Are free genetic tests really free?

Free genetic testing, partially or fully subsidized by industry, can have drawbacks and health care systems in Canada must carefully weigh potential clinical, ethical and legal considerations to protect patient data, authors argue in a Journal of the Canadian Medical Association commentary.

“A short- and long-term expansion of free testing and industry collaboration in genetics, with patient data as a commodity, is likely,” writes Kirsten Bartels, a genetic counselor at Providence Health Care Heart Centre, St. Paul’s Hospital, Vancouver, British Columbia, with co-authors. “Data commodification is not the norm in health care systems in Canada and should not be introduced without due consideration.”

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

Canada also has strict privacy laws to protect patients. However, these laws may not apply in countries where testing is performed, leaving patients vulnerable to identification.

To assist health care providers in Canada in the use of sponsored genetic testing, the commentary authors, as members of the Canadian College of Medical Geneticists and the 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 authorities to urgently consider this important issue and support the development of comprehensive guidelines to help professionals navigate this next generation of genetic testing and data sharing.”