摘要：While it is well understood that multiple and cumulative environmental stressors negatively impact health at the community level, existing ethical research review procedures are designed to protect individual research participants but not communities. Increasing concerns regarding the ethical conduct of research in general and environmental and genetic research in particular underscore the need to expand the scope of current human participant research regulations and ethical guidelines to include protections for communities. In an effort to address this issue, West Harlem Environmental Action (WE ACT), a nonprofit, community-based environmental justice organization in New York City that has been involved in community–academic partnerships for the past decade, used qualitative interview data to develop a pilot model for community review of environmental health science research. Research efforts to disentangle the wide array of complex and interacting factors that contribute to health disparities between minority and majority population subgroups have not been able to measurably reduce these differences. Adequate data on all segments of the population, especially those that suffer disproportionate levels of morbidity and mortality, are critical to understanding the effects of race, ethnicity, class, gender, culture, and environment on health. Yet, persistent challenges in the recruitment and retention of diverse groups of participants in biomedical and behavioral research prevent the science from moving forward. 1 Community-based participatory research (CBPR) has and can continue to transform the scientific landscape, reinvest marginalized communities in the research process, and improve public policy. 2 The objective of this approach is to engage communities as a whole and residents individually in biomedical and behavioral research at inception—from study design to implementation, oversight, result interpretation and dissemination of findings—and, in so doing, create a mutually beneficial research enterprise that incorporates the concerns, needs, and interests of the study community as well as of the researcher. 3 Over the past decade, the development of successful community academic partnerships between researchers, local community organizations, and residents have contributed to improved community health. 4 In principle, CBPR requires that the researcher and the community be equal partners in the quest for scientific knowledge. In fact, the role of “community-based entities” in most research remains largely advisory. 5 The ability of lay collaborators to shape the research agenda in an informed and comprehensive manner has been limited for a number of reasons, among them issues of lay capacity and training, reluctance on the part of some researchers to engage the community in internal decision making, minimal community involvement in the institutional research review process, and a scarcity of financial resources. 6 Increasing concerns regarding community consent to human participant research in general, and environmental and genetic research in particular, underscore the need to expand the scope of human participant research ethical guidelines to include statutory protections for communities. 7 Currently, academic centers employ a variety of informal methods to engage community organizations and residents in research, ranging from hiring university-based community liaisons, local community organizers, or community members as research staff, to convening community advisory boards (CABs), and partnering with community-based organizations. 8 The National Institute for Environmental Health Sciences (NIEHS) was the first branch of the National Institutes of Health to recognize the importance of using a CBPR approach. In 1993, NIEHS began to sponsor academic–community partnerships. 9 West Harlem Environmental Action (WE ACT), a nonprofit, community-based environmental justice organization in New York City was among the first recipients of NIEHS collaborative support. This article summarizes initial findings from the qualitative component of WE ACT's NIEHS-funded education and demonstration project on best practices for bolstering community protections in human-participants research through developing an effective community research review process. We begin with a brief history of environmental justice and health, and WE ACT's alliance with NIEHS. 10
