26- Considerations of Therapeutic Gene Editing on the Indigenous Population in Northern Ontario

In this presentation, we consider the ethics of research and development of therapeutic gene editing from under the lens of the realities of life in Northern Ontario.
Within the contemporary bioethics discourse on gene editing, the prevailing assumption of abundant resources for research and development is incongruent with the resource-scare reality in Northern Ontario, where necessities such as clean drinking water and accessible healthcare are lacking. Allocating (or redirecting) research funding towards gene editing merely perpetuates existing disparities.
Moreover, historical injustices, such as the residential school system, land dispossession, and forced sterilization, have cultivated skepticism and hesitancy among many people toward governmental and healthcare services. Respecting Indigenous values involves recognizing the significance of deeply-embedded traditions and cultural beliefs regarding healing and medicine. Unless therapeutic gene editing can actually help resolve health care issues in the North, then people there are unlikely to participate. Unfortunately, the most pressing health issues faced by such communities are not treatable via genetic editing (e.g. access to nutritious and affordable food, suicide, mental health, and the unavailability of appropriate health services) and, because of this, research on and development of therapeutic gene editing does not align with the Truth and Reconciliation Commission of Canada’s Calls to Action, such as #19.




We recommend a moratorium on the research and development of human genome editing in Canada until that project is aligned with reconciliation and the wellbeing of vulnerable people, and is unlikely to exacerbate existing circumstances of injustice and marginalization of people living in Northern Ontario.