Genetic Non-Discrimination Bill

Honourable senators, I rise today to speak on an act to prohibit and prevent genetic discrimination, introduced by our colleague Senator Cowan in the previous Parliament as Bill S-218 and reintroduced in this Parliament as Bill S-201.

I would first like to thank Senator Cowan for his work on this bill, for addressing this important issue and bringing it to our attention in the Senate.

Colleagues, as many of you know, as I have mentioned several times in this place, I suffer from a condition known as hemochromatosis, which happens to be Canada's most common genetic disorder. People who have this genetic disorder are unable to metabolize iron absorbed from the diet. This means we have too much iron in our blood, which can cause damage to our joints, liver, pancreas, heart, brain and endocrine glands.

If someone has hemochromatosis and is not aware of it, if they have not been diagnosed with it, the consequences can be fatal.

Many thousands of Canadians have the genetic potential to suffer from this genetic disorder, with it being prevalent in those of European and Celtic descent. This is a matter of particular concern to the people of my home province of Newfoundland and Labrador, where we have a higher rate than the national average.

Honourable senators, this disorder can overload organs with iron and ultimately lead to death. There is no cure. However, there is treatment that can reduce or eliminate most of the severe complications, which include arthritis, diabetes, heart failure, cirrhosis and cancer. The treatment includes regular removal of blood, known as phlebotomies.

Colleagues, the reason this disorder, hemochromatosis, is pertinent to our debate today on this bill is that diagnosis is made through blood tests, which can give an indication of the possibility, and genetic testing, which can confirm that indication.

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As I've mentioned before, the burden of undiagnosed hemochromatosis in Canada results in avoidable costs to the health care system of premature chronic diseases, the financial loss to families due to disabilities and the preventable loss of loved ones.

Genetic testing can confirm a diagnosis and help to identify family members who may be at risk for this disease. Most commonly, the genetic test is performed with a simple cheek swab. Mine was done with a genetically tested blood sample.

Awareness is the cure to hemochromatosis. As the late Marie Warder, founder of the Canadian Hemochromatosis Society, so accurately stated and as I have said here before:

Find us one victim, and we will save a whole family.

Colleagues, unfortunately, many Canadians have a great fear of getting genetic testing done. They fear, correctly, that if they get tested and something negative comes back, they won't be able to get insured for it or their premiums will go up.

Currently, insurance companies and employers can request to have the results of someone's genetic testing. I have a friend who sought life insurance and was required, as a condition of the insurance, to provide the insurance company with a blood sample for a genetic test. They were the ones who told him he had hemochromatosis, and then they denied him insurance.

Genetic testing is a valuable tool. It can be used to determine whether you may be susceptible to certain diseases. It doesn't mean you have the disease, just that you may get it.

We all know that so many diseases, including cancer, are manageable and beatable if we catch them early enough and develop a plan to manage and beat them. Hemochromatosis is a perfect example.

Imagine if we could determine whether someone may get it. Imagine the impact on our health care system by the advances made in genetic testing.

Colleagues, genetic testing should be encouraged, and we should be promoting it. But genetic discrimination is a serious barrier to this.

Insurance companies currently have access to these results as Canada is the only G7 country without any form of protection from genetic discrimination. The United Kingdom, the U.S, Japan, all of these countries have protection from genetic discrimination. It is time Canada does as well.

Colleagues, one of the concerns with this bill in the previous Parliament was whether it was constitutional or possibly outside of federal jurisdiction. The bill's sponsor, Senator Cowan, took the suggestions made by us here and made important changes to this bill to ensure that it is constitutional and within our jurisdiction.

Having reviewed this bill in its entirety, having paid close attention to the discussions of this bill here in the Senate and after consulting Senator Cowan and others, I believe this bill not only has merit but also passes the constitutional test and, therefore, should be passed.

Colleagues, I ask you to vote in favour of Bill S-201, An Act to prohibit and prevent genetic discrimination. It will lessen the burden on our health care system and, more importantly, save lives.