CKX: Do No Harm - The ethical challenges of community-based research

Editor's Notes

• #4: All Canadian institutions that conduct research and receive funding from the Tri-Council agencies (SSHRC, NSERC, CIHR). These three agencies have made it mandatory for research to undergo ethical review through a Research Ethics Board. Major institutions such as universities, hospitals have their own institutional REB to conduct ethical reviews of research projects. The 3 major government agencies have developed the Tri-Council Policy which establishes and outlines ethical norms that are meant to guide Canadian researchers in the conduct of research involving humans. According to the TCPS, all research that the three agencies fund that involve living human subjects requires ethics review and approval by a Research Ethics Board (REB) before the research commences. The research design, contingencies for data collection and storage, methods for ensuring participant confidentiality and anonymity are all part of a review. The ethical review process is not designed to hinder, prevent, or police the conduct of research. It is designed to help researchers think about the ethical implications of their research on the lives of their human subjects. Research in Canada is increasingly being conducted outside of academia through NGO’s, government organizations, independent consultants, and community organizations. This research is not mandated for ethical review, because it is not funded by the Tri-council agencies. Ethical support and ethical review processes are lacking for community-based research.
• #5: In 2008, community representatives in the Waterloo Region identified the need for a community-accessible ethics review board for community-based research. The Centre for Community Based Research, located in Kitchener, conducted a needs assessment and feasibility study in the region, collecting data from 74 community members. In 2010, a community forum was held to use the findings to develop a feasible approach for improving ethical review and access to support for research being conducted in the community. The forum generated four suggestions: An accessible consultation service for support and education pertaining to community research A formal review process for community-based research projects Ongoing training and workshops pertaining to community research and ethics An online resource base The steering committee submitted a grant application to the Ontario Trillium Foundation to support the implementation of CREO. Implemented in 2011 and funded by the Ontario Trillium Foundation for the first 3 years, CREO responds to the needs of community researchers to access an ethical support and review process
• #7: (handout principles chart and highlight briefly)
• #8: We conduct reviews of proposed research projects to determine if the projects are ethically sound We offer one-on-one consultations about ethical conduct of research We provide training and workshops on the ethical conduct of community-based research Our website operates as a network in which community researchers can contribute to and access resources. Questions about CREO?
• #10: Involves the community at all research stages – questions may be posed by the community or by the researcher but affected communities are engaged early in the process – refining the research questions; designing the research process; may involve community participant researchers, usually includes some sort of community steering committee including partnerships among nfps, institutions, government, funders, affected individuals Usually involves desire for action toward change – i.e., there is a community development component. This is not research that is done primarily to only move knowledge forward on an issue or to lead to further research (although it may). The researcher is often also a facilitator or may engage external facilitator, especially in complex partnerships May relate to existing services/programs or operations – evaluation research which involves human participants is still research and needs to consider the ethics of the processes, relationships, tools, etc. involved in all aspects of the research Results ownership shared between researchers and the community. Who owns the research results is sometimes an important issue since there may be interest on both the part of the community and the researcher to use those results with different agendas (the researcher may feel the research is not complete enough and needs more research while the community just wants to move forward on making change).
• #11: There may be any number of other ethical challenges and dilemmas faced by both the community and the researchers involved in CBR. Lets look first at a few challenges: Researchers may not be cognizant of ethical considerations: Voluntariness – Undue influence (e.g., public health unit wanting to do research with new mothers related to breast feeding – may feel coerced because they fear losing services if they refuse to participate) Confidentiality – Use of Focus Groups (you can never guarantee that all focus group participants will maintain confidentiality – how to overcome this??) Informed consent – how much is too much – list the kinds of things participants need to know in information/consent forms Handout? Consideration of effects on communities not just on individuals – note that TCPS2 has much to say about this related to Aboriginal/First Nations/Indigenous communities but not others. Discuss current proposed changes related to this.
• #12: Uniqueness of qualitative research – e.g., observation Poor methodology may have ethical implications - e.g., in evaluation research of a pilot project running training workshops. Research dethics cannot evaluate the ethics of the workshops so there must be clear separation in applicants documentation. Considering treatment of researchers as well as research participants in participatory action research model – especially important in participant action research where researchers are themselves part of the community on which the research is based. Lack of research ethics training for community based researchers – NFP staff, consultants, etc. may have degrees even at the doctorate level but may not have any idea how to apply ethical principles to their research. Even more difficult where those undertaking the research do not have a lot of research experience either. This goes back to the first point on this slide.
• #13: Facilitate discussion on their examples or present an example to get discussion started.