Justice Committee on Nov. 24th, 2016

[The Chair, Liberal, Anthony Housefather]

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 S-201, an act to prohibit and prevent genetic discrimination.

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.

Welcome, ladies.

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.

[Dr. Cindy Forbes, Past-President, Canadian Medical Association]

Thank you very much.

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 S-201, 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 S-201 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 S-201 without amendment.

My colleague and I would be pleased to address any questions you may have. Thank you.

[The Chair, Liberal, Anthony Housefather]

Thank you very much, Dr. Forbes.

Now we will move to Dr. Graham.

[Dr. Gail Graham, Past-President, Canadian College of Medical Geneticists]

Thank you very much.

First of all, thank you to Dr. Forbes and the CMA for taking a very reasoned and proactive stance on Bill S-201, 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 Oliphant, 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 S-201. 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 S-201—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.

[The Chair, Liberal, Anthony Housefather]

Thank you very much, Dr. Graham.

Thanks to all of you for your testimony. We're now going to questions.

We'll start with Mr. Falk.

[Ted Falk, Conservative, Provencher, MB]

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.

[Dr. Gail Graham]

Thank you for that question.

Physicians must discuss genetic testing with their patients when there is an indication for that test. That's exactly what I do. I see patients who may have genetic conditions. I do a medical assessment, I counsel them about the likelihood that they might have a genetic condition, and I discuss a genetic test with them. You can imagine why that kind of interaction with a patient would have to be exempt from discrimination.

[Dr. Cindy Forbes]

Perhaps I could also reinforce the fact that this information within the patient-physician relationship is confidential. That's not changed at all in that exemption.

[Ted Falk, Conservative, Provencher, MB]

I can appreciate exactly what you've indicated and what you've said, but my concern goes a little deeper and a little further than that because, as researchers, pharmacists, and physicians, you actually have the ability to discriminate. According to this legislation, the way it's drafted today, you have the ability to withhold goods and the ability to withhold services from individuals based on whether or not they've submitted to a DNA test.

I'm wondering whether, as a group or as an association, you would have any recommendations for us there. I understand that people are well-intentioned, well-meaning, and that from a Puritan's perspective, we shouldn't need to have a safeguard there. But as a community of health care providers, you have a blank cheque here to discriminate if you choose to. I'm not saying that your intention is to do so. That would be the furthest thing from me.... It appears as though this exception clause allows you to do that if there are individuals who choose to do that.

[Dr. Gail Graham]

I guess one response to that would be that in the absence of any legislation we have that ability as well. As you know, physicians are regulated through the college of physicians and surgeons. For us to discriminate against our patients would be considered gross misconduct. There are already safeguards in place to prevent physicians from discriminating against their patients, whether it's for genetic reasons or any others, such as, for example, discriminating against patients because they're of a different race. I'm not sure if I understand the concern.

[Ted Falk, Conservative, Provencher, MB]

I understand that, and I understand the ethics boards and associations that you're subject to, but it does seem to provide a very blank cheque for individuals within your community. I'm not saying that the community as a whole would discriminate, but we're providing legislation that would protect people from being discriminated against, and now there's a segment of people who have been given an exception clause to discriminate without penalty. I'm concerned about that.

[Dr. Cindy Forbes]

It was really our interpretation that this allowed physicians to have the discussions with their patients—

[Dr. Gail Graham]

That's right.

[Dr. Cindy Forbes]

—and is not in any way exempting them from discrimination. That was really our interpretation.

[Ted Falk, Conservative, Provencher, MB]

I recognize the intent of why it's there, but when I read it and I try to make sense of it, I think it's broader than what the intent was. I'm wondering whether there needs to be some kind of safeguard or....

[Dr. Cindy Forbes]

That certainly wasn't our interpretation.

[Ted Falk, Conservative, Provencher, MB]

Okay.

[Dr. Gail Graham]

No, I think the intent is to allow for appropriate health care to go ahead and not be hampered.

[Ted Falk, Conservative, Provencher, MB]

I really appreciate that. It's just that I see that the window is open further than that, and it's something that I think may need to be addressed.

I have another question. Any of you can answer. Could you give me any examples of discrimination that you've witnessed and that this legislation will address?

[Dr. Cindy Forbes]

I think that mainly what I've seen as a family physician is the fear of discrimination, with patients not being tested for genetic abnormalities because they're fearful that they won't be insurable or they won't be eligible for employment in a certain field. That fear is very real, and they act on that fear.

I can give you some examples. We have patients in our practice who are twins. One was diagnosed with breast cancer at the age of 43, and the other twin at the age of 44. There likely could be a genetic cause, but neither of them is willing to be tested because of the fear of uninsurability and the implications for their children as well. Their decision not to be tested has actually caused quite a rift in the family; there are various opinions because it affects so many different people.

If these women were tested because of the nature of the gene they have and if they were positive for the nature of the cancer they have, they would be offered treatments—surgical treatments, perhaps removal of their ovaries, or mastectomies and other treatments—that would not be available to them if they were not—

[Ted Falk, Conservative, Provencher, MB]

Part of that testing.

[Dr. Cindy Forbes]

Yes, if they were not tested.

Those are the kinds of examples that I would see of people refusing.

I have another example in my practice of a family with a hereditary heart disease. The father has the gene. There are three children. One has decided to be tested, and she is positive, so she's under close surveillance. The other two have not because of fear in terms of employability.

[Ted Falk, Conservative, Provencher, MB]

Okay.

[Dr. Cindy Forbes]

That's not to say that they can't be followed, but perhaps they don't need to be. They're even fearful of being assessed regularly for fear that will indicate that they won't be able to be employed.

Those are very real things that are happening in our practices. Some of the things that happen never come to our attention. The conversations are taking place before we see them in our offices. Also, many of them never reach the geneticists, because those decisions are made before they've had a chance to have proper genetic counselling.

[Dr. Gail Graham]

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.