Canadian specialists urge warning on free genetic testing and information sharing

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

“Near- and long-term enlargement in no-cost testing and trade partnership in genetics, with affected person information because the commodity, is probably going,” writes Kirsten Bartels, a genetic counsellor at Providence Health Care Heart Centre, St. Paul’s Hospital, Vancouver, British Columbia, with coauthors.

Commodification of knowledge isn’t the norm in well being care methods in Canada and shouldn’t be launched with out due consideration.”

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

Sponsored genetic testing is offered for a wide range of circumstances, from neuromuscular to eye circumstances, and should be ordered by a medical skilled, like provincially funded genetic assessments. Most of those sponsored assessments are carried out within the United States, and applied sciences and testing strategies could differ from these utilized in Canada, with doubtlessly completely different or incomplete outcomes. Sponsored genetic testing may embody a wider vary of genes for testing, which can trigger extra hurt.

As properly, Canada has stringent privateness legal guidelines to guard sufferers, however these legal guidelines could not apply in international locations the place testing is performed, which may depart sufferers weak 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 College of Medical Geneticists and Canadian Association of Genetic Counsellors, just lately 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 think about this vital challenge urgently and to assist the event of complete steerage to assist practitioners navigate this subsequent era of genetic testing and information sharing.”