Canadian experts urge caution on free genetic testing and data sharing

Canadian Medical Association JournalJul 29 2024

Free genetic testing, offered partially or fully subsidized by industry, may have trade-offs, and health systems in Canada must carefully weigh potential clinical, ethical, and legal considerations to protect patient data, authors argue in a CMAJ (Canadian Medical Association Journal) commentary https://www.cmaj.ca/lookup/doi/10.1503/cmaj.231588.

"Near- and long-term expansion in no-cost testing and industry partnership in genetics, with patient data as the commodity, is likely," writes Kirsten Bartels, a genetic counsellor at Providence Health Care Heart Centre, St. Paul's Hospital, Vancouver, British Columbia, with coauthors.

Commodification of data is not the norm in health care systems in Canada and should not be introduced without due consideration."

Kirsten Bartels, Genetic Counsellor, Providence Health Care Heart Centre, St. Paul's Hospital

Sponsored genetic testing is available for a variety of conditions, from neuromuscular to eye conditions, and must be ordered by a medical professional, like provincially funded genetic tests. Most of these sponsored tests are performed in the United States, and technologies and testing methods may differ from those used in Canada, with potentially different or incomplete results. Sponsored genetic testing can also include a wider range of genes for testing, which may cause additional harm.

As well, Canada has stringent privacy laws to protect patients, but these laws may not apply in countries where testing is conducted, which could leave patients vulnerable to being identified.

To help guide health care providers in Canada about using sponsored genetic testing, the commentary authors, as members of the Canadian College of Medical Geneticists and Canadian Association of Genetic Counsellors, recently published a position statement.

They end with a call to action for government and health organizations.

"We call on health care jurisdictions to consider this important issue urgently and to support the development of comprehensive guidance to help practitioners navigate this next generation of genetic testing and data sharing."