To ensure ethical integrity is maintained in research activities, Canadian Blood Services’ independent Research Ethics Board (REB) reviews all research applications involving human participants that are intended to be conducted by, or on behalf of, Canadian Blood Services.
We joined Heather Sampson, the new Chair of the Canadian Blood Services Research Ethics Board (REB), in conversation about her experience with research ethics and what she looks forward to in this role.
When I was young, I would spend Saturday mornings at my local library reading the medical journal, The Lancet enabling my innate curiosity. Then, I became a Registered Nurse and completed a Bachelor’s degree in medical history and healthcare economics. That led me to my first memorable connection to blood.
It happened when I was working in emergency at the Hospital for Sick Kids (SickKids) and a 7-year-old came in following an accident. They had sustained life threatening injuries, and we didn’t have enough blood for them. At the time, we were focused on what we could do to get this child back, so we put a call over the intercom looking for blood (this was prior to the Inquiry into the Blood System in Canada from 1993-1997 by Justice Horace Krever that led to the creation of Canadian Blood Services). We had people lining up in the hallways to donate blood for this patient and, with the help of these blood donors, we were able to treat this patient successfully.
I transitioned from working in emergency, critical care and high-risk obstetrics to clinical research, adding epidemiology, research methodology and research ethics to my education. Eventually, the Chief of Obstetrics at Mount Sinai Hospital suggested formally adding ethics to my education and, at their encouragement, I applied for my Master's degree in Health Science in ethics. When the interviewer asked me what I wanted to do with this degree I said, “with this education, I hope to be prepared to be considered for a research ethics board chair position.” I was accepted and subsequently invited to complete a University of Toronto Fellowship in ethics which further prepared me for leadership roles in research ethics.
“Two questions I always had with research ethics were: (1) how do we as REB members learn the outcomes from research studies, but most importantly (2) how do the participants find out?”
When I looked at the posting for this role, I saw many intersections with work I'd done in the past, my education, and with my background. Now that I am in the Canadian Blood Services REB Chair position, I feel very fortunate on many levels; such as working with people who have a professional bond of collegiality and commitment to research and research ethics excellence. I knew this was a well-established REB when I joined, which was different from my first Chair experience establishing an REB with Toronto Public Health in 2014.
It’s a delightful coincidence that my predecessors on the Canadian Blood Services REB are three people who have been my mentors and whom I’ve written papers with: Dr. Francis Rolston, Tim Caulfield, and Dr. Michael McDonald. They have set incredibly high standards for me to follow!
What excites me is that moment when I open a new research protocol and I start looking at what they want to do and why. That's where experienced REB members really need to use their expertise to work through the enthusiasm and the passion of the researcher, take a deep breath and ask: what are the possible risks, what are the possible outcomes, and is this a good idea from the clinicians and donors/patients/participants perspectives?
It’s part of the REB responsibility to look at not just the participant effect but also the wider population effect of research and the equity, fairness, inclusion and engagement aspects to make sure that people are aware of risks, and there’s no coercion or undue influence to participate.
I also really look forward to the Canadian Blood Services study closure notifications, to learn what the researchers' journey has been and how the outcomes are projected to affect our donors, participants and future research endeavours.
I think making sure that all stakeholders are well educated on genomics will be important—including clarifying the difference between genomes and genetic testing—along with the impact and opportunities for artificial intelligence currently and going forward, and engaging clinicians in Canadian Blood Services research endeavours to understand the potential impact of the research and outcomes on their clinical care regimes.
There are other ideas, too, like asking whether there are research areas donors are curious about and learning how research participants want to hear the results of research they have contributed to. I think there’s opportunity for more end-of-research lay summaries, and more connection up front to ask participants “what might this mean to you?”. It’s about making research simpler, more accessible, more mobile and giving people choices.
“There's a lot of opportunity here at Canadian Blood Services that isn’t in a lot of institutions because there are donors, products, and research all under one roof. It’s a research dream and Canada is fortunate to have this opportunity. It’s exciting for me to be part of this journey.”
Research and donation are like the chicken and the egg: the research can’t happen without donors, and the donor eligibility criteria we have is evidence-based practice that comes from research. Ultimately, we want donors to be informed about research and their participation in Canadian Blood Services research because they’re part of what makes transfusions and other life-saving practices possible.
Canadian Blood Services – Driving world-class innovation
Through discovery, development and applied research, Canadian Blood Services drives world-class innovation in blood transfusion, cellular therapy and transplantation—bringing clarity and insight to an increasingly complex healthcare future. Our dedicated research team and extended network of partners engage in exploratory and applied research to create new knowledge, inform and enhance best practices, contribute to the development of new services and technologies, and build capacity through training and collaboration. Find out more about our research impact.
The opinions reflected in this post are those of the author and do not necessarily reflect the opinions of Canadian Blood Services nor do they reflect the views of Health Canada or any other funding agency.