Ethical issues in community-based participatory research: balancing rigorous research with community participation in community intervention studies

Abstract

Problem: Concerns have been raised that community participation might compromise scientific rigor in community-based participatory research (CBPR).

Purpose: The purpose of this paper is to identify potential sources of tension between the values of scientific rigor and community participation in CBPR.

Key points: CBPR lies at the nexus of two major underlying ethical concerns--respect for community autonomy and the fair allocation of limited public resources--which have generated considerable controversy about appropriate criteria for evaluating CBPR grant proposals. The complexity of evaluating CBPR proposals is compounded by the multiple purposes that it serves: (1) an ethical function of demonstrating respect for community autonomy; (2) a research method for eliciting ideas for interventions to improve population health; and (3) an intervention in itself, seeking to enhance the capacities of community participants.

Conclusions: Growing use of CBPR raises two new ethical issues that deserve greater public attention: first, the problem of securing informed consent and demonstrating respect for community autonomy when the locus of research shifts from the individual to community level; and second, fair distribution of scarce public resources when practical constraints make the most rigorous research designs for assessing the effects of community interventions virtually impossible. In light of recent federal initiatives, it is critical to achieve a common understanding of appropriate ethical and scientific standards for assessing the merits of CBPR.