THE STANDING SENATE COMMITTEE ON HUMAN RIGHTS
EVIDENCE
OTTAWA, Wednesday, February 17, 2016
The Standing Senate Committee on Human Rights, to which was referred Bill S-201, An Act to prohibit and prevent genetic discrimination, met this day at 11:30 a.m. to give consideration to the bill.
Senator Jim Munson (Chair) in the chair.
[English]
The Chair: Good morning, senators. This is a dawning of a new age for the Human Rights Committee. We have a lot of work to do over the next few years, and I'm pleased to be your chair, along with your deputy chair, Salma Ataullahjan.
Before we begin, I'd like to have our senators introduce themselves, and then we'll get back to business.
Senator Frum: Linda Frum, Ontario.
Senator Ataullahjan: Salma Ataullahjan, Ontario.
Senator Oh: Senator Oh, Ontario.
Senator Cordy: Jane Cordy from Nova Scotia.
Senator Martin: Yonah Martin, British Columbia.
The Chair: On a housekeeping note, we don't have the pages with us this morning. They're at their swearing-in ceremony, which is always a wonderful occasion. I shook their hands; many of the pages end up working in the Senate, they like it so much. That's where they are this morning.
[Translation]
Today, we are beginning our study of Bill S-201, An Act to prohibit and prevent genetic discrimination.
[English]
Senators will know that this committee studied this bill last session. This version of the bill is not identical. Some changes have been made to the bill, which we hope to have explained to us this morning by our first witnesses, who we will introduce shortly.
[Translation]
Yesterday, the clerk sent everyone the transcripts of the meetings during which the committee discussed this topic so you could have a look at them. This time, however, the committee will not hear from witnesses, as they will be asked to submit written briefs regarding amendments to the bill.
[English]
We also sent a letter, honourable senators, to all provinces to ask their input on this bill. Their responses will be transmitted to all members.
This morning, we are pleased to welcome the sponsor of the bill, Senator Cowan, to start us off. I understand Senator Cowan has with him Barbara Kagedan, his assistant, should he need any assistance in answering the questions.
Senator Cowan, the floor is yours.
Hon. James Cowan, sponsor of the bill: Thank you, chair. I'm pleased to be here today to launch your study of my private member's bill, S-201, An Act to prohibit and prevent genetic discrimination. This is the third time I've tabled legislation to combat genetic discrimination and the second time, as you mentioned, that this committee has studied the issue.
I know there are several new members of the committee, including you as the new chair, so I want to take a few minutes to provide an overview of the issue: why I introduced the bill and what it would do, with particular focus on the changes I made to the bill from the previous version. Most of these changes were as a result of, and in response to, issues and concerns that were raised here in this committee, and I want to thank the committee for drawing these matters to my attention. I believe the current bill is the better for our process last time.
The reason why I introduced my bill is quite simple: It is to bring our law up to date, as has already been done in many other Western nations, so that Canadians can take advantage of the extraordinary advances in medical science that are now possible thanks to genetic testing, without fear that if they do so they will be opening themselves up to discrimination. Unfortunately, today, too many Canadians are reluctantly choosing not to have genetic testing that their doctors believe would help their health care, and they're making that choice not because of concerns about the genetic testing, but because of fear of them being supposed to genetic discrimination.
In brief, scientists have and are continuing to identify genes associated with particular diseases. With each discovery comes new possibilities for treatments, and in some cases, even being able to prevent the disease from developing in the first place.
The pace at which medical science is advancing is nothing short of staggering. When I first spoke on this issue in April 2013, I observed that 10 years before that, in 2003, approximately 100 genetic tests were available. When I spoke in April of 2013, the number had jumped from 100 to 2,000, which I thought was pretty impressive. Today, not three years later, the number of genetic tests available is over 32,900.
For Canadians, the benefits can be very tangible and critically important. Armed with the information that one has a genetic predisposition to develop a particular disease or condition, there may be steps that a person can take to actually reduce the chance that the disease or condition will develop in the first place.
Angelina Jolie brought international attention to this in 2013 when she went public with her story. She found out she carried the BRCA1 genetic mutation, which is known to increase a woman's chance of developing breast cancer by as much as 87 per cent. Armed with this knowledge, Ms. Jolie had preventive surgery. She reduced her 87 per cent chance of developing breast cancer to under 5 per cent. She had watched her mother suffer and die from breast cancer. After her surgery, she wrote in the New York Times:
I can tell my children that they don't need to fear they will lose me to breast cancer.
There are genetic tests for other diseases with similar dramatic stories and extraordinary health benefits, a few of which I described in my second reading speech last month. There are many such stories, and that is just one part of what is possible thanks to genetic science and genetic testing.
I hope the committee hears from doctors and scientists who are working in the field. There have been extraordinary advances, even just since this committee met last time on this issue. Whole-genome sequencing is increasingly a critical part of medical care, and the new science fiction-sounding world of personalized, or individualized, medicine is fast becoming a reality. Instead of prescribing a treatment that works for the average person — usually the average man — with the average manifestation of a disease or condition, a one-size-fits-all medicine, doctors will be able to focus on the actual person in front of them with that person's unique genetic makeup and the actual disease she or he is suffering from.
This is happening now. I attended a conference in August in Montreal on personalized medicine that brought together scientists and others from around the world. Just two weeks ago a forum was held in Toronto on pharmacogenetics, the science of matching prescriptions to a person's genetic code. Some of you may have read the long article in The Globe and Mail this week about pharmacogenetics called "Your Pharmacist's Secret Weapon." All of this, colleagues, is because of genetic testing, and it begins with genetic testing.
The problem we face right now is that Canadians who are considering having genetic testing must consider the possibility that if they discover that they carry a genetic mutation associated with a disease or condition, they may find themselves facing genetic discrimination. There is nothing in law in Canada at the federal or provincial levels to prevent anyone demanding the results of any genetic testing someone may have had and then using that information to that individual's detriment. In Canada, unlike most other Western countries, there is no protection for this, and that is the problem that Bill S-201 is designed to address.
Fear of genetic discrimination is stopping many Canadians from having genetic testing that their doctors believe would benefit them. Colleagues, that fear is well-founded because genetic discrimination in Canada today is all too real.
When I spoke at second reading, I told the story of a 24-year-old young man who was tested for the Huntington's gene. He tested positive. On the Friday, his employer asked about the results of his testing and the young man answered honestly. On Monday, he was fired.
He doesn't have the disease and is unlikely to show any symptoms for many years — decades, in fact — but without protection from genetic discrimination, there is nothing this young man can do.
Colleagues, this is wrong. Unfortunately, more and more Canadians are finding themselves regretting having taken a test because of the impact that it's having on their lives. This is not the impact of a disease; we're talking about the impact of discrimination based on what is contained in their genes.
Dr. Yvonne Bombard wrote her doctoral dissertation on genetic discrimination in Canada. She testified before this committee last time and described what she has documented. She found genetic discrimination by the insurance industry, employers and others. She documented genetic discrimination on issues of child custody and access. Of course, as the world of genetics develops and genetic testing is becoming more common, more and more instances are emerging.
Let me now explain what Bill S-201 would do. The bill before you has five parts. The previous bills were in three parts; so five minus three is two — there are two new parts.
First, the bill would introduce a new genetic non-discrimination act, and that, in my view, is the heart of the bill. It prohibits anyone from requiring someone to take a genetic test or disclose the results of a previous genetic test as a condition to providing goods or services to that person; entering into or continuing a contract or agreement with that person; or offering or continuing specific terms or conditions in a contract or agreement with that person.
It would similarly prohibit anyone refusing to engage in any of these activities on the grounds that the person has refused to undergo a genetic test or refused to disclose the results of a previous test.
In addition, in this latest version of the bill is a prohibition in clause 5 against someone collecting or using the results of a genetic test of an individual without his or her written consent. For example, this will prevent someone trolling social media to find and use genetic test results against someone.
There are exceptions provided in the bill for a physician, pharmacist or other health care practitioner in respect of an individual to whom they are providing health care. There's also an exception to enable someone to participate in medical, pharmaceutical or scientific research.
The explicit inclusion of pharmacists and pharmaceutical research is new. I included them because pharmacists are expected to play a larger role in personalized medicine, where prescriptions will be specifically designed for a person's actual genetic makeup.
Every person who contravenes the prohibitions would be guilty of an offence and liable on summary conviction to a fine not exceeding $300,000 or imprisonment of up to 12 months, or both; and on indictment for more serious offences, a fine of up to $1 million or imprisonment up to five years, or both.
Last time Senator Frum and this time Senator Bellemare asked valid questions about the choice of those penalties. I know they seem high, but they're maximum penalties only to be available to a court for cases that warrant their application. There are no mandatory minimum penalties in this bill.
I also noted that the previous government's anti-spam law, which passed the Senate in December 2010, contained penalties of $1 million for an individual and $10 million for a corporation for sending unwanted email. I think that if it's proportionate to provide those penalties for a case where someone sends somebody an unwanted email, it cannot be disproportionate to provide for significantly lower maximum penalties when we're talking about unwanted access to someone's DNA or forcing someone to take an unwanted DNA genetic test.
One of the roles of a criminal penalty is to serve as a deterrent. I'm hopeful that the penalties I have proposed will do that. No one wants to set the penalties at a level where they may be viewed simply as a cost of doing business.
The second part of the bill contains amendments to the Canada Labour Code, setting out a complaint procedure in the event that a federally regulated employer improperly dismisses or disciplines an employee because the employee refused a request to take a genetic test, or to disclose the results of a previous genetic test, or on the basis of the results of a genetic test. These provisions were not controversial last time. This part of the bill was passed unanimously by committee members at clause-by-clause consideration. In the interests of time, I won't go into detail on the provisions in that part, but I'd be happy to discuss them during the question and answer period if anyone would like to do so.
The one point I will make now is in answer to a question raised by Senator Carignan after my speech at second reading. He asked why that part of the bill applies only to employees and not also to prospective employees also. The answer is: That is the structure of the Canada Labour Code. The code only covers actual employees and not applicants for jobs. But someone denied a job because of genetic discrimination would have the protection of the new genetic non-discrimination act. An employer, like all Canadians, will be prohibited from collecting or using genetic test results without a person's consent. I believe that situation would fall under the new clause 5 of the bill. Of course, if amendments are proposed to strengthen that, I'm certainly open to considering them. As I said on numerous occasions, I welcome suggestions for improvements to this bill.
The third part of the bill proposes to amend the Canadian Human Rights Act to add genetic characteristics as a prohibited ground of discrimination. This amendment was proposed in a number of private members' bills introduced over the years in the House of Commons. During the last committee hearings, the question was raised whether we should define "discrimination on the ground of genetic characteristics." Colleagues will see that the bill now contains a definition.
The fourth and the fifth parts of the bill are new. These are proposed amendments to the Privacy Act and the Personal Information Protection and Electronic Documents Act, or PIPEDA, to clarify that personal information under those acts includes information derived from genetic testing.
Colleagues will be aware that last June, just before Parliament rose for the summer, the previous Conservative government tabled a bill to address the issue of genetic discrimination, which they had promised to do in the Speech from the Throne before that. These same amendments to the Privacy Act and PIPEDA were in that bill. Frankly, as I said in my speech in the chamber, I'm not convinced that these amendments add much to the protection that Canadians need and expect from genetic discrimination; but the previous government believed that they would help, and I'm content to accept that and have included them in this version of the bill.
There's one other change to the bill that I want to mention. A concern of several colleagues last time was whether the then-proposed genetic non-discrimination act was constitutional or whether in fact it was a disguised attempt to regulate the insurance industry, a matter that falls within provincial jurisdiction. My purpose then and my purpose now was never to target any particular industry but rather to target and prohibit particular conduct. In fact, as I've explained, genetic discrimination arises and exists in a number of contexts, not only insurance.
One provision in the previous bill referenced the insurance industry. That was actually an exemption from the prohibitions, which I included to try to assuage the concerns of the insurance industry regarding large insurance policies. It became clear last time that the inclusion of that provision was taken as evidence that the bill somehow in pith and substance was about the insurance industry. As I say, that was never my intention. So as to be very clear that the bill is not about the insurance industry or any industry for that matter, I've removed that provision. Now the word "insurance" does not appear anywhere in this bill.
Colleagues, as you see, I've tried to address the issues that were raised last time. I would be delighted to receive and consider suggestions for further improvements that we could make.
In conclusion, let me repeat what I've said before: This is not a partisan issue. In fact, in recent years each of the three main political parties has highlighted the need to address genetic discrimination. Senator Frum's excellent speech during second reading debate underscored our shared commitment to this. Our job now is to try to find the best way to achieve that goal. I've put my proposal on the table, and I would welcome suggestions for changes and improvements. I look forward to working together as a committee to do just that.
Thank you, Mr. Chair.
The Chair: Thank you very much, senator, for your opening statement.
We've allotted up until 12:15 for the senator to take questions. If we run out of questions, then we'll have more time for the other witnesses who will appear, and there are quite a number of them on different sides of this issue.
Senator Frum, who is the critic on this bill, will open up questioning.
Senator Frum: Thank you, Senator Cowan. As you pointed out, this is your second time presenting and this is my second time being critic on this bill. As I've said to you before and you mentioned my speech, I will say again that I strongly commend you for the work that you have done on this issue. I know this is something you have put a great deal of effort into. You have a very sincere and passionate interest in this. You have done a great service to Canadians because you are flagging attention to an issue where legislation in the country lags behind scientific advancement. To that extent, I'm fully in support of you and I appreciate what you've done.
As you know, where we have had some difference of opinion on this bill has to do with the constitutionality around issues of jurisdiction. I'd like to ask you if you believe or if it is your intent that this bill will address genetic discrimination inside the insurance industry. Is that the purpose of the bill?
Senator Cowan: Well, if this bill were passed and insurers engaged in the conduct prohibited by this bill, then they would be subject to the penalty, as would any other Canadian individual or organization that engaged in the conduct which is prohibited. I'm seeking in this bill to prohibit a course of conduct by anybody, and if insurers engaged in that, then they would pay the same penalty as any other person who contravenes the law of the land.
Senator Frum: Because it's fair to say that while genetic discrimination is not exclusive to the insurance industry, it is in fact where most of it happens.
Senator Cowan: That's my understanding, yes.
Senator Frum: I always say that you're the lawyer and I'm not. Why do you feel confident that this bill would then survive a constitutional challenge by the insurance industry potentially, that the bill transcends jurisdiction and is applying federal law to a provincial area?
Senator Cowan: I understand the committee will hear from people who are experts in this, as I'm not. I'm a lawyer but I'm not a constitutional lawyer. The advice that I've received both from the Senate lawyers and from outside constitutional experts is that this is a valid exercise of the federal criminal law power, which seeks to prohibit or to police, if you like, a course of conduct.
I mentioned the anti-spam legislation as another example. I'm on a committee now dealing with the issue of physician-assisted dying. We're in the health care field and there's some concern as to whether this is federal or provincial. I'm not equating the two issues, but I am saying that the advice we've received there and the view I think we all hold is that the federal authority has the power to intervene and to legislate so that there is a regime in place from coast to coast to coast, and then the provinces can come in with complementary legislation. If the legislation is equivalent, then under the doctrine of equivalency, the federal authority can say to the Province of Nova Scotia, as an example, that there is an equivalent regime in Nova Scotia, so in Nova Scotia it is your provincial law which will apply to the exclusion of the federal law.
However, it would be unfortunate if we ended up with a patchwork of anti-discrimination laws so that depending on where you moved, and if you moved from time to time, you might live in the province of Nova Scotia and find that there was a robust regime to protect against genetic discrimination in Nova Scotia, and then you move to take a job in Ontario and find that your employer in Ontario is not prohibited from requiring you to divulge the results of a genetic test that you had taken in Nova Scotia, where you were protected.
I think we would all agree that that would be an unfortunate situation. My view and the experts that I've consulted — and I hope you will hear them when they come — is that the appropriate way to do it is to legislate at a federal level and then the provinces, if they want to, but they're not obligated to legislate in that area, then the doctrine of equivalency will work that out.
I know that Ms. Heim-Myers is on the next panel and, as she told you last time she would, consulted with the provinces about this.
I myself have written to all of the provinces, as has the committee, asking for their views, and I can say to you, senator, that in the three years that I've been engaged in this project, no one who represents a provincial government of whatever political stripe has indicated any concern whatsoever with this legislation. They have all said, "This is interesting; please keep us advised." Nobody has said, "You're digging in my backyard; please get out."
Senator Frum: On digging in people's backyards, how about the clause of the bill which says that the proposed genetic non-discrimination act would prohibit any person from requiring an individual to undergo a genetic test as a condition of entering into or continuing a contract or an agreement with that individual. A contract is regulated under provincial jurisdiction.
Senator Cowan: Property and civil rights normally.
I think, again, what we're trying to do is legislate against discrimination. In my view and in the views of the experts that I've consulted, that is a legitimate use of the federal power to legislate with respect to criminal law. That's the view that I've received.
Senator Frum: I'm interested in getting a few opinions on that because. The outcome you are seeking is no different from the outcome I think all of us around the table appreciate and would like to see. I just remain not completely confident that approaching this bill in this way at a federal level is how we'll get there.
I thank you very much your opinion and, again, I thank you for your hard work.
Senator Cowan: I'm not saying there would not be a challenge. It's a free country and anybody can challenge anything they want. But I'm satisfied that this is a legitimate exercise of the power that we have as federal parliamentarians to legislate in this area. As I've said, I've received nothing, no contrary indications formally or informally from anybody at a provincial level, whether it's in government or in opposition, indicating any concern about that.
You mentioned in your very kind introductory remarks that we're raising the level of awareness about this. I wouldn't want you to have me suggest to you that this is at the top of every provincial government's list of priorities. I think that some of them were simply not aware, as I was not aware when I began to look into it.
That's all I can say about it.
Senator Frum: Thank you, senator.
Senator Ataullahjan: The offence for false pretenses in the Criminal Code can lead to a conviction with a term not exceeding two years. Your amendment proposes an indictable offence with a term not exceeding five years. Did you compare your terms of imprisonment with other sections in the Criminal Code, or do you think that you have achieved consistency with the type of penalties found in the Criminal Code?
Senator Cowan: Well, of course it would be up to a prosecutor to decide whether they will proceed by way of summary conviction, which is the lower level, or, for a more serious offence, by indictable. I can't give you chapter and verse about what other sections are comparable to that. I can certainly get that for you, senator. I would be prepared to provide that.
However, when we were looking at it, we felt that this was an appropriate level of penalties, both by way of fine and imprisonment. I don't have that to hand, but I'd be pleased to get you that and tell you, chapter and verse, which were the sections.
Senator Ataullahjan: Thank you.
Senator Hubley: Welcome, Senator Cowan.
In the United States, the Genetic Information Nondiscrimination Act of 2008 prohibits genetic discrimination with respect to health insurance and employment. In contrast, the United Kingdom has left the insurance industry to establish voluntary restrictions on the use of genetic testing. I'm wondering how Bill S-201 compares with these other approaches.
Senator Cowan: I said in my opening remarks that there are protections against genetic discrimination in most Western countries. They're all different, and you've pointed out two different approaches.
I certainly can't explain to you why the U.K. decided to go in one direction and the U.S. decided to go in another. I can say that with respect to the U.K. there was — like everywhere, I think — a real concern that this would adversely affect the insurance industry. The information that we've received and that was before the committee was that it has not had an adverse effect and that, indeed, insurance rates have dropped in the U.K. in that time.
As I understand the system in the U.K., there was a voluntary protocol where I think it was only with respect to the test for the Huntington's gene that insurers were able to ask about that, but no others. But they were given the opportunity: If you find that your fears are realized and that people are abusing the system, then you're welcome to come back and add genetic tests to the list of exemptions. I haven't looked at it recently, but as of a year ago, in the 10 or 12 years that that system has been in place, there have been no additions to the list of exceptions.
Senator Cordy: Welcome to our committee, Senator Cowan. Thank you very much for the work that you've done in this area. When we look at 100 genetic tests registered in 2003 and 32,600 registered in 2016, your bill is certainly very relevant today, so thank you very much for all the work that you've done.
Just to clarify: You've had discussions with officials at the provincial level, and nobody expressed any concern about stepping on their toes or that it's provincial jurisdiction and not federal jurisdiction.
Senator Cowan: The only discussions that I've had with officials have been in my own province of Nova Scotia, and they have no concerns. I wrote — I think in December — to all of the provinces and territories, explaining what we were doing and asking for their views. I think we've had one reply saying they have no comments to make at this time.
Senator Cordy: So nobody is jumping up and down is what you're saying.
Senator Cowan: No.
Senator Cordy: Thank you very much.
Also, Dr. Ronald Cohn appeared before this committee in 2014, and he said at the time:
If I have a patient who is diagnosed with colon cancer at the age of 50 because of a genetic condition but he didn't know about it, he will be diagnosed at a stage that is going to lead to a lot of surgery, chemotherapy, maybe radiation and lots of costs for the medical health system.
If I know at the age of 20 that this is going to happen, I will avoid the cancer altogether and all of the costs associated with the treatment of the cancer. That's why I'm telling you that our research will prove that the more you know will actually lower the burden on the health care costs.
Do you believe that if people are willing to have genetic testing because there will be no genetic discrimination and if that results in more personalized medicine for the individual, following what Dr. Cohn said, that could actually reduce the costs on the health care system because there's early intervention, preventive medicine and preventive care for the individual?
Senator Cowan: Absolutely.
I had a real-life example. I had a young woman who was a student at one of the Ottawa universities come to see me within the last couple of months. She took a genetic test and found that she carries this BRCA1 gene that I spoke about. She's changed her lifestyle. She's now getting annual mammograms, which would not normally, as I understand it, be available to a 20-year-old woman. So she's hopeful and optimistic that as a result of changes in her lifestyle she will prevent the onset of breast cancer, which her mother or grandmother or aunt had. It was in the family, certainly. As I said, when you carry that gene, there is an increased likelihood of 87 per cent, but hopefully she’s able to prevent that. Also, because she's getting this annual testing, she can catch it early enough if she did get it. That, as you point out, is good for society and the management of its health care budget.
If we can encourage people to take advantage of the tests that are increasingly available, increasingly more accurate, and bring in this personalized medicine, I think people will be healthier. The healthier they are, the less of a burden they are on the health care society, quite apart from their own personal well-being. I think it's a win-win for everybody.
Senator Martin: I echo the comments of our colleagues. I know the work that you have done in this area to bring this to our attention. I want to commend you as well, senator.
I have two questions from a macro and a micro perspective. The issue of genetic discrimination is not something that we have talked about in the past. It's more recent. There was the high-profile story of Angelina Jolie, which got international attention. But, in the world, are there international treaties or discussion toward any conventions that Canada potentially is a signatory to and/or obligated to meet certain international expectations regarding genetic discrimination, or is this a new area of concern on a global level? Other jurisdictions have this, but we're looking at it now. It's an important discussion to have. Would you enlighten us on that?
Senator Cowan: I can certainly provide you with information about what is going on in other countries. Senator Cordy mentioned the U.K. and the U.S. They have it. We have it. Austria, Belgium, Denmark, Finland, France, Germany, Ireland, Luxembourg, the Netherlands, Norway, Portugal, Sweden, Switzerland and then the United Nations, and you mentioned that. There have been several international-level initiatives, and that may be more the focus of your question, Senator Martin.
UNESCO, in 1997, published the Universal Declaration on the Human Genome and Human Rights, and, in Article 6 of that, it said:
No one shall be subjected to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity.
In 2003, the UNESCO International Declaration on Human Genetic Data talked about non-discrimination. They're quite long paragraphs. Perhaps I could provide them to you rather than read them into the record.
In 2005, UNESCO had a Universal Declaration on Bioethics and Human Rights.
In 1997, the Council of Europe's European Convention on Human Rights and Biomedicine spoke about genetic discrimination. There is some ongoing work of the Council of Europe on predictivity, genetic testing and insurance, and they began work back in 1996.
The European Union, in 2000, in its charter, said this:
Any discrimination based on any ground such as sex, race, colour, ethnic or social origin, genetic features, language, religion or belief, political or any other opinion, membership of a national minority, property, birth, disability, age or sexual orientation shall be prohibited.
So there has been some international movement. As I mentioned, there's a lot of work being done in various countries, and we're the only one that doesn't have something.
Senator Martin: That's interesting.
It's also interesting that you haven't received any letters or feedback from the provinces. I'm surprised that they have been silent on this.
I'm curious about some other cases that perhaps you have come across. You mentioned the young man, but to compel us as a committee, and to it put on the record, are there any other compelling examples that you have come across? What percentage of people are we looking at who may be impacted? I ask this question to say that any time we think about legislation, we also think about the others that may be impacted by what we enact for a group. Are there such cases that you have come across and the provinces have been quiet about it?
Senator Cowan: Well, there are. A lot of it is that people are private about these sorts of things and they're not likely to come out, but every time I've spoken about this, I will get an email, a telephone call, a call from a journalist. Somebody will call into a talk show about it and say "That's me."
You'll have Dr. Cohn in front of you, so I'd encourage you to listen in. He testified this to the committee last time. He's an internationally renowned physician in this field. He's at SickKids in Toronto and came to Canada to do this work. He will say that genetic discrimination is much more pervasive in Canada than it was there.
He had a clinic and these are sick kids. He wanted to test them so he could really determine which treatment regimes would be most appropriate for these sick children. Obviously, very concerned parents were there, and they had all said of course we'd do that. He said, "You realize that the results of these tests could be accessed by somebody?"
Barbara Kagedan, Senior Policy Adviser, Office of the Leader of the Senate Liberals: There were two things. One was in personal cases where people had to say no, and it tears at the heart.
It was also this whole genome sequencing study that he was offering, I think he said amongst the sickest patients, to try to figure out what's going on with the different genes. Is there something interacting? What's happening? I think it's now actually more than a third. I think 35 per cent of families have very reluctantly had to decline participating in this study.
Senator Cowan: That gets to me. Imagine — I will use the example of a parent with a child, knowing that this test, this research, might produce results that would make your child well, and you have to decline that because of fear of genetic discrimination. There are those kinds of examples.
I have a colleague — I won't mention the name, but it would be known to all of us; one of our parliamentary colleagues — who came up to me and said, "That's my situation. I carry this gene and I have had surgery. Now I have my granddaughters. They could benefit from genetic testing to know whether they carry this gene, but they can't risk getting the test." That's pretty compelling to me.
Senator Frum: I want to follow up on the case of the 24-year-old who had the genetic test on Friday and was fired on Monday. I'm wondering why provincial human rights codes would not apply to a case like that. You can't discriminate against disability.
Senator Cowan: He was a probationary employee. I think that's the answer.
Senator Frum: But provincial human rights law prohibits discrimination, and it's interpreted very broadly, as it is right now. I'm surprised someone could get fired for that reason legally. I don't think they can.
Senator Cowan: I don't know. I think you might want to ask Ms. Heim-Myers about that because she was the one who told me.
Senator Frum: I see her nodding.
Ms. Kagedan: The other factor — and I don't know the circumstances — is that in order to take something like that on, it requires actually going out and litigating. That also would involve going public with what it is that happened to you. I think for a 24-year-old, just thinking in terms of 24-year-olds that I know, to take that on, that means not only having been fired by this one person but then letting the whole world know what your situation is.
Senator Cowan: That's one of the difficulties of the other kind of regime where it's on the individual to take on the big company, the big insurer, the big service provider. If this bill were to pass, it would be the state that would intervene to prosecute, not the individual who would have to take on an adversary with deeper pockets — let me put it that way.
The Chair: Senator, I can't help myself. I have to ask the reporter question.
You've gone out of your way to say that you're not targeting the insurance companies. It's hard to think that they don't believe that.
Senator Cowan: You'll be hearing from them.
The Chair: That perception is still out there.
Senator Cowan: I think the reality is that many instances of discrimination that we hear about are in the context of employment and insurance. But this is not targeted at employers and insurers; it is targeted at a behaviour. It doesn't matter who it is who carries on in that way. If this bill is passed, then they will be subject to the sanctions that are set out in here. Most of the evidence that is available, both with respect to actual discrimination and fear of discrimination, is in those contexts.
The Chair: I appreciate that. Thank you very much for your testimony, senator.
I want to remind senators and witnesses that the Senate is now broadcasting in widescreen format. If you're going to ask a question, of course you're paying attention, but you have to pay attention when you're listening, too. It's extremely important.
We just heard from the sponsor of the bill, Senator Cowan. Continuing in that vein, for our second panel we have Bev Heim-Myers, Chair of the Canadian Coalition for Genetic Fairness and CEO of the Huntington Society of Canada.
We also have with us the Canadian Life and Health Insurance Association — Frank Swedlove, President and CEO; and Frank Zinatelli, Vice-President and General Council.
From the Canadian Institute of Actuaries, we have Jacques Boudreau, Chair of the Committee on Genetic Testing; and Bernard Naumann, Vice-chair of the Committee on Genetic Testing.
I'll start with Ms. Heim-Myers.
Bev Heim-Myers, Chair of the Canadian Coalition for Genetic Fairness and CEO of the Huntington Society of Canada: Thank you, everyone, for inviting me back to testify in support of Bill S-201. On behalf of the Canadian Coalition for Genetic Fairness and all individuals in Canada who have experienced or are at risk for experiencing genetic discrimination, we appreciate it.
The Canadian Coalition for Genetic Fairness is an 18-member organization, including members like Alzheimer's, Parkinson's, breast cancer, ALS, CIJA, researchers and geneticists. This morning, we had confirmation from the Canadian Congenital Heart Alliance that they are now part of the coalition, as well.
Members, individuals and Canadians on a weekly basis send me emails to be part of the coalition and tell their stories, so it's not something that has stopped; it's not stagnant. Many people are continually asking to be part of it.
Today I will focus on examples of fear and ongoing outcomes of genetic discrimination — only a few that I have, in the interest of time — the evidence-based research, the media and expressions of support for legislative protection of genetic test information. The examples I'm sharing with you today are some that have been shared with me since the last time I spoke to you at previous hearings. They have been recorded and speak to the need to protect genetic test information and privacy.
A lawyer by profession, Ms. A called me to share that her husband was recently diagnosed by a neurologist with frontotemporal dementia, FTD, a neurodegenerative disease leading to deterioration in behaviour, personality, language and, in some cases, motor functions. Her husband was no longer able to continue his professional work, and she had been fighting with the insurance industry to honour his insurance claim. According to Ms. A, the insurance was not being paid because they felt her husband would get better in time, and they wanted proof through a genetic test that he, in fact, did have FTD. As a side note, all FTD is not genetic.
The three adult children were advised of their father's condition and his intent to get a genetic test, and they were furious. They do not want their father to get a genetic test — they do not support it — for fear of discrimination against them. It has divided the family at a time when the mother and father need help from the kids.
Another person wrote that he has a genetic disorder that greatly increases the chance of getting certain cancers. He was told by his insurance broker that having this condition confirmed would make him ineligible for life and major illness insurance. He is healthy, and knowing this information will allow him to stay healthy through screening and other preventative measures. He has four children, and because of his own situation, he purchased insurance for his children. They are all negative, so the end of the story worked out well.
His concern is that people will choose not to be tested because of the risk of being uninsurable and will not receive regular screening for the cancers in question — screening that may well save their lives. In his words, "any legislation that protects people who make responsible decisions about being screened is a positive thing."
You've likely heard parts of this next story before. A young woman graduated top of her class as a chiropractor. Before she could practise, she applied for life insurance, which they're all told to do and which they need before they practise. She was denied because she was from an HD family. She was told that if she could prove through a genetic test that she did not have the mutation for HD, her request would be reconsidered. She unwillingly had the genetic test. She does not have the mutation. She also now has life insurance, albeit at a higher premium, although she will never get HD.
The story doesn't end there, though. She has been given an opportunity to buy into the practice and needed to increase her life insurance to facilitate this opportunity. She is a healthy, active, non-smoking marathon runner with no HD mutation. However, she was told by the insurance industry or her insurance broker that she needed to get another genetic test to prove she still didn't have the HD mutation. If you don't have it the first time around, you're not getting it the second time around. That was confirmed by her geneticist and her physician.
Lastly, Senator Cowan talked about the young man who was let go on a Monday morning. The reason given by the employer for the young man being fired was because the employer was concerned for his equipment. The young man was a Web designer, and HD won't manifest for more than 20 years. HD in his family has late onset.
The challenge, and you're absolutely right, is that this young man could likely have approached the Ontario Human Rights Tribunal, but the onus is on him to prove it. By him doing that, he is outing his siblings. For fear of tabling a genetic mutation in the family for his siblings and his cousins, he just couldn't go forward, and that's why he didn't. It would have been up to this young man and his family to pay for the process and the legal fees. The whole thing was prohibitive, not only from a fear perspective, but from a cost perspective. He couldn't go forward.
As a follow-up to this story, I talked to his mother last week. He lives in fear of applying for another job because he's afraid in his profession that this information will get out and he won't be able to get another job. He has to regroup a little bit before he can move forward.
Allowing genetic discrimination to occur creates barriers for personalized medicine, as we've heard before. Dr. Yvonne Bombard has published many papers on genetic discrimination and the impact it has on behaviours. In her paper entitled Beyond the Patient, she found that 86 per cent of people in the HD community fear genetic discrimination for themselves and their children. Of those people, almost 50 per cent have themselves experienced genetic discrimination.
In a more recent paper published in October 2015, Translating Personalized Genomic Medicine Into Clinical Practice, 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. Genetic test information is complicated, personal and private, and we need to treat it that way.
Dr. Ron Cohn, who has also been mentioned, and who has presented to the committee before, expressed through his study at Sick Kids of parents refusing to have their children genetically tested even when it could result in diagnosing a treatable disease for their children. They declined what could be life-saving information for fear of genetic discrimination against the other children in the family. Dr. Cohn experiences part of Dr. Yvonne Bombard's conclusion on a daily basis. It is 35 per cent now; more and more people are declining.
A paper published in the U.K. in 2012 by R.G. Thomas — Genetics in Insurance in the United Kingdom, 1995 to 2010, The Rise and Fall of Scientific Discrimination — observes that:
. . . the natural interpretation is that a person with private knowledge of their genetic status can benefit by buying large amounts of life insurance.
However, it concludes that:
But more careful consideration, using realistic probabilities and premiums, suggests that in most realistic scenarios, over-insurance is probably not an attractive investment.
In Canada we're fortunate to have this historical knowledge and evidence that the claim made in the U.K. — that if insurers were not permitted to use genetic tests, it would lead to a very large rise in the average insurance price or collapsing insurance market — has clearly not come to fruition.
Last week I was interviewed by a reporter from the Canadian HR Reporter. Given the media attention to benefit packages offering genetic testing, this reporter had questions about genetic testing and its application in the workplace. Here are some of her questions: How might genetic testing be applied in the workplace? What training or education would employers need before incorporating genetic information into the workplace? Why is the issue of confidentiality so important, and what needs to be done on a legal front to protection genetic information?
Experts who have dedicated their life work to better understanding the human genome still have more questions than answers. Do we really think that this personal, complicated, private information belongs in the hands of employers? Examples to date suggest it is dangerous in the hands of employers if we continue to allow employers to use it against individuals rather than to benefit employees.
Senator Cowan also referenced pharmacogenetics. I was at a forum for pharmacogenetics on February 5. I was invited to discuss how to maximize this science while protecting individuals from genetic discrimination and pharmacogenetic tests on an individual’s tolerance to different drugs through a genetic test. This science can provide life-saving information, minimize potential drug reactions and expedite healthy outcomes through the use of the most effective drugs for individuals.
The challenge is clearly the barrier of genetic discrimination. Although a person being tested will likely already be diagnosed with a disease, the information will be part of their health information and therefore part of their children's health information, to be accessed by businesses and insurers requesting information from the family doctor — insurers or other businesses who may not understand the information and draw inaccurate conclusions.
The Chair: Ms. Heim-Myers, please keep going, but I'm trying to limit the first testimony to seven or eight minutes.
Ms. Heim-Myers: Two minutes.
The Chair: We're going to have a nice conversation here today, I'm sure.
Ms. Heim-Myers: This forum was attended by more than 25 individuals from a variety of businesses, including the CMA, CLHIA, pharmacists, benefits programs, Great-West Life, Manulife, Novus Health, et cetera. With permission from the organizer of the meeting, Mark Faiz of Beneplan Co-operative, I'm sharing a conclusion from the meeting: The majority of participants agreed on certain points, including discrimination of human beings based on their genetic test information is not acceptable and must be regulated by law.
It is understood that we need genetic information protection at the federal level and the provincial level. To date, Ontario is the only provincial legislator to have tabled legislation on the topic of genetic information protection. MPP Mike Colle in the past tabled the private genetic non-discrimination bill in Ontario. Last week he shared the following statement, and with his permission I am sharing it with you today: "Provinces could support an act to prohibit and prevent genetic discrimination at the federal level. If this action is taken at the federal level, it would pave the way for similar legislation at the provincial level. Genetic test information is complicated and most often misunderstood by non-experts. In the wrong hands it has been used unfairly to discriminate; in the right hands, it has been used to save lives and promote health. It is past due for Canada to protect genetic test information through legislation. Businesses, including insurance, will adapt, evolve and thrive, just as they have in the other G7 countries."
Thank you very much for your time.
The Chair: And thank you very much for your testimony this afternoon.
We have the two Franks here now from the Canadian Life and Health Insurance Association. Who would like to speak?
Frank Zinatelli, Vice President and General Counsel, Canadian Life and Health Insurance Association: Mr. Swedlove will be frank with you.
The Chair: All right. Thank you.
Frank Swedlove, President and CEO, Canadian Life and Health Insurance Association: As you've noted, Frank Zinatelli is with me, who is Vice President and General Counsel of CLHIA, and we are also accompanied by Karen Cutler, Vice President and Chief Underwriter for Manulife Financial, who is available to assist us in answering any questions this committee may have.
[Translation]
The CLHIA represents life and health insurance companies accounting for 99 per cent of the life and health insurance in force across Canada. The Canadian personal insurance industry provides products that include individual life and group life, disability insurance, supplementary health insurance, individual and group annuities, and pensions.
[English]
The Canadian industry protects 28 million Canadians and about 45 million people internationally. The industry makes benefit payments to Canadians of $84 billion a year, has more than $720 billion invested in the Canadian economy, and provides employment to 155,000 Canadians.
[Translation]
We appreciate this opportunity to appear before the committee as it reviews the updated version of Bill S-201. While there have been changes made from the previous version of the bill, the central issue the industry has with the proposed legislation — that it would violate the principle of "equal information" — has not been addressed. In addition, we continue to have concern about the constitutionality of the bill. Let me elaborate on these two important issues.
[English]
I'll start first with the principle of equal information. Insurance is a good faith agreement. At the time of application, parties disclose any information that may be material to the contract so that the contract can be entered into on an equal information basis. This ensures that the applicant knows what benefits are being promised and that the insurer can properly assess the risks so that the premium reflects the degree of risk assumed. This principle is reflected in each and every piece of insurance legislation in every province and territory and makes it fair to the entire pool of insured persons.
Clause 4 of this bill would prohibit any person from requiring an individual to disclose the results of a genetic test as a condition of engaging in certain activities, which would include providing insurance. This is directly contrary to the principle of equal information, which is the foundation of our insurance system.
When senators consider the bill and how it might help those who have adverse results on genetic tests, they will also need to consider what other implications arise. The Canadian Institute of Actuaries, the most expert group in Canada to make this assessment, described what they believed to be the impact. I will leave it to them to make their presentation.
But this does not mean that there will be higher prices for insurance for all Canadians. The reality is that possibly hundreds of thousands of Canadians will choose to no longer be insured. As a consequence, when unfortunate events occur, many Canadians who would have had protection would no longer be protected because of this bill. They would be the true victims if this legislation passes.
Now let me address the constitutionality of the bill. We are strongly of the view that the first part of the bill, including clause 4, is not within the constitutional jurisdiction of the federal government. While this version of the bill has no specific reference to insurance, this bill would nevertheless have the effect of applying to insurance transactions and contracts, as has already been noted, a matter that has been shown consistently to be held within the exclusive jurisdiction of the provincial government under the property and civil rights heads of power. As a result, the first part of the bill raises serious constitutional issues. We have obtained the views of the Torys law firm, which confirms this view, and we will share their written opinion with this committee once it is completed.
Our industry is sensitive to the needs of Canadians applying for insurance who may be affected by adverse genetic test results. As this committee is aware, the industry has put in place an industry code that requires life and health insurers to adhere to a variety of commitments. Let me give you a few examples.
It ensures that no Canadian will be asked to take a genetic test as a condition of obtaining insurance.
It supports medical research and its benefits, as insurers will not ask for genetic test results from applicants as long as they or their physician have not been made aware of the results.
It ensures companies do not require the genetic test results of any person other than the proposed insured or seek to obtain those genetic test results independently.
It requires companies to assist applicants who are not eligible for insurance.
And it requires companies to have a dispute resolution system to deal with complaints relating to underwriting decisions involving a genetic test result.
We want to ensure that Canadians make informed decisions regarding genetic tests, including what to expect when applying for insurance, while continuing to help Canadians protect their families from unexpected events.
There have been many statements circulating that Canada is unlike most other Western nations or is the only G7 country that does not provide protection for genetic discrimination. I think this has been a very misleading statement. In continental Europe, the insurance industry sells almost exclusively short-term policies, with the result that restrictions on the industry have limited impact. The country that most resembles Canada in terms of the insurance market is the United States, where we have the Genetic Information Nondiscrimination Act of 2008, which does not apply in the case of life insurance, disability insurance and long-term care insurance. Therefore, the U.S. Congress has explicitly recognized that it is not in the best interests of American citizens to restrict insurers' access to genetic test results.
Another country that is similar to Canada is Australia. It has studied the issue probably in more detail than any other jurisdiction. They have decided not to pass legislation in this area but to rely on an industry code similar to the one we have in Canada.
[Translation]
For the reasons we have just noted, the industry does not support Bill S-201. We appreciate, however, this opportunity to participate in the committee's review and would be pleased to answer any questions you may have.
[English]
The Chair: Thank you very much, Mr. Swedlove.
We'll move on to the Canadian Institute of Actuaries.
Jacques Y. Boudreau, Chair, Committee on Genetic Testing, Canadian Institute of Actuaries: Thank you for the opportunity to be here. My colleague Bernard Naumann and I will share duties, but I will start.
The Canadian Institute of Actuaries' primary guiding principle is to hold the interest of the public above the interests of the institute and its members. Actuaries are recognized as experts in insurance in federal legislation in that only a fellow of the CIA can certify the policy liabilities of insurance companies. The CIA does not speak for them, and its concern with Bill S-201 is related to the impact on the public rather than on insurers.
In September 2014, we were here to speak against the bill because we thought it would result in substantial increases in premiums for the insuring public and, therefore, harmful to the vast majority of Canadians. It was noted earlier that "insurance" is no longer in the bill. We wonder if you realize that the negative impact on insurance is now greater than before since an applicant wouldn't have to share the result of a genetic test regardless of the amount of insurance.
If you didn't realize this, the problem can be easily remedied by amending the bill to allow an exception to the prohibition of clause 4 so that the results of genetic tests must be disclosed in the case of a contract of life, sickness or disability insurance, which is subject to the satisfactory evidence of insurability of the life insured. Note that the exception to the prohibition would apply only to insurance products that are underwritten individually and only for genetic tests already known to the applicant.
However, if you did realize that the bill made matters worse, we must reiterate strongly that an essential element required for insurance to work properly is an equal access to information by both parties in order to avoid anti-selection. That is why offers to purchase a house are typically subject to inspection, or why the seller of a car must disclose any significant collisions.
Unless there is an exception to clause 4, you will permit a material imbalance of information in insurance. Anti-selection is acting on an imbalance of information to the other party's disadvantage. Receiving a bad result from a genetic test would be a strong motivator to acquire more life insurance. Under the bill, one would be able to acquire insurance at the same price as the general public and well below its true cost, providing a strong incentive to purchase as much as possible.
We are deeply concerned that the vast majority of the public will have to pay more for insurance because of the increase in premiums to fund the cost of anti-selection. Unless there is an exception to clause 4, we are expecting very substantial increases in cost for everyone who buys insurance. We think that is unfair to the vast majority of Canadians and not in the public interest.
Bernard Naumann, Vice-chair, Committee on Genetic Testing, Canadian Institute of Actuaries: I'm the co-chair of the genetic testing task force of the CIA. I'm also the chair of the two papers that Bob Howard wrote on genetic testing. Bob is unfortunately not here today and sends his regrets, but I will do my best to be here in his stead.
I want to give the Senate committee an update on the cost as it relates to 99 per cent of people who purchase insurance, those who do not have a genetic test that results in a negative implication.
At a 2014 hearing, Bob Howard indicated that the impact of the bill on life insurance premiums would likely increase in the range of 30 to 50 per cent. Today I want to give you an update on two relevant pieces of information since that hearing.
The first is with respect to the 2011 U.K. paper that Macdonald and Yu wrote. In this paper, the policyholder cost in the U.K. was projected to be 1 per cent or less, clearly something that would not really impact the insurance industry. We've had a number of conversations with Professor Macdonald, myself included, both on the phone and in person. He has come to the agreement that his model would show a much larger impact if he included more genes in his model as well as more anti-selection. In a nutshell, the reason is that the CIA paper had 13 genes in its model and the Macdonald paper had 6 genes. Those additional 7 genes were primarily related to heart conditions. If Macdonald had included those genes in his tests, he would have seen an impact of at least five times what he found in his original paper.
The other piece is the anti-selection. Macdonald's model assumes little anti-selection by number and no anti-selection by amount. In other words, those who test positive on a genetic test are slightly more likely to buy insurance in his model, and those who do buy will buy no more insurance than anybody else. You really have to think about anti-selection when you do these models.
It's difficult to measure these things. In 2009 there was a study in the U.S. that showed that individuals who had a certain genetic condition had a five times greater likelihood of purchasing long-term care insurance than not. There is a study out there that shows anti-selection does occur.
You don't need a study to think this through. Think about it from your own situation. If I had a family member or friend come to me who had the unfortunate condition of testing positive with a gene associated with a serious illness, and if a bill like Bill S-201 were law, I would strongly recommend for that individual to buy as much insurance as they could. Wouldn't you? If you would, then you agree that there is anti-selection, and that should be taken into account in this framework.
If you wouldn't, there are others who would, because the financial gain of an insurance policy is large enough to attract investors. I've already heard of a group that has money ready to back policies which will benefit from the proposed bill.
The bottom line is we are confident the Macdonald's model adjusted for more genes and more anti-selection would support the CIA's conclusion. Double-digit premium increases like the range cited in Bob Howard's paper of 30 to 50 per cent for everyone buying insurance are quite plausible. We feel it is not in the public's interest to benefit less than 1 per cent of the population, let alone benefit the investors who can take advantage of this bill at the expense of a large increase in cost for everyone else purchasing life insurance.
I want to bring to your attention the research the CIA released in January of this year. It is looking at the impact of Bill S-201 on critical illness insurance. Without getting into details, the conclusion is much the same. The expected premium increases for new CI policies are likely to be in the double-digit range over time. This research reaffirms our position. The impact of banning the use of risk-relevant genetic testing information by insurance companies will result in an expected increased cost in future CI policies through increased premiums. We feel this increased cost is not in the public interest.
Mr. Boudreau: Life insurance has existed for 300 years, and its foundational characteristic that anti-selection be prevented is time-tested and works very well. In fact, insurance couldn't exist with systemic anti-selection. Without proof that the bill would do no harm, it is reckless to introduce the means of allowing anti-selection.
The amendment we request for clause 4 contains the protection for the public that there be reasonable and bona fide grounds for recognizing each particular gene used in underwriting; that is, scientific work comes first, and then it can be implemented in underwriting.
Actuaries are accustomed to this work. They already assess the increased risk of dying due to high blood pressure, obesity and the presence of many other illnesses. They are experts at setting a fair price, and they are sensitive to market pressures to keep the prices low. We are confident that if you allow an exception to clause 4, prices will continue to be equitable. We urge the committee to amend Bill S-201.
Mr. Chair, at this point I would just like to say that seven minutes for something as complex as insurance is not a lot of time. This concludes our prepared remarks, but I would appreciate a few more minutes at some point to discuss some of the discriminatory aspects of the bill.
The Chair: Thank you for your presentation. We do have 35 minutes where we will have a conversation, and you will be able to address that issue.
Senator Frum: Ms. Heim-Myers, thank you very much for being here.
When you gave your case examples, as I counted, three out of four of them had to do with discrimination in insurance matters. Would you agree that when we speak of genetic discrimination, we are speaking about discrimination that happens within the insurance industry?
Ms. Heim-Myers: I agree in that the insurance industry is the biggest abuser of misusing genetic test information and the biggest discriminator, yes.
Senator Frum: As for the proposed amendment that we just heard from Mr. Boudreau, where you would put exemptions into this bill for life, sickness or disability insurance, I presume that wouldn't be accessible to you?
Ms. Heim-Myers: No. One thing, when we talk about GINA that was implemented in 2008, to appease the insurance industry at the time they took out life insurance, but since then many states have followed with much more comprehensive protection. California probably has the most comprehensive protection in the States, and that does include life insurance. So no, I wouldn't take it out.
The point we're missing here is that much of the decision-making process with contracts and different industries is based on a perceived future disability. When we look at genetic information, it's really not that predictive. It has a lot of benefits, but there are very few monogenetic diseases and very few diseases that will impact this.
To deny somebody a full life of taking care of themselves based on a future perceived disability or having a young child at 5 years old kicked out of school because he might have had a few genetic markers for cystic fibrosis but did not have all of the markers so did not have cystic fibrosis, that's happening now. We need to protect the information so it's not in the hands of people who don't understand it and don't understand that there's a lot of perception and less predictive information than people want to believe.
Senator Frum: You quoted MPP Mike Colle from my province of Ontario, saying that he would welcome this legislation, although he has a similar private member's bill in process in Ontario.
Ms. Heim-Myers: Previously. He tabled it, and it was just before the Ontario government was prorogued; so it didn't make it further than first reading when Mike tabled it, but we are meeting again to table another bill.
Senator Frum: As somebody who dedicates all your time and energy to this issue, why has your approach been to try to see federal law enacted as opposed to provincial law?
Ms. Heim-Myers: I'm also the CEO of the Huntington Society of Canada, so choosing where the best impact is for my time right now is at the federal level for legislation. If you look at other jurisdictions, like GINA in the States, when it happened at the federal level there was a cascade effect down to the state level. As MPP Mike Colle says, it makes it a little easier at the provincial level. We have our priorities in dealing with the different provinces. The first question is, what has happened at the federal level?
Senator Frum: To your knowledge, is there any activity in this area happening at the provincial level? Is there any legislation in the works at the Ontario provincial level?
Ms. Heim-Myers: No, not yet.
Senator Frum: Mr. Naumann, you described that there are groups who see financial gain in this bill and are already organizing to capture that. Can you explain how that would work?
Mr. Naumann: I can't name the groups. It doesn't take much to look at the return if you just look at it financially. I realize this is a human issue and it's tough to separate the human part from a financial piece. When we're talking about insurance, we're talking about a financial agreement between an individual and a financial institution.
The way it works from a life insurance standpoint, roughly speaking the average age of someone who buys an insurance policy is 40. They're expected to live until approximately 85. The premium that person pays roughly speaking has to be enough to pay the death benefit out at 85.
Certain genetic conditions will have a life expectancy shortened to 10 to 20 years. If you do the math, you'll see the return on that cash flow could be 30 to 50 per cent. When those numbers are in a low interest rate environment, that's attractive. If there's any way to get into those cash flows, investors will find it. I'm already aware of one. You just need to be aware of it.
I think this bill, overall, is commendable. It's just that you're creating this extra space of investment that, at least from a public perspective, I think you need to be aware of.
Senator Cowan: Welcome. It's nice to see you again.
You're aware of the reports of the Office of the Privacy Commissioner of Canada. They conducted two actuarial studies. This is a paper that they issued on July 10, 2014. They commissioned two papers, and they said:
The two papers agree that, at the present time and in the near future, the impact of a ban on the use of genetic test results by the life and health insurance industry would not have a significant impact on insurers or the efficient operation of insurance markets. . . .
Based on these expert conclusions, therefore, collection and use of existing genetic test results by insurance companies would not appear to be necessary for the legitimate business needs of the industry at the present time.
What's wrong with that? Mr. Swedlove, why is that conclusion so drastically different from the one that you've spoken about today?
Mr. Swedlove: My understanding is that the conclusion is based on the results of the U.K. study, which Mr. Naumann has already addressed.
Maybe I'll turn to Mr. Zinatelli to give more detail.
Mr. Zinatelli: That was very much the basis on which the conclusion was reached. A study that we now find is actually making similar assumptions would reach similar conclusions as what I've heard the CIA indicate, indeed that there would be a significant increase in price.
Senator Cowan: It's the reliance on the Macdonald study?
Mr. Zinatelli: That's correct.
In the paper by the Privacy Commissioner, the conclusion was that it's not clear that the genetic tests are reliable, but once the genetic tests are reliable, then they should be utilized. That's right in the conclusion of the study, if I recall correctly.
Senator Cowan: I don't think anybody is arguing that, if I want to apply for insurance, I should not have to disclose my own health issues, what drugs I take, if I have been hospitalized, the causes of death of my parents and siblings, that sort of thing. That's perfectly reasonable. What we're talking about here is not an actual condition or disease. We're talking about a predisposition to develop that in the future. That's what we're talking about.
Mr. Zinatelli: Yes.
If you look at the way insurance works, the job of the underwriter at the point in time — remember, we're talking about the point in time when insurance is purchased. It's only at that point that the insurer gets to make a call for a contract that will last 30 years, 40 years, however long. After the contract is in place, the insurer can't go back if there are test results that are in some way negative to the individual. We have made the promise, and we're going to stick with that. That's our promise. So at that point in time, when we enter the transaction, we have to be really careful, and we have to assess the estimated future risk. That's why we have underwriters. It's their profession. That's what they do to make a good call at that one point in time.
Senator Cowan: Mr. Swedlove, suppose you and I have exactly the same genetic makeup. Let's suppose I get a genetic test that shows me that I have a greater than usual likelihood of developing heart disease, and you decide that you're not going to take the genetic test. I can't get insurance or I have to pay a significantly higher premium because of the results that I would have to disclose to you, the insurance company. But I change my lifestyle. I eat properly, exercise regularly and lose weight. I do all the things that we all should do, and I beat the odds. I don't develop heart disease, and I live for a long time.
You, on the other hand, don't take care of yourself. You don't get the test, so you don't know about it. You don't change your lifestyle. You get your life insurance, and you die of a massive heart attack at age 45. How is that good for you, for me, for society or for the insurance companies? It doesn't make sense to me.
Mr. Swedlove: First of all, let me reiterate that if you have not taken a genetic test and you apply for insurance, obviously a genetic test result becomes irrelevant. You haven't taken the genetic test. If you take it after and you have such a condition, then that doesn't affect the rate because you've locked in that rate for the rest of your life. If you really want to have insurance and you are concerned about a genetic test, you can buy insurance before you take that test.
Insurance is based on the fact that, over the general population, if we have a situation where neither of us are in a particularly high-risk group or our family history doesn't suggest potential of dying early, then we would get similar rates. But there's a presumption that certain behaviour, on average, would exist that would apply more generally.
If your personal situation changed after you bought insurance, if you bought insurance at a higher rate and your situation has changed in the sense that you live a healthier lifestyle — for example, if you smoked before but you no longer smoke — you could always cancel your insurance policy and apply for a new policy based on things that may have changed, including, potentially, more science with respect to that genetic test.
Essentially, it's a bit of a one-way bet in insurance. We take on an obligation for the 40 years. We're not going to increase the cost of insurance over that period of time if you have an average genetic test result or anything else. But, if you did have a genetic test result where there's some positive news, then you could always cancel your policy and buy a new one based on the new result.
Senator Cowan: But the fact is — we've heard evidence, and I'm sure you wouldn't dispute the evidence — that there are a lot of people who simply will not get genetically tested because of concerns they have about discrimination, and that prevents them from accessing the medical care that can enable them to lead healthier lives. The healthier our lives are, the less it costs society as a whole to look after. Surely that's, on balance, a better deal for society. It may not be better for the insurance company, but it's certainly better for society as a whole.
Mr. Swedlove: Senator, we're not opposing people getting genetic tests. We are not averse to that situation arising. Why are we being painted here as a situation where we oppose genetic testing? We don't oppose genetic testing. We're saying that, if you know the results of a genetic test and you have that knowledge, which gives you a much clearer indication of probability of illness or dying earlier than the average population, that that be disclosed because of all of the issues that the CIA raises. The impact that it has more generally on society is in terms of increasing the costs to the 99 per cent of Canadians that don't have these adverse test results, and as we've heard, they can be substantial. The fact is that many Canadians, because of increased costs, will not purchase insurance and will not be covered. What's going to happen to those people?
The Chair: Senator Ataullahjan is next, but I would like to give an opportunity to Mr. Boudreau of the Canadian Institute of Actuaries.
You talked about discriminatory issues that you felt you didn't have enough time to explain. You can do it now.
Mr. Boudreau: Thank you.
When we were here in September 2014, Senator Andreychuk showed a great amount of insight when she asked Senator Cowan why he was making a distinction between a genetic test and all of the other medical tests that are often required for life insurance. The bottom line is that this is very discriminatory in nature.
We have two classes of people: those who find out through a genetic test that their life is impaired and, if the bill goes through, wouldn't have to disclose it; and those who find out they are impaired through all the other normal tests and who would have to disclose. That's inherently unfair. That's the biggest point I would make there.
Another element is that premiums are going to go up. The way this is set up right now, the burden of the cost is on people who take out insurance. I don't understand how that can possibly be fair. Why is it that people who don't take out insurance because they don't need it or because they have group coverage, or whatever, are not asked to participate in the cost of anti-selection? There are no good reasons other than subjective ones, which are not really valid, to put the burden on people who take out insurance.
Those are two elements of the bill that I think are inherently unfair.
The Chair: Witnesses can feel free to jump in any time if they have an opposing view or whatever they want to say.
Senator Ataullahjan: My question is to Mr. Swedlove. You just said that insurance companies are sensitive to the needs of Canadians. Can you tell me what measures you have put in place to respond to the concerns of Canadians?
Mr. Swedlove: Yes. The industry passed an industry code last year, which is a requirement of membership in our organization, that lists a number of factors on how we deal with individuals who are adversely affected. It has a best-practices structure to it, largely based on the Australian industry code where, as I mentioned before, they have chosen not to pass legislation in this area for the concerns that have been expressed today.
I could ask Frank Zinatelli to provide more detail.
Mr. Zinatelli: First, senator, I wanted to note that we do have copies of the industry code with us, which we'd be happy to share with everyone as a reminder.
In the industry code, we try to take some steps to be as helpful as we can be to insurance consumers who are thinking about obtaining insurance so they can understand the process. We try to meet them so that they really understand that in the context of taking genetic tests.
One of the things provided in the code is that if a person applies for insurance but is turned down because of a genetic test condition or result, that is explained to them, as are other possible approaches the person could pursue in order to obtain protection in some other manner. So companies will do that at that point in time, if that occurs.
There's also the provision that if there were a case, for example, where somebody is thinking of getting insurance and comes to the insurer and says "I'm thinking of taking a genetic test," then the industry is required by our code to provide a written statement and also to indicate to folks: "Listen, taking a genetic test has various implications for you, health-wise, with respect to your family, et cetera. Be careful. Think about it and talk to whom you need to talk to so that you make a good, informed decision if you do take the test."
There are seven or eight other things in our code that were put in place to assist insurance consumers in that context, senator.
Senator Frum: Ms. Heim-Meyers, I asked you earlier about any legislation that you're aware of in Ontario. Are you aware of any legislation in the works or in process in any other provincial jurisdiction?
Ms. Heim-Myers: Our priorities are Quebec, Ontario, B.C. and Alberta. Right now, Alberta has other issues.
So, no, other than conversations with them and beginning the conversations on what it might look like at the provincial level, there are no bills waiting to be tabled in the provincial legislatures.
Senator Frum: You've been working on this for many years. What is the resistance at the provincial level to enact legislation on genetic discrimination?
Ms. Heim-Myers: I wouldn't say there is any resistance. It is more a turnover of governments in the provinces that we are working with. When you look at Alberta, they were very close to working with us to table something, and then they went into an election and the government changed. They've had their own priorities — not genetic discrimination at this point in time.
I will say that we have not been shut down when we're talking about it. There has been a positive approach and positive awareness, and that this is something we need for all Canadians. It's just a matter of getting the right timing in the provinces and re-educating when there's a government change.
Senator Frum: Mr. Swedlove, you mentioned the opinion from Torys that you have in your possession. Will you leave with our clerk a copy of their opinion on the constitutionality of the bill so we can see it as well?
Mr. Swedlove: Yes. It's now being drafted, and we will table it with your clerk.
Senator Frum: Do you care to speculate about why there's been resistance at the provincial level? If you agree in provincial jurisdiction, which you said, why haven't the provinces addressed this? It's not because they love the insurance industry, is it?
Mr. Swedlove: That's true: They probably don't love us that much, but they do understand the insurance industry. They understand the important principle of equal information between the purchaser of insurance and the insurance company. That's why this principle of equal information is incorporated in each piece of provincial legislation. For them to adopt this legislation would be actually contrary to their insurance legislation.
Ms. Heim-Myers: We keep saying that it's equal information, but it's not being treated as equal information. So if a person has a genetic test, and it's based on a perceived future disability, who knows if that's going to happen? Chances are it won't. But the insurance industry, or employers, are looking at it and saying, "This is going to happen." So it's a definite on one side and a perception on the actual results. It's not equal on both sides of the table.
Mr. Zinatelli: I was going to say something, but I'll let the actuary explain that.
Mr. Boudreau: It's not an accident that insurance companies do not ask for genetic testing. The reason they don't is because it doesn't work. The predictive power — through the science of epigenetics, for example, we know genes can be turned on and off. There's been talk about someone finding out, for example, that they have a 50 per cent greater chance of developing a certain disease, which sounds alarming. However, when you understand the prevalence — for example, if the prevalence is 1.4 per cent in the population, and now you're told your chances are 2.1 per cent, or a 50 per cent increase, this is immaterial from an underwriting point of view. Insurance companies do not use this. The only time they do is for a handful of monogenic diseases.
It's simply not true that an insurance company would take a genetic test, other than for those few, and decide to make an assessment based on that. Blood pressure, build and a variety of other factors are far, far better predictors of one's longevity.
Mr. Naumann: And they are based on scientific studies. Even in Bob's paper there are references throughout the back. These numbers aren't pulled out of the air; they come from scientific journals and studies.
Karen can talk to the underwriting manual that she would use at her company. It's not just based on "Oh, this is when I think this person might die." It is based on scientific information.
The Chair: Before we go on to Karen Cutler, who I did not introduce before, we have two other senators who have questions. If you can be brief in your response, I'd like to go to Senators Cordy and Nancy Ruth, who haven't asked questions.
But you go ahead, Ms. Cutler, with an executive summary version.
Karen Cutler, Vice President and Chief Underwriter, Retail and Affinity Markets, Canadian Life and Health Insurance Association: In the course of developing underwriting guidelines, we rely heavily on the medical research conducted in the general community, in the general population. To Bernard's point, every one of our guidelines is based on the review of medical literature.
The other thing that should be noted is that underwriting is a series of debits and credits. To the extent that someone has knowledge regarding a genetic predisposition to disease, we do look at the fact that they are getting additional screening. We do look at the fact that they are going through additional testing, and we credit for that. We don't necessarily take a perspective that this is a completely predictive result. We look at all factors, genetics being one of quite a number of factors that we look at in a life insurance application, as Mr. Boudreau has alluded to.
Senator Cordy: My daughter is an underwriter, so it will be an interesting discussion at home this weekend.
Mr. Swedlove, you said that there's not a problem because you can just buy your insurance and then get your genetic testing because everything will then be put in place. What about the stories we heard about parents who weren't allowing their children to go into pilot projects or studies because their fear is that their 5-year-old will be discriminated against for the rest of their lives and be unable to buy insurance? What about the parents who know that if they allow their child to have the genetic test, perhaps early intervention and a better lifestyle will create a longer life for that child, but they decide not to have the testing done because their child could be discriminated against for the rest of their life? As a parent, I would not want to make the decision. To say, "Buy the insurance before you take the test," really isn't covering anybody. I can see it if you're in your 20s, 30s, or 40s, but not if you're 3, 4, 5, or 6 years old. What about that? It makes me cringe to think of a parent having to make the decision to take them out of a study because they don't want the discrimination for their child.
Mr. Swedlove: The industry code that all our members have signed onto specifically states with respect to scientific studies that we will not seek the results of the genetic test as long as their test results are not provided to the individual or to the individual's physician. If it were a broad-based study to gather results and the individuals were not informed of the genetic implications, then we would never get involved. I note that up front.
Clearly, when I was talking before about having the option to buy insurance before you take a genetic test, I was obviously not talking of the situation of a 5-year-old as that wouldn't apply. In those circumstances, obviously people have decisions to make, but times change. As I mentioned before, one can always change with respect to circumstances. I'm not sure people are buying insurance for 5-year-olds in any event. What would be the situation for them buying insurance when they become 30 or 40 years old from a genetic test at the age of 5? I find that argumentation fairly weak, frankly.
Senator Cordy: We have 32,600 registered genetic tests. We've gone from 100 registered genetic tests in 2003 to this number in 2016. The number of tests is increasing significantly.
My next question is a follow-up to Senator Frum's question to Mr. Naumann and related to the groups of investors who would benefit. I didn't understand your answer to Senator Frum. If this bill passes, you're saying that it will be fraught with risk for insurance companies.
Mr. Naumann: I'm not arguing insurance companies. I'm saying that for the 99 per cent who currently pay the standard premiums today, we're expecting those premiums to go up.
Senator Cordy: Why would investors want to get involved? Are they new insurance companies?
Mr. Naumann: No. For individuals who have a positive genetic test from one of these unfortunate conditions, even if they weren't anti-selecting — let's say they didn't want to buy insurance — there would be investors that could back them and say, "Why don't you go out and by a $2 million policy? If you do that, we can set up a support program for you. We can give you these benefits." Where somebody would pass away unfortunately in 15 to 20 years, the cash flows would result in a 40 per cent rate of return — investment. As soon as you create a situation like that, people will be aware of it, especially in this day and age with social media.
I did the "DNA test in a box." If you do one of those things online, you can create your communities very easily with those who have similar genetic conditions. The word will get out in not much time. When there's an investment that can create a 40 per cent return, it would be my expectation that people would make sure that anti-selection would be greater rather than less.
Senator Nancy Ruth: I understand your 30 to 50 per cent increase in premiums, at least your theory around it. When Bob Howard was here, he said that for policies of men, it would be 30 per cent, and for policies of women, it would be 50 per cent. Can you explain that?
Mr. Naumann: I don't know exactly the reason. I do know that BRCA1 was one of the reasons, which affects females more than males. I'm not sure if that was the key to explain the full 20 per cent, but I know that was definitely one of the differences.
Senator Nancy Ruth: Is that the same as saying women are going to carry more genes that will be negative than the male population?
Mr. Naumann: Of these 32,000, 13 genes were looked at that seemed to have the biggest impact on mortality. BRCA1 is one of those genes.
Senator Nancy Ruth: Was this test group mainly of Caucasian people?
Mr. Naumann: I believe so. The reference is in his paper.
Senator Cowan: One of our colleagues, Senator Wells, has spoken about his condition, hemochromatosis, which is a genetic disorder that makes a person unable to properly metabolize iron from food. As you would know, the condition is readily treatable and if treated has no effect on one's lifestyle or longevity. If it's not diagnosed and treated and one doesn't change one's lifestyle, it can lead to all kinds of unfortunate things. He spoke about that and the need to be aware of it.
Clare Gibbons is a genetic counsellor at North York General Hospital in Toronto. She testified before this committee the last time and specifically mentioned this condition. She said that the condition is one of the most preventable genetic conditions, yet she had heard of a number of reports of people across Canada who were denied life insurance, in one case medical insurance, because of genetic testing for hemochromatosis. Does that strike you as odd? How do you square that with your code of conduct?
Ms. Cutler: For travel medical insurance, it's hard to understand the context in which that decision was made. Often in travel medical insurance, if the test was completed quite recent to the application, whereas it’s usually 90 days, or something like that, in the guidelines prior to travel, it may not be covered; and that's not limited to a genetic issue. That could be the finding of high blood pressure.
As far as hemochromatosis is concerned, just knowledge of the fact that you have the gene is not a risk factor for us in the life insurance industry. I can't speak to why those decisions were made, unless the disease had just been diagnosed and was not under treatment. Our guidelines and generally the guidelines across the industry don't take adverse action on hemochromatosis.
Mr. Boudreau: If I may add, my mother has hemochromatosis and my grandfather died of it. Thankfully, I'm only a carrier, so I'm well versed.
This is a perfect example of what I talked about before. If someone were to get a blood test and it came back with a ferritin count well outside the normal range, it would be a flag. It's quite possible that a person might be denied insurance if their ferritin count is very high.
Mr. Naumann: That happened to me. It's true.
Mr. Boudreau: Again, we have a situation where if the result were obtained through a genetic test, it wouldn't have to be shared with the insurer. If it were a blood test, you would have to share it. It doesn't make any sense to me. For someone with hemochromatosis and a ferritin count at the danger level, you can understand why the insurance company would decline you until they get the count down. A person is perfectly welcome to reapply after a number of blood-letting sessions until the ferritin count is below 300.
There is nothing nefarious here. This is simply a question of flagging people who are at risk through different means. This bill would make one test non-disclosable and all kinds of other tests disclosable, which, again, doesn't seem to be fair at all.
The Chair: Thank you very much for appearing before our committee today. I've learned a lot. I'm the new chair of the committee and I'm seeking the guidance of all senators on this side as well in terms of the decisions we will come to.
We received a note from the Province of British Columbia. They have no desire to make a written submission to us at this time. I'll wait to see what other provinces say vis-à-vis the Constitution.
(The committee adjourned.)