Exploring the Hidden Costs of Industry-Funded Genetic Testing

According to authors writing in a Canadian Medical Association Journal commentary, free genetic testing that is either fully or partially funded by businesses which may have trade-offs. As a result, Canadian health systems must carefully consider potential clinical, ethical, and legal issues to protect patient data.

Near- and long-term expansion in no-cost testing and industry partnership in genetics, with patient data as the commodity, is likely. 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

Similar to provincially funded genetic tests, sponsored genetic testing is available for a range of conditions, from neuromuscular to ocular, and requires an order from a medical professional.

The majority of these sponsored tests are carried out in the US, and as US technologies and testing procedures may differ from Canadian ones, the outcomes may be different or lacking. In addition, more genes may be tested for in sponsored genetic testing, which could be harmful.

Furthermore, Canada has strict privacy laws to safeguard patients; however, these laws might not apply in nations where testing is carried out, leaving patients at risk of identification.

The commentary's authors, who are members of the Canadian Association of Genetic Counsellors and the Canadian College of Medical Geneticists, have released a position statement to assist healthcare providers in Canada in deciding whether to use sponsored genetic testing.

They conclude with a request for action from governmental and medical institutions.

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.”

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