247924 Community-Based Processes for Research Ethics Review: Findings from a National Study

Tuesday, November 1, 2011: 11:15 AM

Elaine Drew, PhD , Department of Family and Community Medicine, Medical College of Wisconsin, Milwaukee, WI
Nancy Shore, PhD , School of Social Work, University of New England, Portland, ME
Ruta Brazauskas, PhD , Department of Biostatistics, Medical College of Wisconsin, Milwaukee, WI
Sarena D. Seifer, MD , Community Campus Partnerships for Health, Seattle, WA
As partners in the research process, a growing number of community groups are implementing review processes for research ethics that operate independently, in parallel or in conjunction with institution-based institutional review boards (IRBs). With the exception of federally recognized community IRBs, these are not mandated or regulated.

With support from the Greenwall Foundation, we conducted the first systematic study of community-based processes for research ethics review. We identified and described 109 operating and 30 emerging community-based processes for research ethics review in the U.S and found a number of reasons for their development, including (a) enhancing community protections in research by assuring that community considerations be taken into account, (b) assuring community ownership of the review process; and (c) responding to dissatisfaction with institution-based IRB processes. The reported benefits of having a review process included assuring that the research conducted within one's community is relevant and feasible, as well as assuring community benefit and minimizing risks. The process itself was also seen as allowing greater community voice in determining which studies should be conducted, as well as creating opportunities for building capacity. Thus, the process was perceived as helping to strengthen community support for and trust in research, as well as increase research rigor and quality.

This presentation will highlight findings from the study and describe possible scenarios for a research ethics review system that includes both community-based and institution-based review mechanisms.

Learning Areas:
Ethics, professional and legal requirements
Public health or related laws, regulations, standards, or guidelines
Public health or related organizational policy, standards, or other guidelines
Public health or related research
Social and behavioral sciences
Systems thinking models (conceptual and theoretical models), applications related to public health

Learning Objectives:
Explain three reasons why community organizations are establishing community-based processes for research ethics review Compare the criteria used by community organizations to assess research proposals with the criteria used by institution-based Institutional Review Boards Describe the pros and cons of three scenarios for a system of research ethics review that includes both community-based and institution-based review mechanisms

Keywords: Research Ethics, Community Research

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I was a co-investigator on the study being presented and am now a principal investigator on our subsequent studies.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.