In her decade-long tenure as a health-care executive, Cheryl Prescod has witnessed firsthand the challenges faced by Black Canadians within the national health-care system. Serving as the executive director at the Black Creek Community Health Centre in Toronto’s Jane and Finch neighborhood, Prescod caters to a diverse clientele, with a significant representation of Black and racialized individuals. These individuals often struggle to access health services that prioritize their safety and cultural sensitivity.
Black Canadians are disproportionately affected by specific diseases such as Type 2 diabetes, hypertension, and triple-negative breast cancer. In a groundbreaking initiative commencing on February 1, researchers from Ontario, Quebec, and Nova Scotia are launching the genCARE project. This project aims to sequence the genomes of over 10,000 Black Canadians afflicted with these diseases, along with individuals without underlying medical conditions.
Funded by Genome Canada, the genCARE project seeks to leverage its findings to enhance targeted treatment and preventative care strategies, ultimately fostering more equitable and anti-racist health outcomes. Cheryl Prescod emphasized the critical need for Black representation in genetic research studies, as less than five percent of such studies worldwide include data from Black individuals. The hope is that the research outcomes will empower health practitioners, like those at Black Creek, to better assist their patients in managing their health conditions.
The overarching goal of genCARE, as articulated by Dr. Upton Allen, the project’s administrative lead, is to incorporate a patient’s genetic profile and other relevant factors into diagnostics and treatment plans — a concept known as precision medicine. By delving into the genetic underpinnings of diseases, the project aims to unravel why certain individuals are more susceptible to specific disorders and tailor treatments accordingly.
Addressing the deep-rooted mistrust of medical institutions among Black communities poses a significant challenge for researchers involved in the genCARE project. The history of discrimination against Black individuals has engendered skepticism, making participant recruitment a formidable task. However, efforts are underway to engage community health centers, medical facilities, and eventually children in the research initiative.
Dr. Gavin Oudit, a cardiology professor at the University of Alberta, lauded the genCARE project as a pivotal endeavor to enhance disease prediction, diagnosis, and treatment. He highlighted the inadequacy of current genomic databases, which lack sufficient data from racialized populations, leading to incomplete and deficient results for individuals of Black or Indigenous backgrounds.
To foster trust and avoid perpetuating harm, researchers are committed to anonymizing DNA data, securely storing it in Canada, and sharing study insights with community members through events like town halls. Collaborative efforts with community ambassadors during the COVID-19 pandemic have exemplified successful outreach strategies in building trust and fostering participation in health initiatives.
While the benefits of the genCARE project may not be immediate for participants, Cheryl Prescod remains optimistic about the long-term impact on future generations. Recognizing the significance of inclusive genetic research, Prescod envisions a brighter healthcare landscape for Black Canadians, acknowledging that despite the delayed realization, it is never too late to effect positive change.