Mr. Speaker, it is a pleasure to speak again in the House on an issue of great importance to many of my constituents and to many Canadians. I will be supporting the bill.
The bill before us is Bill S-201, genetic non-discrimination act. The summary of the bill says that:
This enactment prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract or agreement with, or offering specific conditions in a contract or agreement with, the individual.
Essentially, the bill is to prevent discrimination based on genetic testing information to ensure that Canadians are not required to give that information to a third party and that this information cannot be shared without their consent.
I want to commend the member for Don Valley West on the speech he gave to introduce the bill in the chamber. I would recommend it to people who want to get a full appreciation of all the intricacies of the law and the amazing genetic testing and research that is out there.
We are in a new age, and the number of tests are expanding, as are the number of diseases that can be detected early on, and the number of genetic markers. The science is expanding every day. We want to ensure that Canadians are protected as more and more of our information, more and more of who we are, is exposed as a result of this testing.
The reason I wanted to talk about this is because of some families in my riding that have already experienced difficulties as a result of diseases they have been tested for, which have affected their ability to obtain life insurance. This is already happening. This is not some futuristic problem that may happen somewhere down the line. This is happening right now.
I would like to share a couple of stories from some people in my area. Quite frankly, I am not going to share their names or even the disease they are suffering from, because they are already concerned about what the repercussions would be for them if some of this information was revealed.
This is from a mom who says, “We chose not to get my son diagnosed, because he is basically healthy. I am looking to renew my life insurance and my agent was told by the underwriter that all patients with this disease have been denied insurance.” It should say whether they are symptomatic or not. She goes on to say, “It seems so unfair because this disease is typically not life-threatening. Disabling, yes, but I was seeking life insurance. If we tell sports organizations or community centres about my daughter's complicated medical history, they will not let us enrol. I need to not disclose health and safety issue so that she can live a normal life.”
Already there are some problems with obtaining life insurance.
Another family wrote to me and said, and this is about a hereditary disease in this family:
“For us, we had my son and I diagnosed before we knew anything, and before we knew we would never qualify for disability insurance. We have a very difficult time getting life insurance. I pay at least three times the amount for life insurance, even though my disease does not actually affect my lifespan. We are now in a predicament that our daughter is showing signs of this disease as well. We have to make a decision to get her tested. With testing, we can then qualify for things like the disability tax credit and possibly at-home funding and definitely special needs funding in school, but we are holding off because of the insurance implications. I worry how this testing and a diagnosis will affect her in the future. So we are paying out of pocket right now for her weekly physiotherapy sessions, $70 a week, and other therapies. We probably spend about $400 to $500 a month out of our own pockets so that we can protect her in the future, so that she is not discriminated against.”
Another person wrote to me about this and said that teachers and parents push for and are compelled to get kids outside the typical diagnosis, and funded, but this is going to follow them. It is going to help in some ways but it will hinder in others.
This is a choice that no parent should have to make. They should not have to be faced with the choice of getting funding for their kid, because then their kid will not be able to get life insurance when they are an adult. This is not the kind of country that we should live in, and it is something that we as parliamentarians should strive to protect people from. This is why the bill is so necessary.
There are other cases I think we need to look at. We have seen that mental health care has been an expanding field. This is something that we absolutely have to do more to address as governments at all levels.
I have talked to people who work in the House of Commons who have made it clear as well that not only are they not willing to come forward with their own mental health struggles because of the stigma surrounding it, but they are worried about their insurance and their health care plan. They are worried about the implications for them should they reveal a mental health issue. We encourage people to come forward, but we send a mixed message if we allow those people to be discriminated against for coming forward with that information and for seeking treatment.
This is why I was upset earlier. There is treatment available. There is a course of therapy available. There is funding available for kids, but parents have to make a choice right now, because they know from previous experience that if they reveal this to the wrong medical professional, the wrong insurance company, or even reveal it outside of the school system perhaps, that the child will pay a price for it, even though it will not affect their lifespan. This is not right.
Therefore, I am hopeful that as we study the bill, as we move forward to send it to committee and get more information out there, that we can talk about not only this area but other areas where perhaps our laws are not doing enough to protect those Canadians who are vulnerable, who could be helped but are afraid to seek help because of the repercussions.
I also want to mention, perhaps on a lighter note, that there are companies now that are advertising that we could just take a swab from our mouths and find out all about our ancestry; go to ancestry.ca and learn more about the makeup of our DNA. I think that, without the protections in the bill, we should be very concerned about that. This information is being retained. If we are not protecting people, what is to say that an insurance company might not ask if one has ever provided a DNA sample to determine one's heritage? If we do not protect those people, what is to say that it would not be a reason to deny insurance if they did not provide that information?
Again, it is more of a concern with this growing availability of DNA testing, of genetic testing. We need to be careful that we protect Canadians. We certainly need to stand up for those Canadians who are currently being negatively affected by the discrimination in the system.
I commend the member for bringing the bill forward, and Senator Cowan as well for starting this. The bill will have my enthusiastic support.