Mr. Speaker, I too am pleased to rise in the House to speak to Bill S-201, an act to prohibit and prevent genetic discrimination.
The beauty of my work as a member of the House of Commons is that I have the opportunity to dig into a number of topics that affect Canadians and discover issues that I barely knew existed in my riding because no one had taken the time to inform me about them.
Bill S-201, introduced by Senator Cowan, opened my eyes to the very real dangers of genetic discrimination in Canada. I am pleased to share my thoughts on Bill S-201 with my colleagues.
During my research, I discovered that Canadians are not really legally protected from genetic discrimination. Across the country, people run the risk of being negatively impacted by genetic tests revealing potential genetic abnormalities. However, these tests are absolutely necessary. They can save lives. Thanks to modern medicine, these tests can forecast diseases a person might develop later on.
On the other hand, some people have a strong desire to know the risks, because there could be financial risks involved when it comes to the protection provided by insurance and all those other kinds of protection currently available to Canadians.
Do people have to choose between their money or their life? I think the answer is obvious: no one should ever have to make that choice. In my view, Bill S-201 responds perfectly to this concern.
Should someone who has a genetic disease have to pay higher insurance premiums? Should they be denied access to employment? The answer to those questions is no.
As I mentioned, we are all potential victims. There are nearly 6,000 genetic abnormalities that could cause diseases, and any one of us could be affected. Every month scientists discover new abnormalities that could affect our health. If there is no legislation in place, it could increase the cost of insurance or limit employment opportunities.
I will be quoting Ronald Cohn a few times in my speech, because I think he is a real expert on this matter. He treats children. I think we should listen to him.
Ronald Cohn, paediatrician-in-chief at The Hospital for Sick Children in Toronto, said that genetic discrimination is a real problem that will only grow with advances in technology.
The rate at which our doctors and researchers will find cures for our diseases will keep pace with the rate of technological advances. We hope these people work as quickly as possible to prevent others from becoming ill and in order to be able to treat people.
Unfortunately, as the rate of medical advances increases, some are eager to obtain these results in order to save money on the backs of the individuals who could develop these diseases in the future.
Another argument in favour of Bill S-201 pertains to the discrimination that other specific groups could be subjected to if certain ill intentioned people were to have access to test results.
Quebeckers in particular could be especially vulnerable because they lack genetic diversity. Researchers at the Centre de recherche du Centre hospitalier universitaire Sainte-Justine and the University of Montreal have shown that old stock Quebeckers for the most part are descendants of a limited demographic of only 8,500 French colonists. Today, there are several million Quebeckers. With respect to that group, if problems were discovered among the 8,500 colonists, today they are found in hundreds of thousands of Quebeckers.
Some regions of Quebec and their populations were isolated for approximately 400 years. The region of Saguenay—Lac-Saint-Jean is a striking example. In several other Quebec regions, we see the effect of this concentration of old stock Quebeckers, who are dealing with rare diseases inherited from their ancestors.
That is also the case in Newfoundland and Labrador. We are seeing the same phenomenon as in the Saguenay—Lac-Saint-Jean region. Remote locations and a lack of outside immigration for generations have also produced this sort of effect on the population. It is called the founder effect. It has created a number of genetic mutations that have led to hereditary diseases in communities in Newfoundland and Labrador and Saguenay—Lac-Saint-Jean.
The deadliest disease is arrhythmogenic right ventricular dysplasia. Speaking of subjects I never thought I would raise in the House, this is one of them. This inherited heart disease can result in sudden cardiac death. There are 64 specific families in Newfoundland and Labrador that are carriers of this disease and 80% of the men in these families with what might be called the “malevolent gene” will die before the age of 50. Many people show no symptoms of the disease.
If an insurance company sees test results that show that these people carry this “malevolent gene”, would they sell them life insurance? That is a question we need to answer because, if these companies are allowed to use genetic testing, they may decide not to sell these people life insurance. People who could potentially avoid dying before the age of 50 by taking the test may not want to take it for fear that their insurance company might get a hold of the results.
Once again, we are left with an illogical and immoral choice. It is not right that people should have to choose between doing everything they can to prevent their potential death and making sure that their family is taken care of financially after they are gone. However, that is the dilemma that these people are facing. Would an employer offer a long-term position to someone with such a disease? That is another question we need to ask.
Some first nations communities in northern British Columbia are genetically predisposed to certain serious illnesses. For example, some people in those communities are 20 times more likely than the average Canadian to have a genetic syndrome that manifests as a terrible hereditary heart disease.
Those are the dangers we are facing right now as a people and as Canadians because our laws do not provide for that kind of protection. Between 10% and 30% of patients refuse genetic testing because they fear genetic discrimination against themselves or their family members. Mr. Boudria, a former Liberal minister who now speaks on behalf of Ovarian Cancer Canada, hit the nail on the head with the following statement:
Medically, the current rules are not good enough. Some people would rather not have genetic testing done so that they will not be questioned.... The test could save their lives. We know that cancer is easier to cure if caught early.
That is why we must take action.
In closing, I would like to talk about other circumstances under which people refuse. Many families refuse to have their children tested because they fear the consequences with respect to insurance. Dr. Ronald Cohn, paediatrician-in-chief at The Hospital for Sick Children in Toronto, said the following:
Finding yourself in a situation where you offer somebody a test and then they say “I would love to do it but I'm afraid to,” it's somewhat paralyzing.
It is incredible.
Canada is lagging behind. We are the only G7 country that does not have legislation against genetic discrimination. Our neighbours to the south adopted similar legislation almost 10 years ago. France and Great Britain were among the first to adopt or amend their legislation nearly 20 years ago.
Elsewhere in the world, 50 or so countries regulate how genetic data can be used, and 35 of those countries explicitly prohibit genetic discrimination in employment. What is more, in 1997, the United Nations Educational, Scientific and Cultural Organization advocated for all states to provide protection from discrimination based on genetic data or genetic characteristics.
In closing, we support this bill because it is essential. I would also like to acknowledge the excellent collaboration of a participant in the parliamentary internship programme, Jeanette Carney. She provided excellent research for drafting these notes. I wanted to acknowledge that before you, Mr. Speaker, and before my colleagues.