Mr. Speaker, it is my pleasure to be able to speak to this subject.
Clearly, this is not always a very easy subject to understand, but I think it is important in the context of the current system we are dealing with.
Many people are now faced with difficult choices; take insurance, for example. People are being asked to be more provident in general, to consider taking out life insurance or disability insurance so that they can protect their family in the event of adversity.
However, the problem this raises is that people have access to far more information on health and genetic diseases. For example, we know that a given gene could indicate a greater predisposition to a given disease. Often, nothing is certain. We know there is a greater predisposition in a given gene carrier, but we also know that nonetheless the person may never develop the disease in question.
Because of family history, more and more people are being asked to take a genetic test if they want access to life insurance or disability insurance.
People who refuse to take the test run the risk of being denied insurance. If you pass, it means you do not carry the gene, and you can therefore be insured and everything will be fine. However, if you discover that you do carry the gene, you run the risk of being denied insurance, not only from that insurance company, but also many others that you would approach later. All this because you carry a gene that predisposes you to a given illness that could be very serious, although there is no guarantee that you will actually get the disease.
This could put additional stress on people, because they will be afraid of developing a disease that they may never actually develop. This is very important. This has become increasingly important over time, with the evolution of medical technology.
When it comes to genetic discrimination, it is also important to make sure that people can continue to take part in genetic research without begin forced to disclose the results or findings of that research. It is therefore important to ensure the confidentiality of data.
My colleagues might not know this, but Quebec is quite interesting when it comes to genetic research. People who do family research realize that the population base in Quebec did not move very much for many years, unlike in Europe where there were regular unions between people from different regions or countries to consolidate alliances. In Quebec, the people did not move very much at all. This is extremely interesting for genetic research because it allows the researcher to establish family lineage and see how genetic diseases were transmitted within a same family. A significant amount of data is readily available, in other words, it is easy to find out who married whom. Family trees can be established for the vast majority of Quebeckers. A number of companies that do genetic research decided to use Quebec's population for their studies.
If the research participants are not sure that their data will be protected or whether they will eventually be forced to disclose to an insurance company the blood sample they might have provided 10 years ago, then this could seriously hamper the research.
This research helps detect the genes that cause certain diseases and contributes to medical advances. Accordingly, protecting people from discrimination also allows advances in research to continue.
Research participants are often compensated financially. I think that practice should continue provided this is really done for research.
However, when insurance is involved, we should consider the need to prevent people from obtaining financial compensation for agreeing to take a genetic test because that is a source of pressure. If an individual is offered a lower insurance premium on condition that they agree to take a test, that becomes a financial incentive. That is perverse and does not help resolve the issue of genetic discrimination. These are very important considerations.
Researchers need access to this data, as do health professionals when this information is found to be pertinent to the condition of their patients, so they can provide appropriate treatment. However, if health professionals have access to these test results, we must ensure that confidentiality is protected. If we do not protect patients' privacy, we run the risk that some people will refuse these tests, will not know that they are at risk of developing a disease, and will definitely not change certain lifestyle habits that are putting them at risk.
Genetic testing can play a preventive role in some respects. If we know that we are at risk because of an abnormal gene, we can work on the risk factors, because those can be mitigated.
When it comes to breast cancer, for example, some genes have been identified, but there are other risk factors, such as birth control pills. By reducing their exposure to such substances, people can reduce their risk, even if they know they may be genetically predisposed to that type of cancer.
I know that genetics may not be the most riveting topic. I would like my colleagues to be more upbeat and enthusiastic, but I must admit that we are discussing a highly specialized scientific field and that it is easy to get lost, particularly for those at home who have even less knowledge of health. That is why we, as legislators, need to protect them properly.
We have the opportunity to speak to experts who can explain to us the challenges associated with this sort of bill. We have the responsibility to protect Canadians, particularly when it comes to such a technical topic. It is not always easy for the people at home to follow what we are doing, but we have here a wonderful opportunity to better protect Canadians. We can ensure that no one ends up in a precarious personal or financial situation and that no one is prevented from protecting their family because they have been refused insurance.
It can even have an impact on their children. Imagine finding out from a genetic test that one has a genetic predisposition. Then imagine being denied insurance because one chose to have the test done. Then imagine one's children and other family members also being denied insurance. That would be a shame. People are increasingly being expected to take charge of things themselves and make arrangements for their own security, so refusing to protect them would conflict with what they are being asked to do.
I am therefore asking my colleagues to support this bill so it can be referred to committee and improved as needed. We must protect Canadians from genetic discrimination.