Vidalia Botelho wants to know if she carries the mutated breast cancer gene, but is afraid of what it would mean to her insurance rates if she does.
The Gatineau, Que., resident was diagnosed with breast cancer in 2014 and underwent a double mastectomy, as well as chemotherapy and radiotherapy.
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There's no breast cancer in her family, but confirming whether she carries the mutation could help her and her children make more informed decisions
Mutations in the breast cancer genes (BRCA1 and BRCA2) can increase the risk of prostate cancer in men and pancreatic cancer in both men and women. For women, it can also increase the risk of developing ovarian cancer as well.
"I still have my ovaries," said Botelho, an active runner who doesn't drink or smoke.
"If I did genetic testing, I could decide yes or no, on whether to keep them."
Currently , insurance companies in Canada can demand to see the results of people's genetic tests before insuring them.
The Senate is currently considering Bill S-201, also known as the Genetic Non-discrimination Act, which would keep this information private — exactly what Botelho would like to see.
Botelho had health insurance prior to her cancer diagnosis, but was told if she decided to be tested, she'd have to reveal those results.
Her premium wouldn't change unless she tried to modify her plan or applied for insurance through another company.
"In which case, they said, I would probably be declined or pay a higher premium," said Botelho. "I find that discriminatory. Genes are part of your DNA. You can't control that."
Botelho said insurability fears have kept her 23-year-old daughter from getting tested — for now.
Both males and femailes can inherit a mutated BRCA gene from either parent.
Thoe who have the mutation can pass it on to their children. If one parent has the mutation in one of the two copies of the BRCA gene, a child has a 50/50 chance of inheriting it.
"If she knew she carried the genes or one of the genes, she can take measures to prevent it or have a closer medical followup," said Botelho. "She could decide to go right away with a mastectomy rather than waiting for the illness to develop."
Botelho said being proactive is a win-win for everyone: employers, the medical system and society.
Knowledge is power
Brittnee Sheridan's family history convinced her to get tested.
Her grandmother had breast cancer twice, and her mother and aunt also tested positive. Genetic testing revealed she did have the BRCA gene mutation.
Sheridan knew the risks of having genetic testing — potential problems getting a job, life insurance or critical illness or disability insurance — but she felt it was worth it.
"My grandmother was terrified of me finding out, and it shouldn't be that way," Sheridan recalled.
She got the test as soon as she turned 18.
"Knowledge is power," she said.
Since her diagnosis, Sheridan has revamped her life. She joined a gym, lost weight and changed her diet. She is closely monitored by her doctor and is tested more often so the disease, if it develops, can be caught in the early stages.
'Chilled to the core'
When Bill S-201 was last debated, Sheridan heard testimony from doctors who said patients would often forgo genetic testing because they were worried about the future consequences — both for themselves and their children.
"I was just chilled to the core," said Sheridan, a law student at the University of Ottawa. "I can't even imagine delaying testing."
Five years later, she still doesn't regret getting tested.
"You may not have a life if you don't get tested and aren't proactive."
The Canadian Life and Health Insurance Association said having access to genetic tests is imperative. Without it, future risk is hard to predict.
"Our concern is when a person gets the medical results that shows they have these serious risks, and then they want to come to the insurance company and say give me insurance, but I won't tell you about my health conditions," said Frank Zinatelli, the association's vice-president and general counsel. "That's not the way it works."
Zinatelli said recent studies by the Canadian Institute of Actuaries show a dramatic spike in rates for both life and critical illness insurance if insurers were no longer privy to test results.
He also points out that if people buy their insurance before they have a genetic test, the results don't affect the insurance they already have in place. His advice is to get insurance while you're healthy.
The bill was referred to the Senate's human rights committee Wednesday and if there are hearings, the insurance association says it will be there.
If the bill moves on to third reading quickly and passes, it would be referred to the House of Commons. Members of Parliament would then decide whether to make it legislation.