Thank you, Mr. Chair and honourable members, for the opportunity for the Canadian Association of Genetic Counsellors to express its opinion on genetic discrimination and Bill S-201. This is a pressing issue, and CAGC would like to protect Canadians from genetic discrimination so that it no longer impacts their genetic test decisions.
When genetic counsellors offer genetic testing, we feel compelled to mention the possibility of genetic discrimination since many of us are aware of patients we or our colleagues have seen who have experienced genetic discrimination. The actual cases are few, but we cannot guarantee that the patient we are seeing will not be one of those few and, as a result, we must mention it to all of our patients.
Recently, a clinic was asked to include the possibility of genetic discrimination in its consent form for genetic testing because of this concern. Even though the number of cases may be small, the fear of potential genetic discrimination is frequent, and it is affecting Canadians' genetic test decisions and therefore their medical care.
Genetic testing has evolved from being able to look for specific genes to doing broad scanning of our genome, and with this there is an increased probability of finding something that could be used in a negative capacity.
There is also a trend toward preventive genetic testing. This means screening for genetic markers that people could use to help manage their health.
The future of genetic testing promises amazing advances, but with these advances there is also the increased potential for misuse of this information and for discrimination. Here are some examples. We recently had in our clinic a patient with colon cancer who was offered testing for something called Lynch syndrome. This was offered because Lynch syndrome has a higher risk not only for colon cancer but also for cancer of other organs, like stomach and liver. If we knew that this individual had Lynch syndrome, enhanced screening would be offered to them, and their close relatives could also be identified and screened. This person declined testing for Lynch syndrome, because they were concerned about genetic discrimination against their relatives.
We are also able to do genetic panels and sequencing of genes. When doing this, we may find DNA variants that are of unknown significance. These variants could mean that there is a problem with that gene and that person has the syndrome, but they could also be actually a benign variation in our DNA. We just don't have enough information right now to really be able to classify whether or not that person has the syndrome. Could this potentially be used against them because of that uncertainty? It is certainly a possibility.
Also, microarray testing and exome sequencing are a broad way of looking for genetic differences. One potential case would be of a woman who is offered prenatal testing because of unusual ultrasound findings. She would be offered this testing so we could determine the implications of those ultrasound findings and figure out the prognosis for her unborn child. That testing, though, could discover things like a neuropathy, early-onset Alzheimer's, or a predisposition to cancer. If one of those things is found, that would make that unborn fetus—and potentially one of the parents, who probably carries that genetic change as well—uninsurable.
It's a lot to put on a woman, who has to make difficult decisions about a pregnancy, to also consider this possibility, though small, while she is trying to make that decision. We do take measures to try to minimize the likelihood of finding these unexpected findings, but they could be found inadvertently, and we would have to explain this to her. It adds complexity to an already challenging case and the challenging decisions that she has to make.
For preventative genetics, they are looking at factors in genes that would maybe modify a person's health risk. One example is Factor V Leiden. This is a genetic change that's found in 3% to 8% of the Caucasian population, and carriers of this genetic variation have an increased risk of blood clots. Though there is increased risk of blood clots, there are things a person may be able to do to reduce that risk, for example being cautious about what medications are prescribed.
For instance, oral contraceptives would be inadvisable for someone who carries Factor V Leiden nor would sitting for long periods of time. You would want to move around to reduce that risk.
Could that person who finds out about Factor V Leiden, so that they can try to minimize the risk or choose what type of birth control they would use, have that used against them when they're applying for, let's say, travel insurance or disability insurance?
There are many more possibilities, and there are even ones that we cannot conceive of at this time because of the advances that are happening in genetics and where those may take us.
CAGC, or the Canadian Association of Genetic Counsellors, believes that legislation is needed to protect Canadians. Bill S-201 offers the most protection, and this bill would allow Canadians to be reassured that they will not experience genetic discrimination. It will allow patients to make decisions about genetic testing to optimize their health management without being influenced by the fear of genetic discrimination.