January 2018 Update
Going to Court to Protect Genetic Fairness
By Julie Stauffer as written in the Winter 2018 issue of Horizon
Last May, the Genetic Non-Discrimination Act (GNA) received royal assent – and for a few brief hours, we celebrated that landmark achievement. The next day, however, the federal cabinet said they would refer the new law to the Supreme Court.
Two steps forward, one step back.
The cabinet hasn’t followed through on that yet, but as we described in the last issue of Horizon, the Quebec government has decided to challenge the new law. If the Quebec court rules against the GNA, the case will automatically go to the Supreme Court of Canada.
Bev Heim-Myers, CEO of the Huntington Society of Canada and Chair of the Canadian Coalition for Genetic Fairness (CCGF), believes this move is probably driven by the insurance industry – and that’s simply not acceptable. “We should not overturn this law and put the interests of the insurance industry above the interests of all Canadians,” she says.
Rest assured, we’re taking action. The CCGF has been granted official intervenor status so that we can argue why the court should uphold a law that received all-party support and the backing of Canadians across the country.
The Canadian Human Rights Commission will also argue in favour of upholding the current law, but British Columbia’s Attorney General and the Canadian Life and Health Insurance Association will take the other side.
We’re working with our lawyer in Quebec to prepare for our 90 minutes of oral arguments this fall. If the case ends up going to the Supreme Court, we’ll continue our vigorous advocacy there. “We are not going to give this up,” says Bev. “This is much too important for all Canadians.”
In the meantime, what does this mean for your genetic test information?
Right now, the GNA is law, and that protects your genetic test information, no matter where in the country you live.
If the law ends up being overturned – something we’ll be working very hard to prevent – any test results you get between now and then will probably stay protected, according to the experts we’ve talked to. Unfortunately, that’s not one hundred percent guaranteed.
As a measure of protection, we’re suggesting healthcare providers put a note on your file with the date of the results and instructions not to share them with anyone without your explicit written consent.
Ultimately, every person who is considering genetic testing will need to decide for themselves whether now is the right time to go ahead.
“This is far beyond the interests of the insurance industry,” says Bev. “They have survived in other jurisdictions that protected genetic test information. The GNA is about protecting your genetic information from employers, landlords, schools or anyone who chooses to use it against you.”
For now, your genetic test information is protected. Help keep it that way! Let your MP and the Prime Minister know how important this is to you. Write them a letter to ask them to honour Canada’s new Genetic Non-Discrimination Act and protect the interests of Canadians across the country.
November 2017 Update
The Genetic Non-Discrimination Act (GNA) was passed into law on May 4, 2017. We should all be very proud that our community members had the courage to tell their stories and influence the protection of genetic test information for all Canadians.
For now the GNA is law and the genetic test information of all Canadians is protected. We will continue to advocate for this law so it is not overturned. Some clinicians from the HD Community are making it clear on patient files that genetic test information is protected and not to be shared without explicit written consent of the patient. In your communities this may be a good suggestion to health care professionals.
Genetic Non-Discrimination Act (GNA)
The GNA’s prohibitions apply not only to providers of goods and services, but also to anyone entering into or continuing a contract with a person. This would include (among others) all employers. So anyone entering into or continuing a contract with someone is not allowed to require the person to take a genetic test or to disclose the results of a previous or future genetic test.
GNA also prohibits providers of goods and services, and anyone entering into or continuing a contract with a person, from collecting, using or disclosing the person’s genetic test results without that person’s written consent. This is another basic protection of the law, in addition to the protection against someone requiring a person to take a genetic test, or disclose the results of a prior/future genetic test.
Amendments to the Canada Labour Code and the Canadian Human Rights Act
Amendments made to the Canada Labour Code, provide an extra layer of protection for employees of federally-regulated industries however all employees and potential employees are protected by the basic prohibitions of GNA.
Amendments made to the Canadian Human Rights Act (CHRA) have added genetic characteristics to the CHRA.
This is a good news story for all Canadians. For now our genetic test information is protected and Sun Life insurance is holding training sessions across Canada to educate their brokers and sales force regarding new activity under the new legislation of GNA. (Others may have as well, we just haven’t heard about it).
Sun Life shared the following:
As it stands now at Sun Life, there can be no questions asked whether or not you have had a test or are having a test for HD (or any other genetic disease). If the underwriters find the results of a genetic test in an applicant’s medical file they are being told to disregard the test (and results) all together.
Applicants would still have to disclose certain family history questions but no more than what every other applicant would have to answer. They would have to answer questions about their own health but only pertaining to symptoms and diagnoses. Also, if there is no official diagnoses on a parent or sibling they would not be required to answer any questions related to that disease (i.e. My brother tested positive for the HD gene would not be required to be divulged or even asked on an application).
What can Canadians do?
Our communities need to let their MPs know that this was a great example of the people being heard by our government and the decision to provide pan-Canada protection for genetic test information should not be overturned by anybody.
July 2017 Update
- Today the Genetic Non-Discrimination Act stands and is law, as are the amendments to the Labour Code and the Canadian Human Rights Act (CHRA). The genetic test information of those living anywhere in Canada is robustly protected at this point in time.
- Quebec government has decided to challenge the new law. If the Quebec court rules against the GNA, the case will go to the Supreme Court of Canada.
- The CCGF has been granted intervenor status so that we can support the GNA in the Quebec Court of Appeals.
- The Canadian Human Rights Commission will also argue in favour of the GNA.
- British Columbia’s Attorney General and the Canadian Life and Health Insurance Association will not support the GNA.
- We continue to work with our lawyer in Quebec.