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Challenging Gene Patent Law

CHEO reaches ground-breaking deal that changes landscape for genomic medicine

In 2014, CHEO launched a Federal Court challenge against the owners of five gene patents related to the potentially deadly Long QT syndrome.

On March 9, 2016, CHEO announced a deal that ensures Canadian public sector hospitals and laboratories the right to test for Long QT syndrome for Canadian patients.

What’s more, it sets a precedent that will help address the issue of gene patents more broadly in Canadian health care.

In the settlement, the patent holder Transgenomic has agreed to provide CHEO and all other Canadian public sector hospitals and laboratories the right to test Canadians for Long QT syndrome on a not-for-profit basis. The deal defines a pathway for all public Canadian hospitals and labs to conduct genetic testing without legal roadblocks from gene patents.

image of PDF iconRead the settlement agreement

image of PDF iconDownload the standard license agreement that other Canadian not-for-profit entities can enter into with Transgenomic. 

What does this settlement mean for Canadians?

This agreement is a tremendous win for families. We have created a model for recognizing the public interest in genetic testing within the Canadian health care system. As these tests can now be performed in Canada, families across the country will have better, quicker access to the answers and the care they need. This agreement will save lives.

Since health care providers will no longer need to send blood samples to licensed private labs in the United States for testing, patients will get their results faster and start treatment more quickly. Hospitals will also save money, as it is about 50 percent cheaper to perform these tests in the Canadian public sector.

What does this settlement mean for other genetic tests?

This agreement will act as a model for public access to future gene patents so that Canada’s public sector is empowered to provide broad not-for-profit access to cutting-edge genetic tests.

From now on, public hospitals and laboratories can ask patent holders to sign similar agreements allowing not-for-profit access. If the patent holder doesn’t agree, the province can step in and ask the patent office to give it, on behalf those hospitals and laboratories, a compulsory license on the same terms.

The total number of human genes is estimated to be between 20,000 and 25,000. Some of these genes are patented by private companies, the government and individuals.
What does this settlement mean for medicine?

This settlement is great news for the future of Canadian medicine. Freer access to testing will allow geneticists, as well as other physicians and researchers to realize the full potential of genomic medicine, which promises to unlock many medical mysteries, and tailor medical decisions and treatments to a patient’s specific genetic profile.

What is Long QT Syndrome?

Long QT syndrome is a heart rhythm condition that can cause fast, chaotic heartbeats. These rapid heartbeats may trigger a fainting spell, seizure or even sudden death. Every year, about 700 Canadian children and young adults die because of this syndrome.

What are the next steps?

CHEO will continue to press for change outside of the courtroom. There is more that Canada can and should do to be able to fully realize the benefits of genomic medicine.

Why did CHEO take on this legal challenge?

CHEO is a leader in the field of genetic research. We took up this legal challenge because our physicians and scientists felt passionately it was the right thing to do for our patients and families.

CHEO’s Regional Genetics Program

The Regional Genetics Program at CHEO strives to provide answers for every family at all stages of life. Serving a population of approximately 1.2 million in the catchment area of Eastern Ontario, Western Quebec and Nunavut, we see patients of all ages who have a personal or family history of a genetic condition.

We work closely with our patients and families to offer genetic assessment, diagnosis, counselling, and testing in the area of clinical genetics, cytogenetics and molecular genetics. CHEO was recently designated by the Ministry of Health to provide comprehensive genetic testing for inherited heart conditions (cardiomyopathies and thoracic aortic aneurism disorders) for patients across Ontario.
Learn more

Early detection, diagnosis and treatment of a disease can have significant impact on the quality of a child’s life and positive repercussions that extend into adulthood. Any and all means of improving the outcome and quality of a patient’s life must be explored and utilized in order to provide the best patient care.

CHEO is a Canadian leader in the field:

  • Dr. Gail Graham, our Department Chief, is President of the Canadian College of Medical Geneticists (CCMG)
  • Dr. Julie Richer is first author on the CCMG’s patent position statement and Chair of the CCMG Ethics, Education and Public Policy Committee
  • Dr. Kym Boycott leads Care for Rare, the most successful Canadian gene discovery effort in history
  • Dr. Olga Jarinova, our genomics laboratory specialist, has particular expertise in the interpretation of cardiogenetic tests

How was this legal challenge funded?

No hospital dollars have gone towards this legal challenge. CHEO thanks its legal representatives, who provided their services pro bono, as did several leading experts, including Professor Richard Gold of McGill University’s Faculty of Law. Mr. Gold and his team are funded through PACEOMICS, a project supported by Genome Canada, Genome Alberta, Genome Quebec and the Canadian Institutes for Health Research. In addition, CHEO’s physicians and scientists donated their time because they felt so strongly that the court challenge was just.

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