CLHIA members adopt new code on genetic testing

“Canada’s life and health insurers recognize the importance of this issue and the impact it has on many Canadians, and that is why we are putting this Industry Code into place,” says Frank Swedlove, president of CLHIA. “Our goal is to assist consumers while, at the same time, continue to ensure that all Canadians can access insurance at reasonable and fair prices.”

The use of genetic test information by insurance companies has been flagged as a privacy issue. It has also raised fears that Canadians may be reluctant to pursue genetic testing – for research purposes, or even when it’s clinically advisable – if it could have an impact on their insurability.

In response to those concerns, the Office of the Privacy Commissioner (OPC) of Canada released a statement in July urging insurers to refrain from asking applicants to undergo genetic testing and from requesting access to existing genetic test results – at least for the time being.

In making that recommendation, the OPC emphasized the highly sensitive nature of genetic test results, the low predictive value of many genetic test results, and evidence that restricting insurers’ access to genetic test results would not have a significant adverse impact on the viability of the industry.

“It is not clear that the collection and use of genetic test results by insurance companies is demonstrably necessary, effective, proportionate or the least intrusive means of achieving the industry’s objectives at this time,” the OPC said.

However, it suggested that this position should be revisited on a periodic basis, given the rapidly changing state of medical technology.

The new industry code emphasizes that insurers will not, in any circumstances, require an applicant to undergo a genetic test.

When genetic testing has been undertaken and a person is aware of the results and subsequently applies for insurance, however, the code states that insurers needs to be made aware of relevant and material information derived from the test in order to properly assess the risk.

Without such information, the code says, the insurer cannot set an appropriate price for the insurance coverage being applied for.

In cases where the applicant’s genetic testing was conducted as part of a medical research project, and where the results are not shared with them or their physician, however, the code states that the industry will not request access to the results.

Life insurance policies already in place will not be affected by any future genetic test results. Thus, CLHIA suggests that clients may want to consider applying and obtaining insurance before undergoing genetic testing.

The code emphasizes that genetic testing information accessed by the industry is treated with strict standards of confidentiality. The information will not be used for any unauthorized purpose or disclosed to any other party, according to the code, except with the individual’s consent, or when required by law.

Member companies will begin implementing the new industry code immediately, and will be required to certify on an annual basis that they are in compliance with the code.

“We hope that this Industry Code will provide greater clarity regarding genetic testing information and what consumers can expect when they apply for insurance,” says Swedlove.