A research ethics board (REB) is a body of researchers, community members and others that is established to review the ethical acceptability of research involving humans. Working within a defined regulatory and ethical framework, the REB’s role is to safeguard the rights and welfare of the individuals who volunteer to participate in research.
The composition of the REB and its collective expertise in ethical and scientific issues provide assurances that it can carry out its responsibilities effectively and independently. Each REB member has a specific role, bringing a variety of perspectives to the ethics review.
REBs also engage in complementary activities with the aims of improving the overall culture of research ethics, enhancing communication between researchers, research institutions and society, and raising awareness of ethical issues in research. For example, REBs may become involved in public dialogue about ethical issues or take on an educational role focused on research ethics policy and decision making.
Since January 2004, the Ontario Cancer Research Ethics Board (OCREB), a central, expert oncology REB, has been working with researchers, institutions and sponsors to safeguard the rights and welfare of research participants in Ontario while advancing ethically sound cancer research. OCREB’s membership is stellar and is gathered from around Ontario to provide both a variety expertise and perspectives. To meet the challenges of multi-centre oncology clinical trials, OCREB’s members include medical, surgical and radiation oncologists, advanced practice and clinical trial nurses, informed community members, individuals with cancer and family members of individuals with cancer and experts in epidemiology, bioethics, statistics, privacy, pharmacology and law.
OCREB currently is seeking individuals who are interested in serving as community members. This invitation is open to all individuals, although individuals with cancer and those who have experience as a research participant would be an asset. The community member’s role is essential in helping to broaden the perspectives of the REB. As someone who is not affiliated with the research institutions in which the research is conducted, the community member provides a unique viewpoint on the research proposals under review. Members who know what it is like to be a patient with cancer or a research participant offer a vital perspective to the REB review process.
Community members of research ethics committees play an important role in ethics review, helping to protect the interests of research participants and supporting health research by taking a balanced view of the likely harms and benefits of a research project by bringing a lay perspective, and ensuring that information for research participants is in a form which can easily be read and understood. In addition the role is essential:
- to ensure that the ethics review is represented by individuals in the community and that the process is just and focused on the welfare of research participants;
- to ensure openness and a measure of public accountability in decision making;
- to provide an effective counterbalance to the interests and values of the healthcare profession;
- to contribute to a better understanding of what it is like to be a patient/family member of a patient;
- to ensure that the research being carried out involves community members as active partners in the research process.
Some of the benefits brought by community members include improving consent forms by encouraging clear and accessible information, ensuring that there are appropriate recruitment practices, better engagement with the public, and wider dissemination of research results. Community members also ensure that the conduct of research is sensitive to the interests and concerns of participants and that their welfare is a priority when considering the burdens and the risks and benefits of participation.
Commitment
To maintain continuity and a diversity of experience and opinion, REB members may serve up to two terms (2 or 3 years per term). Meetings are held the 2nd Friday each month in downtown Toronto (MaRS building at College and University) beginning at 10:30 a.m. and ending around 2:30 p.m. Lunch is provided. OCREB covers appropriate expenses for travel to attend the meetings.
Regular members are expected to attend 75% of the meetings each year. Alternatively, members may share a regular REB member position reducing their time commitment. Members are provided with an honorarium on a biannual basis. OCREB members are covered for liability for errors and omissions in the course of OCREB duties under the Ontario Institute for Cancer Research (OICR) insurance plan
REBs may appoint substitute or alternate members to serve when the regular member is unable to attend. Substitute members are expected to attend a minimum of two meetings per year, as well as additional meetings in the absence of the regular member.
OCREB members receive documents for review via an online system, seven to ten days prior to the meeting. Members are expected to review the materials in advance and to take part in the discussion of the research at the meeting. When preparing for the meeting, one of the roles of the community member is to ensure that the participant materials, such as the consent form, reflect the design, documentation requirements, and the risks and benefits of the proposed research, in a manner that is readily understood by the research participant.
Training & Education
New members receive research ethics education in addition to an orientation to the REB and training in the ethics’ review processes, and the board’s policies and procedures. Training on the use of the online system also is provided. This training and education must be completed prior to engaging in the review process, along with the completion of the online tutorial in ethics, based on the Canadian Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Prior to an appointment to the REB, potential members are encouraged to observe an OCREB meeting.
Contact
If you have any questions or wish to discuss this opportunity, please call or e-mail Janet Manzo, Executive Director at 416-673-6636 or janet.manzo@oicr.on.ca. If you are interested in serving as a community member on OCREB, please email your CV to Janet Manzo.
References:
1. Guide for Research Ethics Committee Members: Steering Committee on Bioethics (2010)
2. Lay REC members: patient or public? Staley K. J Med Ethics 2013; 39:780-782