Minimizing Risks and Providing Benefits
The ethical conduct of CBPR research requires that risks and potential harms to individual research participants and the community as a whole be considered. Community members may be harmed by research findings, either because they internalize negative research results about their community or because data collected for one purpose are later used for another purpose without consent.6 Potential adverse effects of community-based research include labeling of individuals and community, stigmatization, discrimination, increased insurance rates, and loss of community income.7 The development of a community advisory board can help ensure that CBPR projects are sensitive to community concerns and that risks are minimized.
Healthy community advisory boards can serve several purposes, in addition to protecting the interests of potentially vulnerable populations who are involved in research projects. The Latino Family Advisory Board in Baltimore was developed in order to improve the experience of Spanish-speaking Latino families within the healthcare system at an urban health clinic with a high number of Latino patients.8 The Board participants were specifically recruited from the clinic population to represent people from different groups within the Spanish-speaking population. This included those with disabled children, those who had difficulty using the healthcare system, those who had a long relationship with the clinic, and those who were new patients. Given proper support and training, this board provided important recommendations regarding the design of a new emergency department, a community health assessment, and a research project designed to reduce childhood overweight.
Providing benefits is also important. In order for CBPR projects to be ethical, community needs and priorities must be seriously considered and there should be tangible community benefits.2 Both the process of doing the collaborative research and study outcomes can provide benefits, although not every CBPR project will have positive findings. The aim of CBPR research and evaluation projects is to contribute knowledge that leads to positive social change and the enhancement of community well-being.9 The latter includes the improvement of community health and reduction or elimination of health disparities. Community-based participatory research can empower communities to address the root causes of inequality and identify their own problems and appropriate solutions. Community-based participatory research has been shown to be helpful for addressing health disparities and inequities in communities that are socially disadvantaged, marginalized, stigmatized, or that have suffered historical injustices.10 However, it can be challenging to produce benefits for participating communities when project funds are insufficient for direct compensation or service