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March 18, 2015
Health groups condemn CLHIA policy on genetic testing

The Canadian Life and Health Insurance Association (CLHIA) has issued a controversial code to regulate the use of genetic testing in life insurance underwriting.

In its September 2014 paper entitled Genetic testing information for insurance underwriting, the association representing Canada’s largest life and health insurers says it will not require or initiate genetic testing for those who apply for life or health insurance coverage. However, with a few exceptions, the group will still require those who have undergone genetic tests to reveal the results to potential insurance underwriters.

“Insurers will not, in any circumstances, encourage an applicant to undergo a genetic test,” the CLHIA policy says. However, it notes: “Where an individual has voluntarily and independently undergone genetic testing, insurers may consider those results as part of their risk assessment.”

The results of such assessments could generate higher or lower insurance premiums or affect the insurability of an applicant, the organization notes.

As part of its genetic testing protocol, the CLHIA also made the following commitments:

  • if an applicant has requested not to know the results of a genetic test, insurers will continue to respect the applicant’s right to remain unaware of the test results;
  • insurers will not require or request applicants to reveal genetic test results when they have participated in genetic testing for research purposes and did not receive the results of the tests;
  • insurers will not ask for genetic test results from applicants when they have had a genetic test performed and they and their physician will not receive the results prior to the insurance being issued;
  • genetic test results may only be obtained with the written consent of the individual;
  • insurers will not require any person other than the applicant to reveal the results of a genetic test; and
  • access to test results will be restricted to the insurer and its reinsurers.  Written consent of the tested individual will be required to release the information to third parties.

The CLHIA policy statement was condemned by the Coalition for Genetic Fairness, an association of 16 different health information organizations including the Huntington Society of Canada, Alzheimer Society of Canada, the Kidney Foundation, the Multiple Sclerosis Society and others.

“This new industry code does not address the concerns of Canadians who fear discrimination by insurance companies due to their genetic make-up,” the group said in a September 26, 2014 media release.  “Genetic information can help individuals make informed decisions.  It is unacceptable that Canadians risk discrimination by insurance companies if they wish to obtain their personal genetic information. This stands in the way of Canadians being pro-active about their own health.”

There are more than 3,000 genetic tests available to Canadians but there are no provisions to protect individuals’ personal genetic information, the Coalition notes.

“Canada is the only G7 country that does not protect its citizens against this form of discrimination,” it says.

Private members’ bills have been introduced in the federal House of Commons to outlaw the use of genetic testing in insurance underwriting.  None have been passed.

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