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Protecting participants: Why your voice belongs on research ethics boards

Imagine living with a health condition and being invited to take part in a research study that could change the future of treatment for you and countless others.

Would you fully understand what you are agreeing to? Would the risks be clearly explained? Would you feel pressured to participate, or confident in your rights? These questions sit at the heart of research ethics, and they are exactly why community members play a critical role on research ethics boards.

Across Manitoba, hundreds of research studies each year are reviewed for ethical and privacy concerns, before research can begin. These reviews are not carried out only by scientists or health system professionals. They also rely on everyday Manitobans who bring lived experience, and public accountability into the process. For many health research projects, these reviews are carried out by committee members of the Manitoba provincial research ethics board called CHIPER (Committee for Harmonized Health Impact, Privacy and Ethics Reviews).

Community members ensure that research is examined not only through technical and scientific standards, but also through the lens of the patients, participants, and impacted communities. Their presence helps safeguard dignity, privacy and informed consent, strengthening public trust in the research system.

The need for independent community oversight is rooted in history. In Canada and around the world, historical research practices may have caused harm by failing to protect participants’ safety, autonomy and rights. These lessons shaped today’s ethics review system, which helps identify potential harm before it occurs. Community representation is now considered essential to ethical oversight, ensuring decisions reflect public values.

Although every ethics board member carefully considers participant’s safety and welfare in their reviews, community members provide a focused, independent voice dedicated solely to protecting the interests of research participants.

Community members often help to identify practical questions. Is the consent form written in plain language? Are risks explained clearly? Does the recruitment process place pressure on vulnerable populations? Could participation feel confusing or intimidating?

One of the most common contributions community members make is improving participant-facing materials, asking for changes to consent forms, information sheets and recruitment advertisements if they are overly technical, unclear or difficult to understand. Community reviewers help ensure people can make informed decisions without feeling rushed or misled.

You do not need formal research training to become a community member! Strong communication, empathy, attention to detail and lived experience navigating the health system are essential skills for the role. Many community members have participated in clinical trials, supported family members through medical care, or worked in advocacy and service roles. These perspectives strengthen ethical review by grounding decisions in lived reality.

Serving on a research ethics board such as CHIPER is also personally rewarding. Members gain insight into how health research works, contribute to the public good and help protect future participants. Training and mentorship are provided, and many community members report that the experience builds confidence and transferable skills that benefit their professional and personal lives.

Despite the importance of these roles, many ethics boards struggle to recruit community representatives. A 2023 national survey found that nearly half of research ethics boards reported difficulty recruiting community members. This challenge is often linked to limited public awareness and concerns about time commitment.

In Manitoba, CHIPER meets only once per month and assignments are manageable. Many community members balance this role alongside other full-time responsibilities. In addition, all meetings are held virtually, allowing participants from across the province to contribute, and reviews are fully conducted through an online software system.

Another challenge is ensuring diversity among community representatives. Ethics boards benefit when voices reflect Manitoba’s varied communities, cultures and experiences. People from rural areas, newcomers, Indigenous communities, caregivers and former research participants all bring perspectives that strengthen ethical decision-making.

Manitoba-based potential community reviewers are invited to apply to serve on CHIPER, which has both biomedical and health-focused reviews for institutions across Manitoba. By participating, community members help ensure that human research conducted in the province remains ethical, transparent and participant-centred.

The voice of a community member is not symbolic. It carries real influence in shaping safer study designs, clearer communication and stronger participant protections. By serving on a research ethics board, Manitobans can help neighbours, family members and future patients who rely on ethical research to improve health care.

For more information about becoming a community member reviewer, contact info@researchmb.ca or visit rithim.ca.