Dr. Ronald Cohn is the pediatrician-in-chief for Sick Kids Hospital, and he's been receiving calls, emails and visits over the last few months from parents who once denied having their child genetically tested for fear of discrimination.(Rick Madonik / Toronto Star file photo)

By Victoria GibsonStaff Reporter

Wed., Aug. 9, 2017

After a federal bill protecting patients from genetic discrimination passed in the spring, familiar faces began to appear at Dr. Ronald Cohns door.

Cohn is the pediatrician-in-chief for SickKids Hospital, and over the last few months, hes been fielding new conversations with parents of young patients, whove previously sat down with him to discuss genetic testing.

The tests could be recommended for any number of reasons, whether to find the most effective treatment for a known condition or to diagnose a mystery slate of symptoms their child was living through. But, prior to March this year, the results of that test werent legally protected from discrimination, discouraging some parents from giving their consent.

What if their child was later forced to disclose their genetic results to a potential employer, or to an insurance agency? Could they be faced with cripplingly expensive policies? Or denied insurance altogether?

Its paralyzing, it was paralyzing to me, Cohn said. Some of the parents just couldnt get themselves to do it.

But after the Genetic Non-Discrimination Act, or Bill S-201, passed in March ensuring no person can be required to undergo genetic testing or disclose previous results many of those parents are re-appearing at Cohns door.

Theyre asking about the tests, whether theyll really be protected, and whether they can finally begin. Theyre bringing their kids back to the hospital, and getting answers they were scared of before.

As you can imagine, the kind of conversations were having now have significantly changed for the better, Cohn said. Now we can tell parents, you dont have to be concerned about this anymore.

Though SickKids hasnt accumulated any hard data about genetic testing in the five months since the bill passed, Torontos University Health Network has been tracking its numbers for several years. Every year for the last five years, theyve documented a 10 to 20 per cent increase in genetic testing.

Asked about the change since the bill was voted in specifically, Dr. Runjan Chetty, acting medical director of their laboratory medicine program, said that theres been a large increase in genetic tests to determine whether a patient will respond to certain treatment.

Dr. Suzanne Kamel-Reid, chief of the networks three clinical genetics laboratories, believes that rise is part of a larger trend. These increases mirror the increase in genetic and genomic knowledge as well as the increased availability of targeted drugs, she said.

Every day, tests in her labs begin with the arrival of a genetic material sample blood, bone marrow or tissue. Samples often come from hospitals within the network, but not always. Some are shipped in from around the province.

Once the sample is brought into the lab, DNA or RNA is extracted and a hunt for specific biomarkers begins. The biomarkers theyre investigating for any given sample depend on the patients reason for referral or history.

Bill S-201 has the most direct impact on inherited disease testing within the UHN, Kamel-Reid said. When a patient is afflicted with certain symptoms, sometimes the puzzle can be solved by looking at family histories.

Clinical geneticists are the ones that do this. They put the story together, Kamel-Reid explained. They figure out what is most likely going on with the family, and what genes should be tested to solve the mystery.

The results of those targeted tests allow patients to screen early for diseases they may be of particular risk for, which Kamel-Reid says can decrease side effects as well as incidents of the same disease in other relatives.

An individual could alter their lifestyle to avoid developing a disease, or take the precaution of getting screened more regularly than the average patient.

Sometimes you cant even do anything about it, but getting an explanation at least allows you to look for the signs, she said. As Bill S-201 came through parliament, chatter bubbled up in the lab about its implications.

Isnt that a great thing? Everyone should be able to have the testing they require without being afraid, she said. Because knowledge is power.

However, the new law is still on shaky ground. The federal Liberal government has indicated its intent to refer the bill to the Supreme Court to test its constitutionality. Hours before the final reading in the House of Commons, Prime Minister Justin Trudeau called Bill S-201 unconstitutional, that it infringed the jurisdiction of provincial governments.

He recommended that MPs vote against it, but in a free vote, Liberal backbenchers defied Trudeau with a 222-60 vote in the spring. Justice Minister Jody Wilson-Raybould had also made significant attempts to rouse opposition for the bill.

When the bill passed, Cohn said he was hit with emotion. Though it may eventually be challenged in the Supreme Court, inside the halls of Sick Kids, its offering comfort and protection for patients hes spent years with.

Reverting back to how things were, to him, isnt an option. We are watching this closely to make sure that it wont happen.

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Genetic testing back on radar for parents - Toronto Star

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