The Genetic Non-Discrimination Act- An Overview

April 11, 2018

Because the Learn section of TalkRights features content produced by CCLA volunteers and interviews with experts in their own words, opinions expressed here do not necessarily represent the CCLA’s own policies or positions. For official publications, key reports, position papers, legal documentation, and up-to-date news about the CCLA’s work check out the In Focus section of our website.

 

The Genetic Non-Discrimination Act (GNDA), or Bill S-201, passed into law on May 4th 2017. The bill, along with amendments in the Canadian Labour Code and the Canadian Human Rights Act, prohibits companies and employers from requiring genetic testing or the results of genetic tests. It also prevents companies from denying services based the results of genetic tests.

Genetic testing refers to the process of analyzing a person’s genes to identify specific traits or markers, commonly called “genetic characteristics.”[1] These characteristics can be used to identify a person’s ancestral origins, whether two people are related, or connect suspects to crimes.[2] Most importantly, these tests can be used to spot if a person is predisposed to a medical condition that may manifest later in life.[3] These tests could be vital to ensure early intervention preventing or mitigating the onset of a medical condition. While current medical tests can only accurately predict the likelihood of developing a few medical conditions, the science is improving.[4]

Without legislation, results of genetic testing could limit a person’s ability to receive life or disability insurance. It could also significantly raise insurance premiums for those whose tests reveal they have a risk of developing serious medical conditions.

 

Where the Act applies

The Act prohibits all people and businesses from requiring the results of genetic tests when providing services or goods, entering contractual agreements, or offering specific terms or conditions in a contract. In addition, the Act forbids denying people services when they refuse to undergo genetic tests and prohibits the collection, use and disclosure of an individual’s genetic test results without their written consent.[5] 

On conviction of an indictable offence, a guilty party may be fined up to one million dollars and imprisoned for up to five years. If found guilty on a summary conviction, the conduct is punishable by up to three thousand dollars in fines and a maximum of a year in prison.[6]

The Act does not apply to physicians, pharmacists or other health practitioners who are providing health services. It also does not apply to pharmaceutical or scientific researchers acting in the course of their studies.[7]

This law makes it illegal for insurance providers to demand the results of genetic tests. The Canadian Life and Health Insurance Association, however, currently has a voluntary code stating that insurers will not require genetic tests, but results of prior tests should be disclosed if the insurance policy is for more than $250 thousand. About 15 per cent of Canadians have insurance policies over this amount.[8]

 

Where to file complaints

Amendments to the Human Rights Code and the Canadian Labour Code prohibit discriminatory practices based on the results of genetic tests in the federal sector and federally regulated industries. These include federal government departments and agencies, crown corporations, and other federally regulated businesses. The amendments prohibit these institutions from denying a good, service, accommodation or membership to an organization on the basis of an individual’s genetic test results or their refusal to undergo genetic tests.[9]  

If an employer violates the Act, the employee may write a complaint in a letter directed to the registrar at the Canada Industrial Relations Board. The letter should contain all the relevant information regarding the complaint and must be signed by the employee. The letter should contain the names, addresses and telephone and telecopier numbers of the persons involved, provisions of the Code affected, the date of the alleged incident, a complete statement of facts and the remedy requested.

A person who feels their rights have been violated under the Canadian Human Rights Act, which applies to all federal and federally regulated institutions, may complain to the Canadian Human Rights Commission. The Commission will then attempt to mediate the dispute. If mediation is unsuccessful the complaint may be brought to the Canadian Human Rights Tribunal for adjudication.[10]

 

Footnotes:

[1] Canada, Legal and Social Affairs Division, Parliamentary Information and Research Service, “Legislative Summary of Bill S-201: An Act to prohibit and prevent genetic discrimination”, by Julian Walker, Publication No 41-1-S201-E (Ottawa: Library of Parliament, 6 December 2016), online: http://publications.gc.ca/collections/collection_2017/bdp-lop/ls/YM32-3-421-S201-eng.pdf.

[2] Ibid.

[3] Ibid.

[4] Ibid.

[5] Bill S-201, Genetic Non-Discrimination Act, 1st Sess, 42 Parl, Cl 3-4

[6] Bill S-201, supra, Cl 7.

[7] Ibid, Cl 6.

[8] Glasgow, Donna, Genetic Non-Discrimination Act comes into force, (The Insurance and Investment Journal, 5 May 2017), online: https://insurance-journal.ca/article/genetic-non-discrimination-act-comes-into-force/.

[9] Canada, Legal and Social Affairs Division, supra.

[10] Ibid.