Parliament debating legislation to curb genetic discrimination

While genome analysis can alter the very practice of medicine, there is a fear it can be used to discriminate on the ground of genetic characteristics

By Paul Boucher
and Juliet Guichon
Contributors
Troy Media

CALGARY, Alta. March 8, 2017 /Troy Media/ – Doctors are frequently demoralized when they believe their patient has a treatable disease or condition but the patient won’t take the diagnostic test.

For example, patients suspected of being HIV positive have refused the diagnostic blood test because they feared being discriminated against.

genetic discrimination
Paul Boucher

In the much broader context of genetics, this problem arises daily as people refuse genetic tests because of fear of discrimination. In Canada, an insurance company, an employer or someone else can demand to see your genetic test results and then use that information against you. No federal or provincial law exists to prevent that.

All other G7 countries have enacted protection against genetic discrimination: France in 2002, Italy in 2004, the United States in 2008, Germany in 2009, the United Kingdom in 2010 and Japan in 2015.

Canada’s proposed legislation will come before Parliament again this week. Bill S-201, The Genetic Non-Discrimination Act, would make it an offence to require people to undergo a genetic test or to disclose the results of a genetic test as a condition of providing goods or services, or entering into a contract.

The bill would also amend the Canada Labour Code to protect employees in federally-regulated workplaces from being forced to have or to disclose genetic testing. And it would amend the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics.

Canadians should encourage members of Parliament to vote in favour of the bill.

genetic discrimination
Julie Guichon

This legislation promises to remove the major barriers to genetic testing at a time when the field is experiencing rapid growth. In 2003, approximately 100 genetic tests were available to identify particular diseases. When Bill S-201 was first proposed in April 2013, there were 2,000 tests, last year there were 32,600 and today there are 49,064.

Such growth will sharply reduce the costs of medical care. Genome analysis has moved from research to clinical care. Its presence has begun to permit treatment and drugs to be tailored to individuals. And it is now possible to screen people to prevent disease. Genetics now has the potential to alter the very practice of medicine.

The insurance industry claims that the bill is not within the power of the federal government because it attempts to regulate industry.

Quebec, Manitoba and British Columbia all argue that the bill relates to matters within provincial jurisdiction.

But concerns that the bill might be unconstitutional have been addressed by three experts called by the Commons justice committee, including Peter Hogg, a leading constitutional expert.

Hogg told the committee that the bill falls within the federal government’s criminal law power because it has the necessary elements: a prohibition, a penalty and a criminal purpose, which is to prohibit and prevent what Parliament regards as the evil of genetic discrimination.

Hogg noted that a federal law to prohibit genetic discrimination offers the distinct advantage of a nationwide rule. Although no province or territory believes in genetic discrimination, each has its own legislative priorities and has not acted on the issue, and might not have plans to do so.

The objections of the insurance industry and of some provinces are important but not determinative. Just as when other forms of discrimination became illegal, industries and employers will adjust. If some provinces seek to challenge the legislation in court, then the federal government can meet them there.

This is a defining moment for this government. By helping people to access genetic testing, the government will advance diagnosis, treatment and prevention, and make Canada a hospitable environment for genomic research. Genomic medicine will prove at least as great an advance as the discovery of vaccines and antibiotics.

The Genetic Non-Discrimination Act will herald a new era of medical research and practice in Canada.

Paul Boucher is a critical care physician and Juliet Guichon is a legal scholar. They teach in the Cumming School of Medicine, University of Calgary.

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