You have done testing to determine whether you have a genetic predisposition to certain medical conditions. The results come back: You do. This is important information for you and your doctor to make more informed decisions about your health care. But now that you know, are there circumstances in which you should be required to disclose the results to others?
The heart of the debate about one’s privacy in genetic testing concerns whether an individual may suffer discrimination where it is or may be determined that he or she is genetically predisposed to a particular disease. This is the heart of Bill S-201, an act to prohibit and prevent genetic discrimination.
Those in favour of robust protections caution that required disclosure of genetic results may have a chilling effect on undergoing testing. The argument goes that, for many, the risk of discrimination (namely in the employment and insurance contexts) could outweigh the benefits of information that could lead to more personalized and efficient health care. That is, some people would opt out of genetic testing despite its profound potential benefits.
Those in favour of select disclosure, including the insurance industry, underscore the relevance of genetic information in certain contexts, particularly for the purposes of risk assessment and risk pooling, upon which insurance products are built. For instance, where an applicant for life insurance has information regarding her increased risk to a potentially life-threatening condition, this information is critical to the risk assessment in determining her insurance premiums. The Canadian Institute of Actuaries (CIA), in a research paper proposing amendments to the bill, concluded that if insurers are not able to access the results of genetic tests, “the impact on insurance companies will be substantial”, concluding that insurance premiums for term life insurance “could go up by 30 percent for males and 50 percent for females”. This would occur, says the CIA, in order to counter the fact that those with a genetic predisposition to develop a serious health issue would have an incentive to buy more insurance because they would know that since they need not report this predisposition to a prospective insurer, their insurance premiums would be below cost and thus a very good deal.
The Canadian Life and Health Insurance Association (CLHIA), which opposes the bill, has taken the position that regulation is unnecessary and recently announced that the Canadian life and health insurers would, on a voluntary basis, not request or use genetic testing information for new life insurance applications up to $250,000, effective January 1, 2018. This commitment is included in the CLHIA voluntary Industry Code on genetic testing and is to be implemented by all CLHIA members. Among other things, the Industry Code also requires that companies have a dispute resolution system to deal with complaints relating to underwriting decisions involving genetic testing information.
Bill S-201: A Response to Genetic Discrimination
The United States and United Kingdom have taken steps to protect individuals from required disclosure of genetic results, with the United States passing federal legislation directly addressing the health insurance context and the United Kingdom voluntarily implementing a restrictive agreement on the use of genetic testing in certain circumstances since 2001. The basic terms of the Concordat and Moratorium on Genetics and Insurance adopted by the Association of British Insurers are that customers will neither be asked to, nor be put under any pressure to, undergo a predictive genetic test in order to obtain insurance or to disclose any predictive or diagnostic genetic test results acquired as part of clinical research or after the policy has started, whether their own test or that of another person (i.e., a blood relative).
Canada is now following suit with the introduction of Bill S-201, an act to prohibit and prevent genetic discrimination. Senator James Cowan is championing the bill, which recently passed the Senate and is now in the House of Commons.
Bill S-201 prohibits requiring an individual from undergoing genetic testing or disclosing genetic test results as a condition of: (a) providing goods and services; (b) entering into or continuing a contract or agreement with that individual; or (c) offering or continuing specific terms or conditions in a contract or agreement with that individual.
Parenthetically, the bill is silent on whether an individual may be required to disclose the mere fact of having undergone genetic testing, which in itself is valuable information.
The bill amends the Canada Labour Code to prevent employees from being required to take a genetic test or disclose results of a test to employers. It further amends the Canadian Human Rights Act to prohibit discrimination based on “genetic characteristics”.
The bill makes it a criminal offence to contravene the operative sections of the proposed legislation. A conviction on indictment would attract a maximum penalty of $1,000,000 and/or imprisonment for a term not exceeding five years. A summary conviction would attract a maximum fine of $300,000 and/or imprisonment for a term not exceeding twelve months.
Constitutionality of the Bill
An important issue facing this bill is whether it is properly conceived as federal legislation. While the criminal law aspect of the bill – the penalties for contravention – are unlikely to face constitutional scrutiny, it can be argued that Bill S-201 seeks to regulate matters falling under the province’s jurisdiction, namely employment and insurance contracts. While Bill S-201 does not make any reference to a specific industry or type of contract, it is conceivable that, if passed, it could face a constitutional challenge on this basis.
The increasing popularization of genetic testing is challenging privacy legislation in new ways. While there are those who argue that the provinces already have the legislative armour to protect privacy interests in genetic testing, it remains to be seen whether Canada will institute protections in a manner similar to the U.S. or the U.K., or adopt a hybrid approach.
[Correction: An earlier version of this article incorrectly stated that the United Kingdom had adopted a legislative approach to this issue.]