Lianne Appleby

Huntington Society of Canada Fall 2018 Horizon Article

Genetic Fairness Update

By Bev Heim-Myers, Chair of CCGF, as written in the Fall 2018 issue of Horizon

Things are slowly heating up with the Genetic Non-Discrimination Act (GNA) and the Quebec referral to the Quebec Court of Appeals.

Over the last few months I have been working closely with lawyers Bruce Ryder in Toronto and now William Colish in Quebec, to move our legal documents forward. Senator Cowan and Barbara Kagedan, even though retired, continue to support and educate regarding the GNA.

Recent Activity:

  • August 2017 – CCGF granted intervenor status in the matter of the Reference of the Government of Quebec concerning the constitutionality of the GNA. CCGF will support the GNA along with the Canadian Human Rights Commission. The Attorney General (AG) of Canada, AG of British Columbia and the Canadian Life and Health Insurance Association (CLHIA) have all also been granted intervenor status, but will challenge the GNA.
  • April 2018 – Doug Mitchell appointed Amicus for GNA – he will support the legislation
  • April 2018 – Affidavits submitted to Quebec Court of Appeals
  • May 2018 – Paper published in Canadian Medical Association Journal (CMAJ) – Authors: Dr. Yvonne Bombard and Bev Heim-Myers
  • June 2018 – CCGF Factum submitted to Quebec Court of Appeals

Next Steps:

  • Verbal arguments will be scheduled during the week of December 10, 2018 at the Quebec Court of Appeals in Montreal.
  • Until further notice, the GNA is law in Canada and the genetic test information of all Canadians is protected. We are working with the provinces to influence the strengthening of provincial Human Rights Acts and Provincial Labour laws, to include the protection of genetic test information provincially. This is not mandatory given the robust GNA, however, it will offer options in the future for individuals who have been discriminated against.

Huntington Society of Canada Spring 2018 Horizon Article

Genetic Non-Discrimination Act (GNA) Update

By Julie Stauffer as written in the Spring 2018 issue of Horizon

For now, the Genetic Non-Discrimination Act (GNA) remains law and your genetic test information is protected. It is a criminal offence for a service provider or anyone entering into a contract with you to require or compel you to take a genetic test or to provide your results of a genetic test. The GNA also makes it a criminal offence for a service provider or anyone entering into a contract with you to collect, use or disclose your genetic test results without your explicit written consent. Service providers or parties entering into a contract with you, include but are not limited to, insurance providers, landlords, adoption agencies, employers, schools and more. The act sets out a maximum penalty of a fine of $1 million or possible imprisonment up to 5 years.

The Quebec Government referred the GNA to the Quebec Court of Appeals and they are challenging the constitutionality of the legislation. There are others that support Quebec’s position including the Attorney General of Canada, Attorney General of BC and the Canadian Life and Health Insurance Association (CLHIA). The Canadian Coalition for Genetic Fairness (CCGF) and the Canadian Human Rights Commission have been given intervenor status to support the GNA, and the Chief Justice of Quebec has also appointed an amicus (impartial advisor) to support the legislation. We will continue to fight for the GNA during the Quebec appeal and (if necessary) the Supreme Court of Canada. Timing for the oral arguments at the Quebec Court of Appeal will be determined in the fall of 2018.

What does this mean for you? At this point in time, the GNA remains law and your genetic test information is protected by the prohibitions stated above.

This historic law is a huge step forward and will enable all people living in Canada the opportunity to make informed life decisions regarding health and reproduction, without fear of genetic discrimination. This legislation also enables Canada to remain as a leader in genomic research. The HD community played a significant role in moving this mountain forward. We are doing everything we can, working with several incredibly dedicated
stakeholders, to ensure the genetic test information for all people in Canada continues to have comprehensive protection provided by the GNA.

Huntington Society of Canada Winter 2018 Horizon Article

Going to Court to Protect Genetic Fairness
By Julie Stauffer as written in the Winter 2018 issue of Horizon

In May 2017, the Genetic Non-Discrimination Act (GNA) received royal assent – was passed into law – 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 of Appeals 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, the Attorney General of Canada, and the Canadian Life and Health Insurance Association will take the other side.

We’re working with our lawyer to prepare our written submission and oral arguments to the Quebec Court of Appeals. 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.

The Genetic Non-Discrimination Act – As of July 2017

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.

What does this mean?

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. 

Insurance

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 recently 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).

Updates since May 4, 2017

  1. On May 31st the Government of Quebec adopted the decree directing the Minister of Justice to file a reference before the Court of Appeal in Quebec, it was published in the Gazette on June 21st. As we understand it the Quebec reference has now been filed. If that is the case the Canadian Coalition for Genetic Fairness will be responding before August 25, 2017 .
  2. Right after 3rd reading and passing of Bill S201 the Minister of Justice, Wilson-Raybould, indicated that she would request Cabinet to refer the Genetic Non-Discrimination Act (GNA) to the Supreme Court of Canada after it went through the parliamentary process.  To date Cabinet has not yet referred the GNA.  Recent correspondence from the Justice Minister’s office indicates that they still oppose the GNA but agree with amendments to the CHRA and they plan to lead discussions with provincial and territorial governments to address the many issues surrounding the use of genetic information.
  3. The insurance industry is still fighting.  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/).
  4. 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.  We are however, prepared to intervene, with legal support, at the Quebec Court of Appeal and the Supreme Court of Canada, if necessary.

Bill S-201 Update: First Hour of Debate – February 14, 2017

Let your MPs know. It’s time to do the right thing. #PassBillS201

On February 14, 2017, Bill S-201 was debated in the House. In December, the Bill was sent back to the House with unanimous support by the Standing Committee on Justice and Human Rights, as is, with a minor technical amendment.

The debate began at 6:30 p.m. and started with MP Randy Boissonnault, from Edmonton, tabling amendments that gutted all aspects of Bill S-201 except the amendment to the Human Rights Act.  MP Boissonnault is a newly added member to the Standing Committee on Justice and Human Rights and was not present for the hours of testimony, from many experts, supporting the need for the robust protection that Bill S-201 provides for genetic test information. The insurance and actuarial industries also provided their expert opinions for consideration at the standing committee hearings.

Six others spoke during the debate, including MP Housefather, Chair of the Standing Committee on Justice and Human Rights, other standing committee members, MPs, and Rob Oliphant. All expressed support for Bill S-201, as it stands. Many also stressed the importance of Canada’s legislation catching up to other Western countries to protect genetic test information, so that Canadians can get lifesaving genetic tests without fear.

The 1st hour of debate continued until 7:30 p.m. and the 2nd hour of debate will continue on March 8, with 3rd reading scheduled on March 22nd.

MPs from all parties support Bill S-201. Bill S-201 is an appropriate robust solution for an important human rights issue and is also supported by the Chief Commissioner of Canadian Human Rights. Bill S-201 is not fully supported by the Liberal Cabinet Ministers (although it was stated that they agree in principle that genetic test information should be protected).

Insurance seems to feel it is their right to have access to our genetic test information and they have lobbied strong and hard to keep that access.  The body of evidence overwhelmingly supports robust pan-Canada protection of genetic test information, yet it seems influence by the Insurance Industry, on our Federal and Provincial governments, has potential to negatively impact all Canadians.

We should all remember that this is far beyond insurance. Protecting genetic test information will actually improve the health of Canadians as they make informed choices to diagnose, prevent and treat disease. Employers, adoption agencies, landlords and schools will not be able to use genetic information against Canadians, if Bill S-201 is passed as supported by the Standing Committee on Justice and Human Rights.

If Bill S-201 is gutted, less than 10% of Canadians will have recourse if they experience genetic discrimination. The danger is that more than 90% of Canadians may think they are protected and they will not be.

Thank you for your continued efforts to contact our MPs reinforcing that it is critical to pass Bill S-201, as is, without the newly introduced amendments of Feb. 14, 2017. We are the voice of Canadians and that voice needs to be heard loudly.

Let our MPs know that you expect them to do the right thing; pass Bill S-201 as it stands, including the Genetic Non-Discrimination Act (GNA), amendments to the Canadian Labour Code, amendments to the Canadian Human Rights Act and the technical amendment added by the Standing Committee on Justice and Human Rights. Genetic test information must be robustly protected now!