Canadian specialists urge warning on free genetic testing and knowledge sharing

Free genetic testing, provided partially or totally sponsored by trade, might have trade-offs, and well being programs in Canada should rigorously weigh potential medical, moral, and authorized issues to guard affected person knowledge, authors argue in a CMAJ (Canadian Medical Affiliation Journal) commentary https://www.cmaj.ca/lookup/doi/10.1503/cmaj.231588.

“Close to- and long-term growth in no-cost testing and trade partnership in genetics, with affected person knowledge because the commodity, is probably going,” writes Kirsten Bartels, a genetic counsellor at Windfall Well being Care Coronary heart Centre, St. Paul’s Hospital, Vancouver, British Columbia, with coauthors.

Commodification of information will not be the norm in well being care programs in Canada and shouldn’t be launched with out due consideration.”

Kirsten Bartels, Genetic Counsellor, Windfall Well being Care Coronary heart Centre, St. Paul’s Hospital

Sponsored genetic testing is accessible for a wide range of situations, from neuromuscular to eye situations, and should be ordered by a medical skilled, like provincially funded genetic checks. Most of those sponsored checks are carried out in america, and applied sciences and testing strategies might differ from these utilized in Canada, with probably completely different or incomplete outcomes. Sponsored genetic testing also can embrace a wider vary of genes for testing, which can trigger extra hurt.

As effectively, Canada has stringent privateness legal guidelines to guard sufferers, however these legal guidelines might not apply in international locations the place testing is performed, which may go away sufferers susceptible to being recognized.

To assist information well being care suppliers in Canada about utilizing sponsored genetic testing, the commentary authors, as members of the Canadian School of Medical Geneticists and Canadian Affiliation of Genetic Counsellors, not too long ago printed a place assertion.

They finish with a name to motion for presidency and well being organizations.

“We name on well being care jurisdictions to contemplate this vital challenge urgently and to help the event of complete steerage to assist practitioners navigate this subsequent era of genetic testing and knowledge sharing.”