Privacy urged for genetic records

Civil liberties group says Canadians need more protection

Lawmakers need to do more to ensure sensitive genetic and health information remains private, says Micheal Vonn, policy director of the B. C. Civil Liberties Association.

“Canadians keep being told that they should be excited by the revolution in genetic medicine,” she said after the release of a report on the issue commissioned by her association.

“But our medical privacy is already under threat because of electronic health records and Canadian privacy laws that have a lot of loopholes.”

For instance, she said, the Canadian Medical Association indicated in 2011 that physicians can’t guarantee that personal medical information will remain private once it’s entered into electronic health records.

Personal genetic data could be included in those records, and doctors don’t know who can access them, she added.

“Patients do not really have the ability to control their health information like they believe that they do. [ Genetic] information can, or could one day, limit opportunities in employment, schooling and insurance matters, and even in decisions about reproductive choices.”

The report, called Genetic Privacy and Discrimination and funded by the Law Foundation of British Columbia, said improvements in genetic mapping technologies mean Canadians’ privacy needs more legal protection.

It said that while the improvements can help screen for diseases and create effective treatment plans, personal information could also end up in the wrong hands, preventing people from getting certain jobs or insurance.

Vonn said Canada’s privacy commissioner highlighted genetic privacy as a “priority” two years ago but there hasn’t been any policy reform since then.

Scott Hutchinson, a spokesman for the privacy commissioner of Canada, said: “This is an emerging issue around which more public policy work needs to be done in the face of uncertainty.”

There are privacy laws in place for the private and public sector, he said, but more needs to be done to anticipate “the issue of the possible use or misuse of genetic info by insurers, employers and others in any systematic way.”

It’s difficult for the law to “keep up in real time,” he said, pointing to the emerging issue of genetic testing done for consumers outside the public health care system.

“There is very limited to no oversight or regulation of such testing within Canada,” he said.

Vonn said another concern is the increasing use of DNA in criminal investigations in Canada.

She said there should be no expansion of DNA banking criteria in Canada until there is a legal and political conversation about reasonable limits.

Canadians should avoid aligning with the U. K., which she said “notoriously has over a million innocent individuals on their national DNA database.”