News reports frequently suggest that Canada is alone amongst G-7 countries in not having a law specifically addressing genetic discrimination. The absence of legislation is said to make Canadians vulnerable to unfair discriminatory practices, particularly with respect to insurance and employment. In response, two bills that would attempt to prohibit genetic discrimination are currently before legislatures in Canada.
So how would these laws compare to the laws of the U.K. and the U.S.? As it turns out, Canada might be late to the table, but the Canadian anti-discrimination laws, if either were passed, would prohibit the use of genetic testing and genetic characteristics to make distinctions between individuals in far more circumstances than is currently the case in either the U.K. or the U.S.
Underlying the proposed Canadian approach appears to be twin beliefs in the privacy of genetic information and that making distinctions based on inherited characteristics is unfair. Rather, there appears to be an underlying view that sharing risks, particularly relating to health, is preferable, even if this may mean higher insurance premium costs for individuals and employers.
Canada’s Bill S-201
Currently the main protection from genetic discrimination in Canada is found in personal information protection legislation, such as the Personal Information Protection and Electronic Documents Act. This legislation does not permit the collection and use of information without an individual’s consent. It also prohibits the collection and use of information for purposes that a reasonable person would not consider “appropriate.” In July 2014, the Office of the Privacy Commissioner of Canada published a statement on the use of genetic test results by life and health insurance companies. The OPC examined whether the use of genetic test results could be considered to be “appropriate” and concluded that genetic testing was neither necessary to assess risks nor effective in predicting that the individual would develop the specific disease or disorder.
However, there are gaps in Canada’s privacy protections for employees. Notably, private sector employees do not enjoy statutory privacy protections unless they are employed in the provinces of Alberta, British Columbia or Quebec, or are employed by a federal, work, undertaking or business (e.g., banks, airlines, interprovincial railways, etc., and employees in the three northern territories). Unless employment standards or human rights legislation prohibits discrimination, there are fears that many employees are vulnerable to genetic discrimination.
Bill S-201, the Genetic Non-Discrimination Act, might change the landscape of protection. Bill S-201was introduced by Sen. James Cowan and passed the Senate April 14, 2016. It is now before the House of Commons. Bill S-201 was drafted with the simplicity of a private members’ bill. However, that simplicity might create constitutional issues. The bill could be criticized as seeking to regulate civil rights in a province, which is ordinarily a subject-matter over which the provinces jealously guard their exclusive jurisdiction.
If Bill S-201 was enacted, and if it survived constitutional challenge, the bill would prohibit requiring an individual to undergo a genetic test or to disclose the results of a genetic test as a condition of:
- providing goods or services to that individual;
- entering into or continuing a contract or agreement with that individual; or
- offering or continuing specific terms or conditions in a contract or agreement with that individual.
The prohibition on requiring an individual to submit to a genetic test does not, of course, prevent an insurer or other person from obtaining information about an individual’s genetic make-up indirectly through requesting a detailed family history. Any refusal to deal with an individual who refused to submit to a genetic test or disclose the results of a genetic test would be prohibited. An individual would be required to provide written consent to the collection, use or disclosure of results of a genetic test for any of the activities listed above.
The only exceptions from these prohibitions would be for physicians, pharmacist or other health practitioners treating the individual or in the case of research in which the individual is a participant.
Penalties for violating the law would be steep. If convicted on an indictment, the fine could be up to $1,000,000 and/or five years in prison. Summary conviction penalties would carry fines of up to $300,000 and/or 12 months in prison. In effect, the legislation would criminalize requiring an individual to obtain a genetic test or disclose the results of a genetic test.
Bill S-201 would also amend the Canada Labour Code to prohibit federally-regulated employers from requiring genetic testing. Again, the focus on “testing” may seriously limit the protections against any discrimination based on family history. The Canada Human Rights Act would also be amended to prohibit discrimination more generally on the basis of genetic characteristics. If the general provisions of Bill S-201 failed as being unconstitutional, these amendments to the Canada Labour Code and the Canada Human Rights Act would not prohibit discrimination by private sector employers who were not federal works, undertakings or businesses and would not prohibit discrimination in insurance.
Ontario’s Bill C-30
Ontario’s legislature is also considering an amendment to its Human Rights Code. Bill C-30, the Human Rights Code Amendment Act (Genetic Characteristics), 2016, would add “genetic characteristics” as a protected characteristic under the Ontario Human Rights Code. Genetic characteristics would include all genetic traits of an individual, including traits that may cause or increase a risk to develop a disorder or disease. The result of the amendments would be that individuals would be protected from discrimination, based on genetic characteristics, in respect of services goods and facilities, accommodation, contracts, employment, and vocational associations. The Human Rights Code would apply to Ontario private-sector employers and to insurers in the province.
However, Bill C-30 has an important exception. An insurer could discriminate based on genetic characteristics for high-value insurance contracts. These are contracts for automobile, life, accident or sickness or disability insurance or group insurance (other than as provided by an employer) or a life annuity in which, in each case, the benefits under the insurance or annuity would exceed $1,000,000 in total or $75,000 per year. The distinction must be based on reasonable and bona fide grounds because of genetic characteristics. This suggests that the genetic characteristics must be scientifically sound predictors of disease or a disorder.
Comparison to the UK and the US
The U.K. approach is currently very different from the proposed approach in Canada, but very similar to the current situation in Canada. Contrary to assertions in the Canadian press, the U.K. has no stand-alone legislation that prohibits genetic discrimination. The UK Equality Act, 2010 does not expressly prohibit genetic discrimination. A proposal to include genetic characteristics as a prohibited ground for discrimination was considered in 2007 and rejected.
There is also no law that prohibits discrimination with respect to insurance. However, the insurance industry and the government reached a “concordat” on the use of genetic testing in insurance. An insurer is permitted to seek “diagnostic” genetic test results. However, predictive genetic tests (which are correlated with risks of developing a disease or disorder rather than diagnosing a disease or disorder) may not be required of individuals, and individuals who have taken such tests are not required to disclose the results.
There is an exception in which the insurer can ask for the results of a predictive test for Huntington’s disease if the individual is seeking life insurance over GBP500,000. The test for Huntington’s is highly predictive. In addition, the government has left open that the results of other predictive tests could be requested if the test were approved by a panel of experts appointed by the government.
As in Canada, protection from genetic discrimination in employment and other activities comes primarily from the Data Protection Act. The U.K. Information Commissioner’s Office has strongly counseled against collecting genetic information in employment. However, the ability to do so has not been ruled out.
The U.S. approach is different entirely from Canada and the U.K.. The U.S. has expressly prohibited genetic discrimination through the Genetic Information Nondiscrimination Act of 2008. In addition, there is a patchwork of U.S. state laws that protect against genetic discrimination, particularly in employment and in some health insurance contexts. GINA is complex but prohibits health insurers from requiring genetic information in group or individual plans or using that information to set premiums in group or individual plans. Genetic information cannot be used by insurers to deny coverage based on a “pre-existing condition.” Employers are prohibited from using genetic information for hiring, firing or promotion. Insurers are prohibited from using the information for determining insurability. Although employers may request genetic information as part of a bona fide genetic monitoring program with respect to monitoring the health of employees exposed to potentially harmful substances.
However, there are significant exceptions. The provisions do not protect against discrimination with respect to life insurance, disability insurance and long-term care insurance. Small employers may not be covered.
Assessing the Different Approaches
The U.S. leapt in early with GINA to protect individuals with respect to health insurance and employment. The focus on health insurance is perhaps not surprising given that at the time that GINA was passed there were already large numbers of uninsured Americans, unlike Canada and the U.K.. However, GINA leaves untouched all types of insurance other than health insurance, unlike the proposals in Canada. However, like the proposals in Canada, GINA draws a bright line in the employment context. The need to do so in the U.S. is understandable perhaps given the absence of strong privacy laws for employees as is the case for employees in many provinces in Canada. The U.K. approach relies on privacy laws and an agreement with the insurance industry that is both evidence-based and risk-based.
Canada is pursuing a different path with Bill S-201. There is no evidence-based approach. There is simply a prohibition on genetic testing requirements and the use of genetic tests with penal provisions for violation. The federal bill seems to be based on the belief that genetic information is deeply private and that the use of that information (even if it were scientifically valid) by insurers or employers is unfair given that it is an immutable characteristic. The Ontario approach is nearly as categorical but uses a benefits payout threshold to allow insurers to seek genetic information for policies greater than CA$1,000,000 or $75,000 per month. In the Ontario bBill, the sense of “fairness” depends, it seems, on the size of the risk that the insurer is being asked to accept for a single individual.
The issue is complex and it is uncertain where Canada will land. No doubt there will be more debate and possibly further amendments to the proposed bills.