Ladies and gentlemen, I am going to call this meeting of the Standing Committee on Justice and Human Rights to order as we continue our study of Bill .
I would like to welcome our witnesses for today. We are joined by the Canadian Medical Association, represented by Dr. Cindy Forbes, who is the past president, and Cécile Bensimon, who is the director of ethics.
We're also joined by the Canadian College of Medical Geneticists. Dr. Gail Graham, the past president, is joining us.
Thank you very much for being here.
We've agreed that you will begin, Dr. Forbes.
Thank you, Mr. Chair, and thanks to all of you.
I'm Dr. Cindy Forbes. I'm a family physician from Nova Scotia and the past president of the Canadian Medical Association. As you may be aware, the Canadian Medical Association represents 83,000 Canadian physicians. I'm joined today by Cécile Bensimon, who is the director of ethics.
The CMA very much welcomes this opportunity to appear before the committee as part of your study on Bill , the genetic non-discrimination act. As part of my opening statement, I will focus on the national importance of federal legislation preventing genetic discrimination.
At the outset, however, let me state that the CMA strongly supports the enactment of Bill in its entirety, that is, maintaining the three core elements of this bill. At the core of the CMA's support is the fact that this legislation addresses discriminatory barriers related to genetic testing, an emerging issue that is about patient care.
Genetic discrimination, and the fear of this discrimination, may potentially negatively impact the patient-physician relationship. This is a concern that I encourage you to consider carefully, and I welcome your questions on that.
Genomic medicine holds great promise in the diagnosis and therapeutic treatment of many known and new diseases and, ultimately, in enhancing the quality of life of many patients. We are witnessing the transformative development of genomic medicine, with a rapid expansion in genetic testing. This transformation and the availability of new genetic tests are allowing for the discovery of new genetic conditions, as well as early diagnoses that will benefit patient care.
Before us is the prospect of transforming clinical medicine and patient care at a pace that will only accelerate in the foreseeable future. Today, genetic testing is aiding in the early diagnosis of numerous conditions, including many forms of cancer, heart disease, and dementia, to name only a few. As well, our ability to genetically test for new conditions is continually increasing.
Of great concern to Canada's doctors and their patients is the fact that public policies and legislation have not kept pace with this transformation. Genetic discrimination is both a significant and an internationally recognized phenomenon. As you heard from other witnesses, Canada stands alone amongst the G8 as the only country that has not established legislative protections in the face of this major transformation.
While genomic medicine will continue to have broader clinical applications, the fear of genetic discrimination is both widespread and real. As a primary care provider, I have experienced, in having conversations with my patients, their very real fear of discrimination.
As Canada's doctors, it is the CMA's position that Canadians deserve to have access to the best possible health care without fear of genetic discrimination.
Genetic discrimination presents several negative consequences. The most concerning consequence may be patients who feel they must hide their family history from their health care providers, who may never be referred for a genetic assessment, or who may avoid care or treatment for fear of discrimination. These consequences are simply unacceptable in Canada's universal public health care system.
Six out of every 10 Canadians will be affected during their lifetime by a health problem that is genetic in whole or in part. It's important to recognize that genetic testing will no longer be limited to rare, esoteric genetic diseases occurring in patients seen by a handful of specialists across the country. Rather, it's becoming an integral part of broad medical care and, as such, is expected to become mainstream medicine.
While genomic medicine is still in its infancy, it's already changing the face of modern medicine. Every year, every month, and every week, new genetic conditions are discovered using these tools. Patients who were undiagnosed for years are now finally receiving diagnoses thanks to these genomic advances. Early diagnoses are actively influencing medical management.
The way we deliver genetic care to our patients has radically changed over the last decade, and there's no reason to believe that this growth will plateau anytime soon.
There are obvious economic and productivity impacts if patients are not able to be diagnosed and we are not able to provide appropriate care. Ironically, at a time when genomic technologies have broader clinical applications than ever before, the fear of genetic discrimination is preventing some Canadians from benefiting from these advances. For these reasons, the CMA strongly supports the enactment of Bill without amendment.
My colleague and I would be pleased to address any questions you may have. Thank you.
First of all, thank you to Dr. Forbes and the CMA for taking a very reasoned and proactive stance on Bill , and thanks to all of you for the privilege of addressing this committee on behalf of the Canadian College of Medical Geneticists.
We are the doctors who diagnose and treat patients with genetic diseases. In preparing this statement, we asked ourselves what can we possibly tell you that you have not already heard from informed individuals such as MP , Senator Cowan, and Bev Heim-Myers, from esteemed researchers, and also from very learned constitutional experts.
We can speak as doctors across our country who care for patients with genetic conditions. We can say very clearly that genetic discrimination and fear of discrimination are not just theoretical, as some have argued. We can say that it truly changes behaviour. We can say that it influences patients' decisions in clinics across the country every single day. We can say that it sits in the clinic room between us and our patients when they consider the pros and cons of a predictive genetic test for hereditary cancer, for example.
We can say that it lingers forever when a patient declines a test that had a 50% chance of demonstrating that she does not have a hereditary cancer syndrome and therefore might not require the imaging surveillance that her doctor will be compelled to recommend for the rest of her life. We can say that it sometimes wastes health care dollars, and we can say that it prevents some of our patients' family members from ever seeking or following through with a referral to our clinics. I know that Dr. Forbes has had that very experience.
We can say that it deters patients from participating in the very research that might further our understanding of their genetic condition. We can also say that genetic testing is not always valid and not always straightforward, because our interpretation of test results is in its infancy and is evolving rapidly over time. Sometimes, genetic testing mislabels individuals with genetic conditions or predispositions to a particular disease, when in fact they are healthy and will remain healthy.
For all of these reasons, the CCMG unequivocally supports Bill . We commend the senator and his policy adviser, Barbara Kagedan, for their tireless work, which has recently been recognized internationally in the form of an Advocacy Award from the American Society of Human Genetics.
You have already heard that we are the only G8 country that does not enjoy this protection, and I find it ironic that this initiative is celebrated by another country before it has even been enshrined in law here in Canada.
Our first message, which is not new to you, is that we must act now, not months from now and not years from now. The complete sequence of the human genome was drafted in 2000. Just over 15 years later, we have already linked 5,000 of the estimated 20,000 genes to so-called rare human genetic diseases, and we know of thousands more gene variants that influence predispositions to common health conditions such as diabetes and heart disease.
Those numbers are rising every single day. Genetic testing has become a critical tool in many disciplines of medicine, not just to diagnose disease, but also to guide the selection of personalized treatments. That includes imaging surveillance and medications.
This is the very promise of the human genome that Francis Collins spoke of in his historic announcement of the completion of the human genome project just over 15 years ago. It is incredibly empowering, both for patients and for their doctors, but as long as there is no legislative protection for genetic information, patients are vulnerable, and if our experience to date is any judge, many of them will forgo the benefits of genomic medicine. I feel very strongly that we have a duty to change that.
Our second message is that you are our patients. Most of you, at some point in your lifetimes, will have the ability to determine your susceptibilities to common diseases through genetic testing. Would you prefer to have this information to yourselves and act upon it to mitigate your risks, or would you prefer that it is also in the hands of your insurers or your employer? How comfortable would you be in subjecting yourself to a genetic test without this protection? How comfortable would you feel if I asked you to provide a sample of your saliva to a genetics laboratory before this legislation has passed?
Our third message is that, yes, it is important to alter the Canadian Human Rights Act to include the words “genetic characteristics”. Canadians believe that it is equally as abhorrent to use one's genome against an individual as it is to use their race or their disability. Canadians believe in protecting our most vulnerable, whether they are disabled by birth or by accident.
These are values we embrace, and our human rights act should reflect that, but that is not enough. Without the other two pillars of the stool, the non-discrimination act and the amendments to the labour code, there will be no deterrent to insurance or employment discrimination on the basis of genetic test results.
I've read the transcripts of these hearings. I know that you have already heard that the Office of the Privacy Commissioner has two studies that do not predict that the insurance industry will be harmed by this legislation, and that similar legislation in other countries has not hampered that industry. You have already heard from three of four constitutional expects that this bill is soundly within the purview of the federal government.
You have already heard that the provinces have not raised concerns about this legislation, despite being given ample opportunity to do so. You have already heard that Ontario is moving to support the concept of protection against genetic discrimination with Bill 30, which would amend the provincial human rights act, and that you have heard that Bill 30 is designed to work in partnership with Bill —they need each other.
The CCMG urges you to do the right thing for Canadians and endorse this bill without amendments.
What I want to be able to say to my patients is that you don't have to worry about this anymore. You can make the choice that's best for you and for your family without fear. You can base your decisions on sound medical evidence.
Thank you very much. We appreciate the opportunity to offer our perspective.
Thank you, Mr. Chairman.
I echo the chairman's sentiments. Thank you for your testimony here this morning. Like all of you sitting at that end, I'm excited about this legislation. In general, I support it; it may require a bit of tweaking yet.
As technology develops and there are advances in what we're able to do from a medical perspective in gene testing and DNA testing, I think it's important that we also create the proper parameters that as a society and as a country we decide we want to operate within.
All of you so far have indicated that you provide wholehearted support for the bill as presented, without amendment. I do have some questions. I want to refer specifically to clause 6, which is an exception clause. This particular legislation provides very clearly that anybody is prohibited from providing goods or services or requiring people to undergo DNA tests with the exception of the health care community: health care practitioners, researchers, physicians, or pharmacists.
Help me understand why they should be exempt from exercising discrimination against individuals.
Yes, although we also hear from family members who do come to us that their relatives are choosing not to solicit or not to act on a referral. In that regard, even as recently as two days ago I was paged by one of my colleagues whose child is due to be seen in our clinic regarding the possibility of a condition called neurofibromatosis. It's relatively common. About one in 3,000 people have it. Most people do pretty well, but there is a risk, especially in adulthood, of some nasty tumours associated with this condition that are occasionally life threatening.
She called me specifically to ask me if she came to the genetics clinic and her child was diagnosed with this condition, would that impair her insurability? I said that I had to answer truthfully that it could. It could impair her insurability. She's only 13. If she is diagnosed with that condition, then it may become very difficult for her to obtain life insurance, disability insurance, and so on. That child will not be coming to see us, for that very reason.
I have a number of patients that I see because of the possibility of a hereditary cancer syndrome. One of them who I saw fairly recently is a lady who has temporary employment and moves from employer to employer. I saw her because she has a 50% chance of having a hereditary cancer syndrome that's associated with a very aggressive form of kidney cancer. She decided not to have the test that would diagnose that syndrome or, on the other hand, free her from that concern, because she's afraid that she will be subject to employment and insurance discrimination associated with her employment.
Thank you very much, Mr. Chair.
Thank you to the witnesses for appearing today.
It's good to see you again, Dr. Forbes. I remember our meeting earlier in the year.
As you've correctly referenced, we've had some very illuminating testimony on this bill from constitutional experts. The government feels that this particular bill is going to be imposing federal jurisdiction in an area of traditional provincial jurisdiction, in contracts and services; however, that view has been counteracted by none other than Professor Hogg. Professor Hogg is probably the most-referenced constitutional scholar in Canada, and I think that when he speaks, he speaks with a certain amount of authority. It is clearly within his view that the constitutionality of this bill falls strictly within federal criminal law power. He feels it's a valid exercise.
However, to be fair, I do want to read out to you some of the opposing legal arguments that have come from the Torys law firm, which was hired for the insurance industry. They feel that courts have relied on the criminal law power to uphold a variety of federal statutes on the basis of a “public health evil”. In each of the cases, the criminal law power has been directed at human conduct that has “an injurious or undesirable effect on the health of members of the public”. Their conclusion is that they feel that the first clauses of Bill do not address a public health evil.
Dr. Forbes, I'd like to get your response to that.
Thank you for the question. I'm very happy to answer this.
As I touched on earlier, we can say that in Canadian society the question of discrimination is recognized as a fundamentally ethical issue. Discrimination can lead to a violation of one's integrity or one's autonomy, and those are principles that we value in Canadian society. Those are principles that are integral to our health care system today.
What I can say is that if we understand genetic discrimination as being part of what constitutes discrimination, it touches on what we consider to be some of the most fundamental ethical issues in health care, which are questions of equity, of access, of equitable access, of appropriate care, and, from a public health perspective, I would even add appropriate use of scarce resources.
To summarize, this question of genetic discrimination, if we understand it to be as constituting discrimination—and I think we can all agree that discriminating against someone based on their genetic characteristics is discrimination—really touches on the most fundamental ethical issues that we value in Canadian society.
Absolutely. I think it's hard to overstate what's happening. It's a real revolution in medicine. It is something that we had hoped and anticipated would happen when all of the three billion letters in the human genomic code were put together in a draft sequence in 2000 and then finalized in 2003. We are now seeing that promise.
Genetics will become a core component of all of medicine, so that when you go to your family doctor and you're found to have hypertension, your family doctor will have a point-of-care tool that allows him or her to decide which of the dozen or so anti-hypertensive medications you are most likely to respond to, in addition to advising you to lose weight and exercise—all of those things. It will literally become part of every branch of medicine. It's what we call “pharmacogenomics”: using the variants in our genome to decide how to target medications to that person. We will no longer be taking the one-size-fits-all approach for medications, which is that if you're a male you start with this medication and then work through a series of them. We'll be able to go to medication number five right away because that's what works for you.
It really is hard to overstate how it's going to change things. We're just starting to see this infiltration of genomics into the rest of medicine. In my world of relatively rare genetic conditions, we've been using genetic tests for a couple of decades, but now we're starting to see this infiltrating into the rest of medicine, which is what we wanted, but that's why the timing is so critical. We can't afford to wait, because patients need to be able to make decisions on the basis of medicine and evidence and set aside the fear of discrimination by their employer or their insurance company.
Thank you for coming in today and presenting some very compelling testimony.
Dr. Forbes, initially in your testimony you mentioned that Canada is the only country in the G8 that does not have some form of regulation of genetic discrimination. With this proposed legislation, we would create imprisonment as a possible penalty for those who discriminate based on genetics. Looking at international law and trying to compare where Canada would stand, I see that the U.S., Austria, Finland, and Ireland have monetary penalties. France and Israel have imprisonment as penalties. I could go on.
Have you seen effects in the international community with respect to how it impacts discrimination whether monetary penalties only are involved or whether it's imprisonment as well as monetary penalties?
Thank you for that question.
There are two categories of genetic tests with respect to this question. One of them is the single gene test, such as the test for Huntington's disease, where there is a definitive test result: you either will or will not develop that disease, depending on that test result. Those are very reliable tests that we use in the context of our medical relationship with patients.
The second category, which you alluded to, are genomic variants, the little variations in each of our 20,000 or so genes that may contribute a small amount toward what we call a “complex disease”, such as heart disease. There are probably many genomic variants that contribute to the predisposition to heart disease, and that aspect of genetic testing is still very much emerging.
The best example I can give you of the unreliability of that information is that direct-to-consumer genetic test companies are using those variants to offer patients. Patients swab their mouth, send it off in a kit to a company, and get back a report about all the variants in their genome and ostensibly what their risk is of having heart disease, Parkinson's, and various other things.
If you take the same person's swab and send that to six different direct-to-consumer test companies, you will get six completely divergent results. You will get one company saying that the person is at high risk for heart disease, another saying they're at average risk, and another saying they're at low risk. This is published. There are published studies, as well this being anecdotal.
In fact, I just read a published study last night that speaks to this very issue. It is extremely dangerous for insurance companies to base their assessments of risk on this kind of data. It is not ready for prime time.
Mr. Falk touched on an interesting line of questions that I would like to continue. Clause 3 states:
||It is prohibited for any person to require an individual to undergo a genetic test as a condition of
|| (a) providing goods or services to that individual;
I can see medical treatment as a service, so that makes sense to me. Also, it states:
||entering into or continuing a contract or agreement with that individual;
If that kind of contract is related to the providing of treatment, that makes sense to me. As well, there is:
||offering or continuing specific terms or conditions in a contract or agreement with that individual.
Again, if it were all about treatment, that would make sense to me.
However, the exclusions in clause 6 are far broader than that, in my view. I would agree with Mr. Falk on this point. If that exception were to be reduced to the aspect of providing treatment to an individual, I think I'd be okay with that. Would you like to comment on that?
I was going to add that when I read clause 6, it does implicate the physician, pharmacist, or other health care practitioner as providing health care services, and that the person doing the medical and scientific research is in respect of the individual who is participating in the research. There is already a professional relationship there.
I guess I'd just like to remind the committee that, in addition to the college, as physicians we abide by the Hippocratic oath, which is to do no harm. Also, of course, our college regulations would insist on all of the other principles that we practise by every day, which include confidentiality and only doing things in the best interests of the patient. I think there is a lot of protection already in existence for those relationships.
Certainly, with medical research, there are a lot of protections with ethics boards and many safeguards that protect participants. In those cases, participants sign very clear consents that they understand what the research is about and what their role is. I think there are a lot of safeguards. I don't really agree with there being a lot of concern about that.
I want to turn to a different issue, and in particular the Torys opinion. I don't know if any of you have had an opportunity to review it. I certainly am not necessarily endorsing the legal analysis, but it's their argument that, in order for Parliament to properly exercise its criminal law power in matters relating to health, there must be a public health care “evil” or a health care “evil”, and that's right. That's accurate. They try to distinguish the underlying purpose of Bill as not combatting a “public health evil”, but rather promoting “beneficial” medical health practices.
I know you have alluded to the different negatives or consequences of someone forgoing genetic testing, but maybe you could put on the record what it might mean for the health of an individual who, for whatever reason—because of fear of discrimination—decides that they don't want to undertake a genetic test. What might that mean for that patient's health?
I think a couple of things are involved in what you're saying. We have the broader issue for the whole system of public health, and then the issues for the individual.
Specifically for the individual, it may mean they will not avail themselves of what would be the best medical care available to them, given their condition. They may not be offered treatment such as something radical like surgery or something very invasive, because it wouldn't be justified without a positive test. They may not be offered the appropriate treatment. As mentioned, when we start to see the pharmacology based on the genetic code of an individual, that will not be available to patients as that becomes more common. They may have a delayed or absent diagnosis. They may never actually get diagnosed with their underlying condition, because they have not had the testing that would show that. By not availing themselves of the best treatment, they may have increased mortality and morbidity, so they may die younger. They may be more ill. There may be other consequences for the health care system in a delayed diagnosis.
I have a colleague who actually has a family history. Her father is from a family of 10 in Prince Edward Island. All 10 developed early-onset dementia: 10 out of 10. The gene has been identified. She is not willing to go into clinical trials. Actually, there are none here, but in the States there are clinical trials for treating patients like her before they develop symptoms. But she's not willing to be tested because of concerns about insurability. It brings up another public health issue of patients not willing to become part of research projects. There is no benefit to her at this point without any proven treatment. There is only the downside of the insurability issue. That's a broader issue of not having people entered in clinical trials because they are not willing to take that risk.
I think I've outlined quite a few of the issues that patients would really would be facing.
Thank you, Mr. Chair and colleagues.
My first question is for Dr. Graham. We heard what I thought was some pretty compelling testimony on Tuesday from the Institute of Actuaries. They talked about a situation in which a patient has an EKG that indicates a diagnosis and where there could be a genetic test that could result in the provision of the same information. One needs to be disclosed. The other doesn't.
That brings me to the whole question of the nature of the genetic information, in that certain information is for diagnostic purposes, certain information is for predictive purposes, and certain information is for research. Bill does not differentiate between any of the proposed purposes, but in England, for example, they do.
I'd be interested in your perspective on the value of differentiating within the legislation the purposes for which the genetic information is being used and adopting or tailoring rules around its disclosure based on its use.
Colleagues, would you be okay with my following up on Mr. Falk's question? I would like to follow up on what Mr. Falk and Mr. McKinnon were asking about, because I'm not sure that it came out as clearly as I would like.
In essence, as Mr. Falk pointed out—there are things that get pointed out that you suddenly recognize when a colleague brings it up—clause 6 gives a wide latitude of protection to medical practitioners and researchers to be exempt from clauses 3 through 5 of the bill.
Dr. Forbes correctly stated that medical practitioners have ethical obligations within their profession that also regulate them, but the same could be argued of lawyers and accountants and many other professions, yet they are not exempt. Clause 3 of the bill—and I want to read it clearly because I want to understand, and maybe there's a really clear reason why—states:
||It is prohibited for any person to require an individual to undergo a genetic test as a condition of
Let me ask you this. Would there be any reason why a physician would say to someone, “I will not treat you if you will not undergo a genetic test”?
For all of those watching at home, “Torys” in this case means the Torys law firm, not the Conservative Party.
Voices: Oh, oh!
The Chair: I want to thank all of you. Your testimony has been enormously helpful to the members of the committee.
We're going to go in camera, so we'll have a short break for everybody to clear the room.
Again, thank you so much, ladies.
[Proceedings continue in camera]