Genetic information can reveal very sensitive and personal information about an individual and his/her family. The federal Genetic Non-Discrimination Act (Bill S-201) received Royal Assent in the Senate on May 4, 2017.
The Bill gives control to Canadians over the use of their genetic test results by banning anyone from requiring an individual to undergo genetic testing, or from disclosing the results of a genetic test, as a condition of entering into or continuing a contract; or as a condition of providing goods or services to that individual. The Bill makes amendments to the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics and amends the Canada Labour Code to protect employees from being required (by their employers) to either undergo genetic testing or disclose the results of such testing. Violation of the prohibition is an offence that can result in substantial fines, imprisonment or both.
The prohibition against requiring disclosure of genetic test results does not apply to a physician, pharmacist or other health care practitioner (in respect of individuals to whom they are providing health services) or to researchers conducting medical, scientific or pharmaceutical research (in respect of research participants).
Bill S-201 would prevent insurance companies from requesting disclosure of genetic test results, received either in a therapeutic or research context, in order to assess actuarial risk. The first-reading version of the Bill exempted high value insurance contracts from the prohibition if the province enacted a provision expressly permitting an insurer to require a person to disclose any existing genetic test results as a condition of entering into or continuing a contract of insurance. That clause did not appear in the final version of the Bill.
The Canadian Life and Health Insurance Association (CLHIA) announced, on November 11, 2016, a commitment from insurers to refrain from collecting or using any genetic test results for new applications for life insurance policies up to $250,000, effective January 1, 2018. As a result, according to the CLHIA, more than 85% of applications for life insurance would not require any disclosure of genetic test results. This is a higher policy amount than was included in the exemption for insurance contracts ($1,000,000) that appeared in the first version of Bill S-201. Even with this commitment, insurers would not be permitted to require disclosure of genetic test results for higher value policies under Bill S-201.
However, there is concern that the Bill intrudes upon the provinces’ jurisdiction over insurance. In the Senate debates of April 4, 2017, Senator Frum noted that the Prime Minister and the Minister of Justice will be referring the Bill to the Supreme Court of Canada, on the matter of constitutionality, after it receives Royal Assent.
The meaning of “personal information” under Canada’s Personal Information Protection and Electronic Documents Act (PIPEDA) was also at issue in the first version of the Bill. When the Bill was introduced, it included amendments to PIPEDA to define personal information to include “personal health information, such as information derived from genetic testing”. However, David Therrien, the Privacy Commissioner of Canada, noted that the current definition of personal information in PIPEDA is broad enough to include information derived from genetic testing, and that including such information as an example of personal health information could narrow the definition of personal health information and also limit information derived from genetic tests to the health care context, thereby excluding information from genetic testing conducted for other purposes, such as paternity, ancestry and others. Subsequently, the Bill was amended at third reading in the Senate to remove the amendments to both PIPEDA and the Privacy Act.
 See https://www.clhia.ca/domino/html/clhia/clhia_lp4w_lnd_webstation.nsf/page/07AC1F9D1616B528852580A4006D544E
 See https://sencanada.ca/en/Content/Sen/chamber/421/debates/108db_2017-04-04-e#31.