Genetic anti-discrimination law protects patient privacy without sacrificing research

An unusual vote in the House of Commons that saw Liberal backbench MPs defy the prime minister and his cabinet by uniting with opposition parties to pass a bill outlawing genetic discrimination has come as a relief to Clare Gibbons.

“I’m so happy and pleasantly surprised, because when you’re looking at it, you’re not sure which way it’s going to go,” said Gibbons, a genetic counsellor at Toronto’s North York General Hospital.

Bill S-201, the Genetic Non-Discrimination Act, prohibits anyone from requiring a person to undergo or reveal the results of a genetic test as a condition of employment or before selling that person a good or service, such as life or disability insurance. The maximum punishment for breaking the law is a fine of $1,000,000 and/or imprisonment for five years.

In 2014, Gibbons was called to testify before the Senate standing committee on human rights where she urged the government to pass the bill.

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Gibbons said the legislation will protect the patients she sees from the potential repercussions of genetic tests, which can uncover disorders that might never develop into disease yet could limit patients’ access to life insurance or employment.

“There were some people who were fearful enough that they declined testing because of their concerns,” she said.

Those patients included people who have a family history of certain inheritable cancers or Huntington’s disease. 

“Now, I think some of that fear that was holding people back should be alleviated,” she said.

‘I can tell you it was a very emotional moment watching it on TV.’
– Dr. Ronald Cohn

The Wednesday evening vote in the House of Commons marked a rare passage of a private bill from the Senate.

The vote was monitored closely by Dr. Ronald Cohn, chief of pediatrics at Toronto’s Sick Kids Hospital.

“I can tell you it was a very emotional moment watching it on TV,” he said.

Cohn was outspoken in advocating for the introduction of the law shortly after he moved to Canada in 2012 from the United States, which already had similar genetic anti-discrimination legislation in place, known by the acronym GINA. Some of those protections could now be repealed by Congress after pressure from employers to gain access to employees’ genetic information for workplace wellness programs.

Cohn said he found it difficult to treat young patients whose parents declined genetic testing that could offer a clear diagnosis because of privacy concerns.

“This was sometimes paralyzing to me to sit there and know that I was providing sub-par clinical care,” he said. “The fact that I hopefully don’t have to make this a topic of conversation any more is a significant game changer for the way I and many others practise medicine. “

Patient privacy

The protection of a patient’s genetic information had become increasingly urgent, “because we have significantly more genetic tests than we had three, five and 10 years ago.”

Those tests now include sequencing of the entire genome, the next generation of standard diagnostic testing. 

Whole genome sequencing analyzes a person’s entire DNA sequence and compares it to a standardized reference sequence. Mismatches are signs of genetic abnormalities.

Cohn is also involved in using the innovative gene-editing tool known as CRISPR. 

He says the new legislation will ensure genetic research can continue without sacrificing a patient’s right to privacy.