Thank you very much, Mr. Chair, and honourable members.
Thank you for inviting the Canadian Coalition for Genetic Fairness, and, indeed, all Canadians, to have their voice heard here today. I truly appreciate it.
I'm going to focus on three areas: the fear of and examples of genetic discrimination, the evidence-based research, and the impact of not protecting genetic test information.
Let's start with the stories.
A young mother expecting her second child was approved for life insurance. Before she received her policy, she found out that her own mother was diagnosed with breast cancer and was subsequently found to have the BRCA gene. This young mom notified her insurance company to let them know that she too wanted to be tested for the BRCA gene so that she could inform her health decisions going forward, and her insurance was rescinded.
A graduating chiropractor applied for life insurance so that she could practise after she graduated. She was initially denied because she was from a Huntington disease family until she proved through a genetic test that she in fact did not have the gene. She reluctantly had a genetic test and does not have the mutation, but the story continues. Five years later, when she was given the opportunity to buy into the practice, the insurance industry said she had to get another genetic test to prove she still did not have the genetic mutation for Huntington disease. Finally her physician stepped in and said, “This is a waste of health care dollars. She doesn't need another test”. However, then her family stepped in and said, “Please stop talking to the media, because we're now getting questions from our employers. Please stop telling them about your experience.”
In Toronto, Ontario, the landlord of a supportive housing site has been asking tenants to provide medical information, including genetic test information. The landlord has approached current tenants directly to ask for this information and is holding back other privileges, like using the common room, until they provide that information. It is unclear why the landlord is asking, but it clearly sets a very frightening precedent.
A gentleman from Ottawa in his fifties was recently diagnosed with frontotemporal dementia. He would like to participate in clinical trials to try to find answers for this disease. His children are in their twenties and are furious at him for even considering getting tested and participating in clinical trials, for the impact it may have on them down the line. This has created a division in the family at a time when he really needs support from his children.
A young man, who was upset at work one day after receiving genetic test results that he had the Huntington disease mutation—although he won't manifest for 20 years—was asked by his employer, “Why are you so upset today?” He told his employer that he had the gene mutation, that he'd be okay for 20 years, but he had to figure out his life. That was on a Friday. On Monday morning this young man went into work and was fired. The employer said he was fired because he was worried for his equipment. The young man was a web designer. To this day he's afraid to apply for another job, and he's 22 years old.
Yesterday, I received a note from an individual wanting to help and support the coalition. When I asked her if she herself had experienced genetic discrimination, she answered, “Thankfully, no, but I would like to move back to Canada and work in the field of genetics, which at this point in time is at a standstill until Canada protects genetic test information.”
Allowing genetic discrimination to occur creates a barrier to personalized medicine. Dr. Yvonne Bombard has published many papers on genetic discrimination, and the impact it has on behaviours. In a recent paper she found that 86% of people in the HD community fear genetic discrimination for themselves and their family members. Fifty per cent of them have experienced genetic discrimination.
In another paper focusing on personalized medicine, Dr. Bombard concludes, “Individuals' concern about genetic discrimination can create barriers to access to genetic services that may offer them important therapeutic or management opportunities, and can result in suboptimal care for those who undergo genetic testing under conditions of anonymity or aliases.”
In other words, genetic discrimination is a barrier to the health and well-being of people living in Canada because people do not seek out the information in order to make informed health decisions.
Pharmacogenetics is a science that can provide life-saving information, eliminate potential adverse drug reactions, and expedite healthy outcomes through the use of the most effective drugs for an individual. The challenge is clearly the barrier of genetic discrimination.
Recently a woman who survived breast cancer had an adverse reaction to tamoxifen, a maintenance drug taken after surviving breast cancer. After taking this drug, she developed a life-threatening pulmonary embolism due to the drug. She has three daughters. Her daughters want to know if they also have a sensitivity to tamoxifen, in case they need to take it one day. Their doctor advised against testing because they would open themselves up to genetic discrimination.
In a paper published in the U.K., R.G. Thomas concluded that there was great push-back from the insurance industry against protecting genetic test information because of a concern that people would top up insurance policies if they knew they may get a future disease.
That has not transpired. In fact, the U.K. Insurance Key Facts 2014 paper, published by the Association of British Insurers, describes the insurance industry as a U.K. success story, and total premium income is lower than in other countries.
The Office of the Privacy Commissioner commissioned two papers looking at the economic and actuarial impact of the insurance industry if they did not have access to genetic test information, and the conclusion was, “it is not clear that the collection and use of genetic test results by insurance companies is demonstrably necessary, effective, proportionate or the least intrusive means of achieving the industry's objective at this time.”
To date, Ontario has tabled Bill 30, and it unanimously passed at second reading. This is a non-discrimination bill in Ontario, and they've been working on it for about four years. This bill addresses adding genetic characteristics to the Ontario Human Rights Code, and it is acknowledged by the sponsor of the bill, MPP Mike Colle, that in order for Ontarians to be protected, Bill S-201 has to go through at the federal level in its entirety, and for this added impact at the Ontario level, by adding genetic characteristics to the Ontario Human Rights Code. This would avoid a patchwork approach. In every province we would have an overriding pan-Canada protection. People could move from Ontario to Manitoba, and they would still be protected. It's seems clear that as Ontario is acting, other provinces will follow to strengthen their human rights act.
These are exciting times in medical science, and yet Canadians cannot take advantage of advances because legislation has not caught up with science and technology. Young people already have access to genetic testing and reproductive options enabling them to make informed decisions before they have children and potentially pass on a genetic mutation. Many young people don't get the genetic tests that could inform reproductive decisions because they fear of genetic discrimination.
Canadians are not participating in clinical trials that necessitate a genetic test for fear of genetic discrimination against themselves and their children. This is a barrier to medical progress in Canada. Parents are making the excruciating decision not to have their children genetically tested in order to inform disease treatment, because they are afraid of genetic discrimination against other siblings in the family. The paper “Genetic discrimination: international perspectives” identifies 37 countries. Of those 37 countries, 16 have specific genetic non-discrimination legislation, and 28 of the 37 have also signed on to a state-led moratorium and have agreed not to use genetic test information. Canada is on neither of those lists.
The time is past due to pass robust legislation protecting genetic test information and allowing all people living in Canada fearless access to personal information about disease prevention, targeted treatment, and management. This can only lead to the increased health and well-being of all people living in Canada. If the government chooses to amend Bill S-201 and decrease its robust approach at this time, Canadians will continue to be disadvantaged.
Thank you very much for your time.