• UNESCO, ECOSOC, the World Health Organization (WHO), and the World Medical Association (WMA) have all made non-binding statements against the use of genetic information by insurance providers.
• Some international documents that oppose the use of genetic information by insurance providers are:
  • WMA, Statement on Genetics and Medicine (2005, amended 2009)
  • UNESCO, International Declaration on Human Genetic Data (2003)
  • ECOSOC, Genetic Privacy and Non-Discrimination (E/2007/65) (2007)
  • WHO, Cloning in Human Health - Report by the Secretariat (1999)

In Canada, there is no existing legal framework specifically prohibiting insurance providers from asking for the results of an insurance candidate’s genetic tests.

Genetic information, insofar as it is a form of personal information, is protected by legal instruments related to privacy and discrimination.

• The Privacy Act (1983) imposes obligations on ministers and federal organizations to respect privacy rights by limiting the collection, use, and communication of personal information.
• The Personal Information Protection and Electronic Documents Act (2000) creates basic rules about the manner in which private sector organizations may collect, use, and communicate personal information in the framework of commercial activities.

In Quebec, several legal provisions protect the confidentiality of medical files and prohibit health care professionals from disclosing their contents without authorization. Therefore, insurance providers cannot access these files without the consent of the individual concerned. The Act Respecting the Protection of Personal Information in the Private Sector and the Act Respecting Access to Documents Held by Public Bodies and the Protection of Personal Information govern the collection, use, and communication of personal information.

At the same time, when an insurance contract is entered into, all insurance candidates have the obligation to reveal all information pertinent to their risk evaluation (Articles 2408, 2409, and 2410 Civil Code of Quebec). If all pertinent information is not revealed at this time, the insurance provider may cancel the policy at any time. (Audet c. l’Industrielle-Alliance [1990] R.R.A.500 (C.S.Q).)

Insurance providers obtain genetic information directly from those who are seeking insurance coverage. This information is often obtained through a questionnaire regarding personal medical history (which includes genetic diseases) and family medical history (which includes hereditary diseases).

Insurance providers also have access to all sources of medical information for which access has been authorized by the insurance candidate. When such authorization is granted, the consultation of medical files will reveal any genetic information contained therein.

At this time, there is no Canadian legislation specifically addressing the requirement of genetic testing as a prerequisite for insurance. The policy of insurance companies is typically to not require insurance applicants to undergo genetic testing. Nonetheless, if such a test has already been undertaken, the insurance provider could ask for access to the results. Such an approach is coherent with policy developed by the Canadian Life and Health Insurance Association Inc. (CLHIA). A similar position is adopted by the Canadian Institute of Actuaries and the ‘Association canadienne des directeurs médicaux en assurance-vie’. This non-mandatory policy could be modified at any time.

Insurance providers can use an applicant’s genetic information to evaluate his/her health status and life expectancy and thus the risk of insuring him/her. Insurance providers use this information to determine insurance eligibility, as well as the amount a person must pay in order to benefit from the insurance policy. This approach bases the risk on the possible future states of health of the applicant, rather than on his/her current state of health. Despite the absence of empirical data on genetic discrimination in insurance in Canada, the worry remains that those who participate in genetic research will face difficulty in obtaining insurance.

In Canada, these worries mainly affect obtaining life-insurance policies. Health care insurance is provided by provincial governments through Medicare on the basis of need and not according to solvability or health risks (universal health care system). However, private health insurance plans are still present in areas that are excluded from Medicare coverage, such as dental care and prescription medication.

Quebec law protects the confidentiality of all personal information, such that health care information obtained by insurance providers may not be disclosed to a third party without first obtaining consent from the individual concerned.

Such consent is typically obtained in a specific provision of the application form. It allows insurance providers to communicate the candidate’s personal information to the Medical Information Bureau (MIB). The MIB is a non-profit organization of 750 insurance companies that compiles information regarding candidates with a medical condition that may have a significant impact on their life expectancy, in order to make the information accessible to insurance companies. The goal of this organization is to prevent fraud. By signing an insurance contract, applicants consent to the disclosure of their personal information to MIB.