Ethics

Research Ethics Board

Generally, in Canada, research ethics boards are affiliated with universities and hospitals. If a researcher does not have this affiliation, it may be difficult to get ethical review of a study proposal. With the 1999 incorporation of the Community Based Research Centre Society (CBRC), the Board of Directors proposed the establishment of a Research Ethics Board (REB) affiliated with CBRC. This provides community researchers associated with CBRC access to an ethics process.

CBRC encourages researchers to participate in processes of peer review regarding ethical issues and strives to promote ethical conduct in community-based research (CBR).  The primary role of the Research Ethics Board (REB) is to provide ethical guidance and consultation to community-based researchers and research participants. The CBRC REB does not supervise or monitor research, nor does it prevent research from taking place. Given that many CBR projects are evolutionary in both design and implementation, the CBRC REB provides a forum for ongoing consultation and guidance in matters of research ethics.  This process can result in updated statements from the REB about the ethical probity of a project.

The founding Chair of the REB is Russel Ogden. The REB consists of a Chair and at least four other members and membership is consistent with the suggestions of the Tri-council policy. At least one member shall be drawn from the community involved in the research: for example, a person with HIV, or a young gay man.

CBR often involves a close partnership between the researcher and the community, narrowing the gap between researcher and subject. Community participants may have an active role in research in several ways, including:

  • Defining the research questions
  • Designing the research method
  • Carrying out the research
  • Data analysis
  • Evaluation of research findings and drawing conclusions

The participatory nature of CBR presents challenges to ethical review. For example, where community members are both researchers and research participants, the informed consent process may differ from the traditional administration of an informed consent form. Or for example, in self-experimentation, participants who are co-researchers may determine a novel informed consent approach. The task of the REB is to assess these on a case-by-case basis.

Researchers should be aware of the possibility that prospective community participants could feel coerced to participate by virtue of their community membership and community support for a research project that is anticipated to have direct benefits to the community. Additionally, the qualitative nature of CBR often introduces an ongoing process of research that requires revisions in methodology and measurement techniques. For example, questionnaires and interview protocols may be revised and therefore do not lend themselves to a one-time ethical review. Consequently, researchers and the REB need to be aware of ethical implications that arise from fluid, less regimented types of research. The REB should provide guidance in such situations to assist researchers in maintaining ethical conduct.

Principles for Ethical Conduct in Community-Based Research

The general principles for ethical conduct in research are outlined in the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (1998). The Tri-Council policy does not make direct reference to CBR, but it identifies common standards that form a useful guide for the ethical evaluation of research. The role of the CBRC ethics committee is to consider, case-by-case, how the Tri-Council policy applies in community-based research settings. The main principles to consider are:

  • Respect for human dignity
  • Respect for free and informed consent
  • Respect for vulnerable persons
  • Respect for privacy and confidentiality
  • Respect for justice and inclusiveness
  • Balancing harms and benefits
  • Minimizing harm
  • Maximizing benefit

Additionally, UNAIDS identifies HIV and AIDS related "ethical principles that should guide the international, national, community and individual response to HIV/AIDS." The application of these principles should also be considered for the purposes of ethical conduct in research:

  • Compassion
  • Solidarity
  • Responsibility
  • Tolerance
  • Information
  • Empowerment
  • Well-being/Beneficence
  • Equity/Distributive justice
  • Respect for persons
  • Confidentiality
  • Obligation to treat
  • Informed consent research requiring ethical review

The Community Based Research Centre seeks to foster a culture where researchers participate and collaborate in a process of ethical reflection that promotes awareness of ethics and maximizes ethical conduct in research. All CBRC researchers involving human subjects participate in REB review.