CHEO has launched a legal challenge against gene patents in order to protect patient care - November 2014
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As a leader in
genetics in Canada, CHEO is working to map out the future of medicine…and in
doing this work, we are impeded by a significant obstacle.
CHEO is launching a
legal challenge to test the validity and scope of genes patents.
Our position is
Our clinicians and
scientists believe that no one should be able to patent human DNA.
- It would be like patenting water or air
This is important
- It impacts the future
- It impacts patient access to their own information
- It impacts quality of care
We are making our
case with Long QT syndrome, but Long QT syndrome is just one of thousands of
genetic conditions or diseases.
CHEO 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 areas of
clinical, biochemical, cytogenetic and molecular genetics. Learn more
What is this legal challenge about?
The legal firm of Gilbert’s LLP filed a case on behalf of CHEO in the Federal Court of Canada that is the first case in Canada to address whether human genes can be patented. Patients have a right to know whether they have genetic disorders, and patents should not stand in the way.
The patents involved in the case relate to five human genes that have been linked to Long QT syndrome - a rare heart disorder. In the view of CHEO and its lawyers at Gilbert’s LLP, genetic information is not patentable. Learn more
Other medical leaders in Canada are speaking out in support
- “Patenting of naturally occurring gene sequences threatens the advancement of clinical care. It limits Canadians’ access to genetic diagnoses, many of which have the potential to be life-saving. It is critical that the validity of patents be challenged for the sake of the public good. The Canadian College of Medical Geneticists recognizes the importance of this initiative and strongly supports it.” - Marsha Speevak, President, Canadian College of Medical Geneticists
- "Medical genetics has the potential to improve both diagnosis and treatment of patients with diseases ranging from cancer to diabetes to heart and neurological conditions. The current uncertainty over the patenting of human genes in Canada is not healthy for the research community or the delivery of healthcare. Seeking clarity on this issue is important.” - Sandra MacPherson, Board Chair, Canadian Gene Cure Foundation
Our clinicians feel passionately that this is the right thing to do for our patients and families. We at CHEO are far more comfortable delivering patient care in the exam or operating room than in the court room, but this question is far too important to be left unchallenged. This is about protecting the future of medicine.
This legal challenge is guided by, and speaks directly to our vision – removing gene patent barriers will change young lives in our own community and beyond; and our very own innovation in genetic medicine will change young lives around the world.
Early detection, diagnosis and treatment of a disease can have significant impact on the quality of a child’s life with 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.
In this area, we are a Canadian leader:
- Dr. Julie Richer is first author on CCMG patent position statement
- Dr. Olga Jarinova, Associate Head and Genomics Lead, Genetic Diagnostic Laboratory, has particular expertise in the interpretation of cardiogenetic tests
- Dr. Kym Boycott leads the most successful Canadian gene discovery effort
- Dr. Gail Graham, our Department Chief, is soon to be President of the CCMG
How is this legal challenge being funded?
No hospital dollars have gone towards this legal challenge. We are very fortunate to have the legal firm of Gilbert’s LLP donate their services for free. We are also grateful to have the support of the McGill team in the PACEOMICS research project funded by Genome Canada, Genome Alberta, Genome Quebec and the CIHR, in respect of policy development, identifying international experts and community engagement.
In addition our own physicians and scientists have donated their time because they feel so strongly that challenging gene patent laws is the right thing.
- CHEO has filed a motion for a “protective costs order” on December 12th, 2014. If granted, it would mean that each side would be responsible for their own legal costs.
We are hopeful the courts and patent holders will warmly consider this motion, since the legal challenge is truly in the public’s interest.
CHEO has not structured this lawsuit in order to gain financially and therefore we should not be required to risk losing financially, as the hospital would never let patient care suffer.