Mr. Speaker, I am truly honoured to stand here today at the beginning of a new session to speak on such important legislation, Bill S-201, an act to prohibit and prevent genetic discrimination. I thank the member opposite from Don Valley West for sponsoring this Senate bill that allows us to have active debate on this issue.
I was first made aware of this piece of legislation from a visit by Ovarian Cancer Canada in May. The regional director from Saskatchewan and Manitoba, along with ovarian cancer survivor, Lauren Richards, came to my office to discuss their types of cancers, their concerns, and what we as members of Parliament and government can do to help the thousands of victims of this terrible disease.
Through our discussion, I was advised that ovarian cancer is the most fatal cancer for women in Canada and that 2,800 women would be diagnosed this year, with an additional 1,750 dying from this disease. Unfortunately, because of the symptoms of ovarian cancer, the diagnosis can be very confusing and disease go undetected. Lauren advised me that many physicians diagnose this disease as a bladder infection. Meanwhile the disease continues to spread. Because of this, the mortality rate is such that more than half of the women die within five years. The words for this are “just brutal”.
My own office assistant, Kim, was diagnosed in 2000. Luckily she is with us today, as it was detected very early and she has not just become one of those statistics. Kim is now tested annually, as doctors know of her medical history, but the question is what can we do to help people like Kim and Lauren, women who have this disease and who, in over 50% of cases, will die in five years? The answer is genetic testing. Genetic testing would not only provide an individual with a sigh of relief to find out whether or not they are a carrier of a mutated gene, but it would also allow individuals to get the appropriate care and treatment to deal with the diseases.
In 2015, former justice minister MacKay tabled similar legislation prior to the fall election. This legislation was especially supported by the Jewish community, which has a disproportionately higher number of genetic markers. I was made aware of this during my meeting with officials of Ovarian Cancer Canada, who advised me that their own colleague would not have this testing done, due to insurance concerns.
When preparing for speeches, many of us in the House read a lot of news articles and studies to do with the issue in question. One case from California in particular came to my attention. A young boy was transferred out of his school because of the results of his genetic testing. He had tested positive for genetic markers for cystic fibrosis but did not have the condition. This is a clear case of discrimination.
I believe that when we look at this issue we need to decide if it is about the quality of life and the betterment of our health decisions or the ability to discriminate. Currently we are the only G8 country that does not have legislation to protect our citizens from genetic discrimination. Similar legislation in the United States, Australia, the United Kingdom, and New Zealand, to name a few, already includes safeguards for their citizens.
I understand the concerns of insurance companies that have spoken out against this legislation, but in countries like the U.K. they have come up with solutions and proposals. Studies that have looked at the impact on the insurance companies, who are concerned about people over-insuring themselves to secure a large payout for their family when they pass on, have found that over-insurance is not truly an issue, as over 97% of those companies' policies fall below those considered limits. I recognize that the regulation of insurance companies is a provincial responsibility, but I believe that as a federal government we can set the tone for human rights across Canada.
During my preparation for this speech, I read the different proposals forwarded to other governments by insurance companies. Rather than saying that this is a provincial regulation, we can work collaboratively to make sure that we are protecting Canadians.
It is not just for diseases like ovarian cancer and breast cancer, but for people who have parents with Huntington's disease, heart disease, and many other diseases, for which this genetic testing would be very helpful. There are so many uses for this type of screening to help people make their choices about their health care needs. Personally, I have a mother who had a triple bypass, and whose mother and family members had a number of heart disease issues, including my aunt, uncle, and great uncles.
Just a couple of years ago, my sister, a very active and fit 48-year-old woman at the time, was diagnosed with a heart condition and now has a defibrillator implant. For me personally, this does cause concern. Do I have the same issue or will I find out that I do like my sister did when she passed out in her family's hallway? Will my daughters and sons have this condition? Does my husband carry the gene for prostate cancer like his grandfather?
As the leader of the Senate Liberal caucus said in January 2016, scientists here in Canada are unlocking keys to our DNA and the results are revolutionizing medicine. As he indicated, just because individuals have the markers, it does not mean they will develop the condition, but just knowing can change so many things for them, such as lifestyle, diet, exercise regime, and particular medications or perhaps surgery as necessary.
An extremely popular example of this is Angelina Jolie. When she discovered she had a genetic disposition for breast cancer, she dealt with it by having a double breast mastectomy. As a mother caring for many children, she had the hardships somewhat relieved for her. This is an example of providing peace of mind not only for her but also for her children.
As I indicated earlier, I had the opportunity to speak to an ovarian cancer survivor who luckily had been diagnosed early. However, we must keep in mind that misdiagnoses can occur and do, especially with these types of cancers. The ability to save a life is crucial.
With respect to discrimination, there have been situations in Canada where people have lost their jobs following positive test results for specific diseases. People have lost out on promotions and have come under scrutiny on the job due to their potential conditions, and it is not just with respect to employment insurance. Due to positive results, families have not had the opportunity to adopt children. Instead of having the opportunity to raise a family, individuals go without, and they may not even have the condition but have just tested positive for it.
It just does not make sense for us as parliamentarians to not support such an important piece of legislation. We need to set the bar and we need to set that now. We need to do what is best for Canadians, and supporting this legislation is just that. I urge all members to take an important stand and support Bill S-201, an act to prohibit and prevent genetic discrimination. I urge members to look at the health of people and to allow provincial regulators to find solutions to assist Canadians who have tested positive for gene markers. I urge Canadian researchers and our medical professionals to work together to encourage testing, especially in cases where there may be something that could be detected, which would allow Canadians to make their own personalized health care plans.
I would truly like to thank Ovarian Cancer Canada for coming to my office and informing me of what we can do and how we can be part of the solution that would make a difference for all Canadians, now and in the future.