The Genetic Non-Discrimination Act was passed into law on May 4, 2017. We should all be very proud that our community members, in all provinces and territories, now have their genetic test information protected.
For now the GNA is law and the genetic test information of all Canadians is protected. We will continue to ensure the law is not overturned. Some clinicians from the HD Community are making it clear on patient files that genetic 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
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 does this mean for your genetic test information?
Right now, the GNA is law, and that protects your genetic 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 per cent 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.
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.
Updates since July 2017
- 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.
- The Quebec government has now filed a reference with Quebec Court of Appeals. If the Quebec court rules against the GNA, the case will automatically go to the Supreme Court of Canada
- August 24 – CCGF requested Intervener status
- October 5 – CCGF granted Intervener status – no one opposed the application – have been given 90 minutes for oral argument- date to be determined for fall 2018
- Canadian Human Rights Commission (CHRC) were also granted intervener status – they support protecting genetic test information but will not address division of power arguments- CCGF will be working with CHRC to strategize regarding our submissions to the Quebec appeals court
- CCGF is working with lawyers and constitutional experts to ensure the GNA is not overturned.
- Federal Cabinet supports the position of the Quebec Government and have not referred GNA to the Supreme Court, as they indicated they would. They are working through Quebec to make that happen, it seems. Some insurance companies, e.g. Sun Life, are proactively educating and falling in line, others e.g. Manulife continue to fight against the GNA as does the CLHIA (http://insurance-journal.ca/author/susan-yellin/).
- The Canadian Life and Health Insurance Association( CLHIA) also asked for intervener status to oppose the GNA and they have been granted it along with the BC government. We understand that Stephen Frank, the new President of CLHIA, vowed that he will prioritize overturning the GNA.