The Canadian Parliament recently passed Bill S-201, the Genetic Non-Discrimination Act, which
protects individuals from having to disclose information related to
genetic testing and test results. Specifically, the Act
prohibits any person from requiring an individual to undergo a
genetic test or disclose the results of a genetic test as a
condition of providing goods or services to, entering into or
continuing a contract or agreement with, or offering specific
conditions in a contract or agreement with, the individual.
Contravention of the Act is punishable by significant
fines and even potential imprisonment. There are express exceptions
for health care practitioners who are providing health services to
patients and researchers who are collecting information from
participants in medical, pharmaceutical or scientific research.
In addition, the Act amends the Canadian Human
Rights Act to prohibit discrimination on the ground of genetic
characteristics. The Act also 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.
Parliamentary debate concerning Bill S-201 focused on the
potential misuse of genetic testing results by employers and
insurance companies with representatives of the insurance industry
having expressed concerned about the asymmetry in information
available to insurers and the insured.
The bill was passed, despite concerns expressed by the Prime
Minister that certain elements were perceived to be an
unconstitutional intrusion on the provincial jurisdiction over
health care. The Act is now awaiting royal assent.
The Genetic Non-Discrimination Act, once it receives
royal assent, will prevent Canadians from having to undergo, or
disclose the results of, genetic testing to their insurers, or
others. Supporters of the new legislation believe that this will
remove perceived obstacles to genetic testing such as fear that the
results of that testing will be used to discriminate against the
patients. Canada's legislative initiative on genetic
testing is similar to the U.S.
Genetic Information Nondiscrimination Act. Restrictions on the
use of genetic test results have also been adopted in certain
European jurisdictions, including France. The Association of
British Insurers and government in the U.K. adopted a Concordat and
voluntary moratorium limiting the use of genetic testing by
insurers. Other countries have yet to address the issue. The
evolving global quilt of responses to this issue indicates that a
global consensus has yet to emerge.
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