Canadian children affected by rare cancers are often excluded from participating in genomics research due to unwarranted concerns about genetic discrimination (GD). GD involves an individual or group being negatively treated, relative to the rest of the population, on the basis of actual or presumed genetic characteristics. While the Canadian Parliament enacted the Genetic Non-Discrimination Act in 2017 to protect individuals from GD, the persistent perception of risk continues to influence the decisions of many ethics’ committees. This has created significant challenges for researchers and parents seeking to include children in cancer genomics research, particularly for rare pediatric cancers.

These barriers threaten to limit the availability of crucial data and hinder the development of innovative, potentially life-saving treatment protocols for children with unique genetic or pharmacogenomic profiles—an outcome that, in itself, constitutes a form of genetic discrimination.

This project adopts a human rights-based approach to address these challenges and seeks to:

• Generate valuable insights by capturing the perspectives of parents and researchers on GD in pediatric research.
• Provide the ACCESS network with policies, evidence, and actionable guidance on using human rights frameworks to support ethics policies and develop more inclusive consent clauses.
• Challenge systemic inequities and discriminatory practices that continue to hinder pediatric oncology research.

At its core, this project embodies the values of reciprocity, equity, and human rights, which are central to ACCESS’ mission. By advocating for the inclusion of all children in cancer research, regardless of their genetic predispositions, it aims to improve the diversity of research datasets. This diversity is essential for ensuring equitable health outcomes and fostering the development of personalized cancer treatments that address the unique needs of all patients.

By reducing systemic barriers and eliminating the perceived risk of GD, this initiative can transform pediatric cancer care. It enables all children, particularly those with rare genetic cancers, to access innovative research and treatments that could profoundly impact their health and survival. Ultimately, this project is a critical step toward creating a more inclusive and equitable future for pediatric cancer research and care.

For more information, please contact Jenna Craig.