons, beneficence, and justice), do not provide a comprehensive guide to research ethics in CBPR.2-33 Respect for persons requires that an individual’s decision to become a research participant must be voluntary and that special protections are afforded for those who lack the capacity to make such decisions. Beneficence requires researchers to do no harm (which is often listed separately as a principle of nonmaleficence) and to minimize risks and potential harms to human subjects while providing benefits. The principle of justice, in its various forms, requires researchers to pay attention to the fair or equitable distribution of risks and benefits. Persons who bear the risks of research should be among the first to benefit from the information gained from the research. Community-based participatory research and community- engaged research are consistent with a broader conception of justice that includes social justice.34 Malone et al.35 proposed expanding the number of ethical principles outlined in the Belmont Report by adding a principle of respect for communities. Whereas IRB requirements and regulations for the protection of human subjects generally focus on research participants as individuals, CBPR views research participants as both individuals and as part of a community of individu- als.33 When writing the Belmont Report and helping to craft United States federal regulations, the National Commission did not anticipate that translational research would be conducted with the active engagement of individuals and com- munities.36 Although groups or communities are not human subjects under the United States federal regulations governing research, academic and community partnerships must address these issues as part of comprehensive protection for human subjects. Ross et al.37 provided a helpful framework for considering risks in community-engaged research including risks due either to the research process or its outcomes. They also distinguished between established communities (groups that have their own organization structure and leadership outside of the research) and unstructured groups that exist because of a shared trait but do not have a defined leadership).37 Risks to individual members of a group can occur whether or not a particular individual actually participates in the research.38 Despite continued advances in clarifying the ethics of CBPR, there remains a need for additional conceptual work to develop a comprehensive framework for ensuring research integrity in CBPR.2

 
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