Thank you very much, Madam Chair.
Good morning, committee members. Thank you for the invitation to speak with you.
Federal research funding plays a critical role in sustaining Canada's science, technology, innovation and research enterprise, in building our nation and in positioning Canada on the world stage. Hopefully, we all agree that research funding is intended to be awarded to research initiatives that have the greatest potential to expand human knowledge, increase our understanding of the world, our society and the intersection between the two and/or have significant potential for benefit.
I am a scientist, a researcher, an accessibility and inclusion strategist, and thought leader, with a perspective rooted in lived, living and professional experience. I'm a geneticist, with expertise in genomics, experimental therapeutics, diagnostics, population data science and public health research, and have led research on the accessibility of higher education and employment, the accessibility of STEM, research and research training, and organizational and systemic cultures of accessibility and inclusion.
Today, I serve as chief operating and chief scientific officer of IDEA-STEM, an organization dedicated to inclusion and participation of persons with disabilities in STEM and health care education, research and careers.
I want to reframe the discourse on the importance of inclusion, diversity, equity and accessibility in science and research.
Imagine for a moment the life-saving medical device that isn't certified safe for use by millions of Canadians because the scientists developing it did not know enough to make a survey that was accessible to persons with disabilities. Imagine a study with potential to greatly influence policy on aging in place, yet, because of its structure, the community intended to benefit cannot participate. Imagine a harmful genetic variant in a cancer patient that goes misclassified because we do not collect essential data about the patient, or because the reference population dataset reflects the wrong ethnic or geographic segment of humanity. Imagine a study to assess the impact of COVID-19 on employment experiences, but we can't learn about disabled workers because nobody asked the disability screening question.
These are not hypothetical scenarios, nor are they rare. Over the course of my career, I have encountered each of them in some form, and all could have been avoided.
A research grant application lays out the research questions, rationale, potential for benefit, hypotheses, approaches, methods and anticipated outcomes. Thought is given to contingencies, limitations, sources of bias and potential next steps. Each component is itself a part of the research life cycle. Proposals involving human research participants are reviewed by research award panels and research ethics committees, which is a crucial step in the check and balance of identifying excellence in research and in determining which research avenues to fund.
But what if I told you that those real-life scenarios that I described passed through ethics and funding review and were approved? That tells me there were failure modes at multiple points in the research life cycle in those projects that were not identified by researchers or ethics or funding panels. Likeliest is that all parties did not know what they did not know and didn't think to ask anybody who might be able to assist, or someone raised the possibility of limitations in project scope because of these failure modes and they were voted down.
Application of inclusion, diversity, equity and accessibility principles throughout the research life cycle by way of asking rational, reflective questions about these failure modes would have avoided each of those scenarios that I described. Having diverse lived experiences, perspectives and ways of thought on the team and an environment where those voices are heard and cultivated would have done that as well. Having diverse perspectives in funding panels and ethics committees would have done that as well..
Perhaps, then, research excellence isn't just about novelty and innovation of the idea and approach. It's also about how well these approaches are executed and how much they anticipate and counter sources of bias, and about the complement of skills, characteristics and perspectives brought to the table. Perhaps asking about equity, diversity and inclusion plans in research proposals actually is not effective, because this isn't about EDI. It's about how we do the best, highest-quality and most rigorous research. Equity is central to excellence, and inclusive science is simply better science.
Therefore, we need to mandate inclusive research design in research endeavours, facilitating identification and minimization of bias, and re-engineer our research evaluation frameworks to ensure that we are adequately assessing for inclusive research design. We need to embed ethical and societal impact training and inclusive research training in our undergraduate and graduate curricula, invest in intentional pathway programs to strengthen the research ecosystem, and rigorously audit EDI initiatives to ensure that they are positioned to foster research excellence.
I emphasize again that equity and excellence are not in conflict; they are mutually reinforcing. I urge this committee to strengthen, not weaken EDI considerations in research funding criteria to ensure that Canadian science remains globally competitive, ethically grounded and socially responsible.
IDEA-STEM stands ready to work together—