Genetic testing for cancer helps women make choices

Be glad that in Canada, medical insurance covers such tests

I am seated at a large table in a small, quiet conference room at North York General Hospital, watching a PowerPoint presentation about my likelihood of someday becoming a cancer patient. The woman giving the presentation has done it so many times that one of the other women in the room asks her to slow down a little.

When I first approached my doctor about getting a genetic test done, he shook his head bemusedly and said: “You can’t get it.” I suspect he thought I was just one more in the throng of women inspired by Angelina Jolie’s choice to have a preventive double mastectomy and oophorectomy after learning that she was carrying a damaged copy of the BRCA1 gene.

All humans have the BRCA1 gene — a tumour-suppressor, according to the presentation I saw — but some of us have faulty copies of it. For those with a faulty BRCA1 or BRCA2 gene, the tumours often start in the breasts or on the ovaries.

“My mother, her sister, and their grandmother all had breast cancer,” I told him.

“Oh,” he said. “You can get the test.”

A few years ago, I had considered being tested directly by 23 and Me, a Google-funded Silicon Valley startup that promised to tell its customers everything from whether they were likely to get breast cancer to where their longlost relatives were, all based on a cheek swab.

I bought the kit. I swabbed my mouth. I sealed the envelope. And then, a week later, the U.S. Food and Drug Administration banned the tests, claiming that the company had not provided enough information about how accurate the tests were. I never mailed in my kit. Now I wish I’d just sent it anyway. And if the FDA continues easing restrictions, I may just. Because according to the genetic counsellor I spoke with, I don’t qualify for a genetic test unless my mother gets one first. The reasons for this are simple and logical: My mother is the one who had cancer, and therefore whatever gene expression precipitated that cancer will show up on her panel. If we know that she has a faulty copy of the BRCA1 or 2 gene, we know there’s a 50-per-cent chance that I have it, too. The one problem? My mother lives in the United States. Unlike me, her test won’t be covered by OHIP. In the U.S., genetic counselling is not covered by Medicaid or Medicare. And genetic testing itself can cost thousands of dollars. So while the system works if your entire family lives in Canada, Canadians with family members outside the country may be out of luck.

With that said, I’m much better off than many of my American cousins — all of whom should also be tested. Because of my family’s history, I’m now part of the Ontario Breast Screening Program. That’s a huge weight off my mind, and I’m happy my counsellor connected me with the program. And thanks to my appointment, I now know that those genes might not even be to blame. The additional presence of lymphoma and kidney cancer in my family tree means I might have a malfunctioning copy of TP53, another gene that carries instructions for tumour suppression, and the one that is most frequently altered in cancer patients.

Now that I know this, I can begin planning for longterm and cancer care. And I, and other women like me, should do that before testing, because there is no regulation in Canada for how health and life insurance plans can use the results of genetic tests. There is no law against genetic discrimination in Canada. Providers can be as predatory as they like. And that risk, like our genes, is something I share with American family.