In March 2017, Parliament gave third reading to Bill S-201, also known as the Genetic Non-Discrimination Act. The Genetic Non-Discrimination Act was introduced as a Senate bill by now-retired Liberal Senator James Cowan in December 2015 to ensure that fear of genetic discrimination did not prevent Canadians from deciding to proceed with genetic testing which could assist in their health care. The federal Liberal Government recently indicated that it intends to take the unusual step of referring the Genetic Non-Discrimination Act to the Supreme Court of Canada for an opinion on its constitutionality once it receives Royal Assent.
As an increasing number of services in Canada use genetic information, the protection of that information has become a key issue. For example, if genetic testing reveals there is a risk that a person could develop a genetic disease, the disclosure of this information could negatively affect the person’s chances of obtaining life insurance or of being hired by an employer. Prospective insurers or employers could discriminate against the person if they are concerned that entering into a contract with the person could entail higher costs or increased inconvenience in the future.
Globally, concern about the consequences of genetic discrimination has prompted a variety of responses. Some countries, such the United States and Australia, have adopted laws which prohibit certain forms of genetic discrimination. Other countries, like the United Kingdom, have taken a different approach by permitting their insurance industry to adopt a self-regulating policy that limits how genetic information may be used. The United Nations Educational, Scientific and Cultural Organization (UNESCO) has passed resolutions addressing the use of human genetics, such as the 1997 Universal Declaration on the Human Genome and Human Rights. This declaration is intended to prevent genetic discrimination and any use of genetic information that would be contrary to human rights.
Overview of the Genetic Non-Discrimination Act
The Genetic Non-Discrimination Act prohibits any person from requiring an individual to undergo a genetic test, or to disclose the results of such a test, as a condition of providing goods or services, of entering into or continuing a contract or any part of an agreement, or of offering or continuing to offer specific terms and conditions in a contract or agreement, with that individual. Persons who violate this prohibition may be liable upon conviction to a fine of up to $1,000,000, imprisonment for a term of 5 years, or to both a fine and imprisonment. Notably, this prohibition does not apply to a physician, a pharmacist or any other health care practitioner in respect of an individual to whom they are providing health services or to a person who is conducting medical, pharmaceutical or scientific research in respect of an individual who is a participant in the research.
The Genetic Non-Discrimination Act amends the Canada Labour Code to protect employees from being required to undergo or to disclose the results of a genetic test, and provides employees with other protections related to genetic testing and test results. It also amends the Canadian Human Rights Act to prohibit discrimination in the federal sector based on a person’s genetic characteristics.
One of the main controversies surrounding the Genetic Non-Discrimination Act is its constitutionality. In Canada, insurance contracts are primarily regulated by provincial laws, as are insurance companies. The federal role in overseeing insurance companies is limited to the oversight of banks, trust companies and federally incorporated companies that offer insurance policies and services. Parliament has adopted laws affecting insurance or other business contracts pursuant to its constitutional powers to regulate trade and commerce and the criminal law. However, federal laws regulating insurance contracts have been declared invalid by Canadian courts on several occasions.
The federal government’s decision to refer the Genetic Non-Discrimination Act directly to the Supreme Court of Canada appears to be an attempt to obtain a determinative legal opinion on the constitutionality of the Act without incurring the expense of litigating a challenge to the constitutionality of the Act in the courts. Hopefully, the Supreme Court of Canada will provide Canadians with a clear opinion on the matter.