Thank you very much, Mr. Chair, and honourable members.
Thank you for inviting the Canadian Coalition for Genetic Fairness, and, indeed, all Canadians, to have their voice heard here today. I truly appreciate it.
I'm going to focus on three areas: the fear of and examples of genetic discrimination, the evidence-based research, and the impact of not protecting genetic test information.
Let's start with the stories.
A young mother expecting her second child was approved for life insurance. Before she received her policy, she found out that her own mother was diagnosed with breast cancer and was subsequently found to have the BRCA gene. This young mom notified her insurance company to let them know that she too wanted to be tested for the BRCA gene so that she could inform her health decisions going forward, and her insurance was rescinded.
A graduating chiropractor applied for life insurance so that she could practise after she graduated. She was initially denied because she was from a Huntington disease family until she proved through a genetic test that she in fact did not have the gene. She reluctantly had a genetic test and does not have the mutation, but the story continues. Five years later, when she was given the opportunity to buy into the practice, the insurance industry said she had to get another genetic test to prove she still did not have the genetic mutation for Huntington disease. Finally her physician stepped in and said, “This is a waste of health care dollars. She doesn't need another test”. However, then her family stepped in and said, “Please stop talking to the media, because we're now getting questions from our employers. Please stop telling them about your experience.”
In Toronto, Ontario, the landlord of a supportive housing site has been asking tenants to provide medical information, including genetic test information. The landlord has approached current tenants directly to ask for this information and is holding back other privileges, like using the common room, until they provide that information. It is unclear why the landlord is asking, but it clearly sets a very frightening precedent.
A gentleman from Ottawa in his fifties was recently diagnosed with frontotemporal dementia. He would like to participate in clinical trials to try to find answers for this disease. His children are in their twenties and are furious at him for even considering getting tested and participating in clinical trials, for the impact it may have on them down the line. This has created a division in the family at a time when he really needs support from his children.
A young man, who was upset at work one day after receiving genetic test results that he had the Huntington disease mutation—although he won't manifest for 20 years—was asked by his employer, “Why are you so upset today?” He told his employer that he had the gene mutation, that he'd be okay for 20 years, but he had to figure out his life. That was on a Friday. On Monday morning this young man went into work and was fired. The employer said he was fired because he was worried for his equipment. The young man was a web designer. To this day he's afraid to apply for another job, and he's 22 years old.
Yesterday, I received a note from an individual wanting to help and support the coalition. When I asked her if she herself had experienced genetic discrimination, she answered, “Thankfully, no, but I would like to move back to Canada and work in the field of genetics, which at this point in time is at a standstill until Canada protects genetic test information.”
Allowing genetic discrimination to occur creates a barrier to personalized medicine. Dr. Yvonne Bombard has published many papers on genetic discrimination, and the impact it has on behaviours. In a recent paper she found that 86% of people in the HD community fear genetic discrimination for themselves and their family members. Fifty per cent of them have experienced genetic discrimination.
In another paper focusing on personalized medicine, Dr. Bombard concludes, “Individuals' concern about genetic discrimination can create barriers to access to genetic services that may offer them important therapeutic or management opportunities, and can result in suboptimal care for those who undergo genetic testing under conditions of anonymity or aliases.”
In other words, genetic discrimination is a barrier to the health and well-being of people living in Canada because people do not seek out the information in order to make informed health decisions.
Pharmacogenetics is a science that can provide life-saving information, eliminate potential adverse drug reactions, and expedite healthy outcomes through the use of the most effective drugs for an individual. The challenge is clearly the barrier of genetic discrimination.
Recently a woman who survived breast cancer had an adverse reaction to tamoxifen, a maintenance drug taken after surviving breast cancer. After taking this drug, she developed a life-threatening pulmonary embolism due to the drug. She has three daughters. Her daughters want to know if they also have a sensitivity to tamoxifen, in case they need to take it one day. Their doctor advised against testing because they would open themselves up to genetic discrimination.
In a paper published in the U.K., R.G. Thomas concluded that there was great push-back from the insurance industry against protecting genetic test information because of a concern that people would top up insurance policies if they knew they may get a future disease.
That has not transpired. In fact, the U.K. Insurance Key Facts 2014 paper, published by the Association of British Insurers, describes the insurance industry as a U.K. success story, and total premium income is lower than in other countries.
The Office of the Privacy Commissioner commissioned two papers looking at the economic and actuarial impact of the insurance industry if they did not have access to genetic test information, and the conclusion was, “it is not clear that the collection and use of genetic test results by insurance companies is demonstrably necessary, effective, proportionate or the least intrusive means of achieving the industry's objective at this time.”
To date, Ontario has tabled Bill 30, and it unanimously passed at second reading. This is a non-discrimination bill in Ontario, and they've been working on it for about four years. This bill addresses adding genetic characteristics to the Ontario Human Rights Code, and it is acknowledged by the sponsor of the bill, MPP Mike Colle, that in order for Ontarians to be protected, Bill has to go through at the federal level in its entirety, and for this added impact at the Ontario level, by adding genetic characteristics to the Ontario Human Rights Code. This would avoid a patchwork approach. In every province we would have an overriding pan-Canada protection. People could move from Ontario to Manitoba, and they would still be protected. It's seems clear that as Ontario is acting, other provinces will follow to strengthen their human rights act.
These are exciting times in medical science, and yet Canadians cannot take advantage of advances because legislation has not caught up with science and technology. Young people already have access to genetic testing and reproductive options enabling them to make informed decisions before they have children and potentially pass on a genetic mutation. Many young people don't get the genetic tests that could inform reproductive decisions because they fear of genetic discrimination.
Canadians are not participating in clinical trials that necessitate a genetic test for fear of genetic discrimination against themselves and their children. This is a barrier to medical progress in Canada. Parents are making the excruciating decision not to have their children genetically tested in order to inform disease treatment, because they are afraid of genetic discrimination against other siblings in the family. The paper “Genetic discrimination: international perspectives” identifies 37 countries. Of those 37 countries, 16 have specific genetic non-discrimination legislation, and 28 of the 37 have also signed on to a state-led moratorium and have agreed not to use genetic test information. Canada is on neither of those lists.
The time is past due to pass robust legislation protecting genetic test information and allowing all people living in Canada fearless access to personal information about disease prevention, targeted treatment, and management. This can only lead to the increased health and well-being of all people living in Canada. If the government chooses to amend Bill and decrease its robust approach at this time, Canadians will continue to be disadvantaged.
Thank you very much for your time.
Thank you, Chair, and honourable committee members. I appreciate the opportunity to speak here today in support of Bill .
The Centre for Israel and Jewish Affairs is the advocacy agent of the Jewish Federations of Canada, a national, non-profit, non-partisan organization representing the perspectives of 150,000 Jewish Canadians affiliated through local federations from coast to coast. Our mission is to improve the quality of Jewish life in Canada by advancing public policy interests of our vital community.
Enacting Bill could have a tremendous impact on the health of many Jewish Canadians. Jews of European descent are 10 times more likely than the general population to carry the BRCA genetic markers indicating a significantly elevated risk of breast and ovarian cancers. For women with these markers, this means up to an 85% chance of developing breast cancer and up to a 65% chance of developing ovarian cancer, compared to 12% and 1.8% respectively for the general population. Once tested, a patient can ensure proper screening and take preventative steps to radically reduce, if not eliminate, their cancer risk.
Unfortunately, too many, too often, refuse genetic testing due to fear of genetic discrimination. Those who do get tested are at risk of being penalized for being responsible.
This is the justice committee, so let me give you an example from a legal context. A friend and colleague of mine, an Ashkenazi Jewish woman, was advised to forgo genetic testing when she was beginning her legal career at a major Toronto law firm. She was warned that a BRCA marker would likely inhibit progress in her career, precluding her from being able to make partner in that firm. Also, it could possibly limit access to the insurance she would need to establish her own independent practice, if she chose to do so.
No Canadian should be forced to choose between their life and their livelihood.
While this experience is particularly concerning for the Jewish community, we're by no means the only group impacted. Others are increasingly susceptible to genetic discrimination as research progresses, whether they are of Scandinavian, South Asian, African, French Canadian, or first nations descent. It's not just minority groups that face this challenge. Genetic testing can be a lifeline for all Canadians. From rare disorders to cancer, diagnostic and treatment options are developing at an exponential rate. We've reached a point where the major barriers to these advances are no longer just scientific, they're legislative. Parliament can harness the full potential of these breakthroughs by ensuring that those who are tested do not fear or suffer from genetic discrimination.
With taxpayer dollars being wisely allocated to cutting-edge genetic research, the protections provided by Bill are essential to ensure a meaningful return on investment and to maximize the potential health benefits for all Canadians. Moving forward, genetic screening and subsequent treatment and lifestyle changes could conceivably help to prevent a variety of illnesses from requiring costly treatment at an acute stage.
Fortunately, there's broad cross-party support for Senator Cowan's initiative. During the 2015 federal election, CIJA organized a debate in Toronto, in which candidates from all three major parties participated. All the candidates pledged to make it illegal to discriminate based on the results of genetic testing, if their party were to form the government. , now the , who represented the Liberal Party at this debate, stated that the Liberals would make sure they introduced into Parliament, which they thought they could do with all-party support, a bill that would prevent insurance companies from using genetic testing or pre-existing conditions either to preclude someone from getting access to insurance or to price insurance so high that it wasn't accessible to them.
Of course, we're all here today because the House of Commons unanimously supported this bill and bringing it to committee.
Fundamentally, preventing genetic discrimination can help save lives. We encourage the enactment of Bill without delay.
It is always a great pleasure for me to take part in the work of the Standing Committee on Justice and Human Rights. As you know, I spent several years sitting where you sit, as a member of this committee, as justice critic for the party I belonged to at the time.
That party as you know, is very protective of provincial prerogatives. Although I am no longer a member of any political party and have not been for several years, I remain sensitive to and respectful of provincial jurisdictions.
That is in fact what I would like to highlight today. It has been said that Bill is unconstitutional because it attacks civil law on contractual matters, principally as concerns insurance and the right to employment.
When we became aware of this, at the Centre for Israel and Jewish Affairs, we contacted representatives of 10 of the 13 Canadian provinces and territories. In fact, who is in a better position than the provinces and territories themselves to speak to the constitutionality issue? In the replies we received, none of the provinces or territories said that Bill posed some type of jurisdictional issue. Moreover, none of them said that the issue of genetic discrimination was not a matter of federal jurisdiction.
This consensus was strengthened by legal opinions, which you have surely read, from professor Bruce Ryder, of Osgoode Hall, who unless I am mistaken will be testifying here next week, as well as from professor Pierre Thibault of the University of Ottawa. The research I have done led me to adopt a position that is very similar to that of Bruce Ryder.
In my opinion, when one studies Bill , the main question is this: what is the dominant characteristic of the bill? Is it that it puts in place interdictions, accompanied by sanctions, to grapple with a social ill, genetic discrimination, or is it rather that it regulates an industry, such as the insurance industry? In the first case, this is a matter of federal jurisdiction. If it is the second, then it is a matter of provincial jurisdiction.
Let's consider what Bill does and what it does not do.
Bill does not contain a licensing scheme or industry regulations. It contains prohibitions and penalties in line with criminal law. It does not target any particular industry or type of actor. The clear purpose of this bill is to address a significant social problem across Canada. By prohibiting and penalizing genetic discrimination, the Parliament of Canada is within its power.
Bill will encourage Canadians to get tested, unlocking tremendous, potentially life-saving health benefits. This is the objective of the legislation before you, and I submit to you that it is within the federal domain.
Of course, it may be true that employers and insurers are affected by Bill . However, the fact that a bill may have repercussions on provincial matters of jurisdiction does not make it unconstitutional as such. We may legislate on genetic discrimination at both the federal and provincial levels.
As Professor Ryder noted, it's not uncommon to have overlapping laws in areas of shared jurisdiction, and it's often the role of the federal Parliament to show leadership and to set out some basic national standards. In fact, Bill has already started to do this. As was mentioned previously, there is now a bill in front of the Ontario legislature to ban genetic discrimination, which passed second reading with unanimous support.
In closing, Mr. Chair, I invite the members of the committee to support Bill and to vote in favour of it without amendment, and to report it to the House of Commons. In doing so, members of the committee and other members, you would be sending a strong message that there is no room for genetic discrimination in Canada in 2016.
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 . 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 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.
Do you want me to start?
I'm not a lawyer, so I'll put that on the table.
I think it's critically important to change the Canadian Human Rights Act. We've worked with Justice since 2010, and they've been very onside with making the Canadian Human Rights Act more explicit, so that there is no question and no grey area. That's very important, because that will filter down to the provinces, and provinces will take a lead and do that.
That's not the only important part of this bill. It's very important to have pan-Canada protection. It's very important that we don't have a patchwork. The issue with a patchwork approach, where at a pan-Canada level we don't have the same protection right across Canada, is that every province will do it differently; there will be holes in the legislation; and people will be disadvantaged and actually misled because of that. They won't know what their protections are.
It's critically important, in our opinion and in the opinion of the Canadian Coalition for Genetic Fairness, to have the pan-Canada bill, the , in conjunction with the clarity in the Canadian Human Rights Act, in the Labour Code, and in the provincial human rights acts. It's all necessary for all Canadians to be protected.
No, but I'll conclude by saying thank you for making a very compelling case on behalf of this legislation.
Monsieur Marceau, thank you for your comments, as well, about outlining in the federal jurisdiction completely unacceptable behaviour. I liked the comments about the human rights boards. Very often the people are victims to begin with, and they're the least able, many times, to come forward to make these cases.
The comment I was going to make was that I'd be interested in the names of some of these people or these employers who are involved in this disgusting behaviour.
Mr. Shack, I'd be interested in knowing what law firm in Toronto would fire some guy on a Monday morning because of his genetic testing, and I'd love to know the name of that employer who fired somebody because they had testing for Huntington disease that may come in 20 years.
I'd like to invite them to the committee here, but I'd love to have their names, if you can give us their names.