Fredericton mother ready for genetic disorder testing when law passed

Fredericton mother ready for genetic disorder testing when law passed

A young Fredericton mother says she plans to undergo testing to determine whether she has a rare genetic disorder when a federal bill prohibiting genetic discrimination becomes law.

Crystal Fitzherbert, 34 almost died from a pulmonary embolism two years ago. Two of her sisters have also had life-threatening blood clots and they're all on blood thinners.

The mother of one says a specialist has told her sister there is no doubt they have a disorder that causes the life-threatening blood clots but without further testing it's not clear what treatment could help. 

To date, no one in her family has wanted to have the genetic testing for themselves or their children, fearing they'll face discrimination from employers or insurance companies. 

"I would love to have it done to know what's going on so maybe I could have my life back," Fitzherbert told CBC New Brunswick host Harry Forestell.

Watched vote

The young mother is hopeful the bill passed by MPs in the House of Commons Wednesday night will eventually become law.

As she watched the vote, MPs of all stripes defied the Trudeau government to pass the bill.

Bill S-201 will add genetic characteristics as a protected ground under the Canadian Human Rights Act, introduce penalties for discrimination, and forbid employers from subjecting job applicants to a genetic test.

The legislation will also allow people to refuse to disclose the results of a genetic test to anybody. Medical experts have said the legislation is necessary to counter the fears associated with potentially life-saving genetic testing, which could produce results that would help doctors better tailor health treatments.

A breach of the law could result in a fine of up to $1 million, or five years behind bars.

"That reasoning to not do the genetic testing is gone," said the young mother when asked how she felt about it.

Fitzherbert pointed out no one can help what they are born with and to be discriminated against because of it is wrong.