Community-based research ethics review: reflections on experience and recommendations for action.

I. Introduction Research participants, researchers, and organizations that fund research share an interest in ensuring that the research meets high ethical standards. When community-based research (CBR) projects are developed, a number of significant questions emerge for all of those involved in the research about how to achieve such standards. Some of these questions are: how do community groups deal with the issue of confidentiality? How do they deal with the issue of liability? Is there any type of system in place which protects the participants? Do community groups feel that a formal ethics review process is an important component of research? Are existing review processes available to, and appropriate for, ethics review of this type of research? The absence of clear answers to such questions suggests a need to further explore the area of CBR ethics review. In response to a recognition of this need, the Canadian Research Institute for the Advancement of Women (CRIAW), the Dalhousie University Health Law Institute and the Maritime Centre of Excellence for Women's Health (MCEWH) sponsored a three-part knowledge-generating initiative on CBR ethics review. (1) The initiative was also motivated by the fact that some community-based researchers had expressed concerns about the ethics review process required by the MCEWH for research it funds. We wanted to find out what their concerns were and whether there were alternative approaches the MCEWH could take. The purpose of this paper is to provide a description of this initiative and a summary of its findings. First, we provide a description of CBR as well as our project and its goals. Then we describe the methodology and provide an overview of the results. Finally, we offer some reflections on the study findings and recommendations for future action. (2) II. Community-Based Research For the purposes of this paper, community-based research is defined as research where there is no formal link with an institution such as a hospital or university. Although there are many exceptions to the rule, it is generally fair to assume that CBR differs from institutional research in a number of ways. Perhaps the most important difference is that it is rarely an individual venture. CBR stems from a need identified by a group of people living and working at the community level, and is conducted with the guidance of an advisory group who are people close to the research problem. (3) It is practical in nature: community-based research is not conducted for the sake of knowledge, but rather for the purposes of finding a practical solution to the identified need. A qualitative methodology is most frequently used, and, because the grants they are working on are likely to be under $50,000, the research often includes small samples. The groups involved are usually small non-profit organizations with annual budge ts under a million dollars, so the research is conducted with fewer resources available to the researchers than to institutional researchers. They do not have available to them the support staff, office equipment, or expertise that academics take for granted. (4) III. Project Description In the first phase of the research project, we interviewed a group of female community-based researchers in Atlantic Canada in an attempt to determine the prevailing attitudes and practices with respect to research ethics review. In the second phase, we surveyed the Chairs of all of the research ethics boards (REBs) in the local Halifax Regional Municipality to determine current practices respecting review of CBR and to solicit ideas about whether and how such practices could be improved. In the third phase, we brought together a group of experienced community-based researchers to explore the need for, and best means to facilitate, ethical CBR. IV. Methodology Phase one involved conducting telephone interviews with community-based researchers from the provinces of Nova Scotia, New Brunswick, Prince Edward Island, and Newfoundland. …

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