Proceedings of the Standing Senate Committee on
Human Rights
Issue 14 - Evidence - December 10, 2014
OTTAWA, Wednesday, December 10, 2014
The Standing Senate Committee on Human Rights, to which were referred Bill S-7, An Act to amend the Immigration and Refugee Protection Act, the Civil Marriage Act and the Criminal Code, and to make consequential amendments to other Acts; and Bill S-201, An Act to prohibit and prevent genetic discrimination, met this day at 1:03 p.m. to give consideration to the bills.
Senator Salma Ataullahjan (Deputy Chair) in the chair.
[English]
The Deputy Chair: Good afternoon, senators. This afternoon we are going to do a clause-by-clause consideration of Bill S-7, An Act to amend the Immigration and Refugee Protection Act, the Civil Marriage Act and the Criminal Code and to make consequential amendments to other Acts. I'm the deputy chair, Senator Ataullahjan, and I would like the committee members to introduce themselves.
Senator Eggleton: Art Eggleton, a senator from Toronto.
Senator Jaffer: Mobina Jaffer, British Columbia.
Senator Hubley: Elizabeth Hubley, a senator from P.E.I.
Senator Ngo: Senator Ngo, Ontario.
Senator Andreychuk: Senator Andreychuk, Saskatchewan.
Senator Tannas: Scott Tannas from Alberta.
Senator Nancy Ruth: Nancy Ruth from Toronto.
Senator Eaton: Nicky Eaton from Toronto.
The Deputy Chair: Is it agreed that the committee proceed to clause-by-clause consideration of Bill S-7?
Senator Eggleton: Before we do that, I have a question I'd like to ask of officials. This results from a brief we received overnight from UNICEF Canada, and it raises a certain issue I want to clarify with officials, dealing with criminalization matters. I assume it would be Justice officials, if they are in the room.
The Deputy Chair: We have the Justice officials here and they can answer the question.
Senator Jaffer: Why are we not in camera? This is not in camera.
Adam Thompson, Clerk of the Committee: Senator, the rules require that clause by clause be done in public.
Senator Eggleton: UNICEF says in the document they submitted to us that they are concerned about children's increased potential for criminal liability as a result of the changes proposed to the Criminal Code and the Youth Criminal Justice Act. They state:
Children are the intended subjects of protection of Bill S-7 and there is no compelling reason to justify increasing criminal sanctions against them in the context of protection from forced marriage. Should a child be implicated as a potential victim or as a facilitator in a possible situation of forced marriage, alternative interventions should be pursued such as a special program of prevention and child and family counselling under the auspices of child welfare authorities or community-based organizations with appropriate competencies.
Their recommendation says:
We recommend that children and young people be exempt from the measures set out in the proposed new sections 293.1 and 293.2 to the Criminal Code, and the proposed amendments to subsection 14(2) to the Youth Criminal Justice Act.
Could you comment on that please?
Gillian Blackell, Senior Counsel, Family, Children and Youth Sector, Justice Canada: Thank you, senator.
The provisions in the code generally will apply to all persons on Canadian soil, as a basic principle. However, as you know, criminal liability generally only begins as of the age of 12. Between the ages of 12 and 18, the procedure and sentencing regime is governed by the Youth Criminal Justice Act, so they are already subject to a separate regime that takes into account their lowered degree of blame worthiness and their age and development.
As well, in terms of the provisions of criminalization, these two provisions of active participation in a forced or early marriage ceremony require specific intent and active participation, and the Crown prosecutor would normally only use their discretion to prosecute those that are the most responsible for a particular act.
When youth are involved, there are separate measures that would apply if they are ever specifically charged with an offence. Normally, as you mentioned, since these provisions are there for the purpose of protecting vulnerable persons, it is unlikely that they would be used against such vulnerable persons generally. It's not the intent.
Senator Eggleton: Unlikely and not the intent, but that still means it's quite possible there could be criminal charges laid against a 13-year-old, a 14-year-old who may come under the Youth Criminal Justice Act. There could still be charges against such a person who may be — as the term ''forced marriage'' indicates — forced into a marriage, may participate in a marriage but may not be properly protected by these provisions if they are going to be charged.
Joanne Klineberg, Senior Counsel, Criminal Law Policy Section, Justice Canada: There are many offences in the Criminal Code that are aimed at protecting individuals from harm, but they are drafted in such a way as to capture the victim. A good example would be the offence of incest. The offence of incest refers to any person who has sexual relations with their parent, their child, their sibling and so on. You can have a situation where a parent and a child are engaged in an incestuous relationship. The Crown will exercise its discretion not to prosecute the child.
I don't think there is any reasonable fear that Crown prosecutors will lay charges against the victim of a forced marriage or an underage marriage. The offences are there in order for charges to be laid against the people forcing the person to marry or the people who are celebrating and assisting a marriage where a person under the age of 16 is being married. I don't think anyone will exercise their discretion to invoke the criminal process against the person who is very clearly seen as the victim of these offences.
That is not to say that these individuals can't have siblings who are under the age of 18 and are actively trying the influence the person to be an underage or unwilling bride. That's exactly why the offence is drafted the way it is. Where a sibling under the age of 18 participating with their parents in bringing an unwilling sister, for instance, to the wedding, saying that child ought not to be prosecuted under any circumstances would fail to create the mechanism to protect the victim.
The offences are there. The victim of the offences is not going to be charged. As with all other offences, we simply have to have some amount of confidence in police and prosecutors to be able to distinguish the victim from the perpetrators.
Senator Eggleton: Thank you.
The Deputy Chair: Is it agreed that the committee proceed to clause-by-clause consideration of Bill S-7?
Hon. Senators: Agreed.
The Deputy Chair: Shall the title stand postponed?
Hon. Senators: Agreed.
The Deputy Chair: Shall clause 1, which contains the short title, stand postponed?
Hon. Senators: Agreed.
The Deputy Chair: Shall clause 2 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 3 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 4 carry?
Senator Eggleton: On division.
Senator Jaffer: I had amendments to this bill on ''age'' and also on ''provocation,'' and my colleagues, the rest of the senators have those amendments. What I would like to do is that on minimum age, page 2, proposed section 2.2 —
Senator Andreychuk: Point of order. Didn't we just agree to accept clause 4?
The Deputy Chair: We did.
Senator Jaffer: It was on division, but we didn't agree on it. It was on division.
Senator Andreychuk: But once you say on division, you have voted. That's why I want to clarify and then we have to determine whether we will go back.
Senator Nancy Ruth: Someone should give her a chance to talk.
The Deputy Chair: I asked if we shall —
Senator Nancy Ruth: I understand what you asked, but you rushed through senator, with respect.
Senator Jaffer: What I would like to get on the record, if I may, with everyone's permission, I would like the age of 16 to be the age of 18.
Senator Andreychuk: We've got do it according to the rules. Are we now saying that we will revert back —
Senator Jaffer: May we revert back?
Senator Andreychuk: — and not vote on clause 4? The understanding is that we have not taken a vote on that, or are we retracting that vote? We need to clarify that.
Senator Nancy Ruth: We can start again.
Senator Andreychuk: No, we can't do that.
The Deputy Chair: No, we can't start again.
Senator Andreychuk: Secondly, if you're proposing it, then perhaps you could propose your amendment on clause 4 so that we stay within the Rules of the Senate.
Senator Jaffer: I was proposing —
The Deputy Chair: I think what will do is that we will revert back.
Senator Andreychuk: Revert back on this? Is there a reason to do so?
An Hon. Senator: On clause 4.
Senator Andreychuk: No, I think it was important. It was raised in committee by the opposition that when you are in the chair, you should follow the rules. I think that's the strength of the Senate. When we do that, it is not to thwart any intentions; it is to ensure that we can withstand scrutiny publicly.
Senator Jaffer: Since we have reverted, I would like to amend proposed section 2.2 from age 16 to 18.
The Deputy Chair: Shall the amendment —
Senator Andreychuk: Could you speak to your reason?
Senator Jaffer: Yes, I certainly can speak to my reasoning.
As I said at second reading and as I asked the officials, Sweden, Switzerland, Germany and Pakistan have the age of 18 as the national of age of marriage. Why do we have a lower standard at the age of 16? It is shown that 16 is a very young age. Since we are looking at the protection of women, I believe that age 18 is the appropriate age.
Senator Andreychuk: I don't agree with this amendment and I do want to speak to it.
Sixteen was chosen, as I recall, from the testimony — and Justice officials are here — because of the fact that there is a provincial marriage responsibility for administering marriages, et cetera. We don't have the same kind of systems as Sweden, et cetera — for the ones that you pointed out — and there are an infinite number of others that have chosen their own age. So I think it is for Canada to choose its date and to justify it. They have chosen 16, in consultation with the provinces, so it seems to me that it would be an unnecessary interference. You may disagree with me. We did that, I recall, a number of times, in our debates on the Young Offenders Act — what was the appropriate age. Varying provinces had different ones, we had to come to some consensus and we did that.
I remember a bill to do with young people joining the Armed Forces. It was adamantly argued that they could go into the Armed Forces at a lower age than 18 and that it was in their best interest to do so.
I think, on this section, I would have no qualms to leave as it is and, with respect, would not support the amendment.
Senator Nancy Ruth: My understanding of the provincial age of marriage is that it rotates around 18 or 19, but there is a provision that allows for marriage earlier, I think to the age of 16, in certain circumstances and under certain conditions. I would not be opposed to raising this to 18, leaving some kind of special conditions, at the minister's approval, for age 16. But our norm here in Canada is 18 or 19, not younger. The rest is separate.
Senator Eggleton: I can only echo Senator Nancy Ruth's comments. Provincial authorization for age of marriage is around 18 or 19. Why shouldn't the Canadian government be more in accordance with the provinces and territories that make up the country? So I will be supporting the amendment.
The Deputy Chair: Shall the amendment carry?
Some Hon. Senators: Agreed.
The Deputy Chair: All those in favour? All those against?
The amendment is declared defeated.
Shall clause 4 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 5 carry?
Senator Eggleton: On division.
Senator Jaffer: It's the same. All my amendments are on ages. I will not argue at this point.
The Deputy Chair: Shall clause 5 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 6 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 7 carry?
Senator Jaffer: Madam Chair, I would like to move to delete this clause, as I believe that this completely changes the definition of ''provocation.'' Provocation is well covered in the Criminal Code, and I believe that it is not necessary in this bill. This bill is not the right place to bring the issue of provocation, so I ask that this clause be deleted.
The Deputy Chair: If a senator is opposed to an entire clause, I would remind that in committee the proper process is not to move a motion to delete the entire clause, but rather to vote against the clause standing as part of the bill. On this matter, I refer senators to Beauchesne. Citation 698(6) states that:
An amendment to delete a clause is not in order, as the proper course is to vote against the clause standing part of the bill.
Similarly, O'Brien and Bosc —
Senator Jaffer: It's okay. I accept that; on division.
Senator Eggleton: I will speak on the matter as well.
What precipitated the word ''provocation'' coming into this, particularly viewing the fact that it comes from a Minister of Citizenship and Immigration, is relevant to the issue of honour killings. Honour killing isn't specifically mentioned in the bill, but it was part of what was stated by the minister and what has been stated time and time again. Yet, as the minister had to admit under questioning, there is no successful case in this country of honour killing being used as a provocation. Heaven forbid that it ever would be. It's a terrible thing.
For provocation, though, what you're changing here changes it in other circumstances, which might work against women in many different cases. Some women are provoked, as men are provoked sometimes, and the courts have to make those kinds of decisions on an individual basis. I put my trust in the courts to do that as opposed to making this change in terminology in the law that I don't think serves the justice system in this country well. To bring it in under the realm of ''possible'' — somewhere down the line honour killing may get a bigger position in a court case — I think there is no evidence base at all for that. There has not been one successful case of somebody being able to argue on the basis of honour killing. So I think it's appropriate to remove the clause and let the provocation provisions of the Criminal Code stand as they are.
Senator Eaton: Can you clarify? You are two lawyers. In provocation, isn't it here that the person, as long as they're not doing anything illegal, cannot be construed as provocation?
Senator Eggleton: Well, yes, I think there is that sub-context of it, but the system, as it is now, works well. It takes into consideration the individual cases in a court hearing where provocation is used and can then be used to reduce the sentence from perhaps murder to manslaughter.
Senator Eaton: Okay, but explain this to me, Senator Eggleton. If my husband beats me up, that's illegal; that's assault. If I assault him and he kills me, then he would still be able to use that as provocation because I did assault him. I did do something illegal. Right?
Senator Jaffer: Right.
Senator Eggleton: It's only if it's a five-year sentence or more.
Senator Jaffer: An indictable offence.
Senator Eggleton: An indictable offence of five years of more.
Senator Jaffer: Not otherwise. That's what changes.
Senator Eggleton: That's the provision in here.
Senator Eaton: Thank you.
Senator Eggleton: There are other cases where that provision would eliminate that.
Senator Jaffer: The concern is that we know that Mr. Spratt, who was a lawyer from Ottawa and very knowledgeable, said that we are really limiting the definition of provocation. In fact, we are changing the definition. As Senator Eaton rightly asked, we are saying that the victim has to have committed an offence that is punishable by five years. That completely changes the definition of provocation.
Senator Eggleton talked about honour killings. What really disturbs me is that in the public presentations that the Minister of Immigration has made, he has often quoted the Shafia case. As we all know, the Shafia case was a terrible case. None of us are accepting of what happened in those circumstances, but in that case the accused didn't even raise the defence of provocation, because to raise the defence of provocation, first, you have to admit that you were at the scene and that you did kill that person. But you are saying that you killed that person because of provocation. The Shafia case didn't even raise that, so my concern is that the minister himself is confused as to what provocation is. I caution all of my colleagues that I think it is a mistake to change the definition of provocation in the Criminal Code.
The Deputy Chair: Thank you, Senator Jaffer.
Shall clause 7 —
Senator Eggleton: Can we have a show of hands on this one?
The Deputy Chair: I was going to ask the question as to whether the clause should carry.
Mr. Thompson: Recorded vote. The question will be: Shall clause 7 carry?
The Honourable Senator Ataullahjan?
Senator Ataullahjan: Yes.
Mr. Thompson: The Honourable Senator Andreychuk?
Senator Andreychuk: Yes.
Mr. Thompson: The Honourable Senator Eaton?
Senator Eaton: Yes.
Mr. Thompson: The Honourable Senator Eggleton, P.C.?
Senator Eggleton: No.
Mr. Thompson: The Honourable Senator Hubley?
Senator Hubley: No.
Mr. Thompson: The Honourable Senator Jaffer?
Senator Jaffer: No.
Mr. Thompson: The Honourable Senator Nancy Ruth?
Senator Nancy Ruth: No.
Mr. Thompson: The Honourable Senator Ngo?
Senator Ngo: Yes.
The Clerk: The Honourable Senator Tannas?
Senator Tannas: Yes.
Mr. Thompson: Yeas 5; nays, 4; abstentions, nil.
The Deputy Chair: Clause 7 carries.
Shall clause 8 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 9 carry?
Senator Jaffer: On division.
The Deputy Chair: Shall clause 10 carry?
Senator Jaffer: On division.
The Deputy Chair: Shall clause 11 carry?
Senator Jaffer: On division.
The Deputy Chair: Shall clause 12 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 13 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 14 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 15 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 16 carry?
Senator Eggleton: On division.
The Deputy Chair: Shall clause 1, which contains the short title, carry?
Senator Eggleton: I would like to speak to that.
I think this has had an enormous amount of attention from the witnesses that appeared before this committee. Regardless of the position that many organizations have taken on other aspects of the bill, I think they virtually all said that they thought this was very inappropriate terminology for a piece of legislation — ''Zero Tolerance for Barbaric Cultural Practices Act.''
I don't think we should adopt this particular title. I think it reflects badly on ethnic community organizations in this country. Why else would you have the word ''cultural'' in there — barbaric cultural practices? I think we've heard from a number of organizations that feel that while they may understand that there is an attempt here to relate it to violent actions against women and children, nevertheless, it casts a wider net in terms of the communities in our country in suggesting that some of them might have barbaric cultural practices. I don't think communities, by and large, do. Some individuals do; some families do. I don't think it is fair to put that kind of label on this bill.
Overall, organizations have indicated much difficulty with this thing in terms of its supposed protection of women and girls. Some of the organizations that deal with services to these people have said that they don't think this bill is meritorious at all. Particularly, they note this title.
We received a submission from the Barbara Schlifer Commemorative Clinic, in which they say that they assist 4,000 women every year through their legal, counselling and interpreter services. They state:
Bill S-7, introduced by the Government of Canada on November 5th, 2014, if passed, will result in increased criminalization and deportation of certain racialized communities in Canada and will re-victimize women and children who are survivors of violence. As an organization that has worked for nearly 30 years exclusively with women survivors of violence, we are particularly concerned that the proposed changes will create further institutional barriers for already marginalized communities to report violence and receive support.
With the words ''on division,'' I have indicated that I am opposed to the title, not to mention the rest of the bill. In this particular case, I think that this committee should decide to remove this short title. It serves no useful purpose.
The main title itself covers it. It's ''An Act to amend the Immigration and Refugee Protection Act, the Civil Marriage Act, the Criminal Code and to make consequential amendments to other Acts.'' That's an appropriate title because that's exactly what this bill does. The short title, I think, is not something we should be adopting. I would like a recorded vote on that.
Senator Nancy Ruth: I was very struck by Avvy Yao-Yao Go's comments when she was here the other day that just putting these words into the short title gave the framework for which the whole bill was understood. I was very struck by that, but I've also been struck over the last few years, maybe four years, by the government using words that are perhaps inflammatory, as one might describe them. You see them here and there, and I think it's a huge mistake. I think it is changing the English language. You hear it picked up in the media, and I'm absolutely opposed to this.
If Canada was a country that did not have barbaric practices, such as solitary confinement in prison for over half a year for people and that we use solitary confinement regularly for punishment rather than protection, I might feel differently, but there are lots of barbaric practices in this country and we better not call the kettle other than what we are.
Senator Eggleton: Hear, hear.
Senator Jaffer: I would like to remind the committee that except for two witnesses, all witnesses, even people like Megan Walker who were in support of this bill, said it was a mistake to have the short title of ''Zero Tolerance for Barbaric Cultural Practices Act.'' We also heard from witnesses who said that children will not report their parents if they are perceived to be barbaric.
Senators, I believe it is a huge mistake to have this title stand. I have always been proud to be part of this country because I have felt we are inclusive, but when we start to call some people in our country culturally barbaric, we are starting an ''us and them'' society. It's the wrong step to take and I urge you to think very carefully before you support this title.
Senator Tannas: There can be no doubt that the word ''barbaric'' has made us all uncomfortable, and I think in many ways this is an uncomfortable subject that requires us to be uncomfortable. I am impressed with the amount of dialogue that has gone on about this. It has raised this issue to a level it would not have been raised to in the public and with other constituencies had we not done this.
I would say the one witness we had who in fact was a victim of forced marriage agreed with the title ''barbaric.'' I was persuaded by her testimony. Also, the minister quite rightly spoke about not just immigrant cultures but other cultures within our country that seem to think this practice is acceptable. The message must be sent to everyone that this is indeed not acceptable conduct in civilized Canada. I will support it.
Senator Hubley: I would like to support the comments of my colleagues who feel very strongly that the word ''barbaric'' and the word ''culture'' should never come one after the other. Especially in our Canadian laws, they are reflective of our Canadian peoples. This is very basically an inflammatory word, which we must be very careful of using because, in fact, there are terminologies that we use. ''Violence'' to me is just as disagreeable as ''barbaric,'' but I think violence is what it is. Our legislation should reflect that.
It is fine to suggest that we all have a culture, but do we associate it with our cultures? Do we automatically associate it with a specific culture or cultures?
That not only affects people who might be immigrating. It affects people from those countries, but it also more importantly affects our neighbours and friends, and I feel that the terminology is not appropriate for our Canadian legislation.
Senator Jaffer: If the word on its own is ''barbaric,'' I would still be uncomfortable, but I could understand that we were trying to send a message. But when we use ''culturally barbaric,'' it is clear who it is pointed at, which community it is pointed at, and I believe, as I have already said, we are dividing communities. We are sending a very strong message of ''us and them'' when we include ''culturally barbaric.'' I truly believe that the Senate of Canada should not be accepting such a title.
Senator Eaton: There is no doubt that there has been a lot of controversy surrounding ''barbaric'' and ''culture'' together, but I think it will be easier for people coming to this country or for Bountiful itself, which is part of this country, to understand that there are certain practices mostly aimed against women — young, forced marriage, genital mutilation, which is not in this bill but has already been covered, and polygamy — that are simply not acceptable practices. I would like to think that most people who want to come to Canada for opportunity and freedom to grow and live as they want will accept that our values do not tolerate those practices.
Senator Andreychuk: I want to support what Senator Tannas has said but add to it the barbaric practices that this bill is pointed towards — and I agree with the bill, so we're really talking about the title now. I accept the bill. I think it's necessary and I support it.
As you know, I've raised the issue because it has been in the public domain, perhaps brought up by the opposition, members not here at this table or maybe not even in this chamber, that there are different interpretations of what this might mean or could mean. The minister was very clear that it was the barbaric practice within a culture that probably is not accepted by the culture itself. That was one point I recall.
The other is that we're not talking about barbaric practices only coming into this country. We have them within this country, and we should be doing everything we can to stop those practices.
I respect that the government has to bring in legislation. We're here to critique it, and I accepted the minister's interpretation, his intention and the government's intention of how they interpret this phrase. It was, with due respect, not the way that I've heard it at this table in opposition to the title.
So I'm inclined to accept it at this point. The debate has been important. This bill was introduced in the Senate and there will be time for further reflection. There will be community input. As Senator Tannas said, we have done a service to highlight what I think are inappropriate practices and that we should be very strongly against them.
The Deputy Chair: Shall clause 1 carry?
Senator Eggleton: Recorded vote.
Mr. Thompson: The Honourable Senator Ataullahjan?
Senator Ataullahjan: Yes.
Mr. Thompson: The Honourable Senator Andreychuk?
Senator Andreychuk: Yes.
Mr. Thompson: The Honourable Senator Eaton?
Senator Eaton: Yes.
Mr. Thompson: The Honourable Senator Eggleton, P.C.?
Senator Eggleton: No.
Mr. Thompson: The Honourable Senator Hubley?
Senator Hubley: No.
Mr. Thompson: The Honourable Senator Jaffer?
Senator Jaffer: No.
Mr. Thompson: The Honourable Senator Nancy Ruth?
Senator Nancy Ruth: No.
Mr. Thompson: The Honourable Senator Ngo?
Senator Ngo: Yes.
Mr. Thompson: The Honourable Senator Tannas?
Senator Tannas: Yes.
Mr. Thompson: Yeas, 5; nays, 4; abstentions, nil.
The Deputy Chair: Clause 1 carried.
Shall the title carry?
Hon. Senators: Agreed.
The Deputy Chair: Shall the bill carry?
Senator Eggleton: On division.
Senator Jaffer: We want a roll call.
Senator Eggleton: Roll call? Yes, let's have a roll call.
Mr. Thompson: The Honourable Senator Ataullahjan?
Senator Ataullahjan: Yes.
Mr. Thompson: The Honourable Senator Andreychuk?
Senator Andreychuk: Yes.
Mr. Thompson: The Honourable Senator Eaton?
Senator Eaton: Yes.
Mr. Thompson: The Honourable Senator Eggleton, P.C.?
Senator Eggleton: No.
Mr. Thompson: The Honourable Senator Hubley?
Senator Hubley: No.
Mr. Thompson: The Honourable Senator Jaffer?
Senator Jaffer: No.
Mr. Thompson: The Honourable Senator Nancy Ruth?
Senator Nancy Ruth: Yes.
Mr. Thompson: The Honourable Senator Ngo?
Senator Ngo: Yes.
Mr. Thompson: The Honourable Senator Tannas?
Senator Tannas: Yes.
Mr. Thompson: Yeas, 6; nays, 3; abstentions, nil.
The Deputy Chair: The bill is carried.
Does the committee wish to consider appending observations to the report?
Senator Eggleton: Yes.
The Deputy Chair: Shall we go in camera?
Senator Eggleton: I'm happy to do it in public.
Senator Jaffer: We're happy to do it in public.
Senator Eggleton: Let's do it in public.
Senator Andreychuk: I think it's terribly unfair if the steering committee has been working on observations, which I have not seen in a final form, that we would do it in public. If there are to be observations, I think we should have the courtesy to discuss the drafts, as we always do, in camera. We can return back for acceptance of the observations in public. I think we should have some right to input them in the same manner as the steering committee did, which would be in camera.
Senator Eggleton: I don't see the need to suddenly throw everybody out and go into secrecy here. Aren't we a transparent organization?
Let me tell you, I would have liked to have submitted these things in advance, but the suggestions come to me — I won't talk to them now. I'm just talking about the procedure, whether we go in camera or not. I'm speaking to that.
There were suggestions that came from UNICEF Canada that deal with how this might be administered, and I think these things are worthy of consideration.
I just saw these this morning, but I'm happy if you want to leave this whole matter over to another day, and then I can give it to you all in advance.
Senator Eaton: No. We want it in camera.
Senator Eggleton: You want it in private? You don't want to talk about this in public?
Senator Eaton: I think we can do the observations. As Senator Andreychuk said, we can read them aloud.
Senator Eggleton: I'll read them aloud. Thank you very much.
Senator Eaton: But right now —
Senator Eggleton: That's very kind of you. I'm happy to do that in public session. Wait a minute now. You didn't take a vote on that. I'm against going into private. I prefer to remain public.
The Deputy Chair: Do we have a motion to go in camera?
Senator Eaton: I suggest we do what Senator Andreychuk suggested: We discuss the observations in private and go on camera to register them.
Senator Eggleton: Then we come into public session to talk about them again?
Senator Eaton: Yes.
Senator Andreychuk: As you wish, but I think we have a precedent in the Senate, and it would be interesting that now you want that level of transparency. I will be noting that in the record and certainly raising that when other committees will be asking for the right to have that kind of honest discussion before they then put their own points of view in a public meeting. It has been a courtesy.
Senator Eggleton: I think it's a good idea generally. It's about time we got more transparent, don't you think?
The Deputy Chair: Is there agreement to go in camera?
Some Hon. Senators: Yes.
The Deputy Chair: We need to suspend so we can have the room cleared. Thank you.
(The committee continued in camera.)
——————
(The committee resumed in public.)
The Deputy Chair: Is it agreed that the committee pass the bill?
Senator Andreychuk: We don't pass bills but we adopt bills. I have been fighting this battle every time, but I will put it on the record.
Senator Mobina S. B. Jaffer (Chair) in the chair.
The Chair: Honourable senators, as you know we had an extended clause-by-clause discussion, and instead of finishing at four o'clock, we will finish at 4:15.
Welcome to the twenty-fifth meeting of the Standing Senate Committee on Human Rights to be held during the Second Session of the Forty-first Parliament.
[Translation]
Our committee has been mandated by the Senate to study issues pertaining to human rights, both in Canada and abroad.
[English]
My name is Mobina Jaffer and I am chair of the committee. I will ask the other committee members to identify themselves, starting with the deputy chair.
Senator Ataullahjan: Salma Ataullahjan, representing Ontario.
Senator Frum: Linda Frum, Ontario.
Senator Andreychuk: I'm Senator Andreychuk from Saskatchewan.
Senator Ngo: Senator Ngo from Ontario.
Senator Eaton: Nicky Eaton from Toronto.
Senator Cowan: Jim Cowan from Nova Scotia.
Senator Hubley: Elizabeth Hubley, P.E.I.
Senator Eggleton: Art Eggleton, a senator from Toronto.
The Chair: We are here to continue our hearings on Bill S-201, a private member's bill introduced by Senator Jim Cowan, the Leader of the Opposition in the Senate.
Bill S-201 is called the ''Genetic Non-Discrimination Act.'' It was inspired by the rapidly growing field of genetics in medical science, which is increasingly able, through a simple blood test or mouth swab, to learn if someone has a genetic pre-disposition to develop certain medical problems.
In most cases, having a gene doesn't mean someone will develop a particular disease, but there may be steps one could take to reduce the chances of developing a disease if one knows one has a particular gene or genetic predisposition.
However, right now there is no specific legislation in Canada, provincial or federal, to address the problem of genetic discrimination where a person is treated differently, for example, by employers or when applying for insurance because of one's genes. In fact, many Canadians are choosing not to have genetic testing because of fear of genetic discrimination. That is what Senator Cowan's bill is intended to address.
Honourable senators, we are running late, so we will extend our meeting to make sure that the witnesses get a full hearing. To begin the study today I would like to welcome the following witnesses from the Canadian Coalition for Genetic Fairness: Bev Heim-Myers, Chair of the Canadian Coalition for Genetic Fairness and CEO of the Huntington Society of Canada; Joyce Gordon, President of Parkinson Society Canada and Chair of Neurological Health Charities Canada; Mary Sunderland, Director of Research and Education, Foundation for Fighting Blindness; and Richard Marceau, General Counsel and Senior Government Advisor, Centre for Israel and Jewish Affairs and a former member of Parliament.
I understand you have presentations to make. Could I ask a favour? We will read your presentations, so if you can make them a little shorter, this will give senators a chance to ask you questions. I leave that to your discretion. You have five minutes each to make a presentation. We will start with Ms. Bev Heim-Myers.
Bev Heim-Myers, Chair of the Canadian Coalition for Genetic Fairness and CEO of the Huntington Society of Canada, Canadian Coalition for Genetic Fairness: Thank you very much for inviting us, for listening to those communities that have experienced genetic discrimination and for continuing this conversation. Today, my remarks are going to centre around the global response to genetic testing and use of information, a barrier to early detection and treatment, workplace discrimination, addressing insurance industry concerns and direct-to-consumer testing.
The conversation is not new in Canada. When the global genome project started, many countries, including Canada, engaged in a dialogue about where the genome project would lead. In Belgium, legislators and decision makers were informed by scientists and agreed that genetic information needed to be protected. Belgium, along with Austria, Denmark, Finland, Norway and the Netherlands, implemented explicit legislative provisions prohibiting the use of genetic testing information for insurance purposes.
During that time, Canada accommodated the insurance industry and agreed to take a wait-and-see approach. That was almost 25 years ago, and the industry is still asking for a wait-and-see approach. Since that time, a series of countries have acted, including the U.K., France and the United States, and now Canada is the only G7 country that does not protect genetic information.
Over the last several years, private members' bills have been presented, bringing legislation similar to other countries' forward to end genetic discrimination. No bills have passed, yet all parties have addressed genetic fairness at some point and supported it. Science has outperformed legislation. It is time that Canada acted.
According to public opinion research carried out by the federal government, 91 per cent of Canadians feel that insurance companies should not be able to access their genetic test information for underwriting purposes. In my experience in speaking to Canadians, they are shocked that we actually have to disclose our genetic test information to insurance companies.
Genetic discrimination is a reality in Canada. It is well established that individuals shall not be discriminated against based on their disability, yet outdated laws still enable insurance companies to discriminate based on perceived disability or the prospect of a future disability. Current legislation does not address the concept of future disability or prevent discrimination.
In a world where the genome project has led us to personalized medicine, making it possible for early prevention, detection and treatment of many diseases, including breast cancer, genetic discrimination by insurance companies and employers is a barrier to the future well-being of all Canadians. In the case of Huntington disease, individuals from HD families cannot get life insurance unless they prove that they do not have the genetic mutation. In one case, an individual went through the lengthy process of getting tested for the HD mutation. He did not have HD but was turned down for life insurance because he ''could get Huntington disease.'' This is untrue and demonstrates that insurers are not well informed.
Less than 25 per cent of Canadians at risk for HD choose to get tested. Most of the reason is fear of genetic discrimination. Research indicates that 86 per cent of individuals at risk for HD fear genetic discrimination for themselves and their families.
This is a sad outcome. Young families should have the right to make informed life decisions, like starting a family. We know that a person can delay the onset of HD symptoms if they lead a full life, including cognitive stimulation, physical exercise and strong social interaction. We are also beginning clinical trials in 2015 that target the root cause of HD and have the potential to stop and reverse the symptoms of this disease.
Why are we letting the barrier of genetic discrimination stand in the way of Canadians leading their best-informed lives and participating in life-saving research? Consider a healthy male in his late twenties. He and his wife are hoping to start a family in the next few years. He applied for life insurance. He is a healthy non-smoker and has no medical conditions. His parents and siblings are healthy and are not known to have hereditary conditions. His application was fully declined because of ALS — Lou Gehrig's disease — originating in one of his grandparents. His parents are both healthy and have no signs of symptoms of ALS. He was further informed by the insurance company that the decision could be reconsidered if he should pursue genetic testing and prove to them that he has a negative result. This just happened.
Less research has been done on workplace genetic discrimination in Canada. A lot of people don't come forward. In the paper Beyond the Patient, by Dr. Yvonne Bombard, a significant number of individuals from HD families fear genetic discrimination by employers for themselves and their families. Dr. Bombard describes an example of her first patient, who was tested for the HD mutation and had it but was asymptomatic. After this person's employer discovered the genetic test results, his responsibilities at work were shifted, and he had no recourse.
The case of the two brothers in their twenties at risk for Long QT, a genetic mutation leading to a sudden fatal heart attack, is illustrative. One was tested, has the mutation, will be treated and accordingly will not die of a massive heart attack. He will also not qualify for life insurance. The other brother is in the middle of a job search and refused to get genetic testing for fear of employers finding out. He will be able to access life insurance.
Who wins in this scenario when the untested, insured brother dies of a massive heart attack at the age of 40, leaving behind a wife and young children? Does it really make sense that an employer can't inquire about a person's marital status but can have access to private genetic information?
Insurers have defended their right to genetic information by arguing that they need it to ensure that their business models remain viable. As you know, research commissioned by the Privacy Commissioner of Canada concluded that banning the use of genetic test information would not lead to a significant impact for the industry. The insurers also believe that the Canadian consumer is different and prefers whole insurance as opposed to term insurance.
The Canadian consumer is no different than consumers in all other countries that protect genetic information and have a thriving insurance industry. Like all purchasers, we consider the products that are offered to us.
Another concern by the insurance industry is that if individuals know their genetic status, they could benefit by buying large amounts of life insurance. A paper written by R.J. Thomas states that the concept of over-insurance as an attractive investment, while it may sound plausible, using realistic probabilities and premiums suggests that in most realistic scenarios over-insurance is not an attractive investment.
In the U.K., the claim was frequently made that if insurers were not permitted to use genetic tests, this would lead to a very large rise in average insurance prices or even the collapse of some insurance industries. That has not happened.
As in Canada, these comments were not supported by the actuarial simulations of insurance markets where genetic test results are known to the customers but unknown to the insurers. In summary, the point is made that the impact of not allowing insurers knowledge of genetic tests made in the early 2000s has turned out to be greatly exaggerated. Evidenced by a thriving insurance industry in the U.K., it seems that all is well, even though the industry has not had access to genetic test information for many years.
We also welcome direct-to-consumer testing companies, like 23andMe, to Canada to profit from Canadians' curiosity, with no regard for the predictable outcome of genetic discrimination. With the appropriate protections and cautions in place, in time, perhaps genome sequencing for $199 is a good thing, but for now our government is allowing us to be misled.
Genetic information is private, sensitive, complicated information, requiring a high degree of protection. It must be used to prevent illness and save lives, not be used against people. Not protecting genetic test information and allowing insurance companies and employers to use an individual's most personal, complicated and not very predictable genetic information will have a lasting negative impact on the health and well-being of all Canadians.
It is time to make genetic fairness a reality in Canada and support Bill S-201 because no one has perfect genes.
The Chair: Thank you very much for your presentation.
Joyce Gordon, President of Parkinson Society Canada and Chair of Neurological Health Charities Canada, Canadian Coalition for Genetic Fairness: Thank you for the opportunity to testify today on Bill S-201, to prohibit and prevent genetic discrimination.
As a member of the Canadian Coalition for Genetic Fairness and a member of Neurological Health Charities Canada, which is a coalition of 23 member organizations, as well as CEO of Parkinson Society Canada, I applaud the Government of Canada for announcing genetic fairness as a priority in the 2013 Throne Speech and for the opportunity to share our stories today in regard to this bill.
Across Canada, there is a growing public and professional awareness of and concern over the issues around genetic information and genetic discrimination. Genetic information, as you have heard from Bev, is personal, complicated and often misunderstood.
Genome sequencing might seem no less private than the detailed family history of diseases that insurance companies already demand, but as we get more and more information, it becomes a much more powerful means to assess someone's health. In addition, a person who chooses to map their genome gives up information not only about themselves, but about their parents, children, siblings and other close relatives. Many are concerned about the impact not only on themselves but on their loved ones.
The following is but one sample of comments that we hear at Parkinson Society Canada by family members that have other family members with Parkinson's. Here is a quote from one of them.
My father, aunt and 2nd cousin were all diagnosed with Parkinson's disease and my sisters and I were interested in receiving genetic testing to see if we have the gene associated with Parkinson's. However, because we fear our children will be at risk of discrimination should a possible link be found and that we may have difficulty receiving insurance, we decided against any genetic testing based on the potential negative impacts it could have.
As you may know, the vast majority of cases of Parkinson's disease are sporadic, with no identifiable cause, which means no other family members have Parkinson's. However, approximately 14 per cent of people affected by Parkinson's have a first-degree relative that is also living with the disease. Five to 10 per cent of the Parkinson's community is affected by a genetic form of Parkinson's disease. There is no cure for Parkinson's, as for many neurological conditions.
Canadians with a family history of Parkinson's may be at risk of being denied insurance and/or employment based on a future perceived disability. Some people refuse important genetic tests out of fear that their insurance company might gain access to their test results and begin charging them a higher insurance premium or not cover them at all.
Establishing a genetic link is only part of the equation. Having a hereditary predisposition to a disease is by no means the same as having the disease and turning this genetic information and knowledge into a formula to assess and predict disease susceptibility
And it's complicated. There are many complex factors that influence the onset of a disease that analysis cannot take into account. Different genes can cause the same disease, and a massive 95 per cent of the time one disease is actually the result of interplay among genes. For example, there are 28 distinct chromosomal regions related to Parkinson's. It is complex, with multi-factorial causes.
In Canada, as you have heard from Bev, outdated laws still enable insurance companies to discriminate based on perceived disability or the prospect of future disability. Insurance companies can use genetic information to determine eligibility, set premiums and manage their risks. Definitive decisions can be made based on inaccurate, misunderstood and often unclear genetic information. This could mean being rejected for employment or loss of access to insurance coverage based on the notion that the individual may be disabled from the future.
Current legislation permits insurers to ask applicants to divulge personal health information, including genetic data and family history, and to consent to having this information verified. This puts consumers under duress because they may be denied the coverage if they fail to do so.
Genetic fairness protection is critical for Canadians with Parkinson's, especially since the Government of Canada has moved forward with personalized medicine, research through Genome Canada, as well as Health Canada's recent approval of 23andMe, a saliva-based DNA service providing genetic reports on ancestry and family history. It would be interesting to see whether the companies offering these services and our health care system have enough resources available to make sense of the output and the impact of the information. Genetic testing should always be offered in a framework of genetic counselling and based on an informed decision by the individual.
Canada is moving forward with genetic-based initiatives, when we remain the only G7 country without formal provisions in place to protect Canadians from genetic discrimination.
In Canada, we cannot discriminate against race, gender or disability, but we can against DNA. Canada's lack of genetic fairness legislation is a barrier to citizens participating in health research, including personalized medicine initiatives. Genetics is a vital area of Parkinson's research, with the hope of finding a cure and better treatments, but many are reluctant to participate in genetic research because they fear discrimination from both employers and the insurance industry.
Personal genomics promises to be an everyday reality. We need to address the privacy, ethical, health and economic issues surrounding genetic information and to put safeguards in place.
Legislation in this area is imperative and the neurological community asks the Government of Canada to enact legislation to protect Canadians from genetic discrimination to ensure genetic fairness.
Thank you.
Mary Sunderland, Director of Research and Education, Foundation Fighting Blindness, Canadian Coalition for Genetic Fairness: Good afternoon. Thank you for the opportunity to share the stories and experiences of the Foundation for Fighting Blindness community. My name is Mary Sunderland and I am the Director of Research and Education at the Foundation Fighting Blindness, which is Canada's largest charity dedicated to supporting sight-saving research.
I'm here today with two messages: One, genetic diagnoses are critically important; and, two, genetic discrimination is real for those who are living with retinal degenerative disease.
As an advocate for the visually impaired community, I am passionate about Bill S-201, but I am also here as a mother. I have two sons and my one-year-old, George, was born with congenital cataracts. Although George was rather unlucky to have been born with this rare disease — only 20,000 to 40,000 babies are born with congenital cataracts each year — he is lucky because his dad, who has incredible attention to detail, noticed a strange cloudiness in George's eye. George is lucky because his dad noticed this in time for him to have surgery, which ultimately saved him from going blind in that eye. For children who are born with congenital cataracts, early diagnosis and treatment are essential. It is the difference between vision and blindness.
Untreated congenital cataracts are the leading cause of treatable childhood blindness. This is because many of the children born with congenital cataracts are not as lucky as George. Cataracts are very difficult to identify, which means that many children go undiagnosed until it's too late for them to benefit from surgical removal. In addition, congenital cataracts are a symptom of more than 100 rare diseases.
Just this summer, researchers published a break-through study which demonstrated that advanced DNA testing for congenital cataracts can identify the genetic causes of cataracts, sometimes diagnosing them as a symptom of another rare disease. This early diagnosis is critical because it enables the early treatment. This new diagnostic test is exactly the kind of novel intervention that we hope to support at the Foundation Fighting Blindness.
The trouble is that there are serious and real risks associated with taking genetic tests in Canada. So knowing what I know now, would I have wanted George to have this test? The answer is no, not until there are laws in place to protect him from the discrimination that I know exists.
I know that genetic discrimination exists because my colleague, Erin George, has been denied full long-term disability coverage because she has a disease called retinitis pigmentosa. This is a degenerative eye disease that gradually robs people of their sight.
Erin did not expect that she would be granted coverage for her pre-existing disease. What really surprised her was that she was denied coverage for any potential future ailments that might require support from long-term disability. Because retinitis pigmentosa did not actually affect Erin until she was an adult, she is even more aware that unforeseen disabilities can strike at any time. This is precisely why she wanted to secure the best long-term disability coverage before her first child was born. But she was denied this coverage.
Because of this, Erin has even more to worry about. She actually really wanted to be here today. She wanted to share her experiences of discrimination, but as a mother of two young children, including a new baby, she is sending her message through me. Bill S-201 is needed.
This bill also matters to me as someone who is committed to building better treatment options for those living with retinal degenerative diseases. At the Foundation Fighting Blindness, we are about to support the first gene-therapy trial for choroideremia, another rare form of childhood blindness. To be selected for the trial, participants enter their genetic diagnosis into the foundation's patient registry.
What is one of the more worrisome risks of enrolling in the patient registry in Canada? Genetic discrimination. In my role at the foundation, I'm responsible for warning potential participants that genetic discrimination is legal and real in Canada.
Bill S-201 has the potential to change this. We need Bill S-201 to ensure that Canadians have access to genetic diagnoses that are required for timely interventions. We need Bill S-201 to ensure that Canadians are empowered to participate in clinical trials without the fear or risk of genetic discrimination. We need Bill S-201 so that Erin has access to the insurance that she needs. We need Bill S-201 to prevent genetic discrimination in Canada.
Thank you for listening. I am grateful for the privilege to speak on behalf of the Foundation Fighting Blindness community.
The Chair: Thank you very much, Ms. Sunderland.
Mr. Marceau.
[Translation]
Richard Marceau, General Counsel and Senior Government Advisor, Centre for Israel and Jewish Affairs, Canadian Coalition for Genetic Fairness: On behalf of the Centre for Israel and Jewish Affairs, which is the advocate for Jewish federations in Canada, I am thankful for the opportunity to support Senator Cowan's Bill S-201.
[English]
Unlike the other 15 members of the Canadian Coalition for Genetic Fairness, CIJA does not advocate for those affected by any particular disease or disorder. We are here speaking to the impact of genetic discrimination on hundreds of thousands of Jewish Canadians from coast to coast.
I am pleased to note that the imperative to prevent discrimination based on genetic testing benefits from a broad-based consensus which transcends political party lines.
As you know, in the last Speech from the Throne the Conservative government pledged to:
Prevent employers and insurance companies from discriminating against Canadians on the basis of genetic testing.
An NDP private member's bill has been introduced in the House of Commons to amend the Canadian Human Rights Act to prohibit genetic discrimination, and of course we're here to discuss Senator Cowan's Bill S-201.
As Bev noted in her remarks, Canada's wait-and-see approach has resulted in a serious legislative gap that no longer exists in any of our G7 partners or in countries like Israel, which enacted comprehensive safeguards as far back as the year 2000.
[Translation]
In liberal, democratic societies in a market economy, the 14 years that followed clearly indicated that legislative protections would not destroy the insurance industry, no more than they would cause employers to go bankrupt. Experience shows that these fears are unfounded. Legislative measures, like those proposed by Senator Cowan, would support advanced research, diagnostics and treatment that could enable all Canadians to live in better health and live longer. Genetic discrimination is not just an issue that affects individuals susceptible to developing certain diseases or health problems. Other ethnic communities are just as vulnerable.
[English]
Jewish Canadians, for example, disproportionately carry genetic markers suggesting increased risk for certain types of cancer. Testing for this information free from threat of discrimination is crucial for improving health outcomes and saving lives.
Centuries of Jewish endogamy have resulted in a relatively homogenous genetic group particularly among Jews of Eastern European descent known as Ashkenazi Jews. This has led to significant genetic testing and research on so-called Jewish genetic diseases occurring in children, like Tay-Sachs disease.
Genetic testing is already standard practice in much of the Jewish community, with couples being screened for a panel of genetic diseases before marrying or having children.
With the mapping of the human genome, new areas for genetic medical research have been unlocked. Promising new discoveries are being made at an exponential rate. These breakthroughs have a remarkable potential to impact health outcomes for Jewish Canadians.
One such example is the BRCA1 and BRCA2 genetic markers for breast and ovarian cancer. Ashkenazi Jewish women are 10 times more likely to carry these cancer causing variants than the general population, increasing their risk of cancer up to 80 per cent. While the Jewish community is the most disproportionately affected, we are not the only group at an elevated risk compared to the general population.
[Translation]
Geneticist Mary-Claire King, who discovered BRCA1, recommends genetic screening for these carcinogenic genetic variants in all American women over the age of 30. According to the Canadian Cancer Society, screening and prophylactic intervention can reduce the risk of these women developing breast cancer by close to 90 per cent. Given the prevalence of BRCA markers in Ashkenazi Jewish women, this is a priority for our community that could save lives. Unfortunately, there are practical obstacles to universal screening because of the possible denial of employment or coverage by insurance companies that is based on genetic discrimination.
[English]
The Jewish community remains Canada's most frequent target of hatred and discrimination. According to Statistics Canada, our community has been victimized by hate- and bias-motivated crime at a rate ranging from 15 to 25 times that of the overall population.
Just as science has saved countless lives, it has also been wielded as a dangerous weapon to advance hatred and discrimination. While it's obvious that nothing of the sort is on the horizon in Canada, there is a real concern that those who cannot legally discriminate against Jews or other minorities based on race, religion or ethnicity could do so based on genetics.
[Translation]
Science has now surpassed the legislation in Canada. It is time for Canada to catch up and ensure that genetic discrimination is illegal in Canada. Thank you.
[English]
The Chair: Thank you. We will now go on to questions, and we will start with the sponsor of the bill, Senator Cowan.
Senator Cowan: I have a question for Ms. Heim-Myers. In the course of your work, you're travelling across the country. I know you met with provincial authorities probably from coast to coast to coast and discussed the gap that you see and the need for some intervention. Have you discovered, uncovered or heard of any opposition at the provincial level to this legislation?
Ms. Heim-Myers: No, absolutely not. The question always is: What are they doing at the federal level? It's always acknowledged in a meeting that the insurance industry is regulated at the provincial level, and that's accepted; but the provinces are generally waiting to see what's being done or will be done at the federal level, and they will follow suit. They are waiting with positive anticipation. It's not a concern. It is not, ''You're playing in my backyard and you should not be.'' It is something they are looking forward to.
When I'm speaking to the provinces, it would be most helpful if we had something at the federal level to help cascade down, much like what happened in the States where GINA, the Genetic Information Nondiscrimination Act, addressed some of the discrimination but not all of it. Many of the states have implemented very stringent protection for genetic information. That was a cascade effect. It was a good example set at the federal level and cascaded down to the individual states. So no concern has been expressed at all.
Senator Cowan: I think Senator Nancy Ruth, at one of our earlier sessions, said it is really a question of who will make money and who will pay and are there winners and losers here or is there some way this could be seen as a win-win situation. How do you view it?
Ms. Heim-Myers: I think the win-win situation is protecting genetic information.
I will take you back to the example of the Long QT syndrome in the family — and this is a true story — where one brother was tested and found to have the genetic mutation. He will be treated with beta blockers and live a good long life. He knows what to expect. He'll lead a good long life, but he will not get life insurance. The brother who is not being tested out of fear of employment and insurance discrimination could very well drop dead of a massive heart attack at the age of 40, leaving behind a family. Who wins in that scenario? No one wins.
If we protected genetic information and both brothers were tested, both brothers would be treated with beta blockers going forward and lead long, healthy lives. That's the win-win situation, to protect genetic information.
Also for our health care: Every day there are new treatments discovered for many diseases because of the benefit of the genome project. We need to all benefit from that, and we need to be comfortable going forward. We need people to come forward and participate in clinical trials so that everybody can benefit from the wonderful research going on. We don't need the barrier of genetic discrimination. So that is a win-win situation.
Senator Cowan: I have a general question to throw out to panel members. It has also been suggested that there is no need for legislation and that the Privacy Act, the Canadian Human Rights Act, PIPEDA, individually or collectively, provide sufficient protection. Could I ask you for your thoughts on that viewpoint?
Ms. Heim-Myers: The current legislation is not clear, so people don't know that they're protected, and genetic information is not specifically stated. Right now, the onus is on an individual to prove that they have not been discriminated against and to prove that somehow they fall within PIPEDA or within the human rights somewhere. It's not explicit at all.
We know from examples of other people who have been discriminated against in different ways that they feel violated. When a person feels violated, they will not come forward. They don't come forward to go through the legal system to fight for this. We need to do something, which legislation will do, to stop discrimination from happening.
Mr. Marceau: There is incidental evidence that in fact discrimination is happening with the current legislation. We believe — and I think I would speak for all the members of the Canadian Coalition for Genetic Fairness — that more protection needs to be added.
In terms of means, we have in front of us a bill that actually does that, despite the jurisdictional issues that Bev mentioned earlier. We're open to any suggestions that might make the bill better, but as we can see now, it's a pretty good bill. We're looking forward to having the government follow through on its commitment in the last Throne Speech to support the fight against genetic discrimination.
From where I sit, the fact that there is cross-party support — obviously, your bill, the Speech from the Throne commitment, as well as Libby Davies' bill in the House of Commons — shows that there is a political will. The three political parties have identified genetic discrimination as a problem that exists now in Canada. There is a consensus across the board. So let's roll up our sleeves, identify the way to fight it, and let's make it happen.
Senator Ataullahjan: I thank you all for your presentations and for being here. I apologize that you had to wait.
When Senator Cowan spoke in the chamber, he said that 10 years ago there were 100 tests; last April, 2,000; and now, 13,800 for 4,000 conditions and 2,600 genes.
Do we know of any countries that have taken steps to eliminate genetic discrimination, and how prevalent genetic testing is in other countries? I know specifically in the U.K., it's quite high.
Ms. Heim-Myers: We're the only G7 country that has not addressed it. I mentioned Belgium earlier in my talk. Other countries have addressed it, and they have put in specific legislation to protect genetic information.
I think now there are closer to 23,000 genetic tests. If you go to the Web and look one day, two days later, it has increased by 500 tests. This is an incredibly rapidly moving target, which is good for all Canadians if we can benefit from it.
But, yes, many countries have taken steps to eliminate genetic discrimination. In the U.K., where they have implemented genetic fairness provisions, there has not been a negative impact on insurance companies. They have survived, and the fear of that happening has not come to fruition. We have examples of many countries where this has not been a detriment to the insurance industry or employers, but it has certainly been a benefit to the individuals.
Ms. Gordon: I think what's happening is that the science is outpacing the legislation. As you've just heard, there are exponential increases in identifying genome sequencing, but we have not had the legislation and even ethical code support for what we need to do as this landscape is changing.
Ms. Sunderland: I wanted to speak to a few of the questions that have been brought up in terms of how this might be a win-win situation and how common are tests.
The test that I referred to when I was speaking is this new test that was just published in late August, where you can do something with congenital cataracts. They were suggesting that this should move to be a new standard of care, which would never have been possible a long time ago because the cost of doing the test was so important. But part of why they were arguing that it should be a new standard of care is because it has the potential to save so much money. Especially with rare diseases, so much money is spent on trying to figure out what is wrong here and what is going on, and a tremendous amount of money is spent on trying to get an accurate diagnosis and on treatments that don't work because the diagnosis was not correct. So this opens the door to have a quick, efficient and effective diagnosis, and then to spend money on treatments that will actually help the individual.
Mr. Marceau: I know the subject of Israel was raised in this committee. When, in 2000, the state of Israel passed legislation to deal with genetic testing, specifically in that bill they made provision against genetic discrimination, mainly in two fields: one in employment and one in insurance.
In terms of employment, it prohibits the employers from demanding genetic information or testing for employees or job candidates.
In terms of insurance, an insurer cannot ask any questions about past genetic tests and results. They may not make use of any identified genetic information to refuse insurance coverage. All of this is to say that individuals have a protected right to refuse to provide genetic information to an insurer without any penalty.
Senator Eggleton: Thank you very much for your presentations.
Back when we had an earlier hearing on this matter, the Canadian Life and Health Insurance Association appeared, and they pointed out that there was an industry code that they were volunteering to implement. It's an eight-part code, and they say their members will adhere to it. It includes, first, that no Canadian will be asked to take a genetic test as a condition of obtaining insurance. It goes on from there with a number of other complementary clauses. But it does point out that if one is taken, it feels that that kind of information should be shared. What are your thoughts about this voluntary code by the industry?
Ms. Heim-Myers: It doesn't exist. I gave an example of the young man who was from a family with ALS — his grandparent. He applied for life insurance and was denied because ALS was in the family at the grandparent level. The parents are not impacted at this point in time, and they were 20 years older than the grandparent was when that person succumbed to ALS.
What came back to that individual — and I hear this all the time — is, ''If you can prove to us that you do not have the genetic mutation, then we will reconsider.''
Where they're saying there is a voluntary moratorium on asking people to get genetically tested, they will not even consider insurance until they come back with ''I do not have the mutation.''
In one case, which I mentioned earlier, with the individual who does not have the genetic mutation for Huntington disease, they were still denied because they might get it, which is very untrue. That does not happen. You have to have the mutation before it will manifest.
They are saying there is a voluntary moratorium. Perhaps they don't say, ''Please get a genetic test.'' What they do say is, ''We will not consider this unless you prove to us you do not have the mutation through a genetic test.''
Senator Frum: Mr. Marceau, I appreciated your comment that this is a non-partisan issue and it's something that there is support for among all the parties. The difficulty, as a number of you have mentioned, is the issue of jurisdiction and that if this law is challenged presumably by the insurance companies, which I think it will be, it will be found to be unconstitutional because there is no federal jurisdiction over insurance regulations.
Ms. Heim-Myers, you made reference to the work that you have done and you are talking to the provinces. I'm interested in a provincial versus a federal approach in terms of law and regulation. Does it not have to come at the provincial level?
Ms. Heim-Myers: I think we need both. I think we need it at the federal and provincial level. I think we need to set the example at the federal level, but from the regulatory perspective, the insurance industry is regulated at the provincial level.
The challenge with not having the umbrella at the federal level of protecting genetic information and setting that example is you don't want a piecemeal approach across Canada. We don't one province protected and another not protected because that will create confusion and inequities for individuals applying for insurance. So if we have an overlay at the federal level of protecting genetic information, then in moving forward it will be more respected at the provincial level. I don't see an issue with moving forward at the provincial level given the conversations I have already had with the provinces.
Mr. Marceau: I do appreciate the question and, yes, insurance is indeed a provincial jurisdiction.
I think we're looking for a signal that would be sent across the country. As I said in the previous answer, the way the signal is sent is not as important as it is sent. I understand from conversations with people in the government that that's what the government is trying to wrap its head around. In the Speech from the Throne, they said that we want to fight this, but how can we make sure that it's fought in the proper way and it's not contested in front of a tribunal?
We're saying this bill is a way forward. There may be ways for the government to amend it to make it better and to make sure it's all fair and good, but it's the signal that is important. The signal that is sent to the insurance industry and to the provinces is that this problem is real.
I go back to the first comment that you made to me, in your question: There is a political will to make it happen. As Bev said, the will is also there at the provincial level, but at some point somebody has to say, ''Okay, let's do it.'' We're looking at the federal government to be the one who will light the fire to make sure this protection is put into place as soon as possible. Senator Cowan's bill is a nice way to get that conversation going and make it happen.
Senator Hubley: Thank you for being here and for your presentations.
In your experience, you have seen an increase in the amount of medical information that is being required by companies. As you say, they are moving to not insisting on genetic tests, but implying that it will be an important piece of information that they would like to have. Have you seen a major increase for that in businesses over the last while?
Ms. Heim-Myers: It's hard to measure because people will not come forward. I've seen an increase in anecdotal information, where people have come to me and said that when they are being promoted to a different level in a company that that information is being requested or looked at. But it's not evidence-based research. People don't tend to come forward when this is used against them in an employment setting.
It is anecdotal. I'm sorry, but I don't have the research. I had mentioned that earlier. There is not a lot of research because people feel violated, embarrassed and out of control. There are many instances where people are in different situations and they don't come forward. So there is precedent.
Senator Hubley: Thank you very much.
Senator Eggleton: I was interested in Mr. Marceau's comment that this was a signal because I heard people say that about the last bill, Bill S-7. Even though the provinces, who would be very much involved in that — well, it was still a good signal. And I know the majority of the committee said — I couldn't resist saying that at this point just so that you remember it when it comes to dealing with this bill clause by clause.
I want to ask you about the United States and the GINA project. It has been around since 2008. The act was passed in 2008. As you pointed out, a number of states have adopted various measures on discrimination in employment or on insurance.
It's always good to learn from what other people do. There has been some mention of the U.K. experience and the Israel experience, but let's talk more about this U.S. experience. Where do you see the pluses and minuses in terms of that legislation?
Ms. Heim-Myers: For the GINA legislation, the plus would be that people had access to health care and disability insurance. What was dropped off the table with GINA was life insurance. So where the insurance industry stood beside them in this legislation, the only way it would go through is if they dropped the life insurance part of GINA.
That example — for the rest of the states — is that stronger genetic protection has been implemented, especially in California; it's a very comprehensive protection. With GINA going through in 2008, it would have been wonderful, and this is what they were working towards, to have health, life and disability insurance included together, but that wasn't the case. The good news is that there is coverage, but they don't have the life insurance. However, individual states like California have followed suit, picked it up and implemented much stronger genetic protection legislation.
So it was a very good example. It was a signal. It was a validation that genetic information is complicated and personal information that should be owned by the individual and not used against that individual, but only used as they see fit. All of this was excellent, a good thing and a good message.
Senator Eggleton: The insurance industry in Canada seems to think that it's possible that the premiums would be increased and that the costs would be increased. Is there any evidence that the industry in the United States is panicking over this?
Ms. Heim-Myers: No, on the contrary. In the paper that I referred to in my talk, in the U.K. there was a fear that premiums would increase. In fact they haven't. They haven't because monogenetic diseases are rare. Huntington disease is a monogenetic disease. It's on one chromosome and it's very definable, but it is a rare disease and there are not many of them. Most diseases are multi-factorial diseases, like Parkinson's, and genetic discrimination is based on a perceived future disability. It's not coming to fruition and it's not happening. There hasn't been an impact on the insurance premiums. In the U.K., historically that fear has not come to be.
Senator Eggleton: Is there any evidence about it increasing? I would think that it would decrease health care costs, because if you have a genetic test, then you get it early enough and you can take preventative action. We had Dr. Ronald Cohn here at a meeting recently, who is in genetic medicine at the Hospital for Sick Children at the University of Toronto. He said how much different the costs in health care would be if you had the genetic test and caught it early. I take it you would agree with that?
Ms. Heim-Myers: Absolutely. There is a liver disease that if you identify it early, they will never manifest in an individual.
With Dr. Cohn's example, if we don't have a test now, we know we will in the near future. I think when he talked there were 56 tests for known genetic diseases in children, and within two weeks it had increased to 58. It's not only understanding now about what a child can be tested for, but it's understanding about how that child can be treated in two weeks or in the future when we have a treatment for that disease.
Senator Eaton: I have a supplementary to Senator Frum's question.
Mr. Marceau, you were saying in your response to her that there are certain diseases that are more prone to the Jewish community, I think, certain cancers. Couldn't you say that about other communities? Isn't sickle cell anemia more prone to the Black community for instance?
Mr. Marceau: Yes, certain markers are more prevalent in some communities. For example, South Asians tend to have a higher rate of heart disease or diabetes. Certain groups are more prone to certain diseases. Obviously, I illustrated this with the Jewish community, but other groups also carry some genetic defects more than others.
Senator Eaton: I think this has been known for some time. Have insurance companies ever discriminated against certain communities because diseases were more prevalent in them than in others?
Mr. Marceau: Not to my knowledge.
The Chair: I thank all of you. As you can see, there's a lot of interest. There are many more questions that colleagues could ask. I would ask, therefore, if there is anything that we haven't covered, please submit it in writing to the clerk of the committee so we have a fuller picture.
Again, I apologize for keeping you waiting. We have learned a lot from you. Thank you very much.
I am happy to welcome, from the Canadian Association of Genetic Counsellors, Clare Gibbons, Genetic Counsellor, North York General Hospital; Julie Rutberg, Genetic Counsellor and Research Coordinator, from the University of Ottawa Heart Institute. We also have with us, from the Canadian College of Medical Geneticists, Dr. Gail Graham, President and Chief of the Department of Genetics at CHEO. I would like to welcome as well, from the Centre of Genomics and Policy, Professor Yann Joly, Associate Professor, Human Genetics, McGill University, and from 23andMe, Inc., Kathy Hibbs, Chief Legal & Regulatory Officer.
We will start with Ms. Gibbons. I would ask that you keep your remarks to five minutes, please
Clare Gibbons, Genetic Counsellor, North York General Hospital, Canadian Association of Genetic Counsellors: Thank you very much for allowing me the opportunity to testify at this committee on behalf of the Canadian Association of Genetic Counsellors. I'm joined by my colleague Julie Rutberg. We are both genetic counsellors. I want to give a little background about genetic counselling.
Genetic counsellors are medical professionals who provide families with information about genetic conditions, genetic risks and genetic testing. We strive to help patients to understand the pros and cons of genetic testing. Our focus is for patients to understand this information so that they can make the decisions about testing that are best for them and their circumstances.
As such, the Canadian Association of Genetic Counsellors decided to make a position statement to draw awareness to the issue around genetic discrimination and to call for legislation to protect Canadians because we feel that this is a very important issue affecting our patients on a daily basis. We polled our membership to find examples of circumstances where they felt that there was genetic discrimination and unfair use of genetic information. Most of our responses focused around insurance discrimination. We had very few specific examples of employment discrimination.
I'd like to share one of the most surprising examples sent to us. It has to do with a condition called hemochromatosis. Hemochromatosis is caused by mutations in both copies of a particular gene, which predisposes people to have iron overload. If the iron overload becomes high enough, it can cause debilitating symptoms and in some cases death. However, of the people with the two mutations, only a very small number of them ever develop enough iron overload to cause symptoms. People who are aware of their genetic status are able to make simple lifestyle adjustments to minimize their risks for developing iron overload, for example reducing the amount of iron in their diet, being cautious about the type of vitamin supplements they take. With this knowledge, they can have routine iron monitoring through their physicians. If they find that iron levels are beginning to rise, they can have a simple treatment called phlebotomy, or bloodletting, which brings iron levels back to normal.
This is considered to be one of the most preventable genetic conditions. I was very surprised to have a number of reports of people across Canada who were denied life insurance and, in one case, travel medical insurance because of their genetic testing for hemochromatosis. These people did not have any evidence of iron overload so this was very surprising. You may think, well, this is a rare condition, so how many people would this affect? It actually is not a rare condition as about 1 in 300 people of northern European decent would have the same genetic makeup as these patients had who were denied insurance. Most people are not aware that they carry these mutations and their status is unknown. In this case, having the genetic information made it less likely these people would develop symptoms, but it was used against them.
This is just one example of how genetic test results can be used unfairly and inaccurately. Having a few cases of these means we have some distrust of how our genetic information is being used. Because of these cases, genetic counsellors feel they must inform every patient going through predictive testing about the potential risks they could face when their genetic information is used against them. Also, there is no guarantee as to how this information could be used in future. Even if we can say now that we're not aware of many cases of discrimination from employers, we have no proof that in the future that this won't happen without some type of protection.
As mentioned before, it impacts people's participation in research. In all research consents, we are required now by many institutional research ethics boards to list under ''risks'' the disclosure of medical or genetic information that could in some way be used to discriminate against them, even though many researchers take many precautions to minimize this or prevent it from happening. It has to be listed on the consent form, which often causes concern for potential participants and reinforces concern and unease about the possibility of genetic discrimination.
We have been focusing on single gene disorders here, but as the interpretation of genetic results becomes more complex, and I'm sure it will come up in the 23andme talk, companies are available that will adjust your overall health risks based on certain genetic studies. Some of these have limited scientific validation, but people are still interested in finding out this information. It is much more complex and the predictive value of these tests is questionable. There is no protection against these results being disclosed to an insurance company if they decided to ask for them.
It is difficult to believe, given the examples we have already presented, that self-imposed moratoriums, audits or codes by insurance companies will provide enough protection for the people of Canada. The consequences of this fear of genetic discrimination are that people avoid testing for treatable conditions like hemochromatosis and some of the hereditary cancers; avoid participating in research; and may be reluctant to share their genetic information and risks with other relatives, thereby keeping relatives in the dark about their potential risks and not allowing this them to make their choices about genetic test and treatment options.
There are as many examples of when insurance companies may use other information in an unfair way; but not many of these affect people's medical decisions, whereas this one does. In other words, if I have a lump in my breast, I'm not going to say, ''I'm not going to go to my doctor to have this checked because I'm afraid of life insurance discrimination;'' but people are not taking the BRCA1 test to find out if they have an increased risk of breast cancer because they fear genetic discrimination.
The Canadian Association of Genetic Counsellors believes that Canadians need protection from genetic discrimination and the best way to accomplish this is through legislation.
Dr. Gail Graham, President, and Chief of the Department of Genetics at CHEO, Canadian College of Medical Geneticists: Thank you for the opportunity to comment on Bill S-201. I very much commend Senator Cowan for his leadership in this important initiative.
I recently assumed the role of the President of the Canadian College of Medical Geneticists, the CCMG. We are the professional organization that represents doctors who order genetic tests for patients and the laboratory scientists who make these tests possible. While the timeline of my involvement hasn't allowed for a complete survey of our membership, I can tell you that I have discussed this bill with our board of directors, including our vice-president, Dr. Judy Chernos, and the chair of our education, ethics and public policy committee, Dr. Julie Richer. We all agree that this is a complex issue, and we are extremely pleased that Bill S-201 has been put forward as an important first step in protecting patients from genetic discrimination in both employment and insurance settings.
There are four different contexts in which a patient may undergo genetic testing, and I will walk briefly through each of them. The first is that an individual is forced to take a genetic test or to disclose the results of a previous genetic test as a condition of employment. Bill S-201 will protect individuals from this unwarranted invasion of privacy, a protection that is long overdue and that exists, as you have already heard, in many other countries.
The second is that the individual has clinical manifestations suggestive of a genetic condition and undergoes what we would refer to as diagnostic testing as a patient in the context of our health care system.
The third is that the individual has a family history of a genetic condition and seeks to establish whether they will develop this condition, once again ideally in the context of our health care system. We refer to this as predictive testing, and really it can enable crucial life decisions. A 20-year-old patient who has a 50 per cent risk of developing an inherited form of visual disability, for example, may alter his career choice if a genetic test confirms that he will lose his sight. A woman who has a 50 per cent risk of developing an inherited neuro-degenerative disorder for which there is no cure may choose not to have children if a genetic test confirms that she will develop the disease, either because she doesn't anticipate being well enough to raise those children or because she does not wish to pass on the disease. Similarly, a woman at 50 per cent risk to have an inherited cancer predisposition syndrome may choose to learn her status using a genetic test in order to enable medical surveillance measures to help diagnose that cancer at the earliest possible opportunity.
Every single day, medical geneticists see the threat of insurance discrimination influencing patients' choices about whether to have a genetic test in both scenarios two and three, the diagnostic and predictive scenarios I referred to. Admittedly, the degree to which any bill can address existing insurance discrimination in those contexts depends to a certain extent on the insurer's request for the patient's medical records and family history information, both of which can prejudice an insurance application even in the absence of a genetic test. Nonetheless, I am absolutely convinced of the need for this bill and also of the important protection that it could provide.
To understand the last of the four contexts I referred to earlier, you must appreciate that new genetic technology is literally revolutionizing medicine. In the 1990s, it took more than a decade and hundreds of millions of dollars to sequence the first human genome, and now it takes less than a week and about $1,500 to sequence several human genomes. These technological advances, which are due in part to the investment of public funds in research, have given us the ability to simultaneously analyze the important coding information in all of the approximately 23,000 genes in our genome.
This technology is already beginning to be used to diagnose genetic conditions that are so rare that they have only been reported in a handful of people around the world. Even right here at CHEO we have used this technology on a research basis to diagnose conditions that have never been described before — unique, single gene conditions. The technology is also finding a key role in the profiling of non-inherited cancers so that treatments can be targeted to the genetic mutations that caused an individual's tumour. It is incredibly powerful technology, and it is the future of medicine. This is precisely why hundreds of millions of dollars were spent to sequence the first human genome.
Therefore, the fourth scenario is one in which a patient undergoes testing using this new genome technology, ideally in the context of a medical encounter, and a serious genetic condition is detected as an incidental and otherwise unexpected finding.
Medically actionable, incidental findings have only been reported in 1 to 2 per cent of individuals in large cohorts who have had this type of testing and, in many such circumstances, this knowledge allows patients to minimize or prevent morbidity by undergoing surveillance measures and/or treatment. This incidental finding scenario represents a very small risk for the insurance industry, a risk that is disproportionate to the burden to our population if fear of insurance discrimination prevents us from using these powerful technologies for health care.
We must ensure that promising new applications, such as cancer genomics, are not impaired by the fear of insurance discrimination. The time to take action is now, as this technology is about to become a routine part of medicine. If we wait, as we have already, it will be too late.
As a medical geneticist, the most important part of my job is to see patients who are suspected to have or do have a family history of a genetic condition. Most of these are rare, as you have already heard. Not a single week goes by that I am not explaining to a new patient who is considering genetic testing the potential implications of that choice on their future insurability. Last Thursday, I saw a 50-year-old woman who came to my attention because of an unusual skin finding. The nature of that skin finding raised the possibility of a rare condition called hereditary leiomyomatosis and renal cell cancer. She chose to decline genetic testing that could confirm an increased risk of an aggressive form of kidney cancer because her employer changes frequently, and every time her employer changes, she has to apply for new insurance.
A genetic blood test could tell her with certainty whether she has this condition. If the test were positive, she would require annual screening for kidney cancer, the intention being to find a cancer as early as possibly when the treatment outcomes are best. If the genetic blood tests were negative, her risk of kidney cancer would be reduced to the point that screening would not be warranted.
Her informed choice not to have genetic testing means that a genetic blood test cannot immediately be offered to her three offspring, all of whom are young adults and each of whom has a 50 per cent risk of having the same condition. Those three young adults will have to wait to see if they develop the skin findings or the cancer itself.
This is a real-life example of what happens every day in Canada because we do not have a law like Bill S-201. Patients must be able to undergo genetic testing for the sake of their own health and that of their children without fear of insurance discrimination, and they must be able to do so when it is medically necessary, without regard to whether their employment or insurance situation could change.
Short of actually providing a cure for these conditions, this is the most important thing that the government could do for my patients and for the patients of my colleagues all across the country.
Professor Yann Joly, Associate Professor, Human Genetics, McGill University, Centre of Genomics and Policy: Good afternoon, and thank you for providing me the opportunity to testify on Bill S-201 and to draw the attention of the committee to certain elements relevant from legal, ethical and public health perspectives.
I'm a lawyer, a member of the Quebec bar. I occupy the position of Research Director at the Centre of Genomics and Policy. It's an academic research centre established by Canada's research chair in law and medicine, Professor Bartha Knoppers at McGill University, a centre comprised of more than 30 researchers and research students that provide multidisciplinary research and expertise on the social, ethical and legal policies underpinning genomic research and medical research in general.
Our centre was a pioneer in addressing the issue of genetic discrimination, bringing it to the attention of the Law Reform Commission of Canada in 1991, 23 years ago. We have done some of the only international comparative reviews. When we heard about the discussion of the various laws in other countries, some of these analyses are the product of the centre as well.
In Canada, there is a lack of strong evidence supporting the existence of discriminatory practices based on genetic information outside of the context of Huntington disease. I am saying this because I did conduct the only published systematic review of all the reported genetic events presented in the literature. So the only area where there was strong evidence of discrimination was concerning Huntington disease, and there was some evidence also in the case of hereditary breast cancer.
Despite lack of strong empirical evidence that there is genetic discrimination in general, there is some concern in the population — and we recognize that — among patient groups, professional associations and the media, as well. We are sensitive to these concerns, but we would like to reiterate that in most instances the problem of genetic discrimination has more to do with concerns over possible risk than about actual documented cases of genetic discrimination. When there are areas or specific diseases that are really affected by genetic discrimination, maybe they would be better protected through administrative measures, rather than through broad federal legislation.
We have three main recommendations to make if this bill should move on. The first is that we strongly the adoption of a prohibition on genetic testing of individuals as a condition for accessing goods and services such as insurance. That's common sense. Imposing genetic testing on individuals goes against fundamental principles of Canadian society, such as respect for human dignity and individual autonomy. The insurance industry also agrees with this. Therefore, the proposed legislation would effectively strengthen an already existing policy beyond industry self-policing, thereby providing a greater degree of accountability and helping to appease popular anxiety on the matter.
Our second recommendation is that we believe that the prohibition on the disclosure of genetic test results should be confined to research genetic test results. Why do we think that? First of all, genetic test results obtained in the context of health research — and I make a distinction between research and clinical care — often do not meet the threshold of analytical validity, clinical validity and clinical utility. Their use also generates unforeseen legal and ethical issues. In addition, genetic research results are by their very nature difficult to interpret and can often be contradicted by later studies. We note that the latest code of conduct of the insurance industry, the one that was presented to this committee earlier on, from 2014, agrees with this. The code states that the results should not be communicated to the insurer if the doctor hasn't had access to the result as well, and if these are not clinical results. Again, it's a matter of reinforcing something that's already agreed upon by the insurance industry.
Why do we think we should stop at research and not go to the case of clinical genetic tests? First, there is this lack of evidence issue. Also, given the lack of evidence, we don't think it's necessarily the best solution, and there is a big challenge of coming up with a legal instrument. We were talking about the fact that law was running behind science, and I totally agree with that. That's one of the problems of making a bill like this one. I can tell you, as an example, that the definition of ''genetic test'' proposed by the bill is already likely not to capture what we call epigenetic and epigenomic data. Epigenetic data is basically how genes can be turned on and off in the organism, and it affects your chances of developing disease and the way you react to different medications. Right now, this is where a lot of genetic research is going — to the epigenome. Likely, this law, as it's currently framed, wouldn't protect people from discrimination based on epigenetic data. An instrument that would be more flexible and easier to change in the future might be better suited to protecting people than this sort of law.
We also think that genetic information should not be presented to Canadian citizens in an overly negative light, as something that leads to stigmatization and that is more sensitive than other types of data and would need exceptional protection.
As a final note, we would also like to point out that the impact of the bill as it currently stands would be minimal right now for Canadian citizens. It's not going to protect a lot of people. We have pointed out the constitutional limitations, and they are very serious limitations. It should be remembered that areas where cases of genetic discrimination are most likely to manifest themselves are situated within provincial fields of competence, such as private insurance and employment outside of the government sector.
We haven't talked about genetic discrimination in adoption. There are other fields where it can manifest itself and they would be beyond the reach of the bill. The only positive impact that the bill might have is that it could generate a synergistic effect that could facilitate the adoption of similar, complementary legislation by provincial policymakers to better protect citizens.
I agree that there is an issue. I'm just not certain that the current bill, as it is presently formulated, is the best solution to address it.
Kathy Hibbs, Chief Legal & Regulatory Officer, 23andMe, Inc.: Hello. I'm Kathy Hibbs, the Chief Legal & Regulatory Officer for 23andMe, a leading personal genetic service provider. 23andMe strives to provide people with access to understanding the benefits and the information from the human genome. I want to thank the Senate committee for inviting me today to speak about the important issue of genetic privacy. As we provide people with the service linking them to their genetic information, we recognize the sensitivity of this data.
23andMe recently introduced an improved version of our personal genome service for Canada in September of this year. That service, which is based on a saliva collection kit, is used to take DNA samples from individuals, and we provide those individuals with over 100 reports of genetic-related information. The health reports that are included focus on individual genetic markers with well-established, relevant associations that can be incorporated into an individual's health care plan, under the guidance of appropriate professionals. People also use genetic information to learn about their genetic ancestry, traits such as lactose intolerance or male pattern baldness, whether they're at risk of carrying on a condition through carrier status, and how they might respond to medications and other genetic factors that can be managed.
However, genetic science is at a very early stage. 23andMe is the world's largest online platform for genetic research, helping to accelerate the pace of those discoveries and advancing the understanding of human health. For those of our customers who consent to and participate in research, we have contributed to over 230 studies that are providing useful results. Our Parkinson's research identified two new genetic mutations associated with the disease within 18 months of being launched. To date, more than 25,000 Canadians have used our service, 20,000 of those prior to the launch of our service in Canada in September. Approximately 80 per cent of those Canadians have participated in research.
We do believe that genetic information should be protected. It's important for people to have access to their genetic information, and to do so and to harness of power of that information they must feel that it is protected.
We know from our studies that when presented with genetic information, many people have changed their behaviours positively to improve and prevent disease and to improve their overall health. In addition to the health information people receive, people learn about their family relationships, and we believe that in order to fully be able to participate in the genetic revolution, they have to feel comfortable that their information is protected.
We have been long-time supporters of legislative efforts to prevent genetic discrimination and safeguard genetic privacy. In the U.S., we were active in the development of the Genetic Information Nondiscrimination Act, or GINA, which was enacted in 2008 and is similar to Bill S-201. Prior to the enactment of GINA, discrimination by employers and health insurance companies was a concern for people interested in learning more about their genetic makeup. In addition to supporting the U.S. federal non-discrimination legislation, we have also supported the California Genetic Information Nondiscrimination Act, which was enacted in 2011 and, as Ms. Heim-Myers has noted today, provides substantially greater protection than is provided at the federal level.
23andMe supports Bill S-201 and its underlying principles of preventing genetic discrimination in the Canadian insurance and employment context. We sent a letter to this committee with regard to our support and we hope to see the bill passed.
I welcome the opportunity to answer any questions you might have.
The Chair: We will go to the sponsor of the bill, Senator Cowan.
Senator Cowan: Thank you for your presentation. I had a couple of questions for Mr. Joly.
You mentioned your preference for a voluntary code rather than a legislative intervention. But is it not a fact that in countries like Germany and Finland, where they went first with the voluntary code of conduct, they have moved away from that, having had the experience, and have now passed legislation in place of voluntary codes? Isn't that a fact?
Mr. Joly: If I may clarify, I'm not for a voluntary code. I'm for a flexible solution. There are solutions, such as a moratorium like the one that existed in the United Kingdom, where both the government and the insurance industry have agreed upon a code of practice. I find this is the best compromise because you have a model with a flexible solution, something that can be changed quickly, revised over the year and updated. That would be the best model.
I agree with some of the issues that previous speakers raised regarding a voluntary code of practice. It's very nice in theory. Does it really work? It can be observed for a while, but I'm not certain it's the best solution.
Senator Cowan: In December 2012, you wrote in The Globe and Mail:
In Canada, genetic discrimination is closer to myth than reality.
You went on to say:
. . . data convincingly demonstrating its systemic existence have been found only in the context of Huntington's disease, a rare condition.
I don't know whether you have changed your views since 2012, and I would invite Dr. Graham and Ms. Gibbons to comment because they are on the front lines in this business.
Dr. Graham: One of the previous speakers made the point that the problem exists, and it exists every single day in my clinic. It's a discussion I have two, three or four times a day with patients. The reason the evidence is anecdotal and you're hearing from so many people today that it is a problem and not published in any journals is precisely because patients are not overt about that problem outside the context of their therapeutic relationship with their doctor or genetic counsellor.
Mr. Joly: I agree there are probably a lot of cases that go unreported and I'm certainly not suggesting the contrary. However, based on the way that a lot of people are reporting cases, I can say that you have to make a distinction. For example, in many cases insurers will actually ask for the information so people will say they have been discriminated against because somebody asked them for the information. But in many of those cases, nothing happens. You provide the information and still have access to insurance.
There are other cases, moving on to the next stage, where people say, ''I have been discriminated against, refused insurance.'' They investigate those cases. Again, a large proportion of those are people that had pre-existing conditions. Yes, they had a genetic mutation, but they also had the disease. So then it's another question that you're asking.
It's very difficult, and that's why it's so hard to legislate on this question. What are we trying to prevent? Are we trying to prevent discrimination based on genetic predisposition, discrimination based on genetic disease? If we are, why genetic disease and not discrimination based on health information? Why should we make a distinction between those cases? That's where I find it's very difficult to draw the line, and my study was only about the cases that were reported. I do agree; there are certainly additional unreported cases.
Ms. Gibbons: When we polled our membership, we got feedback from people with a variety of genetic conditions, not just Huntington's, and we expected that would be the primary one. Even treating all people with the Huntington's mutation the same is unfair because it is caused by an expansion of the DNA sequence within the gene, and the size of the expansion can predict to some degree the age of onset.
Even to say, ''Okay, in Huntington's, everyone who tests positive is excluded'' is unfair and you have to look. If you're going to look at genetic test results, you have to know what you're looking for and look at it fairly. We've shown cases of the hemochromatosis where people didn't have a pre-existing disease, but they were discriminated against because of their test result. The issue is the sampling.
I know the amount of work that Ms. Bombard went through to try and poll the Huntington's group, trying to get hemochromatosis, the heart condition. Getting all of them for a good sample size is difficult and the fear outweighs the actual cases, but the fear is also for what could happen in the future. We can't promise that things won't change in the future, but we have no guarantees and the Canadian public would like to see some kind of protection so that we don't have this fear.
Senator Frum: Mr. Joly, can you elaborate more on the U.K. model? Constitutional problems with the bill are clear, but the problem is also extremely clear. In terms of trying to find a proper federal solution to this problem, can you explain what the moratorium is and how that works?
Mr. Joly: The moratorium is a binding agreement between the Government of the United Kingdom and the insurance industry of the United Kingdom. It's being revised every five years, so it's basically working for five years and they review the terms.
It has also been made very clear to the insurance industry from the start of this moratorium that if there were issues — and they are documenting the efficiency of this moratorium quite well — the government would step in and adopt legislation. So it's definitely an instrument that has teeth and can be enforced on the insurance industry.
What's very interesting is that it's much more detailed in what it does and doesn't do, and what it seeks to cover. For example, there are limits depending on the type and amount of insurance that you want to have, the type of disease that you're targeting with this moratorium. It's a much more flexible solution to address the issue, and I think this is what's needed with something that evolves so quickly.
As was pointed out by Kathy, we're only at the beginning of the genomic revolution, and it's very difficult. We were talking about evidence. In the case of personalized medicine and complex conditions, there is absolutely no evidence of what's happening with genetic information and if there are any types of discrimination at all, so we're early on. It's also nice to know that we can adopt something right now, but will be able to review and change it later on if it doesn't work well.
Senator Frum: You made the point about distinguishing. If you want to prove a case of genetic discrimination, it's hard when there are pre-existing conditions. There are can be great points of difference and it becomes a difficult case to prove why you were turned down for this reason versus that reason.
Mr. Joly: Absolutely. There is no transparency right now. The insurance industry is very nebulous in how it arrives. We know it's based on actuarial tables and evidence, but how the insurance industry arrives at a particular result is almost impossible to tell.
A lot of countries have adopted a lot of laws. That's absolutely certain. Are those laws effective? We don't know yet. Are they addressing the problem? We don't know yet. One of the reasons is that even if you have a law, insurers can always say they're refusing you for this or that. They simply can wait before they respond to your inquiry for an insurance contract until you get tired of waiting and move on to another insurer. There are other ways for them to get around this bill.
Not everyone has access to a lawyer and is willing to go to court to have their right enforced. We have to think about all these things when we try to find the best solution to address an issue that I believe exists and should be addressed.
Senator Eaton: Dr. Graham and Mr. Joly, using genetic information with health costs soaring, do we have any data or are we beginning to collect data on — if you knew your genetic makeup and what you might be prone to, it might save the system if you were to take preventive measures or use preventive medicine. Has any thought been given to that?
Mr. Joly: This is where we are research-wise. There are lots of research funding and research initiatives right now because we're at the transitional stage of most genetic research and of personalized medicine. Right now we're coming up with models demonstrating that it would be cost efficient to proceed with the new genomic medicine.
One issue with that is it's not because you have the power to detect your future chance of developing a disease that you're actually going to take that opportunity. Some people might take that opportunity while some may not. Again, some people who might have taken the opportunity might decide they won't do it because they're afraid of the potential risk of genetic discrimination. That's true and gets back to our issue.
Dr. Graham: I don't disagree. It's important to point out that the genome technologies we're discussing are already saving the health care system an enormous amount of money because they are able to diagnosis rare genetic diseases where before we would have spent hundreds of thousands of dollars trying to find that diagnosis with our more conventional means.
Senator Eaton: What kind of psychological impact does it have on somebody? If I go to my family doctor and he draws up my genetic profile and says that I'm going to be prone to Alzheimer's or this or that, is that helpful? How much knowledge is too much knowledge?
Ms. Gibbons: I will put in a plug for genetic counsellors. The key role we play is in helping patients understand the implications of their genetic test results and tease out the psychological aspects: Are you ready to get the results? How will this be beneficial to you? That is a key component.
There is concern that some people may try to get anonymous testing so their insurance company doesn't find out about it. By doing that, they're circumventing the usual process and not having access to genetic counselling service to help them deal with preparing for the results and interpreting and dealing with positive test results.
Senator Eaton: Should we all be genetically tested?
Ms. Gibbons: Right now, through some genetic services, it is possible to get genetic testing without there being anything in your family history. If you do 23andMe, it is possible to get some data about modified health risks from that. My concern is that these could be useful to know if you have a higher risk for diabetes because there may be some things you can do for it. However, because the scientific evidence is not as strong yet, as there's still a lot to learn in that area, you wouldn't want people to discriminate based on that information. You could send that same blood sample to two different companies and get different risk calculations. There's a question about the validity of some of the tests. What's to stop insurance companies or employers asking for that in advance, even though the scientific validity isn't there yet?
Ms. Hibbs: If I might address that, 23andMe does not provide a risk calculator with regard to the results. The modified product that was launched in September includes a much smaller subset of health risks and identifies only the gene that's associated with the health risk; so it doesn't provide any risk calculator. Genetic counselling is offered to consumers as part of the service. They have to elect to do that, but it is available to them.
As to the point of what studies have been done with regard to the psychological impact of testing, I'm not aware of studies in Canada, but several researchers in the U.S., including Professor Robert Green at Harvard and Professor Uta Francke at Stanford, have looked at the psychological impact of the genetic information on patients. I would be happy to share copies of those papers with committee members or anyone else who might be interested.
Ms. Gibbons: I have a 23andMe test report with the health risk assessment.
Ms. Hibbs: It's prior to September, so you have an older one.
Senator Hubley: I'll follow up on Senator Eaton's question, to some extent.
Ms. Rutberg and Ms. Gibbons, you're relating some very complex scientific information to your patients that perhaps the average patient would not be able to understand. If you're trying to relate the most up-to-date information, what is your communication between the scientists working on the situation, you getting that information and how it goes forward?
Julie Rutberg, Genetic Counsellor and Research Coordinator, University of Ottawa Heart Institute, Canadian Association of Genetic Counsellors: We work as a team with the health care professionals. We act as an intermediary between the laboratory scientists and the patient trying to explain the information. We're often on the front lines with people asking us, ''Do I want to have this test? What are the pros and cons?'' There may be difficult decisions to be made.
We have to update ourselves constantly about that information, but it is common in our field that patients have the fear. We often state to the patient that fear is certainly higher than the actual number of cases of known discrimination. That fear can be enough to make someone cautious or actually turn down a genetic test. They're making an informed decision, I believe, for the most part.
Senator Hubley: Does the patient decide against genetic testing on a regular basis or is it something that has come out from the counselling? Perhaps you've been able to highlight some of the different issues that may be involved for that particular patient at that time? How often would a person decide against the testing after counselling?
Ms. Rutberg: As Dr. Graham stated, it is on a very regular basis, especially for young people who are just starting their careers and might not have life insurance. They're not sure whether they want this information for their own health risk management in the future. They are concerned about the risk of insurance denials in the future. I tell people to get their insurance when they're young and healthy and then come back to see me after they have insurance in place so we can discuss the other aspects of getting the genetic information.
Dr. Graham: It's a daily occurrence. In my clinic this morning I saw three patients for one hour each. With two of the three patients, I had the insurance discussion. For the other one, it didn't apply. One of the two chose not to have genetic testing because of their fear that their four-year-old son would never be able to get insurance as an adult.
The Chair: Mr. Joly, if I'm not mistaken, the literature review that you published in 2013 was on genetic discrimination and life insurance. Was that your paper?
Mr. Joly: That's correct.
The Chair: You did a systemic review of the evidence. The abstract at the top of the article summarized your conclusion. It says:
Important methodological limitations and inconsistencies among the studies considered make it extremely difficult, at the moment, to justify policy action taken on the basis of evidence alone.
That's what you wrote.
I notice that several countries included in your literature review have already adopted laws prohibiting insurers' access to genetic information, so it struck me as strange because I would like to think it's unlikely to find much evidence of genetic discrimination amongst insurers in countries where they are prohibited from accessing genetic information. Can you comment on that, please?
Mr. Joly: Again, there is fear in the actual cases of discrimination. I think what happens is that a lot of people in some countries — for example, we talked about GINA in the United States. Even though I would like to believe it's a great solution, the fact of the matter is it doesn't apply to life insurance, and very few U.S. states have adopted laws after that to address life insurance. There are a few, but they are at a minimum.
People can still be discriminated against, and a lot of people are not even aware that the protection exists or that they can access it. Therefore, the fact that there was protection or not didn't really influence the result of the studies in the different countries.
If you want to know where in the world people are actually more worried about genetic discrimination and access to insurance, it's Europe. Europe is the part of the world where most of the legislation was enacted. People are still worried.
The Chair: What has your experience been? Why are they worried?
Mr. Joly: Because I think there are still enough loopholes in the existing protection that people want an even greater degree of protection or don't feel that it's enough.
The Chair: One of the interesting things you said was that insurance companies, in places where there is legislation, if I understood you correctly, they will not say ''no'' but they will get back to you and it will take forever. That was interesting.
Mr. Joly: Yes. An Australian study really looked at some of these things and actually studied the way the insurance market was using genetic results and if they were applying the policies that were in place. They found these sorts of loopholes where insurers would try to circumvent policies one way or another. It didn't happen on a large scale, but it did happen in a few cases, absolutely. There are ways to do that, yes.
The Chair: I'd like to ask a question of the rest of the panellists. If this bill is not passed and the status quo is maintained, what will be the impact on your clients and generally on Canadians?
Ms. Hibbs: I do think fewer people in Canada will access our service out of concern that the information could be misused.
Ms. Gibbons: In genetic counselling, I think we will continue to see people decline getting genetic testing for fear of genetic discrimination.
Ms. Rutberg: We will continue to hear stories where insurance companies have misinterpreted the information and wrongly discriminated, which makes us very frustrated that someone who doesn't have a medical background is making such a decision that could have an important financial toll on a family or individual.
The Chair: Dr. Graham, do you have any comments?
Dr. Graham: Those are my concerns as well. I agree with all three comments.
My other concern is that the absence of a genetic test because of fear of insurance discrimination will prevent some individuals from going forward with medical surveillance opportunities that could reduce the morbidity of their genetic disease.
The Chair: I want to thank all of you. I also want to apologize for keeping you waiting. Thank you for your presentations.
When you depart and, upon reflection, you think there is something we did not cover, may I please again impose on you and ask you to provide us that information in writing? We are still studying the bill, and we look forward to working with you in the future as well. Thank you very much.
(The committee adjourned.)