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Next generation of free? Points to consider when navigating sponsored genetic testing
  1. Kirsten Bartels1,
  2. Samantha Afonso2,
  3. Lindsay Brown3,
  4. Claudia Carriles4,
  5. Raymond Kim5,
  6. Joanna Lazier6,
  7. Saadet Mercimek-Andrews7,
  8. Tanya N Nelson3,
  9. Ian Stedman8,
  10. Emily Thain9,
  11. Rachel Vanneste10,
  12. Lauren Chad11,12
  1. 1 Department of Medicine, Providence Health Care Heart Centre, St. Paul’s Hospital, Vancouver, British Columbia, Canada
  2. 2 Heart, Lung and Vascular Program, St. Michael’s Hospital, Unity Health Toronto, Toronto, Ontario, Canada
  3. 3 Pathology & Laboratory Medicine, BC Children's Hospital, Vancouver, British Columbia, Canada
  4. 4 Genomics Laboratory, Shared Health Manitoba, Winnipeg, Manitoba, Canada
  5. 5 Department of Medicine, Division of Medical Oncology and Hematology, Princess Margaret Cancer Centre, University Health Network, Toronto, Ontario, Canada
  6. 6 Medical Genetics, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada
  7. 7 Medical Genetics, University of Alberta, Edmonton, Alberta, Canada
  8. 8 School of Public Policy and Administration, York University, Toronto, Ontario, Canada
  9. 9 Familial Cancer Clinic, University Health Network, Toronto, Ontario, Canada
  10. 10 Division of Medical Genetics, Department of Pediatrics, University of Saskatchewan, Saskatoon, Saskatchewan, Canada
  11. 11 Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada
  12. 12 Department of Bioethics, The Hospital for Sick Children, Toronto, Ontario, Canada
  1. Correspondence to Dr Lauren Chad, Department of Pediatrics, The Hospital for Sick Children, Toronto, ON M5G 1E8, Canada; lauren.chad{at}sickkids.ca

Abstract

Genetics has been integrated into patient care across many subspecialties. However, genetic and genomic testing (GT) remain expensive with disparities in access both within Canada and internationally. It is, therefore, not surprising that sponsored GT has emerged as one alternative. Sponsored GT, for the purpose of this document, refers to clinical-grade GT partially or fully subsidised by industry. In return, industry sponsors—usually pharmaceutical or biotechnology companies—may have access to patients’ genetic data, practitioner information, DNA and/or other information. The availability of sponsored GT options in the Canadian healthcare landscape has appeared to simplify patient and practitioner access to GT, but the potential ethical and legal considerations, as well as the nuances of a publicly funded healthcare system, must also be considered. This document offers preliminary guidance for Canadian healthcare practitioners encountering sponsored GT in practice. Further research and dialogue is urgently needed to explore this issue to provide fulsome considerations that one must be aware of when availing such options.

  • Genetics
  • Ethics
  • Policy

https://doi.org/10.1136/jmg-2023-109571

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    Footnotes

    • Contributors This document has been prepared by the Sponsored Testing Working Group of the Canadian College of Medical Geneticists (CCMG) and Canadian Association of Genetic Counsellors (CAGC), which included representatives from various provinces, practice committees and patient partner engagement. It was reviewed by general membership and approved by the CCMG and CAGC Board of Directors.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.