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Preventable disparities between AI/ANs and Whites in maternal and infant health status persist.

The practicality and moral value of community review of human genetic research has become a focus of debate. Examples from two Native American communities are used to address four aspects of that debate: (1) the value of community review in larger, geographically dispersed populations; (2) the identification of culturally specific risks; (3) the potential conflict between individual and group assessments of research-related risks; and (4) the confusion of social categories with biological categories. Our experiences working with these two communities suggest that: (1) successful community review may require the involvement of private social units (e.g., families); (2) culturally specific implications of genetic research may be identifiable only by community members and are of valid concern in their moral universes; (3) community concerns can be incorporated into existing review mechanisms without necessarily giving communities the power to veto research proposals; and (4) the conflation of social and biological categories presents recruitment problems for genetic studies. These conclusions argue for the use of community review to identify and minimize research-related risks posed by genetic studies. Community review also can assist in facilitating participant recruitment and retention, as well as in developing partnerships between researchers and communities.

PURPOSEThe increasing attention paid to community-based research highlights the question of whether human research protections focused on the individual are adequate to safeguard communities. We conducted a study to explore how community members perceive low-risk health research, the adequacy of human research protection processes, and the ethical conduct of community-based research.METHODS Eighteen focus groups were conducted among rural and urban Hispanic and Native American communities in New Mexico using a semistructured guide. Group transcriptions were analyzed using iterative readings and coding, with review of the analytic summary by group members.RESULTS Although participants recognized the value of health research, many also identifi ed several adverse effects of research in their communities, including social (community and individual labeling, stigmatization, and discrimination) and economic (community job losses, increased insurance rates, and loss of community income). A lack of community benefi cence was emphasized by participants who spoke of researchers who fail to communicate results adequately or assist with follow-through. Many group members did not believe current human research and data privacy processes were adequate to protect or assist communities.CONCLUSIONS Ethical review of community-based health research should apply the Belmont principles to communities. Researchers should adopt additional approaches to community-based research by engaging communities as active partners throughout the research process, focusing on community priorities, and taking extra precautions to assure individual and community privacy. Plans for meaningful dissemination of results to communities should be part of the research design. Ann Fam Med 2010;8:433-439. doi:10.1370/afm.1138. INTRODUCTIONC onverging organizational, conceptual, and funding developments during the last decade have raised the profi le of health and medical research conducted in communities. At the same time, the number of practice-based research networks, organizations that specifi cally undertake research in primary care and community settings, has grown rapidly. [1][2][3][4][5] With these developments, there has been increasing interest in the concept of community-based participatory research, whereby community members have more involvement in all stages of the research process. 6,7 More recently, the National Institutes of Health's Clinical and Translational Science Awards program has included explicit expectations for community engagement in research and for development of research that can directly benefi t communities. E T HIC S OF HE A LT H R ESE A RCH IN COMMUNIT IESThis growing interest in conducting research that directly or indirectly involves communities raises a concern about the adequacy of research protections. Human research protections established and expanded during the last 60 years have centered on the rights and safety of the individual in the research process. Indeed, the 3 principles of The Belmont Report (re...