HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Wednesday, November 7, 2001

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[English]

The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good afternoon, ladies and gentlemen.

It's my pleasure to declare this meeting open and to introduce to you our three witnesses, Dr. Scorsone from the Royal Commission on Reproductive and Genetic Technologies; Ms. Jocelyn Downie, assistant professor in the Health Law Institute of Dalhousie University; and Bartha Maria Knoppers, adjunct professor in the Faculty of Law at the University of Montreal.

Welcome here, ladies. I think we'll begin with Suzanne Scorsone.

Dr. Suzanne Scorsone (Royal Commission on Reproductive and Genetic Technologies (1989-1993)): I want to open my remarks by telling you how very glad I am that you've reached the point of this discussion—again. I think everyone is looking forward very much to legislation being brought in and being ultimately passed. I don't have to tell you the grief there was when Bill C-47 went down, when the writ dropped. Of course, there's been a private member's bill that was very constructive since then, but now it looks as though we're moving forward toward actual legislation. I'm very happy about that.

I would start by saying that I think most of the people who are involved in the debate are very conscientious people who come at it from different points of view, different experiences, different expertise, different positions within the population. There are, of course, some unscrupulous operators out there, and protections have to be in train for that, but for the most part, I think people are differing in good faith. So if I seem to be critical of some viewpoints, just know that I'm not doubting anyone's goodness of heart.

There are many aspects of the proposals that I warmly welcome. To allude immediately to only a few, the concern for consent, the concern for confidentiality and privacy, these things are essential to the dignity of those undergoing or born from assisted reproductive technologies.

The prohibitions of human cloning and of genetic manipulation that could be passed on to an individual's descendants are excellent, although they could do with some honing if the draft is brought to first reading. Terms such as cloning are not specifically defined, and the differences in use between the cloning of somatic cells and embryo-derived cells are of great ethical and practical importance. The dehumanization, the huge risks to the individuals involved, and in the case of cloning, the known track record of malformations and death in animals make these prohibitions entirely reasoned, appropriate, and ethical.

I'm very glad to see the provisions for responding to the right of the offspring of gamete donation to know the identity of and health information related to his or her progenitor, if the person who is the offspring chooses to seek it. This is directly parallel to the right of adoptees. If anything, the ability for society to respond to this right in all cases is even clearer with gamete donations, since adoption is often a resolution of a preexisting and difficult or tragic situation, whereas gamete donors and recipients are making a deliberate decision to get into this situation. So I think you could require that consent before donation is accepted.

This set of proposals also seeks to address certain issues, such as stem cells and cloning, that were being talked about by experts at the time the commission was meeting, but have now become dinner table conversation for the general public. I think it's important, though, along with the very serious attention given to that, not to lose sight of all the other areas of assisted reproductive technologies that have tended to get lost in the focus on the one set of issues, because the vast majority of what happens to people on a day-to-day basis in fertility clinics is, in fact, ovulation stimulation, in vitro fertilization, gamete intrafallopian transfer, various sorts of fertility technologies and treatments. We must not lose sight of the supervision and the standards of care there.

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Also, I note that in the proposals a great deal is left to the regulations to determine certain things. Provisions with respect to stem cells, for example, are in the legislation, but many other things are left to what is presumably under the licensing provisions, which make reference to regulations, and by whom is not clear in the legislation. Presumably, this would mean the much discussed regulatory agency or body, or it could be done by the Ministry of Health itself, but it's not yet clear what that entity will be. So many things will not be resolved by the passing of this legislation.

Moreover, there is a time problem here. We've been at this for a long time. The royal commission was started 12 years ago. Discussion of this certainly took place before that. If this legislation were passed tomorrow, there would still have to be the setting up of whatever this regulatory regime would be, and then those in place there would have to decide on what the regulations were to be. So you've still got a further time lag before anything actually hits the road. I would urge upon you the importance of making decisions in a timely way and making it happen before another writ drops, we've got another mandate, and we're off down the pike for another five years.

To get to specific issues, this isn't a line by line commentary on the proposals, but hitting some highlights. Also, you will find in the text I have submitted much more detail on the points I'm going to raise now, because of the lack of time at this point.

As I mentioned, I'm very glad to see the prohibition on human cloning. There is a difficulty in terminological specifics in the proposal, since many people, including professionals, use the term cloning in significantly overlapping or unclear ways. It can be used to refer to Dolly the sheep, to splitting an embryo to make two or more embryos, it can be used for just the cultivation of somatic cells in culture, liver cells or something, where the term cloning is often used. So when these terms are conflated, it can muddy what you're talking about and make the unacceptable look as though it's in with the acceptable, and vice versa. Yet there is no definition in the legislation of cloning, and a definition could help you to define exactly what it is you're aiming at.

The provision prohibiting the creation of an in vitro embryo solely for the purposes of research is an exceedingly positive step. I would like to see you add “or for any non-reproductive purpose” or “for any purpose other than the creation of a human being” or some provision of that sort. For one thing, to be a little trivial, but not too trivial in these days of the proposal of the bizarre, somebody could decide to take embryos and make them part of some anti-aging cream, and say it wasn't research, so it was legal. On a more serious note, I have heard of pharmaceutical companies wanting to use embryos to test pharmaceutical products that have failed in animal trials. If this is the case, that's looking at the use of embryos in effect as industrial chemicals or, at best, as lab mice, and this is incompatible with human dignity at any stage of development.

The prohibition of the maintenance of an embryo beyond the 14th day does not protect all embryos who are human beings, but the full individual human genome. You and I were all embryos once. This is not about the abortion question. When an embryo is not physically inside a woman, there is no possible conflict between that embryo and the life situation of anyone else. There are many across the spectrum on the abortion question who see the embryo as a human reality and hold that to destroy it or utilize it as industrial raw material is damaging and dehumanizing, not only to that embryo, but to all of human society. Nor is it a matter of religion, since many people of differing religious traditions or none can agree on the necessity of such a legislative prohibition, whatever the overlap or distinctions in their lines of reasoning. In any case, it's a fundamental principle of ethics that the end does not justify the means. We must seek ethical means of achieving even the most desirable of ends. This section of the proposal, therefore, is better than the present void, but it is deeply incomplete and should be extended to include all human embryos.

I'm very glad to see the provision prohibiting the taking of gametes after a donor's death, unless a donor has consented in writing to that use. You'll find more on that in my text.

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Now I come to stem cells. There's been intense discussion in Canadian society on the subject of stem cells. I've mentioned the terminological confusion. Everyone wants to see effective treatments for those with serious disorders such as muscular dystrophy or Parkinson's disease. We're all agreed on that. We're all agreed that somatic stem cells present a promising line of research for treatment. The funds for research are limited. It would seem then, that as legislators, it would be reasonable for you to do everything possible to focus work on something on which all are agreed. This being a democracy, and it being inevitable that there will be differences of view on such questions as the inherent reality of human embryos, it is still possible to reach a workable program to do the good all parties want without generating division.

There are, moreover, serious risks associated with the use of embryonic stem cells, which proliferate with a capacity that is little understood and even less easily controlled. Cells proliferating at their own initiative are what we call cancer. One experiment with Parkinson's victims was closed down when some developed spasmodic, uncontrollable jerking movements of their jaws and limbs.

Sometimes people seem to talk about stem cells as though they are some kind of magic potion or healing gismo from Galaxy Five. They're going to prevent all aging, they're going to reverse all disorders. This is science fiction. Even if it were possible, this idea of treating all human beings on the face of the planet with things derived from embryos, can you imagine the number of embryos that would be required for that? That's not a dream, that's a sci-fi, cannibalistic nightmare.

Certainly, seeking to alleviate discomfort or disease is a good thing. This is the purpose of medicine, which is one wonderful use of our gift of intelligence. On the other hand, all creatures are born, flourish, grow old, and die. Dying is all right. We don't have to be able to reverse all aging. The fear of death, the fear of aging, should not lead us to make objects of others, to destroy some human beings in chasing, on the part of others, some illusion of unending earthly life.

I would argue that the promise that exists with either sort of stem cells can be realized with somatic stem cells, on the ethical acceptability of which we're all agreed. If we need bone cells, get bone cells, or bone cells we get from fat cells. If we need to experiment on them, use what is actually and appropriately that form of tissue. If we need to transplant something into someone, let us take normal cells from that person's own body, so that the problem of rejection, which is a much touted reason for using embryos, will be alleviated that way. There are other ways of doing things, so we need not do the ethically dubious.

The prohibition of commercial surrogacy is exceedingly welcome in itself. Such exploitation of women and their children had not come to Canada when the royal commission reported. It has now. There is, however, a contradiction, no doubt unintended, in the proposals for legislation. As worded, the legislation appears to give back with one hand what it took away with the other. Subclauses 4(2) and (3), which prohibit payment or accepting payment for arranging surrogate services, are vitiated by 4(4), which says that they do not apply:

in respect of the provision of legal services, medical services or psychological counselling services.

Last time I checked, most of the people arranging commercial surrogacy were doctors, lawyers, and psychologists. So in effect, what this does is give a get-home-free card to anyone who wants to cultivate the industry. As I read the legislative provision at this point, it's not just providing for legal advice to someone doing this on an altruistic level. It would allow for commercial use and the development as an industry.

You may also want to clarify the wording that has to do with expenses, both with respect to surrogacy and gamete donation, because expenses is a very vague term. Expenses that relate to a pregnancy could include food and housing, which are usually covered by wages and profits in most people's lives. So in effect, someone could still be doing this for an incentive, because the person would be supported for a year, before the pregnancy, during the pregnancy, and perhaps after the pregnancy. When we were on the royal commission, there was testimony by one person who had been a surrogate—in public sessions, so I'm not telling tales out of school here—to the effect that there could be mortgage payments, there could be various things, which would be payments in kind. So specifying expenses and saying explicitly that they should be such as not to constitute an inducement or an incentive would be important.

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How long have I got left?

The Chair: Most people's papers are about four pages long. This is rather long.

Dr. Suzanne Scorsone: Well, I was told I could wander wherever, because I'm not on a single theme. We on the commission wandered all over the map—we had to, that was our job.

Then would you like me to skip to the regulatory agency at this point?

The Chair: That would be helpful.

Dr. Suzanne Scorsone: And you can get what I would say about all the other things, animal-human hybrids, commercialization. By the way, I'm very shocked that no provision is there for the prohibition of animal-human hybrids, quite surprised. If there was one thing we heard over and over again, it was that people didn't want that.

Commercialization of human reproduction is also a problem that you have tried to address, but there are some things that would strengthen this.

With sanctions, I would fully agree that they should be criminal in nature. I don't see that a physician or a scientist is immune to the criminal sanction that a poor man who does damage to someone in another way would be liable to. I don't think anyone, however exalted their expertise, is so knowledgeable that no one else can evaluate or judge what they do.

To come, then, to the regulatory body, to me, what is important is that things get done rather than how they get done, but a regulatory body would indeed be an effective way of doing that, and so I certainly would support it. I do think, however, that great care should be given to how it is structured.

First, the people on it should be chosen by the minister, with advice, people not only having the requisite forms of expertise and perspective, but with a proven track record of being able to work well or play well with others—you know, the simple stuff that's on the report card when the kid comes home from kindergarten: plays well with others. People have to be able to deal with the concerns of other people and reach workable compromises or innovative solutions that will deal with the legitimate concerns of all parties.

I think it's important that people not be on this as ex officio representatives of whatever their stakeholder group may be. They should not be speaking for professional organizations or advocacy groups ex officio, because then they may be less inclined to work together with others on innovative, cooperative solutions, and may feel rather that their obligation is to represent the interests of their group or the formal decisions of their group.

My suggestion would be that it be internal to the Ministry of Health. If something were arm's-length and out there, my fear would be that it could be dominated by one or more stakeholder groups or their particular networks. And if there came to be a dysfunction in the way the group was working, it would be far more difficult to rectify that. I think the group should be responsive to Parliament, because Parliament is the representative of the people of Canada. If something is an arm's-length group, it is very difficult for the representatives of Canadians to modulate and effect the policy that is being implemented by such a group.

With the creation of a registry of information, I'm all for what's there in the proposals. I would like to see, however, it be extended to include—and this may require legislative mandate and incorporation into the legislation, because this is a kind of registry that has never been done before—long-term follow-up and the accessibility, in a way that maintains confidentiality, of people's medical records for years. With the DES controversy, whether it be reproductive technologies, genetic technologies, we aren't going to know for 20 years, 30 years, 40 years of following people what the results of these things are going to be.

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On the other hand, the reality of fertility clinics is that they get you pregnant, they hand you over to the obstetrician, the obstetrician gets you unpregnant, and the baby is handed on to the paediatrician, while you, after a brief post-partum period, are handed back to your family physician. At any point in the subsequent life of both, you may be handed off to various specialists to deal with various disorders that people may or not link back to the fact that there was massive hormone treatment of you as a pregnant woman or a pre-pregnant woman, you as a child of those technologies, you as child with a genetic manipulation, or whatever it might be.

So unless there is a modality of tracking all the medical records of such people, we are simply never going to know what the results are. This can be both positive and negative, in that it can lead people to be more fearful than they would need to be, because something may be perfectly workable and the data would show that, or there may be dangers that we otherwise wouldn't see.

Furthermore, because there is follow-up of drug treatment, there is at least some handle on the safety and effectiveness of drugs, although that is limited. However, people do, whether it's fair or not, question whether trials that are undertaken by pharmaceutical companies and other people with a stake in the project are going to give the whole story. A registry that was completely unbiased and run by government would take care of that. It would make things transparent for everybody, and I think this would be to the benefit of everyone in all the professions, to patients, and to the offspring.

In conclusion, I'd just like to say thank you for having us here. Your role is crucial, and I look very much forward to seeing what you ultimately conclude it is right to do.

The Chair: Thank you very much, Mrs. Scorsone. I'm sorry you didn't have enough time for everything, but you will be questioned, and perhaps you can get some of your other ideas out as answers to the questions.

We'll move now to Ms. Downie, please.

Professor Jocelyn Downie (Director, Health Law Institute, and Assistant Professor, Dalhousie University): Good afternoon, and thank you for the opportunity to speak with you today. I apologize in advance that I must leave a little bit early, before the end of the session, due to the cutbacks in the airline industry, with which you'll all be far too familiar. I can't get back to Halifax tonight unless I do, and I have a long standing commitment tomorrow morning in Nova Scotia.

Today what I want to talk about are four issues arising from a review of the proposed legislation, a bit about minors, bodily integrity, the use of reproductive materials or health information for research purposes, and the nature of the national oversight body.

First, with minors, there is inappropriate reliance on the age of 18 in several parts of the draft legislation. For example, in subclause 7(2) you find a restriction on the use of sperm or ova from those under 18, and subclause 7(1) leaves open to the regulations when sperm or ova can be preserved from those under 18. But reliance on the age of 18 as a uniform demarcation line is inappropriate. The age of majority varies across the country, 18 or 19 in different provinces and territories. The age of consent also varies across the country, where it is established through legislation or through common law adoption of what's known as the mature minor role. So the final legislation, I would argue, should focus on the concept of competency, not age, and thereby reflect contemporary understandings in both law and ethics of the ability and the right of some of those under the age of majority to make health care decisions.

With bodily integrity, broad powers for inspectors are set out in subclause 24(2). For example, as it is currently written, inspectors could require a patient who happens to be in a clinic at the time of the inspection to produce a sample of human reproductive material. This could result in serious violations of bodily integrity of such patients, without the possibility of justification. This part should be narrowed to reflect the core value of bodily integrity that is at the heart of our legal and social system.

As well, subclause 29(2) should be narrowed, because this section allows reproductive material seized from a clinic to be disposed of in the event that the clinic director is convicted under this act. There's no compelling justification for this sweeping power. For example, why should clients of the clinic lose their reproductive material because of an offence committed by the clinic director, especial if they are “innocent bystanders”? This section should be narrowed to reflect the right to control one's own reproductive materials that is so clearly articulated in other sections of the legislation.

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The third issue is the use of reproductive materials or health information for research purposes. First, this legislation prohibits the use of embryos for research without the consent of the donors, but does not prohibit the use of other human reproductive material, such as sperm, ova, other human cells, human genes, for such purposes without the consent of the donor. No justification is provided for requiring consent for research on embryos, but not other human reproductive materials. In my view, no person should be permitted to use any reproductive materials for research purposes without the consent of the donor. Thus, I think, if you modify subclause 6(1) to include reference to the later subclause 8(2) as well as 8(1), you will capture that little gap, which I think is probably unintentional in the legislation.

The second issue here is that subclauses 19(4) and 21(6) of the draft legislation permit the licensee or the minister to disclose health reporting information, apart from identifying information, without the written consent of the person. These two provisions respect privacy, as the disclosure of information that would identify or permit the identification of the person is not permitted without the consent of the person identified. However, while they respect privacy, they do not promote respect for autonomy, because some health information can be disclosed to third parties without the individual's consent. Respect for autonomy requires that individuals retain control over the use of their health information, even non-identifying health information.

While I appreciate the benefit of researchers having access to large pools of information, this benefit should not be secured at the expense of the individual's right to control their personal health information. At the very least, a balance between these competing values should be sought. For example, the legislation could be amended so that individuals are provided with the opportunity to refuse permission at the time of the collection of the information for any subsequent use of their information for research purposes.

My final comments concern the establishment of a national oversight body. Here I want to address two distinct questions. First, why have an oversight body? And second, what should be the defining characteristics of such a body, if you decide to have one?

So why have one? The reasons for introducing an oversight body or mechanism are many and varied. International experience and the academic literature suggest at least the following benefits. First, there is transparency. Establishing a clear set of standards about ethics in science with respect to assisted human reproductive activities ensures that practitioners and researchers can know what is expected of them in relation to these activities. Similarly, establishing a clear set of standards ensures that recipients of such activities and the general public can be assured that only ethically acceptable activities are permitted and that they are conducted in a scientifically sound and ethically acceptable manner.

The second reason is enforcement. The stakes are quite simply too high on all sides to leave the meeting of standards to self-regulation. This is a system that already has failed. There must be enforcement of minimum standards through licensing, monitoring, and other such mechanisms.

The third reason is accountability. Without an oversight body setting policy and being accountable for the policy it sets, the public have few means of holding anyone accountable for the consequences of actions that are not negligently performed. Yet this is an area within which tremendous harm can be caused even by non-negligent conduct. There needs to be a body which is accountable for decisions about what activities to permit and what standards to hold the performance of these activities to.

The fourth reason for having an oversight body is public trust. If the public have confidence that assisted human reproductive activities are being regulated by an oversight body, they may develop greater trust in the enterprise, and with greater trust may come greater support.

So if you decide you're going to have one, the next question you have to answer is, what should be the defining characteristics of the oversight body? In the copy of the speaking notes I have left for translation and distribution I list a number of defining characteristics. I'm only going to talk about four of them today.

First, it should be national. The establishment of a single set of standards for assisted human reproductive activities across Canada ensures that people who avail themselves of the technologies receive the same minimum protections, no matter where they happen to live.

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The second reason to have it be national is that there are currently insufficient numbers of people trained to deal with the scientific and ethical issues raised by the new technologies. The oversight body must have adequate expertise for dealing with complex and novel technologies, and there is simply inadequate, insufficient expertise in Canada to fill multiple oversight bodies in many different provinces and territories.

Third, assisted human reproductive activities have the potential to be transformative in a way that completely ignores provincial and territorial boundaries. For example, once you have entered the arena of manipulations that have the capacity to affect not only those who are subject to the manipulation, but also future generations, you've entered the arena of regulation at the highest possible level.

I would note here that it is around this element that the jurisdictional questions and challenges arise. Some would question the federal government's authority to introduce legislation in this arena. However, for reasons I don't have time to go into today, reasons that have been independently canvassed in the literature quite thoroughly, I'm convinced that the federal government does have the jurisdiction under the Constitution, most notably under the national concern branch of the peace, order, and good government power, as well as the criminal law power, to do as it has done by drafting this legislation, and indeed, proposes to do by implementing the system of regulation found in the legislation.

The second feature I think critical is that the body be independent. This body should be as structurally independent as possible, to prevent it becoming a tool of any particular interest group, whether that be government, industry, practitioners, recipients, or anybody else. It must, for practical reasons, be funded by the federal government, and therefore it cannot be completely at arms' length from government. However, there are a number of mechanisms to facilitate significant independence. The possibilities include crown corporations, agencies, boards, commissions, tribunals, special operating agencies. I don't propose to go into the nuances of these titles, but rather will suggest to you that you should first get very clear on the functions and features of this body, and then pick the forum that most readily ensures the realization of these functions and features. One of the most important features to ensure is structural independence.

This body must also be properly resourced, so that its independence is not financially compromised. It's important that its budget be independent of government departments and sufficient for the tasks it's charged with. It's also important that its staff be controlled by it. The independence of theoretically independent bodies has in the past been compromised by inadequate resources, thereby rendering the entity dependent on government or others for additional resources, and also by budgets being controlled by government. The independence of seemingly independent bodies has also been compromised by staff being employees of, for example, Health Canada. This puts them in a potential conflict of interest position, as the mandate of the independent body may well come into conflict with the interests of the employer.

Third, we want to look for members with appropriate expertise. I have little concern about the naming of members with expertise in most of the disciplines that should be represented on the oversight body, but I do have serious concerns about the naming of members with expertise in ethics. There's a pattern we have seen repeated numerous times in the naming of national bodies wherein individuals who have no expertise in ethics, indeed have no formal training in ethics at all, are considered to be the ethics experts on such bodies. For example, there is a pattern of treating health law experts as if they are ethics experts. Law and ethics are, indeed, related disciplines, but they are, nonetheless, very different disciplines.

Ethics is a discipline with a tradition as long as or longer than most other disciplines. It has established patterns of training, for instance, experts have completed doctoral studies, and established patterns of achievement, for example, publication in peer review journals and awards of peer reviewed grants. There is no good reason for the failure to name ethics experts to these bodies. I think those who seek to name ethics experts should familiarize themselves with the disciplinary criteria for expertise. Furthermore, those who are not ethics experts should not call themselves ethics experts or allow themselves to be called ethics experts by others, especially in an arena such as assisted reproductive technologies, where an ethical expertise is not the only area of expertise required, but is certainly a critical area of expertise. The national oversight body should have members who are truly ethics experts serving in the capacity of ethics experts.

The final point is with respect to therapy, as opposed to research. I want to suggest to you that the oversight of therapy should be separated from the oversight of research, in which I would include innovative practice, and that the oversight of research should be linked to a new governance structure for all health research in Canada. The draft legislation contemplates the creation of an oversight body regulating both therapy and research. While this is consistent with practice in other jurisdictions, most notably the United Kingdom, this is a mistake for at least two reasons.

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First, not all research involving human reproductive materials is for the purpose of advancing assisted human reproduction. The oversight body contemplated by this legislation could end up regulating research that uses human reproductive material, but is in no other way connected to human reproduction. The risk then is that the oversight body will have been constituted to deal with assisted human reproductive activities, and it will not have the expertise necessary to regulate research that is not connected to human reproduction beyond the source of the material.

A brief description of the experience in the U.K. should be illustrative here. Under the Human Fertilisation and Embryology Act of 1990, a statutory, regulatory body was created. The Human Fertilisation and Embryology Authority, the HFEA, was given the task of granting research licences. Schedule 2 of the act set out five conditions for embryo research, all having to do with diagnostic methods and reproduction. Embryo research to increase understanding about human disease and disorders and their cell-based treatments, for example, stem cell research, could not proceed under this legislation. In 2001 specific regulations were introduced to permit such research, and now the HFEA is regulating research that has nothing to do with infertility and reproduction. The range of issues captured within the HFEA's expanded mandate may soon exceed, if it hasn't already, the expertise of the membership.

A national body given oversight of assisted human reproduction therapy would clearly have on it scientists and clinicians who specialize in human reproduction, as well as infertile persons. Their orientation, knowledge, and skill sets will be well suited to establishing standards for, for instance, consent to in vitro fertilization. But their expertise and interests may be entirely inadequate for a consideration of the ethics of fetal tissue transplantation research in the treatment of Parkinson's Disease.

My point is that in order to meet the therapy oversight mandate, the expertise of the oversight body should be in relation to assisted human reproduction, and so the body should not be responsible for activities that require very different expertise, that is, research aimed at increasing knowledge about a range of serious diseases having nothing to do with reproduction.

This brings me to my second point. We desperately need a national oversight body for all research involving humans in Canada. Research involving human reproductive material, I would argue, should fall under the auspices of such a body, rather than the body contemplated in this draft legislation.

Currently, research involving humans, both humans and human reproductive material, is largely unregulated by government. There is no principled reason to pull out this one area of research for oversight by a national body and leave the rest unregulated. There are many equally contentious, equally risky kinds of research going on in Canada. Why pull research involving human reproductive material out and subject it to a national oversight? Why not leave it all unregulated or regulate it all?

The current governance of research can best be described as a haphazard patchwork, and the interests of Canadians are not being adequately protected and promoted in this area. I think we should not exacerbate the current patchwork by creating a distinct national oversight body with a mandate to regulate one small aspect of research involving humans, the assisted human reproductive research and research involving human reproductive materials. Rather, we should create a national oversight body with a mandate to regulate all research involving humans.

It should be noted here that, so I understand, Health Canada is leading an exploration of the issue of governance of research involving humans in Canada. If the government is even contemplating moving in the direction of some sort of national oversight body for research, then the right hand should talk to the left hand. Explicit discussions should be held as soon as possible on how the legislation on assisted human reproductive activities that you're talking about might fit with such a body, and vice versa.

Thus, in the end, I am recommending the establishment of a national oversight body for assisted human reproductive therapy and a separate national oversight body for all research involving humans in Canada.

Thanks. I'd be happy to take questions at the end.

The Chair: Thank you, Ms. Downie.

That was very helpful.

Now, Bartha Maria Knoppers.

[Translation]

Ms. Bartha Maria Knoppers (Adjunct Professor, Faculty of Law, University of Montreal): Good day. I would like to say that I am in complete agreement with the comments of my colleague on my right, Ms. Downie. So if there are points where there is some convergence, I will simply not repeat them.

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I prepared a PowerPoint presentation that is available in French and in English but I can't show it to you because of some technical problems.

I would also like to thank Elodie Petit. You can see Ms. Petit's name on the first page. She is here just in case you have very difficult questions. She did her master's on stem cells and is working on a doctorate on the same subject, but in a broader context.

Twenty-five years ago, when I was a student at McGill University, I did some work on artificial insemination. It was an area where there was not even a professional code in 1976. When I started my doctorate in 1978, I was told—it was on reproductive technologies—that I was working in science fiction. So here I am 25 years later, after the birth of Louise Brown, in 1978, and after the royal commission and all the laws passed all over the world, and that you can find on our web site, on which you have a small flier. I think there is no doubt that it is time for Canada to act.

I am glad, despite what seems to some slowness in terms of other countries. I am glad because I think this version of the project has been greatly improved compared to other bills previously presented.

You have before you a table of contents that I will not repeat. I would like, in the 20 minutes allotted to me, to make a presentation and have enough time to answer your questions afterwards.

Let's start with point 1: the coherence of ethical principles. I am surprised that nowhere in the preamble do we find an allusion, not to the issue of knowing when life starts or when we become a human being, but to the ethical principle of respect for human life. It is not in the preamble. I am surprised that it is not in the preamble, which will serve as a statement of underlying principles.

At the same time, I am a little disappointed that we use—and its the fashion, it happens everywhere in the world, not just in Canada—the term human dignity everywhere in the text. I will give you two examples. In the preamble, in the third “Whereas the Parliament of Canada”, it says that Parliament “believes that those benefits can be most effectively secured by taking appropriate measures for the protection and promotion of human, health, safety, dignity and rights in the use of such technologies”.

We are therefore putting human dignity on the same level as basic rights even though we know very well that human dignity is the source of those fundamental rights. It is human dignity that is inherent to a person, and it is because of that dignity that we have defined basic rights. That is what allows us to implement basic rights.

Therefore I would not align human dignity with health and safety and all the rights we have added over the centuries. I believe it merits its own section, and personally I would not put dignity in the other provisions, such as section 16(1) of the proposals for legislation, which talks about “human dignity or human rights”. The “or” surprises me. It should probably be “and”. But I would not put that in a text, even if other countries sometimes put the word dignity in the provisions of their criminal code. I would leave it in the preamble.

That is a personal opinion, but it is comes from a study on human dignity I did for the Law Reform Commission in 1990.

Therefore this trivialization bothers me. It is part of modern times, but I think it should remain a principle.

Let's move on to the definitions. I believe I have already mentioned that other people who have testified before you have said that the definition of “human reproductive material” is very very broad, and the same is true of the definition of “human gene”. If we put that all together, the scope and impact of theses provisions in the Criminal Code will affect everyone in Canada, even grade 8 students who study biology and play with cells or whatever, because we are talking about genes, sequences, etc. Sequences are everywhere. So we have to be very careful, in the definitions section, in defining human reproductive material.

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We do not know what is meant, in the definition of “human reproductive material”, by the words “a part of any of them”. I have never seen the word “part” in any act. What is it, part of an embryo? I think what was meant is "or any building block" because we are not talking about parts or pieces of an embryo. It's simply a question of definition. I don't know; maybe by using the words "a part of any of them" we wanted to cover embryo stem cells. But even then, an embryo stem cell is not part of an embryo; it is only a building block.

The second problem with the definitions is the French term “renseignement biologique”, which is translated in English as “health reporting information”. That is completely different. We may adopt the term “biological”, which doesn't make sense, because biological information is not the same as health information. Biological information, for example, may be information about paternity. That has nothing to do with health. Therefore all notions of paternity and maternity, which are biological information, can be covered by this definition. I would suggest that we use the terms “personal health information” in English and “renseignement personnel sur la santé” in French. I believe that is what was meant anyway.

The definition of “health reporting information” is very broad, so much so that everywhere in the other provisions where we talk about “identifying information”, everything is identifying under the definition. Does that mean that everything that is not mentioned is necessarily not identifying? What will be left that is not identifying? Because “biological information” gives us a definition that contains only “identifying information”.

I come now to a point that I believe that no one has raised with you. But it's one of my habits. The coherence of universally prohibited activities, the therapy... What we call therapy is in fact research. Since germ line therapy and research have not even started, it is nonsense to talk about therapy. Germ line therapy is seen everywhere in universal declarations, in the laws of all countries that have adopted some laws. But I think this bill allows research on embryos; the preimplantation genetic diagnosis is therefore not necessarily prohibited. I think that will depend on the future regulatory body. If the preimplantation genetic diagnostic is not explicitly prohibited—and I don't want it to be—we are still deliberately creating an embryo to see if the building blocks or genes of this embryo could lead to malformations, serious fatal illnesses, etc. If that is the case, we will not implant it.

Therefore we are making a choice, before implantation in the body of a woman, so that the child can, as far as possible—and there is never a guarantee—be born healthy and so that the next generation will not have the deleterious gene. What is the difference between that and germ line therapy? The goal? The end result? In the end, only the means are different.

That is one thing I would like to bring to your attention, not because I want to prohibit preimplantation genetic diagnosis, but because I find that we automatically refuse things like germ line therapy very quickly, without thinking that we are already allowing techniques that serve the same end result.

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As for the precision of the framework for controlled activities, Ms. Downie has already said that ova and sperm are not mentioned anywhere. Therefore we will have to add them to have some internal coherence.

We talk a lot about the embryo, but we can do as much research or therapy with gametes as with embryos.

I am a member of a national network on stem cells. We had five jurists in the room at a recent meeting during which we tried to find, in the proposals for legislation, if there was a prohibition or not on the use of embryonic stem cells.

It is obvious that it is probably covered by "part" of an embryo in vitro, but as I said that doesn't really make any sense. So it is not clearly stated whether an authorization is required to do research on embryonic cells as stipulated in section 8(2). It will therefore be necessary to specify that research on stem cells, with permit or authorization of course, is covered by this bill.

It's the same thing for the creation of a chimera. Section 9(1) says that an authorization is required to create a chimera, but unless we find that that comes under the section on embryo or parts of an embryo research, nowhere do we talk about the use of or even an authorization to use it, or the nature of that use.

Another issue I would like to raise is the discretionary power of the Minister, because the proposals talks about the Minister everywhere. I will use the example of section 16(1), where it says:

16(1) The Minister may take, or order any person to take...

Therefore he can delegate.

...all reasonable measures that the Minister, on reasonable grounds, considers necessary to prevent, reduce or mitigate any danger to human health or the environment or any harm to human dignity...

after environment,

...or human rights.

It is a power without limits and it may be necessary, but we have to at least foresee an appeal procedure because it is an extremely broad discretionary power.

There is also a register forecast in section 21(1) that allows the Minister to:

use health reporting information...

Don't forget that this is identifying information.

...and information otherwise relating to the controlled activities [...] for the purposes of [...] identification of health and safety risks, potential and actual abuses of human rights, or ethical issues associated with human reproductive technologies.

Therefore he has very broad discretionary power on ethical issues, and in section 21(2), it says that he "maintains a personal information registry containing health reporting information". Therefore, we have both the creation of a megafile in section 21(2) and a very broad and limitless power in 21(1).

The limitless power goes beyond even the law and the Charter since it gives the Minister power over ethical issues. In French we say "morale", but we have to put in "éthique" because in English it is "ethical". The words "ethical" and "morale" are different. I don't have time to explain, but we need coherence in the terminology. Why can we have a discretionary power that is not even based on or limited by the Charter, that goes beyond the Charter, to gets into ethical or moral questions that no one can control?

I think we should stop and limit the Minister's power, as is the case for any other Canadian citizen, to what is prescribed in the Charter, and not leave the door open to personal conviction or the position of some political party.

If there must be a megafile, it is the regulatory body, if there is one, and not the Minister that should have it. We sill have an independent organization and that will cause fewer problems. I think that the political history here in Ottawa during the past year shows the dangers of having a megafile within the government in a health department.

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Let's now talk about the status of the regulatory body. Other people, including Françoise Baylis who, I believe, testified before you not long ago, have underlined the need to have provisions about the creation and function of the regulatory body. It is mentioned in you document Aperçu, but there are no statutory provisions in this regard.

I am coming to my conclusion, the seventh point in my presentation, that deals with the proposal for a more flexible mode of regulation. We understand why you chose the Criminal Code. We also understand why certain prohibitions, such as the commercialization of procreation activities by surrogate mothers, should be in the Criminal Code. We understand why embryo cloning should be in the Criminal Code. Some even believe that germ line therapy should be in it. That is not the case for me, but others think so. We also understand about the deliberate creation of embryos for research.

I believe that what we should put in the Criminal Code are techniques about which there is a consensus that there should not be any research, because they should be anticipated and prohibited even before they can be used. That is different from techniques that are currently problematical but that may, in the future, be very promising for humanity, such as therapeutic cloning or, in my opinion, germ line therapy. We are not ready for that, but it should be seen differently, by the creation or transfer of powers to the regulatory body. That body could, of course, follow the provisions of the Criminal Code, but have a list of activities that are on a moratorium list. We could say that we are not ready now, that we don't understand the implications, that it is not safe, that it may even be dangerous for the health of Canadians, but that we don't want to prohibit them in the Criminal Code because that is going too far.

In the meantime, we could allow the regulatory body to discuss germ line therapy with Canadians, and therapeutic cloning, which is a really promising technique to decrease suffering and pain for people suffering from certain diseases.

I am therefore proposing a legislative arrangement that would allow the regulatory body to start a discussion with the public. We have not had a discussion in Canada on germ line therapy. Everyone said no immediately, and it was over and done with. We don't want that. It's true that we don't want it now, but that does not mean that we should not have public debate. It's the same thing for therapeutic cloning.

If a clinic or a researcher does not have the necessary authorization or if the activity is not on the moratorium list, criminal sanctions would automatically apply. That would still give the moratorium list a certain credibility that did not exist in the case of Ms. Marleau 10 years ago.

What are the other discussion points? I have three, but I will add another one that I just thought of.

In the title of the proposals for legislation, it says “proposals for legislation governing assisted human reproduction”, but three-fourths of what we find in it talks about reproductive material instead. It would be preferable to have a title that refers to the content better. We should therefore and “the use of reproductive material”.

We note that people can ask for the destruction of their gametes or embryos or of personal information, but we do not ask if they will be there ad vitam aeternam? Will they be there forever? Should we give a regulatory body the power to review the fate of these embryos every 10 years, even if we may need them longer, to observe the effects on health and safety?

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Don't forget that in England that was not foreseen and thousands upon thousands of embryos had to be destroyed. We therefore need a time limit or at least the power to review.

The proposals do not mention parthogenesis. There is no mention of ectogenesis either, but in studying the section we see that they are covered. Parthogenesis is important because there has been a discovery in Australia. I quote:

[English]

ADELAIDE—Australian researchers said on Tuesday they may have found a way to fertilize an egg with cells from any part of the body, rather than sperm.

[Translation]

It's autogeneration. It allows the creation of another person by the stimulation of an ovum, without another gamete, without another reproductive cell.

[English]

This offers hope to infertile men, and even lesbian couples.

[Translation]

I know what we able to do with frogs in the 1980's. There are a lot of scientific announcements but it remains to be seen where the truth lies in terms of these techniques, yet we have to plan for that in the legislation.

In conclusion, I would like to tell you that it is the time to act, as was said in the Science editorial of October 26: "Legislate in haste, repent at leisure".

It was a comment on the Human Cloning Prohibition Act of the United States.

I don't know if you saw President Bush speak on television about cell lines available to humans last August 9th. We learned a few weeks later that there were not as many as he thought, that the quality was not at all in agreement with what he had said and that most of the quality human cell lines—not those of mice—were in the hands of the private sector.

I know that it is time to act. I'm not against it, but there are still some small accommodations to make so that the legislation or the Canadian position be both forward-looking and well thought out. Thank you.

[English]

The Chair: Thank you, Professor Knoppers.

We'll move to the next section of the meeting, which is questions by members, and we'll begin with Mr. Manning.

Mr. Preston Manning (Calgary Southwest, Canadian Alliance): I would to thank all of you for adding to our information overload. You've all covered a lot of subjects, but we do respect your expertise and want to thank you.

I'd like to make one brief comment at the beginning, not ask a question, on Professor Downie's point about a national oversight body. I know some of us on this committee actually think the regulatory body this statute is creating will become that body. At the pace this Parliament operates, it would take three to five years to get that national oversight body, if you went after it directly, so the way to get there may be from this body. The National Energy Board, when it started 38 years ago, regulated one pipeline and two export contracts, now it is the senior energy regulatory body. So maybe at some other time we could talk about that route to getting the body versus the other route.

I really have two questions that pertain to the regulatory body. I think we're all agreed that one of the characteristics of this regulatory body is that it has to have ethical integrity and authority. It's going to make decisions on what the public will think are matters of right and wrong, not just technicalities. In your judgment, what needs to be done in authorizing a statute to give standing for ethical values and considerations, to infuse the deliberations and the decisions of this body with an ethical component? Is there something that has to be in the statute, in the structure, in the direction that's given to ensure that the ethical dimension is there?

Dr. Suzanne Scorsone: This is what I was trying to get at by saying that it should be within the Ministry of Health, because that way it would have to be responsive to the Canadian public through the oversight of the elected officials of the country.

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Of course, the appointment of persons to this would also be of extreme importance—who they are, what their expertise is, and what their balance as human beings is. A lot of this is not just what the qualifications are and what the person has on his or her CV, it's the person's track record as an insightful and respectful person. But in my view, only by having it in a position where Parliament can feed into it what members are picking up from their constituencies will it be kept responsive, in a way that can be controlled by statute or by its structure, kept responsive to the Canadian people and to the ethical concerns they identify.

Prof. Jocelyn Downie: I think you can get at it in a variety of ways, and you'd have to take multiple approaches to do it. The first thing you could do is ensure that ethics infuses the statement of the purpose of the enabling legislation, for example. If you look at the legislation we have here, it actually has much more about the core values than you often see in preambles to legislation, and I think that really helps set the stage and make it clear that ethics is a core part of what this enterprise is all about.

The second thing you can do is make it explicit in the mandate of the body that it consider the ethical aspects of the developments of the various kinds of technologies and interventions that will be before it. I think the description of the regulatory body in the legislation itself loses what you start with in the preamble. It becomes a very technical licensing regulation, dealing with inspector's powers. You've lost that sense of the ethics in there, but you could do it through your statement of mandate of the body, and that's not yet in the legislation. So I think you could get the ethics well in there.

Also you could get it through the constitution of the body, picking up on what was said, making sure you have the right kinds of experts around the table. Make sure you also don't have the “one of”; it's very difficult, if you're the only person at the table, to be heard a lot of the time. A lot of the time ethics people will say to you, you're at a research ethics board meeting, for instance, and it's eleven to one, eleven to one, always, and always the one is the ethics person. You have to find a way of dealing with that phenomenon. It's not to say the ethics person gets to trump everything or anything like that, but you need to have a body that can recognize that there's something going on if you have that constant eleven to one, and you need to reflect on it. So sort out the constitution of it.

As a final minor point, I think you can be responsive to the Canadian public by reporting directly to Parliament, rather than through a specific department. That is why I would be pushing to have it outside Health Canada and reporting at a higher level. These agencies, boards, and so on can do that, as far as I understand the structures of these entities. I think there's a lot of health to be found in that, because you don't get these conflicting mandates, and Health Canada has certain things it needs to follow.

If it had to go into a department, I'd put it in Health Canada, as opposed to, for instance, Industry Canada, where Genome Canada was placed, which I think is actually intensely problematic, because of the conflicts of interests it creates. But nonetheless, I'd prefer to see it at the higher level. I think, again, that gets you the sense that this is about the public interest. When you're reporting to Parliament, it's about the broad public interest, with all aspects of government represented there. I think maybe the ethics can come through a little more clearly there too.

Prof. Bartha Maria Knoppers: I'd like to agree with and totally support the last point, the reporting to Parliament directly, as opposed to any ministry or any constituency at any time, when different ministries and different political ambitions can lead ministers to take particular positions.

Also, to have direct constituency feed-in through politicians to such a body, I think, would be a mistake. The body should be independent, arm's-length, and yes, respond and be responsible to Parliament, but engage in its own direct dialogue with Canadians as well, so that Canadians can really feel that they don't have to go necessarily through their MP in order to have their say. I'm not saying the parliamentary process or the political process is not a worthwhile one or one Canadians don't feel at home with, but I think the independence relies not only on setting it up as independent, but on its being perceived as being independent—that's very important.

• 1645

Mr. Preston Manning: To follow up on this, would it help to establish the ethical authority and focus of the regulatory body if we gave more attention to the statutory definition of human reproductive material? We raised with the departmental solicitor—and again, this is us as laymen—whether this human reproductive material is property. Is that how it's to be looked at, that it's owned etc., so then you would import all property law? Or if it's not that, is it human life, which takes you more down the family law channel—it's held in custody etc.? His reply to us—I think he's sitting in the back there, so he might be interested—was that this statute treated that subject as sui generis, as unique, and tried to just define it for the purpose of this statute.

I guess I'm wondering whether you consider that adequate, or whether the statute should try to establish the moral status of the embryo and the human life aspect of this material, so that whatever the regulatory body does, it has to be looking at this material through that lens. I know that's a roundabout question, but I think you know what I'm asking.

Prof. Bartha Maria Knoppers: I think the sui generis does just that, because we're going to get into the classical insoluble debate on property versus person. I can name you as many jurisdictions that think it's property as think it's part of the person, and the result is the same. With the reproductive technology acts in those countries, they give the same measure of control. So really, what we're talking about is the degree of control a person can exercise that expresses their personal values and religious convictions, without getting into the various dangerous minefield of property versus person. Sui generis sets it apart. It really gives it its own statute. So I think that's actually the correct route to take.

Mr. Preston Manning: And if we did that, the courts wouldn't take us down some other road, as long as the statute made that clear?

Prof. Bartha Maria Knoppers: That's right.

The Chair: Thank you, Mr. Manning.

Mr. Ménard.

[Translation]

Mr. Réal Ménard (Hochelaga—Maisonneuve, BQ): Thank you, Madam Chair.

I have four brief questions. I want to understand all these interventions well. Do you subscribe to the formal prohibition in this bill on the creation of an embryo solely for research purposes?

Second, one of the major issues for this committee or the main recommendation it will have to make is about stem cells. When I first became involved with this committee, I was pretty much in agreement with the Minister's position, but the more testimony we hear, the more I tell myself that if we want to be visionary, we may have to talk about a moratorium but not a formal prohibition.

We have had a lot of witnesses who have told us that for Parkinson's, cardiac illnesses and a lot of others, it is obvious that there is a lack of answers for people who are suffering and that to answer them, we need to authorize research on stem cells. I would like your comments on that.

Third, and it is also the most important one for me in the recommendations, is that many witnesses—you know, Madam Chair—who have come to see us have questioned the anonymity of donors. Many witnesses have told us that if people are not prepared to reveal their identity they should not be allowed to be a donor. The most frequent argument to support such a statement is section 8 of the International Convention on the Rights of the Child. Section 8, in the end, says that people have a right to know their identity.

As I reflect on this and look at how far each one of us has come, I am convinced that there are not many people in this room who would accept not knowing half of their identity.

Therefore do you think that the committee should go forward and that there should be an explicit provision regarding the obligation to reveal the origin of the donation that could eventually lead to the creation of the embryo?

My four questions are simple but important.

[English]

Dr. Suzanne Scorsone: I'd like to address the question of the identification of the donor for the offspring.

• 1650

I do think the offspring, like an adoptee, has the right to know his or her progenitor, not to have legal claims on that person for support or anything of that kind, because, as with adoption, that's severed, but to know who that person is. Since this is a situation into which people go with their eyes open, they have a choice as to whether they will do this or not. They don't have to donate if they don't want to have their identity known.

I was told by someone who had served on the bioethics commission in Sweden that when they set up a law that the child had a right, when he or she reached a mature age, which was one of competence rather than age, numerically speaking, they could seek to know the identity of their progenitor. At first, the rate of donation plummeted, as the guys looking for beer for the weekend dropped out of the line. Then it came back up, as men who had children, who were family men and felt solidarity with the people who felt this need began to donate.

There are many people in our society who would not think that donor insemination a great idea anyway, but since it is legal, we have to look at doing this in a way that is at least maximally ethical. We have not done what is done with blood and actively sought to bring about donations from within our country. We have basically offered people various incentives. Although in theory, the $50 or $75 that people are given is supposed to be expenses, it's really an incentive. It really is.

Also, I would point out that in the proposed legislation there is provision for buying it from other countries. In other countries it is commercially bought, which has all kinds of health risks involved, and it contravenes this principle that would be in the legislation. So what you would prohibit within this country, buying it from a donor, would be nonetheless part of getting it from any other country. We have to look at—I suppose home-grown sources isn't quite the term we'd want to use—retrieving sperm from within our own country. This also would facilitate the identification, because then people would be in a position where they would have to face the question themselves at the outset, and they could, in fact, have some chance of being found. This would also mean that records would have to be reliably kept, which has not been the case up until now.

[Translation]

Ms. Bartha Maria Knoppers: First, on the subject of the creation of embryos, it is an area in which I would place a moratorium instead of a prohibition at this time, even if I personally have other... I think we can foresee. It's easy to say today that there are a lot of surplus embryos. Yes, it's true, but in the future, assisted human reproduction techniques will be so refined that there will be no more of these surplus embryos. We would therefore be better off looking at that and not fall for the easy way of saying we will use the “surpluses”. We have to take the time to have a public discussion and put that on a moratorium list for now.

I don't see that research on stem cells is prohibited. What is prohibited in these proposals, in my view—and I am not a pure science researcher so I may be wrong—is both embryo cloning and therapeutic cloning. But since research on embryos is not prohibited, research on embryonic cells is not necessarily prohibited.

Mr. Réal Ménard: But the creation of an embryo solely for research purposes is.

Ms. Bartha Maria Knoppers: Yes, that's true, and that's what I would like to see put on a moratorium list. When we say that we can no longer do research on stem cells, it's not true. In this moratorium, I would put, for example, therapeutic cloning, which, in combination with all sorts of other sections here, is currently prohibited, in addition to embryo cloning. Therefore we have to make distinctions because in science it's all of a piece.

As for anonymity, in the International Convention on the Rights of the Child, the section that deals with the right of the child, and not identity, talks about the right of the child to know his parents insofar as is possible.

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It is a part I know by heart. Why? Because we have often used the right of the child to know his parents insofar as is possible as a right to know his origins, as a right to identity. But that's not it. That was put in at the request of Argentina, for young women who, during the junta, were imprisoned and gave birth before they were killed. Their child was hidden. Often it was given for a clandestine adoption and it was the grandmothers who were looking for these children.

However, when we read the preparatory work on the International Convention, we see that they were thinking mainly about children without a country and often without parents, in the sense that no one knew where their families were. The term parent is not defined in the Convention. The Convention has never studied the issue or reproductive technologies and the anonymity of sperm. Therefore they were not part of the Convention's preparatory work and we use this Convention as a source for a right that does not exist.

We also say “insofar as is possible”. We don't say that it is an absolute right, if the right to one's origins exists. They idea is rather to be able to find one's parents. But what is a parent?

Mr. Réal Ménard: You know that in Canada—and it is even financed by Health Canada—, there is an association of people born thanks to reproduction technologies that has appeared before this committee. You may want to look at their paper.

Does section 8, which deals with the right to know one's parents, lead you to an epistemological shift and to say that this means the right to know one's origins? Do you make such a distinction between the terms of substantive rights?

Ms. Bartha Maria Knoppers: For me, the right to origins is not a substantive right. If it was, it would only be an emerging right. It is not yet recognized.

Mr. Réal Ménard: It is embryonic.

Ms. Bartha Maria Knoppers: It's embryonic, exactly. Here is what I can tell you about the right to origins. In terms of family rights—and I am limiting myself to Canada—, in the last 20 ans we have tried, in legislation dealing with filiation, in relation to everything dealing with civil status, to recognize the sociological family. So we have dropped the assumption of paternity as a determinant to recognize blended families, sociological and psychological families, to ensure stability, continuity and security for the child. It is therefore the in loco parentis rule: someone who has acted as the father under the Divorce Act can be forced to pay for food, even if he is not biologically linked to the child, because we recognize what is important: the child's stability, continuity and security. Therefore family law differs completely from the genealogical approach of ancien times when everything was linked to heritage, succession and patrimony.

The third argument deals with adoption. Adoption still happens because there has been a relationship, perhaps not very long, between two people who have decided, deliberately or without forethought, to create a child. There has therefore been a human relationship. It's not the same thing as depositing sperm or an ovum when there is a hysterectomy.

Mr. Réal Ménard: The argument of the associations is that as the law now stands, when parents ask to become adoptive parents, if they publicly state that they do not want to know the real parents of the children, we will not recognize their right to adopt. That is the parallel to adoption made by the associations that have come before us.

Ms. Bartha Maria Knoppers: Yes, and adoption has changed a great deal. Before, we didn't talk about it. It was hidden, like cancer or mental illnesses, etc.

The transparency of adoption has moved forward. We now tell children because under Canadian and provincial laws, if there is agreement by the person who abandoned the child, and the child, once it has reached the age of majority they could meet. It could be done through the registries and all that, and you know that. Therefore, the means are there. In the legislation—I can name five or six that talk about anonymity—, it says that if a child conceived through assisted reproduction is searching for his origins and has psychological or health problems, there would be a way to meet his psychological and physiological needs.

Therefore there are already mechanisms. I have seen that the proposals say that if the donor consents, the child can...

• 1700

To come back to this idea that we are only the sum of our gametes, it is very reductionist and it reinforces the argument according to which it is our genes that determine who we are. I do not believe that we are only the sum of our genes.

The Chair: Excuse me.

[English]

Mr. Ménard has now had about 13 minutes, so I'm going to have to cut you off.

Mr. Réal Ménard: Well, thank you. You are very generous with me.

[Translation]

Ms. Bartha Maria Knoppers: It's my fault.

[English]

The Chair: Well, it's just that I couldn't get in between the two of you. You were doing a dance.

Mr. Réal Ménard: I'm sorry, I'm going to give a speech in the House.

Prof. Bartha-Maria Knoppers: Okay.

Mr. Réal Ménard: About Marijuana—you know that?

The Chair: Mrs. Wasylycia-Leis is next.

Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): I know Suzanne wanted to comment in response to Réal's question, and I'll make sure I keep my question short enough that she can do that.

The Chair: You're not going after this anonymity thing are you?

Ms. Judy Wasylycia-Leis: No.

The Chair: Because Réal missed the meeting, but we pretty well all agreed we're against this anonymity thing. That's already one of the consensus issues.

Mr. Réal Ménard: What did you say?

The Chair: At a meeting you missed there was pretty well a consensus among the members present that we were not going to allow anonymity any more in our bill. You missed that meeting, so you were following a line of questions the rest of us had pretty well made a conclusion on, at least a majority.

Mr. Réal Ménard: Oh, you agree with my position?

The Chair: Which is no anonymity allowed?

Mr. Réal Ménard: Yes.

The Chair: Yes.

Mr. Réal Ménard: All right.

The Chair: The whole committee, as a matter of fact, I think is unanimous.

Mr. Réal Ménard: Life is good for me.

The Chair: You win some, Mr. Ménard.

Now Mrs. Wasylycia-Leis.

Ms. Judy Wasylycia-Leis: Since I've missed a few meetings, I might risk raising something that's already been discussed.

Let me start by saying I really appreciated all the presentations today. I know Jocelyn had to go, and I would love to pursue this whole idea of—

The Chair: The splitting of therapy and—

Ms. Judy Wasylycia-Leis: Absolutely, and also the whole question of reporting directly to Parliament, because I still can't quite imagine how that would be useful for accountability and getting some checks and balances in place. I'd really like to hear more about that idea—maybe the two other presenters could touch on that.

Suzanne, I'd like to ask generally what you think are the most serious omissions or deviations in comparing this bill and the royal commission recommendations.

I'd like to hear specifically, as you mentioned that there's no prohibition on animal-human hybrids in this bill, whether of not you think that paragraphs 3 (1)(f) and (g), which talk about transplantation to animals, touch at all on your concerns?

You were going to talk about sperm and ova and, I assume, the whole commercialization in that area, and you didn't get a chance. I want to know if you think this bill does the job when it comes to clear prohibitions on commercialization in those area?

Then, of course, there's the whole governance issue, which you touched on in respect of Health Canada—

The Chair: Ms. Wasylycia-Leis, how could they possibly answer all these?

Ms. Judy Wasylycia-Leis: And then I had another one after that.

The Chair: Why don't you pick the one you really want to know about? Which one do you want to emphasize?

Ms. Judy Wasylycia-Leis: Those three, I think, all could be handled fairly quickly.

The Chair: Oh, do you?

Dr. Suzanne Scorsone: One big issue is the commercialization question, which is in the text I've turned in. Certainly, runs have been taken at it, and there are some very constructive proposals within the legislation that would deal with commercialization. But the larger question of commercialization and commodification, I think, has not been entirely dealt with.

When we as a royal commission reported, if I recall correctly—and Bartha can correct me—we recommended that all provision of reproductive technologies be non-profit in character. At that point most clinics were non-profit and were talking place in hospitals, in university settings, and so on. Now private sperm banks, commercial clinics of various kinds have greatly proliferated. Some are for profit, some are non-profit, and in my view, these give rise to a manifest conflict of interest. Bless their cotton socks, physicians do wonderful things, but very often a person whose only tool is a hammer thinks everything he sees is a nail. So they try to do what they know how to do for everybody. If you know you're not going to be able to do a high cost procedure that will make profit for your stockholders, if you send somebody home and tell them to drink tea for a year, then the temptation to make recommendations that may not necessarily be in the best interests of the patient will be very strong.

• 1705

It's the same with fee for service, actually. I would prefer to see physicians and all people involved in this field very well paid, very well compensated for their expertise, but salaried, so that they would have no incentive to increase the number of things they do. It would also keep them from going nuts from overwork, which would help.

The commodification question, certainly, has begun to be dealt with, but I would like to see wording in there that would prohibit any ownership of human cell lines, embryos, or anything that is the naturally occurring full human genome, or even naturally occurring human genes. Whether they be legitimate stockholders, researchers, pharmaceutical corporations, those who are involved can certainly make legitimate profits from the intellectual property involved in the cultivation, they can make profits or gain professional prestige from having originated these things and from selling the products, such as dopamine or insulin, that result from these things without actually owning a gene, or the entire human genome of an individual, for that matter. One could see definite parallels to questions in the entire bios, in the sense that a gene in a particular tree has been growing for millions of years, someone comes along and describes it, and suddenly they say they own it, which is a little absurd, quite aside from the practical implications of it. So I would like to see specific legislative wording that would prohibit the owning of genetic material as such.

With respect to the animal-human hybrids, certainly, the transplantation of embryos or gametes into one or the other, human into animal, animal into human, is a very constructive step, but I do not see here, unless I am misreading, anything that says there shall be no fusion of gametes between animal and human. I have heard some anecdotal accounts that would indicate to me that this does indeed occur. I've heard of people having a picture of their humster taped up next to their desk, their little human-hamster hybrid.

But also, if you allow chimeras under licence—that's in here—these are, in another sense, animal-human hybrids. If we heard one thing consistently across the board, it was that this fusion of animal and human should not occur. This is quite different from taking one gene or a small part of a nucleotide sequence from an animal and putting it into an analogous position in a human nucleus or a human chromosome, because this would be more akin to, say, transplanting a pig heart valve. It would be a part. It would not be a character from another species.

The Chair: Thank you.

Actually, that was six minutes.

Ms. Judy Wasylycia-Leis: Do I have more?

The Chair: The problem is, the time's running out and the list isn't.

Ms. Judy Wasylycia-Leis: Okay.

The Chair: So I'm going to have to ask the witnesses to be as succinct as possible. Don't tell us all you know, tell us the simplest piece of what you know.

Dr. Suzanne Scorsone: Believe me, it was four years, we're not telling you all we know.

The Chair: It's still taking a lot of time.

Mr. Lunney, please.

Mr. James Lunney (Nanaimo—Alberni, Canadian Alliance): Thank you.

Picking up where Ms. Wasylycia-Leis just left off, on the chimera, I was interested that you said it would be a constructive step in mixing animal and human. I didn't quite understand what you said about that.

Dr. Suzanne Scorsone: Not the chimera, the prohibition of transplantation of an embryo of one into the other. That's constructive, chimeras, no.

Mr. James Lunney: I appreciate that comment.

There are about 6 billion of us humans running around on the planet, depending on who's doing the counting. I would just wonder, when you talk about taking even a gene from animal and inserting it into a human, with all the richness of human genome that's available to us, why would we want to take an animal gene and put it into the human genome?

Dr. Suzanne Scorsone: If there were a human-to-human way of doing it, I would certainly think that preferable. I'm just saying, it's not the same kind of barrier. If someone were, for instance, doing particular forms of research and it were not something that was going to be part of an embryo that would become a born human being, it might be less problematical than chimeras or full-fledged animal-human hybrids, which have not been addressed at all here. But a human-to-human genetic therapy approach would appear to me to be preferable.

Mr. James Lunney: Thank you.

• 1710

Another aspect you touched on just briefly had to do with the stem cell research. We've heard a lot of witnesses on tremendous breakthroughs, certainly in the last year and the last six months, with McGill University, with Dr. Freda Miller, and so on, with adult stem cells, and the prospect of autologous transplant. Early in the industry there was the clamour for embryonic stem cells, with promise for the Parkinson's and the Alzheimer's and the diabetic and so on, with, of course, the attendant risk of rejection that comes from embryonic material being transferred into another donor. It's apparent that perhaps there was very good reason for us to enhance our research efforts in the adult stem cell research when they were considered not very flexible. Now we're finding they're far more flexible than earlier. I wondered if you had anything further to contribute to that.

Dr. Suzanne Scorsone: I would fully agree with that, and I would add, thinking a little laterally here, that if it were not for the commodification and commercialization problem, we might see a lot less demand for embryonic stem cells than we do. Here you will have more awareness from your hearings than I, but one of the things we saw in the debate in the United States was that many of the adult stem cell lines that existed, the somatic stem cell lines, were owned by particular companies, and other people were unhappy that they would not have access. Ultimately that was dealt with. I wonder whether the demand for embryonic stem cells would not in fact drop off considerably if Canada were, by statute, to refuse to recognize patenting or ownership of stem cells as such, if all the content of these were readily accessible to everyone, so that one would not have the temptation or the motivation to try to create embryos de novo and say, okay, this stem cell line belongs to me or to my company, rather than my using yours, for which I will have to pay royalties and have all kinds of other entanglements in the licensing of products and all the rest of it. So if there is free access to adult stem cell lines, can we not do all the good that everyone agrees on, without having to resort to something that is as ethically problematical as the use of embryonic stem cells?

Mr. James Lunney: Precisely.

The final question I'll direct to Ms. Knoppers. You made a comment that there was no reference to when life begins in the preamble.

Prof. Bartha Maria Knoppers: We don't want a reference to where life begins.

Mr. James Lunney: Oh, is that it?

Prof. Bartha Maria Knoppers: Yes.

Mr. James Lunney: Ah, I see.

Prof. Bartha Maria Knoppers: Respect for human life was absent as a principle in the preamble.

Mr. James Lunney: Respect?

Prof. Bartha Maria Knoppers: For human life. It's a basic ethical principle, and it's missing in the preamble. It has nothing to do with when, legally or morally, countries or individuals decide human life becomes a person or begins.

Mr. James Lunney: There's a lot of concern. The draft legislation says no research for embryos beyond 14 days. But of course, the reality is that after 14 days, if that embryo has had its stem cells extracted, it would cease to exist, but the stem cells taken from it, cells that were destined to be a human being, could then be grown in perpetuity, technically, for extracting dopamine, neurotransmitters for the Alzheimer's patient, etc. And certainly, there's a lot of objection to that commodification—basically, we're talking about the farming of human tissue.

Prof. Bartha Maria Knoppers: I would agree with the therapeutic potential of such use of stem cells, as opposed to embryos per se. It's axiomatic that you can do research up to 14 days on an embryo, but a stem cell has acquired, if you were to prohibit stem cell research, greater moral value. It would be totally contradictory, as a matter of fact. Stem cells do not have the qualities or the status of embryos. Until an embryo is implanted, we're not even sure whether it will become a person or not. That's a legal issue.

My point was that I think it's inherent, it's reflected throughout the concerns this bill has, that there is a concern among Canadians for respect for human life. We go all the way down to cells and genes and gene sequences and everything else, and yet it's not in the preamble as a basic value that Canadians share. That was my point. I think people can respect human life, no matter where they stand on other more contentious issues with respect to embryos or fetuses.

• 1715

Mr. James Lunney: As my final comment, I'm rather surprised at your distinction between the embryo and the stem cell, that in fact you're not attributing that the same dignity, when in fact, by taking that cell out of the embryo, you're terminating the embryo. It's very much an integral part of that embryo, and you're saying it doesn't have any status, and thus is capable of being used for commodification, where the embryo should not be.

Prof. Bartha Maria Knoppers: Certainly, I think one of the goals of this bill is to avoid commodification. In fact, it's very clear that's what it tries to do.

Dignity, as I said—and in fact your comment sort of points to it—is inherent in the human person. You can find it in the 1948 Universal Declaration of Human Rights. It's inherent in the person, from which all other rights, including the right to life, the protection of health, privacy, and so on come. I would not argue that cells have dignity, because that would be the ultimate reduction of dignity. Living persons have dignity. Yet I wanted to argue for the inclusion of the respect for human life, which I think joins your argument, in the preamble of this bill.

The Chair: Thank you, Dr. Lunney.

Mr. Merrifield please.

Mr. Rob Merrifield (Yellowhead, Canadian Alliance): I have a lot of questions and not a lot of time. And a lot of questions have been answered—I appreciate your being here.

I'm a little confused with some of the testimony. Ms. Downie is gone, but she suggested that we have too comprehensive a bill and that it should perhaps be split into the therapeutic and the research side, because they're going in different directions: one is reproductive and the other is on the stem cell research. Neither one of you really commented on that. I wonder if I could get your opinion as to what you think, whether that bill is too comprehensive. You've worked on it for four years.

Prof. Bartha Maria Knoppers: This was an issue that wasn't raised by the royal commission. We certainly didn't discuss it. I have been on other committees of the Medical Research Council, as it then was, that suggested a national body, for instance, for somatic cell therapy. This was in 1991.

Her point was that there are so many areas of research that are contentious, why do we only have an oversight body for this type of research, when we really should have an oversight body for all kinds of research, genetic and otherwise? For her, reproductive technologies were therapy for infertility. I don't know how many Canadians share that point of view. Some of them still think it's research. I would say in the last 25 years we've certainly integrated to a large extent. Today 2.1% of Australian children are conceived and born, living children, via these techniques. So her point was that this is now an acceptable therapy, but one that nevertheless requires some control over the quality of services, i.e. authorization, permits, licensing, and so on. If we're going to have control or oversight over research, let's do it in a much broader scheme.

It's one of the first times I've heard of this separation. It was not discussed by the royal commission. I find it a very interesting proposition. I'm not sure the researchers of Canada would join me in that particular comment.

Dr. Suzanne Scorsone: I think it's a question of practicalities also.

There's a history. The commission was called into being to talk about reproductive technologies, but all sorts of reproductive-related issues that are not strictly speaking assisted reproductive technologies got swept off the table into one basket and handed to us to reflect on and make recommendations. That started a process. The recommendation was there, and now we're at this point.

I think many people who would otherwise resist an overarching body to look at research of all kinds, because there are a whole lot of oxen that would be gored by that, could accept it in something that touches our humanity this closely, that reaches to who we are as human beings, who our children are as human beings, with all the related implications that fan right out across family law and various other kinds of law throughout society. So it may be something that can be done in this field that could not yet be done in other fields. I think Mr. Manning is quite correct in saying it might very well, once it was tried and found to be useful, viable, and good, be extended to other areas. But this is doable. Something overarching for the whole country at this point in time, I would suspect, would not fly.

• 1720

Mr. Rob Merrifield: Just to carry on with that, I am really quite concerned about the regulatory body. We've talked about whether it's inside Health Canada or outside, and we have different views on that. Perhaps there is something you do agree on. If I catch you right, you all say it should have an accountability level that reports directly to Parliament rather than the minister. Is that fair to say?

Dr. Suzanne Scorsone: And at a very senior level. I certainly would not see this as being some kind of subordinate thing, even within Health Canada, that would be reporting to someone who reported to someone six degrees of separation from the top. It should be something that does get straight to Parliament, directly through the minister or however else it turns out to be workable.

Ms. Judy Wasylycia-Leis: But you're talking about two different ideas here, reporting directly to Parliament or to the minister, who reports to Parliament. I think that's where we're having some difficulty, trying to determine an appropriate mechanism.

Dr. Suzanne Scorsone: This is my view. Ultimately you will decide on the structures, and you're more familiar with how structures work than I am. However, from the point of view of a total lay person, it seems to me that if a board or other organization reports directly to Parliament, it does so every year, every two years, every three years, and if it runs into difficulties, there will not be that day-to-day support of resources that there would be within the ministry, and there also would not be ongoing nuance and relationship in that sense. So the possibility of something becoming a law unto itself is much greater if it only periodically shows up on Parliament's radar screen than if it were constantly in relationship with people on a day-to-day basis. This would be my concern.

Prof. Bartha Maria Knoppers: I would argue that a report directly to Parliament not be linked to any one ministry or any one political party that's in power at any time, to really ensure that the information it gathers, the broad powers it has, extremely broad, dealing with very sensitive personal issues of couples who are trying to have children, which is a very normal thing to do in society, are not further stigmatized, first, by already being in the Criminal Code, because it happens to be jurisdictionally convenient, and by the kind of follow-up we need to do with these ongoing registries. I would argue, very strongly, against its being in any one ministry, thus adding a further layer of protection for those couples and families.

Mr. Rob Merrifield: Thank you.

Perhaps I'll pose just one quick question, because I think Ms. Scorsone answered it with regard to the adult stem cell, and this is a follow-up to a question from Mr. Lunney.

We rush down this track into the embryonic stem cells, the whole field is moving at such a pace, and resources are limited. My gut is telling me that we should be running down the road that is not going to run us into the ethical problem, which is the adult—let's not say adult, let's say non-embryonic, because I believe there are other ways of getting stem cells. I would want your comments on that.

Prof. Bartha Maria Knoppers: If you're taking a resource allocation approach as being an ethical approach, which it is, as we are in a universal health care system, with access and availability an ethical issue, if we had to prioritize in order to make these techniques or the ability to grow skin for burn victims or slow down, as we can never heal, certain very deleterious diseases, I think the embryonic cell—and we're talking about left over embryos that would be destroyed in any event—would be the research route that should be tried, under the proper control that we have in this bill here. Adult stem cell will be tried in any event, simply because of the autologous aspect of it. We get back to people thinking these are their genes and so on, and you'd have less rejection. But I think for the greatest number of people the embryonic cell research route would be the best, in having more immediate therapies available, a broader number of pieces.

• 1725

Mr. Rob Merrifield: Do you have anything to base that on, or is it just your instincts saying it?

Prof. Bartha Maria Knoppers: I've read through the testimonies of all those who came here before you from the scientific community, and I think those, in of themselves, in addition to the literature, would show that while it has not been as promising as first presumed, the adult cell is known scientifically to be less able and doesn't have all the qualities necessary for what I would call a more democratic approach to stem cell therapy, serving the greatest number of people. But right now, scientifically—and I'm not a scientist—I don't think we can demonstrate that one is more feasible than the other.

Mr. Rob Merrifield: Ms. Scorsone, do you agree with that?

Dr. Suzanne Scorsone: My own view is that until and unless adult stem cells are found to be wanting in this field, there is no compelling argument for going ahead with something that is ethically dubious and will divide Canadians. There are strong feelings on both sides. One of the things I've noticed with many of the people who say we must use embryonic stem cells is that it's largely an assertion, rather than based on evidence that they are particularly more useful than adult stem cells.

It seems to me it would be better to try what we all agree on and hope that this will do all that is wanted, without going into something that is ethically dubious or downright objectionable. We certainly know that Canadians are not united in thinking embryonic stem cells are just ducky to use. We do know there is consensus with respect to adult stem cells. You're representatives of the people and you have to work with consensus of one kind and another, and here you've got one that's promising.

The Chair: Thank you, Mr. Merrifield.

Mrs. Chamberlain.

Mrs. Brenda Chamberlain (Guelph—Wellington, Lib.): I agree with you, Ms. Knoppers, that a statement of respect would be very wise at the beginning of the bill.

I wasn't privy to the meeting that took place about the disclosure, but I wonder what your feelings are, because I don't really know how this works. When you talk about disclosure, you disclose to the parent, but with the child eventually, at the age they'd apply for this, would there also be a statement of, for instance, medical history, that kind of thing, whether the parent died between the time the baby was born and could gain the disclosure? What kinds of things do you see that should be out there?

This is quite interesting to me, because I am adopted, and so I don't know these things and have not been able to be privy to them. So I'd like to know what you would really put out there, so that the child could have access. Have you given any thought to that?

Prof. Bartha Maria Knoppers: Modern adoption laws, in the absence of a consent whereby the biological father or mother could meet the child, already foresee keeping proper medical records and making them available to children. Before there was a total silence, now you can get some information, even in the absence of consent from your mother to be found by name as a person, unless there's a medical problem or something else.

Even in fertility clinics in Canada now they will start keeping that kind of data, so that even if you cannot identify the donor, you can at least have a minimum amount of information, what we call the profile, so you can have an idea of who the donor was, and I think that is a very progressive step.

Mrs. Brenda Chamberlain: Excuse me, but would that include also, for instance, siblings?

Prof. Bartha Maria Knoppers: No, because they have their own right. They might contain information that there are other living children, but no identifying or other information.

• 1730

The problem with getting rid of anonymity is that you're going to slow down the openness of being able to talk about reproductive technologies. Parents will simply not tell their children how they are conceived, to avoid that child one day acting on that disposition in the law. We're trying to normalize infertility as part of the human condition, and in a way, it is going to close the door.

Mrs. Brenda Chamberlain: There will be nothing to compel them.

Prof. Bartha Maria Knoppers: Not even our parents now, by law, in any country, are obliged to tell us how we were conceived, with whom, and under what circumstances.

Dr. Suzanne Scorsone: I find some remarkable similarities, however, in the debate on this question to the debate on adoption before the right to access to identifying information was recognized. The idea that nobody would tell, that there would be harm to the child, and so on. I too am an adoptee, I should say. What my social parents, who were, in reality, my parents in the day-to-day sense, were told by the adoption agency in 1945 was that when you get home, you put down the basket, and you lean over and whisper in the baby's ear, you're adopted, we chose you. At six months old, I didn't understand that, but they knew there was never a time they had not told me. This made it so easy thereafter. It was simply part of normal life and was not a problem. It was a reality and it was different, but it was good.

The same thing can happen with this if people are able to get over the same fears that adoptive families have learned to get over in time. In my view, the offspring have the same right and the same desire to know not only medical information, which is certainly necessary and on which follow-up may very well be crucial, because many of the things that one may need to know the donor may not have known at the time of making the donation. Somebody who is 20 or 25 won't know he is going to develop cancer at an early age, say at 40, or will not know about a heart condition, or will not know about any number of things, or later-onset diabetes.

So it is necessary that people have a recognized right to follow up medical information, but also there is the desire just to know. The more we know about genetics, the more we know that while our social reality is part of who we are, how we have lived and what we have chosen are part of who we are, but our genetics are also part of who we are. When adoptees find their birth relatives, it's amazing some of the similarities they find. Also amazing are some of the differences they find, and the non-continuities there are that are clearly the result of where they were raised and by whom they were raised.

Madam Chair, you might be interested to know that in the records in the adoption agency that I found, because my mother is now deceased—she died before I found her—there was mention that the adoption worker found she gave ever so many more details than were even necessary. I have found poetry and other things she has written that tell me she used words the same way I do. It may also be interesting to know that my father, as it turns out, was a lawyer.

It's not determinative. Biology does not determine who we are, but it is a factor. I believe children have a right to know, without doing it in a way that is going to dreadfully disrupt the lives of others, something about that aspect of who they are. Many desire it, others don't care, and if they don't care, fine. If they do care, they should have a right to that information and to that kind of understanding of that aspect of themselves. It's simply a fundamental human reality, and it does not one whit lessen the bond they have with the parents who raised them. This is the shared history, this is the shared life, it's not the same thing, and so the two are not in conflict with one another. They are what they are.

• 1735

The Chair: It's 5:35, people. If you have another question, perhaps the witnesses might give you the answer in writing.

Mr. Preston Manning: Madam Chair, given the composition of the committee today, shouldn't we have a vote on something?

The Chair: Mr. Manning's been disappointed from the moment I banged the gavel at the beginning that we haven't had a chance to vote, because he really wanted to win one.

On behalf of the committee, I thank our witnesses for their very thoughtful presentations. Long before coming they have thought about all these issues and have taken their wisdom and applied it to the draft legislation.

I would say that we always reserve the right to be free to call you and see if we can explore some detail that maybe we didn't get to know your opinion about.

I thank you very much, and we might see you again, or we might at least talk to you again. Thank you very much.

This meeting is adjourned.