Reflections on ethical research

Nancy Walton, associate dean, student affairs, Yeates School of Graduate Studies and associate professor, Daphne Cockwell School of Nursing, has been appointed to the National Panel on Research Ethics (external link) .

The National Panel on Research Ethics addresses the evolving needs of Canada's three federal research agencies, CIHR (external link) , NSERC (external link) , and SSHRC (external link) , in promoting the ethics of research involving humans.

“The panel sits at the federal level to help promote and evolve ethical standards for research involving human participants, through interpretation of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (external link)  (TCPS). The TCPS is the federal overarching guideline on research ethics,” Walton explains. 

“One of the key roles of the panel is to take information, feedback, and input from the research community, consider what’s best, and implement and integrate it into the TCPS and interpretations,” she continues.

Research ethics boards (REBs) at universities, hospitals, and other institutions are guided by the TCPS when reviewing research projects involving humans and determining whether the projects adequately protect research participants, communities and the public.

“We know there have been lots of times – famous cases and anecdotal cases – in which  participants feel they haven’t been treated well, or they’ve been misunderstood, or the expectations of what’s happened to their data or personal information has not been made clear to them,” she says. “REBs help to put standards in place that make these cases fewer and farther between.”

Walton brings to the panel an expertise in research ethics review, policy and process; ethical and legal considerations in research on children and adolescents; as well as ethical concerns in the use of new mobile technologies in health care.

Her approach to research ethics review centers dialogue with key stakeholders, such as researchers, research participants and the public. “My priority, in former REB chair roles, has always been a collaborative one: to engage in discussion,’’ she says. “That’s part of what I appreciate about being on the panel – their focus on public consultation, on the feedback of stakeholders, and on community helping to guide how the TCPS evolves.” 

What are some of the issues and topics that REBs are grappling with across the country? Walton points to vulnerability in research, big data and AI, research in emergency situations like pandemics, and the ethical engagement of Indigenous peoples in research.

“We’re always concerned with people’s vulnerability when they are research participants, but we need to be very thoughtful about what makes people potentially vulnerable. It’s important not to assume that people are vulnerable simply because they belong to a particular group, without digging into it more, into the context of their lives.”

When it comes to research on big data and AI, there is often a debate among REBs as to whether or not these projects constitute research involving humans. “Is this research with humans?” Walton asks. “AI can involve huge amounts of data from individuals, and machine learning can involve these data being used in a particular way. People may not always be aware of the implications when providing their data. REBs will continue to think about and grapple with this.”

As for research that engages Indigenous peoples, Walton thinks there is still a lot more that needs to be done to ensure an ethical approach, and thinking through what that means. “In Canada, we’ve been looking for a number of years at different ways of approaching research with Indigenous people, and how to make sure there is respect for Indigenous values,  perspectives and worldviews.”

Ultimately, Walton believes that REBs are there to add value to research. “Sometimes they can suggest a different approach or alternative, something that might work better, while always keeping in mind that the researcher is the expert in their research,” she explains.

Walton is currently the ethicist and deputy chair of the Health Canada and Public Health Agency of Canada’s Research Ethics Board (REB). She has been appointed to the National Panel on Research Ethics for a three-year term.

She previously served as chair of the Ryerson University REB for nearly ten years and as chair of the Women's College Hospital REB for six years, until 2021. She is a founding member of the Ontario College of Art and Design University REB, and remains an ad hoc member of the Ryerson University REB. In 2016, she was the recipient of the Distinguished Service Award from the Canadian Association of Research Ethics Boards (CAREB).