CHEO reaches 'historic' settlement with gene patent owner

The Children's Hospital of Eastern Ontario says it will be able to save lives and money after settling a legal dispute with the American owner of gene patents related to a potentially deadly heart disorder.

• U.S. gene patents: Patient care stymied in Canada, hospital claims

The company, Transgenomic, has agreed to provide CHEO, and all other Canadian public sector labs and hospitals, the right to test Canadians for the condition — known as long QT syndrome — on a not-for-profit basis.

"This is a historic day for CHEO, and it is a historic day for Canada and Canada's health care system," said CHEO head Alex Munter.

"Thanks to this agreement, we have now opened up a whole new channel, a whole new way that Canada can lead the world in making sure that patents on genes do not present an obstacle to care and to research."

​In 2014, lawyers for CHEO challenged the legality of gene patents in Federal Court in Canada, arguing genes and other segments of the human genome should not be subject to patents for commercial or any other purposes.

At issue were five specific patents Transgenomic held related to long QT syndrome, which prevented doctors in Canada from screening patients at CHEO because the U.S. company patented the tests and the genes.

'Patents will no longer stand in the way'

Long QT syndrome is an inherited heart rhythm disorder that is treatable, but can result in sudden death unexpectedly in otherwise healthy young people.

Dr. Gail Graham, chief and clinical geneticist at CHEO, believes being able to test for the disorder in Canada will cost half of what it did to send genetic material to a U.S. lab for screening.

"Cost is important, we all know that, we're a publicly funded system," Graham said. 

"I think the importance of this agreement is not just in its potential to save costs, but really it's the broader principle that patents will no longer stand in the way from our patients being able to benefit from transformative genomic technologies with respect to their health care."

'The potential to save lives'

Micayla Ahearn first learned had long QT when she went into cardiac arrest at age 19. Now 27, she's pleased with this settlement.

"It means to the best care possible," she said. "The potential to save lives."

CHEO's lawyers say the the new agreement will act as a model for public access to future gene patents — and Ahearn believes that potential is huge.

"On a bigger level, it's a complete shift in an approach to how we move forward with genetic testing," she said.

"Instead of keeping it dichotomized between patenting companies and public health delivery, they're actually synthesizing them in a way that benefits everybody. And I think that that's fantastic on a national and international level, as well."