Bill S-201 (Historical)

Genetic Non-Discrimination Act

An Act to prohibit and prevent genetic discrimination

This enactment prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract with, or offering specific conditions in a contract with the individual. Exceptions are provided for medical practitioners and researchers, as well as for insurance providers in respect of high-value insurance contracts if provincial laws expressly permit a requirement that existing genetic test results be disclosed.
The enactment amends the Canada Labour Code to protect employees from being required to undergo or to disclose the results of a genetic test, and provides employees with other protections related to genetic testing and test results. It also amends the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics.

The House proceeded to the consideration of Bill S-201, an act to prohibit and prevent genetic discrimination, as reported (with amendment) from the committee.

[The Chair, Liberal, Anthony Housefather]

Thank you very much, Mr. MacGregor.

Before I thank the witnesses, because I don't want to lose the members of the committee, we have the request for the project budget approval for our study on Bill S-201 in the amount of $11,100.

Do I have the approval of members of the committee to agree to this budget so that we can reimburse the witnesses on Bill S-201?

Mr. McKinnon, will you move that?

Justice and Human Rights

[Anthony Housefather, Liberal, Mount Royal, QC]

Mr. Speaker, I have the honour to present, in both official languages, the seventh report of the Standing Committee on Justice and Human Rights on Bill S-201, An Act to prohibit and prevent genetic discrimination.

The committee has studied the bill and has decided to report the bill back to the House with an amendment.

[Colin Fraser, Liberal, West Nova, NS]

That's why I explained it in the way I did, where S-201 comes into effect, C-16 would wipe out S-201's wording.

[Peter Monette, Manager, Bioethics and Science Advice, Strategic Policy Branch, Department of Health]

Yes, I'll take a shot at this. As clarification, I'm with Health Canada, not with Justice.

The concern I have with the amendment is that it offers a bit of a problem with interpretation. The original Bill S-201, from our understanding, has quite general provisions for physicians, pharmacists, and researchers, so we didn't have any issues with it. We thought that our practices were exempt.

I think the amendment introduces some issues with interpretation so we do.... As has already been mentioned here, several interpretations have to be done both for the practice of medicine and also for research. We would have to go back to try to find out what all those implications would be, and we haven't had the time to do that.

[The Chair, Liberal, Anthony Housefather]

It's great to have you both.

Today we're proceeding with our clause-by-clause study of Bill S-201, an act to prohibit and prevent genetic discrimination.

From the Department of Justice today we have Laurie Sargent with us. Laurie, I'm not going to use your huge title today. You've been here enough times that everybody knows you now. We're joined by Élène Bérubé, by Peter Monette, by Lori Straznicki—and it's always good to have a second Lori here—and Barbara Moran.

Welcome to all of you. You're here to answer our questions with respect to anything that we have as we go through clause-by-clause review. Members of the committee can feel free to call upon you if they have questions or clarifications. Again thank you very much for being here.

Ladies and gentlemen, we're going to proceed to the bill.

Our first item is going to be clause 2, which is the interpretation clause.

Does anyone have any amendments they wish to propose to clause 2?

Not hearing any, I will then move to the vote on clause 2.

(Clause 2 agreed to)

(Clauses 3 to 5 inclusive agreed to)

(On clause 6)

Mr. Falk has presented an amendment to clause 6.

Mr. Falk.

[The Chair, Liberal, Anthony Housefather]

Ladies and gentlemen, welcome to this meeting of the Standing Committee on Justice and Human Rights.

We are going to proceed to our clause-by-clause review of Bill S-201, an act to prohibit and prevent genetic discrimination. We have one short item before we do that, which is the NDP is replacing its committee member, and Mr. MacGregor is now going to be joining our committee permanently. I'm going to turn it over to the clerk for one brief moment.

Mr. Clerk.

[Sean Casey, Liberal, Charlottetown, PE]

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 S-201 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.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you for 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 S-201 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?

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you.

Ms. Bensimon, I'm very interested in this. So far, we have just been looking at the constitutionality of this bill, and there have been so many legal arguments, but seeing as you hold the very interesting position of director of ethics, I'm wondering if you could inform this committee of how you approach viewing Bill S-201 from a purely ethical standpoint.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

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 S-201 do not address a public health evil.

Dr. Forbes, I'd like to get your response to that.

[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.

[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.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you. I'm going to move on to Dr. Cohn.

Dr. Cohn, earlier today, and of course before today's committee hearing, we received the submission from the Torys law firm, which outlined why they oppose Bill S-201. Specifically they state that clauses 1 through 7 of Bill S-201 do not address a public health evil. That is their position. They feel that criminal law power cannot be used to promote medical practices.

I would argue that, yes, it's not up to federal criminal law power to promote medical practices. That's your job. That's the job of provincial health ministries. However, given your testimony and your direct experience, would you not say that this law is trying to create the conditions in which you can operate freely to promote health, to protect your patients' fears of a legitimate concern over discrimination?

I would like you to go into a little more detail on that particular aspect.

[Ahmed Hussen, Liberal, York South—Weston, ON]

Thank you, Chair.

Thank you, gentlemen, for coming in to speak to this committee about Bill S-201.

My first question goes to Mr. Boudreau and Mr. Howard. You mentioned in your paper to us that, according to your research, premiums could go up by 30% for males and by 50% for females, regardless of their genes or whether they have been tested or not.

According to the testimony of Senator Cowan, one of the sponsors of the bill before our committee, he indicated that for the countries that have instituted a ban on genetic discrimination there was no significant increase in premiums, certainly not 30% to 50%. Do you care to comment on that?