HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, May 29, 2001

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[English]

The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good morning, ladies and gentlemen. I don't seem to have a gavel, but I will verbally call this meeting to order and introduce to you today's witnesses, Dr. Jeffrey Nisker, professor of obstetrics and gynaecology in the Faculty of Medicine, University of Western Ontario, and Miss Madeline Boscoe, executive coordinator of the Canadian Women's Health Network, from Winnipeg, Manitoba.

I welcome our witnesses, and I'll ask Dr. Nisker to begin.

Dr. Jeffrey Nisker (Health Canada Advisory Committee on the Interim Moratorium on Reproductive Technologies): Thank you very much. Madam Chair and members of committee, it is indeed an honour to be here with you today.

I believe the issue of the human embryo and the broader issue of reproductive and genetic technology will ultimately affect how Canadian society will be shaped over the next 20 years, possibly the next centuries, because ultimately it reflects how we see ourselves as human beings. Are we something that can be bought and sold? Are we something that can be coerced? Therefore, the task you have in front of you, I believe, goes beyond medicine to how we look at broader Canadian society.

As time is limited, I would like to start where my involvement started in this process for the government in 1994. Patricia Baird, I am sure, will be speaking in front of this committee, and Patricia will talk to you about the process of the royal commission from 1989 to 1993.

In 1994, Health Canada put together the discussion group on the human embryo. I have the recommendations we put together over the next year and a half on an overhead that I will project, but I think you have it in front of you, because it is part of my discussion. I believe the 20 recommendations of the Health Canada discussion group on the human embryo are the core of what we're talking about, and they have to be expanded and looked at.

Health Canada asked us to look at the royal commission report, specifically anything that had to do with the human embryo. Health Canada still has a lot of questions and wanted a double-check on this before it went to the legislative process. So basic scientists, two physicians who work in the area of reproductive medicine, I and John Garrell, bioethicists, philosophers of science, nine of us, were put together under the chair of Jean-Louis Baudoin to look at this.

What was amazing was that within one year we were able to have unanimous consensus. A feminist theorist and a Catholic priest were able to sign the same document, which said we as a Canadian society can actually agree on the human embryo, on what research should be done on the human embryo, and on the whole concept of the importance of regulation of reproductive and genetic technology. This was unanimous; there were no minority opinions. Each one of us could stand in front of a camera and say, we believe that the great work done by the royal commission has now been fine-tuned to the point that Canadian society of today can be protected and Canadian society of the future can become more compassionate, because of the work that has gone on in Canada for the past seven years.

I'd just like to draw your attention to one or two points. Point number one, for example, is:

No research on human embryos should be allowed unless it is approved and overseen on an ongoing basis by a National Regulatory Body.

This national regulatory body, the NRB, is hugely important, and one of the greatest tasks before you is how this NRB should be constituted, how it can exist as an arm's-reach, autonomous body, responsible directly to the Minister of Health, in order that Canadians can be assured that there is a body constituted in such a way that as the shifting sands of research occur and as more and more knowledge in science occurs that will enable us to practise better Canadian medicine, to do more research in Canada, it will occur under a structure that is in the best interests of Canadian society. I believe we can practise the best reproductive medicine in the world in Canada. I believe we can do the best research in the world in Canada. It just has to be done in such a way that Canadian society is empowered to benefit all the way.

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For example, it says clearly in this document, over and over, that there should be no commercialization, that there should be no commodification, that there should be equal access for all Canadians. This does not occur in Canada now. If you're rich, you get good care. If you're poor, you get second-rate care, you get dangerous care. Right now there is an epidemic of multiple pregnancies in Canada. Probably we have the highest rate in the world. Why? Because very few Canadians can afford the first-class reproductive health care that some of the clinics can provide. Very few Canadians can afford that, but they can afford a lower level. They may have a drug plan that allows them access to fertility drugs.

So instead of being able to have the benefits of a top-quality IVF that can be offered right across Canada—and we have the physicians and the scientists who can do this work—because this is not funded in the provincial health care system, women who are not economically fortunate have to toe a lower rung of the medical care ladder and get second-rate treatment. For example, they'll take fertility drugs, but instead of having in vitro fertilization that would very carefully transfer one, two, or three—whatever is appropriate for that woman—embryos into her uterus, the eggs will just be released into the peritoneal cavity to be fertilized by her husband's sperm, and you can have quintuplets and quadruplets and triplets. This is happening all over Canada now. Unlike Europe and unlike the HMOs in the United States, which have now embraced optimal reproductive care for their constituents, this does not exist in Canada.

So the theme that goes through all the Health Canada task forces so far and the royal commission is that there should be no commercialization. We and our organs are not something that should be bought and sold, but if you're a poor women, you have to sell half your eggs in order to afford an IVF cycle.

There should be no commodification of our bodies. There should be equal access to the best health care for all Canadians. That ended when, on April Fool's Day, 1994, the Ontario government removed funding of assisted reproduction. But there should only be access to scientifically proven high quality, and as new technology develops, a national regulatory body must ensure that this is evidence-based, highest quality science, to protect the women of Canada and the children of Canada who will be born from these technologies from non-evidence based, unsafe technologies.

As we go down the list, the national regulatory body is mentioned over and over again. The Health Canada discussion group on the human embryo used wording such as “no...but”. For example, there should be no cloning, but let us look at the broadest definition of cloning. As an instance, stem cells are a hugely important area of research today. I would not want to inhibit stem cell research in Canada, but I would want a national regulatory body to determine which are the laboratories that can do this, who are the best scientists to do this, and what aspects of stem cell research are in the best interests of Canadian society. I believe we have to ban cloning, but certain aspects in the broadest definition, such as stem cell, which I do not consider part of the cloning that is frightening to Canadian society, should be permitted with permission from the national regulatory body.

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There are many of these scientific areas that I'm certainly not going to go into today, but I'd be very willing to answer questions about them.

Pre-implantation genetic diagnosis. The unit I work in at the University of Western Ontario was, in the early 1990s, the second-largest reproductive medicine centre in the world. We assisted women in having babies, second only to Bourn Hall in London, England, which was better and larger than us in this.

So we went into pre-implantation genetic diagnosis, whereas we were hoping to have been able to avoid the trauma of a mid-trimester genetic abortion. This is the worst procedure in medicine. It is something that certainly, when I witnessed it as a trainee, sent me to the bathroom. The nausea was overwhelming, seeing the suffering these women went through. Often the babies were born alive at 20 weeks. This is clearly something that is a horrible procedure for Canadian women and something that we should have improved upon.

So we became one of the world's leaders in the science and investigation, using a mouse model as a way that we could test an embryo at the eight-cell stage, so women who are carrying a severe genetic disease—for example, Tay-Sachs syndrome, where the child is born without cognition and dies within a year of life—would have the amniocentesis halfway through their pregnancy and basically have what is called a genetic abortion halfway through their pregnancy. The child would sometimes be born alive. It was horrible.

We thought this was good. What could be wrong with this? Well, after we did the first human in Canada—it had been done previously in England, a woman with a severe genetic disease—the media got a hold of it and they interviewed me on all these various things. People from all over Canada started requesting this. The number one genetic disease they requested this for was that of being a woman. They wanted boy children. Something we had developed for what was so.... I was as blinkered as anybody else. This was going to be good. This was going to help women, but the social advocates, people like Abby Lippman from the Council for Responsible Genetics, had been warning me. The feminist activists in Canada had been warning me what would happen with my research. They were right.

The second most common diagnosis was cystic fibrosis. There are mild forms of cystic fibrosis and there are severe forms. We can't tell between the two.

So we closed our experiments. We stopped waiting for the government legislation that would guide us, that would determine what is a genetic disease that Canadian society feels we should be doing research in, like the severe mental retardation syndromes, for example. But we need some guidance from a national consensus as to where this should go. We were hoping it would come by 1994 or 1995.

The task is before you.

I will be leaving the paper I wrote opening this.

On the social justice issues, which I know are a provincial issue, I'll be leaving you a paper called Rachel's ladders..., Rachel being the biblical mother of infertility. Women go from all over the world to Rachel's tomb to pray to have a child. There is this tremendous impellation to have a child that we cannot ignore. It will explain in detail how only the wealthy women are going to be able to access this technology unless some pressure is put upon the province to remember that there is a Canada Health Act.

The only other point I'd like to make on the discussion group concerns the concept of payment for expenses. In other words, we believe that if somebody is going to go through a donation process—whether they're going to donate sperm or eggs—it should be truly altruistic. There should be no advertisements in the University of Toronto varsity newspaper or the McGill equivalent saying, “We'll pay your tuition; just come in and be part of our stable of egg donors”. Nor should women be coerced, who can't afford an IVF cycle, to donate their eggs. There should be true altruistic donation.

It's the same thing with sperm donation. It should be truly altruistic.

As for bone marrow and blood donation, there are certain circumstances where you may have to pay travel for somebody, where you have to perhaps pay for a hotel room. We believe that sort of expense to facilitate true altruistic donation is appropriate.

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Paying somebody like “Rons' angels”, which is an Internet site.... Ron calls himself a photographer; he really is a pimp, and he pimps models in Los Angeles who are auctioned to go through an egg cycle for $50,000 or $70,000, of which Ron takes half. These women go through a medical procedure, the risks of the drugs, and the procedures to give up their eggs, and they get half. So they would get $25,000. That is not donation. That is closer to prostitution; that is selling our human bodies.

We believe there should be altruistic donation. We believe that sperm donation should be altruistic and the donor should be compensated. How we define compensation is something this national regulatory body will have to do.

It's the same thing with egg donation. Women who have delayed having children because of their career and who want to have children should have access to eggs, but we believe it should be the European model, where a women, after completing her child bearing, should be allowed to truly, altruistically, go through one cycle for the benefit of a woman who can't have a child. But it should be totally anonymous and it should be truly altruistic, not a sale model.

We went from the human discussion group.... A voluntary moratorium came out in 1995 from the government that listed—again, you have this in front of you—nine actions it was hoping Canadian physicians would stop participating in: sex selection for non-medical reasons; commercial preconception or surrogacy arrangements; buying or selling eggs, sperm, and embryos; egg donation in exchange for IVF; germ-line genetic alteration; ectogenesis; cloning of human embryos; formation of animal-human hybrids; and retrieval of eggs from cadavers and fetuses. This voluntary moratorium was not adhered to by most of the private IVF units in Canada. Most of them at least do one of these things that we had asked....

One of the reasons we had asked, for example, that you not start giving away the embryos in the freezers—there are obviously human embryos collecting in freezers right across Canada—is that there's no law.... What rights does that child have? We were hoping there could be a delay on this until the legislation came through that empowered rights for these children born of reproductive and genetic technology. That hasn't happened yet. It's very important that you do this because we have all these embryos in our freezers. The embryos in our freezers, I believe, should be donated to couples who want to have children, because that's the only way they're going to have children, many of them, especially if they are not of high income.

The other thing is there are a lot of embryos in these freezers that can be donated to research. The couple chooses which one. If they are donated to research, they must be donated to the highest-quality research by the scientists in the best position to do this.

My final overhead, which again you have, is just talking about the Health Canada advisory committee on reproductive and genetic technology, which was put together in 1996.

Madeline Boscoe is going to talk about many of the machinations of this, but my lead into Madeline is going to be.... Again, within a few months of this group coming together, there were unanimous feelings, there was consensus, that the work done by the Health Canada discussion group on the human embryo, the basic principles of the royal commission, the issues of the voluntary moratorium, were things that were all real and unchanging. The principles, which started with Patricia Baird and the royal commission, of no commodification, no commercialization, equal access for all Canadians, and huge respect for the human embryo continue.

So within our first meeting, and by our second meeting, we had consensus again, with a totally different group of people except for me—with philosophers, with people representing the disabled community, women's groups, minority communities, all coming to the same general principles that had first started with Patricia Baird's group in 1989.

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So in summation, as I turn the presentation over to Madeline, I believe there are basic tenets or principles that one national group after another and Health Canada have presented over and over again, which are unchanging. The only thing that changes, as science evolves, is that we have to fine-tune what's in the best interest in Canadian society, so that Canadian women get the best medical care possible, Canadian children are born in the safest possible situations, and Canadian scientists can do the best research.

This can all happen, but in order for this to happen, an arm's-length, autonomous, national regulatory body must be put in place to fine-tune the recommendations, so that as much can be regulated as possible. The professional organizations of Canada—the Society of Obstetricians and Gynaecologists of Canada, the Canadian Fertility and Andrology Society, and the groups that license laboratories—have worked on pilot projects over the past six or seven years, so the whole concept of licensing is ready to go. The professional organizations can do this.

We can tap into the professional organizations for their scientific wisdom and their clinical expertise, but a national regulatory body must be there to ask for this input, to synthesize this input, and to decide what is appropriate in the best interests of Canadian women, children, men, and society overall.

Thank you very much.

Thank you, Dr. Nisker.

Now we'll proceed to Ms. Boscoe.

Ms. Madeline Boscoe (Health Canada Advisory Committee on the Interim Moratorium on Reproductive Technologies): Thank you very much.

I'll try to complement Jeff's remarks as much as I can and not duplicate them. Maybe it would be helpful for you to know that as a nurse and a community educator working in a community health centre in Winnipeg, I've been working on this file since—I hate to say it—before the birth of my children even. We brought together women with infertility issues and providers, ethicists, and physicians, to look at this issue. Out of that work came our call for a royal commission, to leverage these issues into a national debate.

I can't tell you how important and exciting it is for me to be here today. I must tell you that when I explained to my 12-year-old daughter that I was coming to talk to the health committee of the House, she didn't quite understand the difference between the Senate and the House. So I'm going to make her do a little essay on governance when I get back.

This is very important and visionary legislation that you will be working on, and it is totally appropriate that we start our new century with this discussion.

The Health Canada advisory committee on reproductive and genetic technologies that Jeff alluded to has been in place since 1996. We've lost a couple of members, but otherwise that group has persevered through a variety of ministers and deputies, which shows the commitment and concern we have for this area to be left in what I call the grey zone of regulation—individual professions, individual providers—to be respectful even of the federal-provincial discussions and to be left to the discretion of provinces.

My experience has been that Canadians are looking for leadership at the highest level, because these are about values and vision, not just about the temperature at which sperm are kept in a fridge. I would encourage you to keep that high vision, as you go about your deliberations. I understand and anticipate there will be onerous ones, but we are creating a path for the seven generations to come after us, as our aboriginal communities would ask us to remember. I think we need to keep our eye on the big hill, as it were.

My comments are drawn from the deliberations of the committee in the past and our presentation on Bill C-47 to this committee in 1997. I also want us to think about and draw on the learnings from the Krever commission, because if we think blood caused problems, playing with people's reproductive lives and possibly their genetic lives has nothing on Krever.

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I suspect the material will come before you that in Health Canada's communication with the public on their understanding about legislation and regulation, one of the most important facts I gleaned is that many people thought, given how important these ideas were, we already had legislation and regulation, and there was somebody minding the stove. In my view, there is no one minding the stove.

The legislation you're putting before the Canadian public is about that. Canadians want a public face and somebody they can see is responsible, to whom they can turn to see where their issues and processes will be put into place—not just the professional community but the consumers and the broader constituency.

Although we had a conference call last week, our advisory committee has not had an opportunity to review in detail the specific language within this bill. Our plan is to ask the committee to come together for a couple of marathon weekends, yet again, to provide you with written detailed commentary, if that would be of help to you in your deliberations. I'd ask for some feedback on that.

When I look at the preamble and some of the conversations we've had in the past, I think it is important to mention to you that we had urged the government to put in language around what would be called the precautionary principle. We need to go quietly and gently into the text of the preamble. We need a kind of “no...but, let us sort it out, let's look at it” initial approach. The precautionary principle we're talking about in managing the environment is exactly the same one we need to be looking at when we're managing reproductive and genetic technologies.

In the area of surrogacy, we had recommended the use of the words “preconceptional arrangements”. Though we are very passionately supportive of the issue of a non-commercialized model, we felt in our deliberations that even altruistic activity had the aspect of commodifying the children that are being born. Their interests need to be developed and expounded upon. We need language, in both the legislation and the regulations that come after, that puts caution into that discussion.

We're very excited to see the recognition in this legislation of the possibilities of an open, identifiable donor system. You'll hear, I'm sure, from children born through artificial insemination by donors—either ova or sperm, primarily—of their need to not only know their genetic histories, but to have the opportunity, just as adopted children do, to know and connect physically and knowledgeably with their donors. We've had some discussions with the advisory committee, and we believe that a programmatic, voluntary system is possible. It's been engaged in other jurisdictions, and it's a possibility here in Canada. We're very happy to see the legislation allow for that possibility under regulation.

I'm just letting you know that there will be groups before you saying these very same things.

The other piece that we think is really important in the legislation is we talk about setting up various types of databases to monitor outcomes, etc., so we can get a real handle on what we believe the possibilities are and what those actualities are. As we move into evidence-based decision-making in medicine, these databases will be important.

However, if the Privacy Commissioner were sitting right here, he or she would be saying to you that we need to make sure, when we implement these things, we separate data collection from record keeping. We need very clear watchdog activity. As you know, the privacy legislation around health and health records is still under discussion, but this will be an aspect of your deliberations. We have given some thought to that, if you'd like more information.

I want to speak to you a little bit more about the agency, because I think it's very important, in this area of regulation, deregulation, and the areas between, who's responsible for what. I think the Krever commission was a story about who was responsible for what. A national high-level regulatory body is the kind of mechanism we've been looking at in the advisory committee, one that doesn't replace the ultimate responsibility of the Minister of Health in government, but provides a high-level discussion.

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We are very excited to see in the draft legislation wording that shows that the regulatory body would undertake broad policy advice to the minister, that it wouldn't just be, as in my example, the temperature sperm are kept at, and that it would look at licensure and regulation from a human rights and equity and equality sensitivity model, doing gender-based analysis from the get-go.

This means having an advisory committee that isn't just about scientists or about having medical practitioners; it's about having social scientists, ethicists, consumers, and community members involved so that we get a committee that actually gives us a picture, in a broad sense, of an approach. Then and only then do we need to bring in specific regulations and inspectors on particular aspects, once we've taken a broad look at issues.

We think the regulatory body has to look at very rigorous ethical and social assessments of the technologies as part of their deliberations, helping us understand what is research, what is applied clinical assessment, and what is a treatment or intervention that can go out into medicare and into a publicly insured system. We need to bring some precision to that thinking. So often my frustration with much of this has been that people have been participating in huge research outcome studies without even their informed consent, because there was really no study there. This is still a big issue because of the number of these activities that take place in the private for-profit sector, where our regular peer review systems are no longer in place. This is particularly worrisome to me as an individual.

The other piece this national regulatory body should be engaged in, we think, is ongoing public dialogue with the Canadian public as a whole, not just with the interested stakeholders who are providing service. It should be a public place for people to send their letters, their concerns, their complaints, and their queries, a place for people to interface in policy development and future planning.

This is the place where a national code of practice and counselling standards would be. This is where we would decide whether we're talking about embryo donation, embryo adoption, and how that mechanism that Jeff so passionately argued for would actually take place.

I also want to take a moment to say that, in our view, the legislation is only one part of what we see as a very necessary, comprehensive program managing sexuality and reproductive health in this country. We need a multi-phased program that will address prevention issues. When I talk about prevention, I'm not just talking about sexually transmitted infections and the disaster of chlamydia in terms of infertility. I'm also talking about environmental contaminants and their relationship to sperm.

There's a phenomenon we're seeing of a very significant class distinction in reproductive rates in women. We see significant postponement of pregnancy for young women as a result of their trying to get an education and maintain a career prior to having children, and then extremely high rates of unplanned pregnancy and teen pregnancy in lower-class and working-class families.

We need a program to deal with this. It's not a legislation issue, it's not even a regulation issue; it's a program issue. Although Health Canada has tried to develop a sexual and reproductive framework, we need dollars and programming activity at a community based level to get services for teenagers in place so that they're not afraid to go someplace, and their confidentiality rights can be maintained. Other aspects of prevention are really an important hand in glove for managing this piece.

The other comment I'd like to make is that our advisory committee's title is New Reproductive and Genetic Technologies. This bill is absent, as is necessary, on the issue of regulating genetic screening and genetic technologies in this country, and I think it is necessary for this bill to go forward, but I will alert you that our advisory committee is well aware that there is a proliferation, through the use of reproductive technologies, of genetic testing and screening, including prenatal implantation and diagnosis. Our friends and colleagues in the disability community are quite concerned that we're reinforcing, ipso facto, a prejudice against disability, which we will need to address at some point. Our advisory committee is working to explore ways to do that in the future. We'll probably be coming back before you with some ideas.

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The other piece, to speak to the issue that Jeff so eloquently looked at—and again, it's taking a programmatic look at these issues—is that much of this technology right now is in the private for-profit sector. As a result of that, equality rights around access to infertility treatment are not being addressed.

It is frustrating to me, as a health provider, that between our relationships at both the federal and provincial level we have been unable to figure out some mechanism where effective, safe, and equitable procedures can come into place in medicare. I hope you might lend your views to this and provide the minister, if that's a fair thing to ask for—maybe I'm speaking out of place here—with some thoughts on how to do that as we look at medicare and think about these issues in the future.

With that I will end my remarks. I look forward to your questions. Thank you.

The Chair: Thank you very much, Ms. Boscoe.

I think I can speak for the committee when I say that your group's review of the draft legislation, with comments either to be brought back to us or sent, would be very helpful. Your remarks this morning show that you have done a broad range of thinking over a period of time and will approach this draft legislation with far more expertise than we have. Therefore, what you can help us with, we would be grateful to accept.

Ms. Madeline Boscoe: Okay. I'd be glad to.

The Chair: Thank you.

We'll move now to questions from the committee.

Mr. Manning.

Mr. Preston Manning (Calgary Southwest, Canadian Alliance): Thank you, Madam Chairman.

I'd like to just add our thanks to that of the chairman's, not just for appearing here today, and for what you've said, but because it's obvious you've spent a lot of time on this issue in the past, and we're just pleased that you're willing to share this with us.

I think you understand from the terms of reference of this committee that there are four things we have to do at the very beginning. One is to decide what assisted human reproduction procedures should be prohibited and what related research—what that means, and what should be prohibited. We're also then to say what assisted human reproduction procedures should be regulated and what related research should be regulated. That's the basis of what we have to do.

In fact, can I circulate my little brainwork here to our friends?

My first question pertains really to the prohibition side, because you, as members of the advisory committee on a moratorium...really is a prohibition. I'd like to ask how your advisory committee monitored the nine procedures that were subject to the moratorium, voluntary moratorium, I understand. When you found non-compliance with those nine things, what were you able to do to stop that activity? In other words, from your experience in operating a moratorium, what does that experience suggest to us with respect to the establishment and enforcement of prohibitions?

Ms. Madeline Boscoe: I would say we used an educative model, and probably the kind that happens in corridors rather than committee meetings. We sent letters to kind of poll providers and get a sense of what they were doing. We used media reports. We had letters from consumers asking about something and then realizing that was part of the moratorium.

It's my own view, I guess—the committee has never made a position statement on this—that it was quite a frustrating process. And that's partially why the legislation is before you. I think if we had found a coherent model that would allow a regulatory consensus process, it would have happened, but because these things are sitting in private, for-profit environments so that we can't use operating space to control whether or not you do something, those kinds of mechanisms can't be brought to bear. We need something of a higher nature.

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Jeff has done a lot of work with policy development within the profession itself, and maybe he could add to that.

Dr. Jeffrey Nisker: Again, it's mostly been an education, where we would try to explain why we think these are dangerous. I could give you two examples.

We look at surrogacy. The Society of Obstetricians and Gynaecologists of Canada has an ethics committee. At that point in time I was chair, but we invited Sanda Rodgers, who at that time was the Dean of Law at the University of Ottawa, to put together a task force of members of the Society of Obstetricians and Gynaecologists of Canada to look at surrogacy, because this had been prohibited. That group actually came up with an even more stringent view of surrogacy, saying that preconception arrangements are impossible to enforce, are impossible to agree to, do not protect any children born of preconception arrangements. And the president of the Society of Obstetricians and Gynaecologists wrote a letter to people who were participating in preconception arrangements and said this was inappropriate, that their professional organization has said this is inappropriate.

There was no law, but the professional organizations have a tremendous influence. If you act against the professional organization, they can pull your membership. And if you get into legal problems, the first thing your prosecutor will say is “They've pulled your membership from the national society, you know”.

So the Society of Obstetricians and Gynaecologists of Canada and the Canadian Fertility and Andrology Society can be educators for this type of legislation and can be supervisors of this legislation once the power of legislation through a national regulatory body....

However, let me look at the dark side of this—or the other side of this, I should say. Let us look at egg donation. I'm using “donation” in scare quotes. Let's look at egg selling—let's call it what it is.

At the time that our advisory committee.... If the moratorium came through in 1995 and we were put into life one year afterwards, at that time egg selling was still new, because just up to that time everything was still basically done within funding—in Ontario especially, which is where most of the clinics are. So there was no such thing as egg selling in Ontario because there was no need, because everybody got free IVF. So a woman wouldn't have to sell half her eggs to get an IVF cycle.

Since that time it has become astronomical. Since the tenure of the advisory committee on reproductive genetic technology, there is probably a hundred times, if not a thousand times, more egg selling going on in Ontario than before we came into being.

So were we able to enforce the voluntary moratorium? Absolutely not.

Ms. Madeline Boscoe: I think there is a dike metaphor here, trying to hold your finger in the dike and....

Mr. Preston Manning: I gather what you're saying is that the sort of the educational model on that, while it's sort of helpful in a general sense, is not nearly adequate to the task.

Let me take a specific thing, and I guess this is in your area, Dr. Nisker. Where do pre-implementation genetic diagnosis and therapies based upon it fit into this? Is that something to be regulated? You indicated that this activity can be used for good or it can be used for evil. Therefore, does that suggest certain prohibitions, that certain things should be prohibited, certain things regulated? How would this regulatory system deal with that, both as procedure and research? What's the point of doing the diagnosis if there are not genetic therapies permitted down the road?

Dr. Jeffrey Nisker: I think very little needs to be prohibited. I think very much needs to be regulated. And this is an excellent model, the pre-implantation genetic diagnosis.

If we knew at this point in time what Canadian society felt was an absolutely horrendous burden for a child and the parents of that child to manage.... I use Tay-Sachs syndrome as an example because this is clear to me: a child who is born with no cognition and dies within the first year of life. This could be compassionately prevented through pre-implantation genetic diagnosis instead of the current model, which is these genetic abortions halfway through the pregnancy.

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I believe this is an advancement of science, using reproductive and genetic technology, but it must be regulated by a national regulatory body so it won't be used because I happen to want to have a boy or I happen to want to have a girl or I don't want my child to have to wear glasses or I've got a little bit of asthma.

Mr. Preston Manning: How do you stop that from happening if the parents get the information from the diagnosis and basically the decision-making rests with them? In practice, how would you facilitate the good use and stop the bad use you've referred to?

Dr. Jeffrey Nisker: I believe a national regulatory body could get information from the Society of Obstetricians and Gynaecologists of Canada, the Canadian Fertility and Andrology Society, the Canadian College of Medical Geneticists, and say that these ten genetically diagnosable problems are of such a burden that we could, as a compassionate Canadian society, offer these; however, these others are not.

If a practitioner offered them, then one of these societies would say “You are not acting according to the rules, so we are taking away your licence”. The colleges of physicians and surgeons in the provinces could revoke the licence of someone who was practising in these areas. That's a very powerful deterrent for health care practitioners, for physicians.

I believe that sort of deterrent could allow, with a national regulatory body making the rules and the professional organizations supplying information and then revoking the licensing of people who are not.... That is a way we could have regulations that are very powerful without having to put prohibitions into legislation that would carve things in stone and take away from the ability, maybe three years from now, to act in the best interests of Canadian society based on new scientific developments.

Mr. Preston Manning: One last one? The chairman is frowning at me here.

Ultimately, we have to get to the regulatory body, and you obviously both are supportive of creation of a national regulatory body. If there were one distinguishing characteristic that body should have, particularly from your perspective, what would it be? Would it be its independence, arm's length from the government and everybody else? Would it be its transparency? Would it be its scientific competence? Would it be its facility to let rank-and-file people have standing before it? If you had to give us one characteristic of that body that you absolutely felt had to be there, what would be your highest priority?

Ms. Madeline Boscoe: From both the conversations around the advisory committee and public conversations I've been involved with, I think the idea of having it report directly to the Minister of Health, so that the minister is still on the hook.... That's probably not the right metaphor. A publicly elected official should be seen as ultimately responsible, and it should have a transparency and social science perspective, not just a biomedical one.

Sorry I couldn't do it all in one.

Mr. Preston Manning: Okay.

Jeffrey.

Dr. Jeffrey Nisker: I believe that the expertise from the national professional organizations should be used by the national regulatory body, but the members of the national regulatory body should represent the broadest aspect of Canadian society, with perhaps only one or two people from the medical or scientific community to help translate the information coming from the professional societies, who should be that part of it that provides the scientific background and implementation.

The Chair: Thank you, Mr. Manning.

Mr. Charbonneau.

[Translation]

Mr. Yvon Charbonneau (Anjou—Rivière-des-Prairies, Lib.): Madam Chair, I would like to ask a question about the prohibition of germ-line genetic alteration proposed in the draft bill. That would be prohibited.

• 1200

I would like to hear your comments on this matter, and please tell us what is being done internationally. How do other countries deal with this question? If the alteration is beneficial, if genetic alteration can prevent a generative disease in a child and if this advantage is transmitted to further generations, what is the problem? Why should such an alteration be prohibited? I would like to know the reasons for this prohibition. Would it not be better to regulate this alteration rather than to prohibit it?

[English]

Dr. Jeffrey Nisker: I'm sorry, I didn't get the translation. I think I understand what you say in French, but I'd prefer to have a capsule. I wasn't getting an English translation. I think I understand what you've said.

Mr. Yvon Charbonneau: If the alteration is for the best of the individual and that improvement will be transmitted to his descendants, where is the problem? Why should we prohibit this alteration?

Dr. Jeffrey Nisker: You're absolutely right. If that was the only possible thing that could come out of germ-line alteration, then there wouldn't be this huge terror all of us have about germ-line alteration. What we're more concerned about is all the things we don't understand yet, that once we put them in the germ line will pass on from generation to generation, things that might not show up till two or three generations later.

Germ-line therapy is one of the most fearful of the technologies to me and to most of the people in this, as opposed to stem cells, which we see can be very exciting and help people who are living today with these problems.

The germ-line therapy we're not ready for. If we ever would be ready for it, it has to be studied for many generations of primates before we ever get to consider it. Our knowledge in this area in science, our ability to guarantee to the Canadian public the safety of germ-line therapy, I believe is generations away.

[Translation]

Mr. Yvon Charbonneau: If this is the case, would it not be better to regulate this practice rather than to prohibit it?

[English]

Should we not better regulate it rather than prohibit it?

Dr. Jeffrey Nisker: Germ-line therapy is one of the ones I'm really worried about. It would depend on how the national regulatory body was structured. In the working groups, the Health Canada discussion group and every other panel I've been on, there's always been consensus that we should prohibit germ-line therapy because of the fear.

I would need to have some real guarantee and some reassurance about who's going to be on the national regulatory body, and the powers of the national regulatory body to prevent this is in all private units, in all aspects, to move it from a prohibition to a regulation. It's one of the ones that really scares me.

Ms. Madeline Boscoe: Could I add to that?

The Chair: Go ahead.

Ms. Madeline Boscoe: I want to concur with Jeff. I think we've debated this long and hard. I work with a lot of communities who are looking for quick cures and solutions. But as we get into this dialogue, inevitably people come out with, “We're not ready yet”. I think too often we've made government policy, particularly in medicine, based on what I call the false promise rather than the reality. If we look at the fact that somebody thought it was a great idea to bring rabbits to Australia, and somebody else thought it was a great idea that fetal monitoring in pregnancy was going to improve outcomes for women, and all it's done is drag the Caesarean rate up to 25% to 40%....

We do not know what we do a lot of the time. And unlike unnecessary Caesarean sections, where you can get up and walk around—you may have scar tissue but you're still walking—we're talking about changing the fundamental building blocks of what goes on. Anybody who has a dog that's been inbred knows what happens when you starting farting around with genetics. I wish I could say that my confidence with humans is that we always go boldly to create wonderful ideas and never make mistakes, but we do. These are mistakes that we may well afford, but the children who are going to be born of our children's children's children may not. I think we need their consent before we do anything.

• 1205

[Translation]

Mr. Yvon Charbonneau: Thank you. I would like to put a second question.

A few weeks ago, we learned in the newspapers about research where embryos had been constituted from the genes of two mothers and one father. Mitochondria from one mother had been transferred into the ovum of the other mother. Thus, we could say that this includes the genetic legacy of two mothers and one father. Would this kind of transformation or alteration of genes be prohibited or should this activity be regulated?

[English]

Ms. Madeline Boscoe: Yes.

Mr. Yvon Charbonneau: Yes what?

Ms. Madeline Boscoe: Yes, I think you're referring to the mitochondrial DNA transfer. Yes, we haven't discussed it at the advisory committee, but it would actually meet the standard that's in here around prohibition.

Mr. Yvon Charbonneau: Is it a regulation or a prohibition?

Ms. Madeline Boscoe: It would be a prohibition, if I understand it.

The other thing I want to say is that the advisory committee is very supportive of these prohibitions. We debated long and hard whether they should all be left in regulation. We thought that in fact these prohibitions were of such import that they needed the strength of law. They also provided longer-term advice and test for technologies and ideas that come forward.

I read the transcript when the honourable minister was before you, when he talked about drawing a line in the sand. Often when we're trying to develop policy in what looks like chaos, these first statements, these first ideas, become a reference point for those who come after us to say, that's what they were thinking about; they were talking about human dignity there. Right. They meant we shouldn't be buying and selling human body parts. Yes, I get it now. It becomes that reference point.

So these prohibitions I think also have an informative role and provide, for lack of a better word, a Jell-O mould for issues that come after us.

Dr. Jeffrey Nisker: This is a good example of how, as science changes, we have to be open to rethink things, and why we should regulate as much as possible, because six months ago I would have agreed completely with everything Madeline said, and now I'm leaning to go into regulation on this particular example you gave. We have to find wording for how we can make this clear. I believe many of these things should be regulated, not germ-line therapy that is going to be passed on from generation to generation, but, for example, muscular dystrophy. There are ways you can even use, theoretically, an artificial chromosome that is not capable of reproducing, that is not capable of being passed on, but could theoretically cure muscular dystrophy. It's the same thing with mitochondrial transfer and some of these other areas.

So if we could find a way that we could...and we have to do this very carefully; this has to be done strictly in a scientific session for generations. This cannot go into private clinics. This cannot be standard care. We're talking about research, but it may be possible that some children with muscular dystrophy will be able to walk by doing this type of technology. It may be possible that women can be offered options to this genetic termination procedure for things. There may be all these possibilities. So mitochondrial transfer and even the concept of an artificial chromosome, as long as it cannot be passed on, are things that have wonderful scientific potential. This is where the “no...but” goes.

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I'd like to see all this type of work on the clinical setting or even the research setting banned, disallowed, in Canada. Can that be done by a national regulatory body that could then assess each individual situation, or does this have to be prohibited? I'm not sure.

The Chair: Thank you, Mr. Charbonneau.

Mr. Ménard.

[Translation]

Mr. Réal Ménard (Hochelaga—Maisonneuve, BQ): Let me take advantage of the presence of two persons who are very knowledgeable about these things to put some very basic questions. As a bachelor who does not know much about these things, let me deal with some basic realities.

Regarding the use of gametes, could you explain the difference between artificial insemination and in-vitro fertilization? We will have to use these terms to do this work, and I would like to avoid any confusion.

Also, regarding your concerns, what is the difference between cloning for reproductive purposes and cloning for therapeutic purposes? I would like to see the difference clearly once and for all, to help us in our work.

Finally, you said at the beginning of your introduction that a distinction had to be drawn between the prohibition of stem-cell use and cloning. Please clarify this for us, and I will come back with more specific questions about regulatory organizations. Madam Chair, you are happily married, monogamous, etc., but I really know nothing about these things. So, my mind should be clear about this once and for all.

[English]

Dr. Jeffrey Nisker: I'll start with the science and I'll leave the regulatory body to Madeline. In vitro fertilization is a very simple technique, as far as surgical procedures go, that was developed almost 30 years ago now to bypass a blocked fallopian tube.

If a fallopian tube was blocked, women used to have to go through these horrendous operations that would take three or four hours, and the chance of having a child would be 5% or 6%. More often than having a child, they would have an ectopic pregnancy, which is an emergency surgical procedure, and they'd have another operation. They'd have operation after operation. Some women are still having that because they can't afford IVF. That's another story.

When it came in, IVF may have come in too fast, and we may have got lucky here. I'm not saying that the way IVF came in quickly was necessarily the best, but we got lucky. A very compassionate, less morbid procedure came into being that allowed women who could not have children to have children in a safe manner.

We must have a registry in Canada that follows all children born from assisted reproduction, and we do not have that. They do have it in Europe and in Australia now. There is a huge follow-up and everything seems to be wonderful.

So IVF itself seems to be a reproductive and genetic technology that helps. The royal commission said that IVF should only be done for blocked fallopian tubes, but that was from 1989 data.

In recent data in the Journal SOGC—Society of Obstetricians and Gynaecologists—in February of this year, a unit from Montreal has now confirmed the data from Europe, Australia, and the United States that has shown that IVF is extremely useful. It can give pregnancy rates between 20% and 30% legitimately. Some clinics are talking about 40% for women with blocked fallopian tubes, damaged fallopian tubes, endometriosis, unexplained infertility...and with the advent of ICSI, where you take sperm and put it in the eggs, for male problems. The long-term follow-up has not passed more than eight years with that ICSI type.

So there's a lot of good that can come out of this.

If you start going to some of the corollary technologies like cloning, we don't have any long-term data. We don't even have a scientific question good enough for us to say should we ever do this? The advisory committee wrote to every scientist in Canada, every university. We even widely enough circulated it to all the private clinics that could be involved and said, is anybody contemplating cloning? Is anybody doing cloning? Does anyone plan to do human cloning even in the next five years? Everyone said no.

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We asked whether anyone could imagine a scientific question that might make cloning important to Canadian society. Everybody said no. When you look at the cloning of reproducing identical human beings it is very clear.

Canadian society looks at cloning one way. If you look at the strictest definition of “cloning”, of reproducing cells, it is possible that some people would include stem cell research within cloning, and that's what we have to make sure we don't do. Because stem cell research under proper controls and proper research, under close supervision and follow-up, can I believe one day create human organs. It can one day obviate xeno-transplants, but that's different.

[Translation]

Mr. Réal Ménard: We understand, but I would like to know what you mean when you talk about stem cells and cloning. Is the stem cell the first cell that leads to a pregnancy? What is the difference between therapeutical cloning and reproductive cloning? I think that we readily understand what reproductive cloning is, but could therapeutical cloning be done, for instance, when someone has a pancreas problem; could a cell be taken from his pancreas to heal his illness? Please explain clearly the difference between these two concepts.

[English]

Dr. Jeffrey Nisker: The difference is in the application. The difference is in the “why” we are doing this. If you're saying we're going to use stem cells so that people who are dying because they can't get a kidney transplant...that they are going to have a kidney, or for people who are getting Parkinson's disease and spending 30 years of their life totally locked in.... It is only compassionate for Canadian society that we explore ways of unlocking 40-year-olds living in a Parkinson's cell.

That's a reason to do stem cells. You're right. Yes, this is a cell that could become a human being if we let it go, but that's not what's going to happen to this cell. It is going to be used to try to turn it so that it's going to produce a pituitary gland cell or a kidney. It is not going to be used to create another human being. It is not going to be taken to the point where you have two cute little 14-day-old embryos. It's not going to be taken that far; it's going to be, very early in the process, altered for the scientific reason.

So it is the application. You're quite correct that a specific technology is often neither good nor bad nor right nor wrong. It's the application that can be moral or not moral. We would like to make sure there are only moral applications of this reproductive and genetic technology going forward. Cloning most of it, I believe, is quite immoral. Stem cells, which I don't really consider as cloning in the way Canadian society worries about cloning, can do very well for us as a Canadian society under appropriate restriction and guidelines.

[Translation]

Mr. Réal Ménard: All right. I have a final question.

I think that you know a bit about the federal public service and its various regulatory organizations. I am aware of the fact that the committee's job is to gather information and to present to the minister a much more finished framework than what can be done today, but could the ideal regulatory organization, the one that would fulfil all your wishes, be something similar, for instance, to the Patented Medicine Prices Review Board?

You know that this organization applies certain regulations, files a report every year and follows up on the trends of patented medicine prices. Please give us a concrete reference that could help us understand the objectives.

[English]

Ms. Madeline Boscoe: You're going to have to forgive me in that I don't have the technical language the federal government uses at my disposal today. But, yes, in a similar way we looked at special operating agencies that were outside of government entirely. A regulatory body, say, like the CRTC we felt was too onerous.

I didn't mention this in our remarks, but we felt the makeup of this committee was very important, and that it be made very clear that they had no one in there who was in a conflict of interest on a commercial and personal level. Some of the models that are in place with the professions or the corporate sector weren't going to quite work in this environment, because there are different interests at play. That's why we came up with, within government, reporting to the minister, so that large procedural, policy, and regulatory issues could be dealt with immediately, while maintaining a broad enough make-up that some of the issues I raised could be addressed. I hope that helps.

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The Chair: Thank you, Mr. Ménard.

Ms. Boscoe, you mentioned you looked at some models. Is there any paper on your examination of those and your conclusions?

Ms. Madeline Boscoe: Only in our minutes, and in fact, we stopped. It wasn't clear where the legislation was going. We decided we would take a moment and see what was happening before we started writing for things that may not be called upon.

The Chair: Thank you. I just thought if you had a bunch of paper, you might forward it to us.

Ms. Madeline Boscoe: I could pull it together, I think, and it could be something that, with your interest, we would put a little more energy into.

The Chair: Thank you.

Dr. Jeffrey Nisker: Madam Chair, if I may, we did still go with the principles that went before us, that it has to be independent, arm's-length, and report directly to the minister. What we found is that we don't have the understanding to use the language. But we will try, if you want us to, to go further and look at exactly what the national regulatory body should look like.

The Chair: Okay. Thanks.

Madame Sgro.

Ms. Judy Sgro (York West, Lib.): Thank you very much. Thank you for the great work that I can see you've already done on a very complicated issue.

Dr. Nisker, you talk about compassionate grounds. How would we have to define that? You and I understand what we mean by compassionate, but it may be different in someone else's eyes. Would we not have to define very clearly what we would refer to as compassionate?

Dr. Jeffrey Nisker: That's an excellent question, and it forms the basis of much of my research.

Compassion means to “feel with”, and it would be arrogant for us to assume that we could really feel with, for example, a woman faced with the difficulty of having a child, faced with being infertile, unless we were in that situation. As someone who has been a practitioner in the field, who has held the hands of many women going through this, I can approximate empathy, but it would be arrogant to think I could ever have empathy. I could, however, try to have compassion. We can try to “feel with”.

The way I've gone about doing it is by writing plays, and I have some tapes I can leave behind of a play that addresses pre-implantation genetic diagnosis and a play that's actually touring Canada now with a professional cast, looking at the multiple issues of reproductive and genetic technology, from surrogacy to oocyte donation. Through characters—and I've had the benefit of actors from Due South, Degrassi High, and the like in this particular play—I believe that's how we can start approximating compassion. You may not feel what I feel, but you can witness a professional actor's interpretation of what it must be like to be there.

If we're using compassion, as I believe we should, as the theme for how the legislation will come and what should be regulated, the way to do it is the way the process has done it since 1989, by hearing the stories of the many groups of women, of couples, who have gone through this. Unfortunately, there are not enough children yet, and the studies have not been done on children. They're not going to be done in Canada, because we don't have the mechanism, but they are starting to come now from Europe, studies on the children who are born of assisted reproduction.

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We read these stories, we feel it, and we give our best guess.

The best societies, I believe, are the most compassionate societies, and we have to sit back and imagine, if we're going to be a compassionate society, what that would be. Equal access to health care is a no-brainer. How can a society be compassionate if they say, if you're rich, you can have a child, if you're poor, you can't? That's an easy one. Some of these other ones are much more complicated. If you look at PGD, I don't believe that it's compassionate to say, if you're rich, you can have a child who doesn't need glasses. What does that say to the people with glasses? If we start going the route of enhancement, of designer children, what are people with disabilities going to see in technology's mirror? More importantly, how are people who are “normal” going to see people with challenges in genetic technology's mirror?

Barbara Catz Rothman wrote a book called A Tentative Pregnancy, Prenatal Diagnosis and the Future of Motherhood, where she contends that with each new genetic technology, women become more and more impelled to seek amniocentesis, so they're not considered bad mothers if they give birth to a child living with a challenge.

Anyway, I do these plays to try to open it up, but it never answers any questions; it just raises them for you.

Ms. Judy Sgro: Thank you.

Ms. Madeline Boscoe: Can I just add something? I think this fits in very much with our thoughts at the committee that we need a programmatic response as well as a legislative response. Part of the education and health promotion programming Health Canada's often engaged in has contributed to a better public good, which is dialogue, understanding, empathy, and some consensus.

I use the example of the AIDS initiative, which really helped protect us from a significant backlash against people with AIDS, as a result of the Canadian public understanding what was really going on. Those programmatic processes running in parallel are a really important way of addressing some of the questions that I think are behind what I hear you asking. I think that piece is very important. The law is very important, it's a teachable process, but we've got to put back into our children and adults some empathy and understanding of what these technologies mean, so we can govern the next set that comes down the tube, as it were.

Ms. Judy Sgro: Thank you.

The Chair: Judy Wasylycia-Leis, please.

Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): Thank you, Madam Chair, and I also want to thank Jeffrey and Madeline for their presentations today.

I'm going to start by asking a rhetorical question, which you may or may not want to answer. Aren't you frustrated at the fact that you've been at it for so long, building on a consensus that emerged out of the 1993 Baird commission, that was reinforced in the process concerning Bill C-47, that is reflected in your committee struck in 1996, and you say it's still holding today, yet here you are presenting to a health committee dealing with a draft bill that is not going to report until, according to the broad parameters, January 2002, which means legislation before the House sometime in, maybe, 2003, which means a whole decade or more has passed since so much work was done—and it was clear at that time that we had to act urgently? That's the rhetorical question, but related to that are some other questions.

Given what has happened in the last ten years, the fact that we now have a multibillion dollar NRT industry, the fact that we've got less appetite for tough regulations, which you continue to recommend and many support, the fact that so much damage has been done to our universal health care system and provinces have delisted important services, how are we, whenever we get around to this bill, going to actually do anything meaningful that counters those market forces and ensures that we've got clear prohibitions and a tough regulatory body that can do the job required if we're going to have any kind of meaningful public policy in this area?

Ms. Madeline Boscoe: I'm actually going to quote Mr. Dalton Camp in The Hill Times yesterday—somebody sent it to me by e-mail. It was about how women's health becomes the way in which public policy comes back on the government agenda. It was a bit corny, but it worked for me.

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It's been frustrating, it's been scary, because I see stories and the proliferation of multiple pregnancies, the number of premature births that has meant, and the number of children who are in intensive care because of that. It's extremely frustrating to me.

As an activist participant in our democracy, it gets frustrating, it is true. Our committees met at the will and with the timing of the House and the ministers who have been involved, and we have to have patience with that. I think the fact that that committee has stayed and has continued to provide direction is an example of not just the tenacity but the concern of those members.

On a personal note, I started a community action group on midwifery in Manitoba the same year we started our working group on reproductive technologies. Midwives are finally being hired into the community health centre, which I am working on, and we are providing midwifery services to women from Bosnia with a Bosnian midwife.

So it does take the long view, but things that are really important bubble up, and it has bubbled up again. I'm just hoping for champagne this time.

Dr. Jeffrey Nisker: It's more than frustration. I feel this sense of loss for the women since 1993 who have been coerced into selling their eggs, who now are taking care of quintuplets because they were not allowed to have IVF, which would have prevented that, and the children who are blind or have cerebral palsy because their mothers could not have access to IVF; for the women who had to go through a procedure that nobody talks about, called embryo reduction, where women who cannot afford IVF and just have their eggs scattered with the drugs...when they have quintuplets, they often choose to have three of their fetuses killed with potassium hydroxide to give the other two a chance for a normal life. These women carry this guilt, this trauma. The fact that in this length of time, pre-implantation genetic diagnosis, which may have helped a lot of women, say, with Tay-Sachs now...they still have these mid-trimester genetic abortions. We could have helped so many women in the past eight years who we have not.

On the other hand, when you say Bill C-47, that didn't have a national regulatory body in place. That would have been a problem. That national regulatory body must be in place in order for the good things to happen and for us to keep as much as possible in the regulatory framework, which allows us to respond to new good things that happen, rather than carve everything in prohibitions, which are so hard to change.

Ms. Judy Wasylycia-Leis: I know you both will want to go back and check with the advisory committee as a whole about this draft bill. Can you each offer us any thoughts today, though, in terms of your professional advice on the draft bill before us? Are we on the right track, and if we are, what's to hold us from not moving more quickly on this and getting the bill straight into Parliament so we can get it enacted and deal with some of the concerns you're both raising?

Ms. Madeline Boscoe: My sense is, from the discussions we've had, most of the elements are here, and there's lots here from the original bill that we were totally in support of.

There is maybe a bit of languaging. As I mentioned to you, we probably would like to see something about a precautionary principle in the preamble, and a few other little bits. But it's a useful question, actually, and for the committee, whether or not it could just go back to....

Dr. Jeffrey Nisker: Absolutely. This bill is on the right track. I'm concerned that it doesn't say the national regulatory body is going to be autonomous, reporting directly to the minister. I think that's important to know up front before we can be assured that all these things should be regulated rather than prohibited. So I think that is a piece that we still need.

Some of the language around cloning needs to be teased out a little further. But overall, this is wonderful, and we've waited so long for it. The sooner it could go, the better, as far as we're concerned.

• 1235

Ms. Judy Wasylycia-Leis: How fast can you give us the official word from the advisory committee about this bill and any suggested amendments so we can then push from this end?

Ms. Madeline Boscoe: I'm looking at the time. I had talked with the committee about coming back together at the beginning of September, knowing what it's like to try to organize anybody's time in Canada in the summer—which actually is a sign of our health that we do try to do this. So if we said the end of September...?

Is she serious about a date, you guys?

Ms. Judy Wasylycia-Leis: Don't ask them.

Ms. Madeline Boscoe: Well, I've been at committee meetings with you before.

Ms. Judy Wasylycia-Leis: Yes, I know. That's why I'm saying don't ask them.

Ms. Madeline Boscoe: Okay, how does that sound?

The Chair: Thank you, Ms. Wasylycia-Leis.

Mr. Dromisky.

Mr. Stan Dromisky (Thunder Bay—Atikokan, Lib.): Thank you very much.

I'm very impressed by the information that has been presented in such a clear, concise manner. I certainly learned a lot this morning. However, I'm not going to really ask a question pertaining to the content of your delivery.

First of all, I'd say that you are both excellent teachers. I'm hoping the professor has as many contact hours with his students and fewer contact hours with test tubes, because you truly are a dynamic professor.

In terms of some of the expressions you used in your presentation today, you talked about what is good. We have an awesome task here on what is good. We're going to be meeting with ethicists. We're going to be dealing with the moral issues, and so forth, and those will always be in our minds no matter who our witnesses are and what they're talking about. This is what I'm mulling over in my mind as we go along.

I'm going to talk about process. You made reference constantly to committees—the rapid decisions, and compliance was there. Dr. Nisker, you talked about everybody being on board in the second meeting, these kinds of expressions.

I have been involved in committees for over 50 years. I know if I were the chairman and I wanted to get compliance quickly, I would be very sure, positive, that I would have people who were going to help me make that decision and reach the conclusions I wanted. In other words, I could stack committees. It's done on a political level; it's done in all fields of human endeavour.

I'm just wondering, and I don't really know because I don't know the people who are on these committees that you're talking about. Is it possible that many of the choices were made based on knowledge, knowledge about certain individuals in our society who would be naturally in compliance because of what they have already indicated publicly? We know where they stand, we know what they want, and we know what they don't want. So we could stack the committee to come up with nine on this list, on the voluntary moratorium.

Is it possible that maybe we could throw 100 names into a bowl and randomly select 9 to 11—which, according to human dynamics, is supposedly the best structure for a committee in making decisions, not 15, or 99, or whatever—and that maybe we would come up with a different list? I just wonder how much of this whole effort is really controlled by people who are in control of this decision-making process and who is going to become involved.

Dr. Jeffrey Nisker: This is very good. I never thought of this before.

The way the committees are put together, of course, it's not the chairman, it's more Health Canada that would construct the committee. If we go back to who was on the Health Canada discussion group on the human embryo starting in 1994—I'm sorry, I don't have an acetate with who was on it, but I'm sure you have access to this...you do have it—Jean-Louis Baudoin, chief justice in Quebec, was the chair. He never said anything. He was the chair. He was one of the most brilliant chairs I've ever worked with. He never said anything until that last meeting when he said, do it now; let's do the consensus.

Mr. Stan Dromisky: Do you hear that, Bonnie?

Dr. Jeffrey Nisker: Okay, but then again, he's a judge, and we're talking about reproductive and genetic medicine.

• 1240

On the committee there were two reproductive infertility specialists, both there from the beginning of all of this. It means we're probably two of the oldest in the country. We were probably there because we also did so many other things. I do bioethics, and John was in charge of women's health in the southern Alberta authority. He does administration, policy, and such.

We did not make half a million dollars a year from doing reproductive medicine. We did not make a quarter of a million dollars a year for doing reproductive medicine. We made very little. We had very little vested interest in this. It's very hard to find individuals who have very little vested interest.

On the other hand, you can have the opinions of the societies who represent people with a vested interest. They can give you a group opinion. To find individuals with a vested interest who make a living was very difficult.

I assume Health Canada chose the two of us because of the width of our curriculum vitae. We do a lot of different things and can give input on many things—even though, at that point in time, I think there was only one person in Canada who had done more IVF than me, and that's Albert Yuzpe.

There's no question the 30 doctors who do this in Canada will have a different take than the thousands of others who do not. One of the challenges I've always had is to try to get empathy from the other doctors in Canada as to why we do reproductive medicine. They ask why we do do this. There are so many other things you can do. They haven't shaken the hand of a woman who so badly wants to have a child.

I believe these committees are structured by trying to find people who do not have a personal vested interest and trying to have people whose scope is wide enough that they can change. My views have changed dramatically since the very first committee. They changed in the past year over stem cells. I've become more interested in regulating more and prohibiting less, ever since the stem cells started happening. Look at the potential. This could have been prohibited. It would have taken us years to dig this out of prohibition. It's so wonderful.

I'd like to think you're also chosen because you have an open mind. There are many physicians who will lose financially if the bill comes in. The people who participate in the egg selling, the people who participate in the surrogacy, have a lot to lose. I don't. Maybe because I don't have a lot to lose, I'm the wrong person here.

You'll have the Canadian Fertility and Andrology Society speaking to you. You'll have representation from groups who represent these people. Their voices should be loud, and heard, and listened to.

Should vested interest people be on the actual committees? I'm not so sure.

Mr. Stan Dromisky: Thank you. I accept your perception of the situation.

The Chair: Mr. Merrifield.

Mr. Rob Merrifield (Yellowhead, Canadian Alliance): It's an interesting discussion. You talked a lot about sand this morning, and the lines that are drawn in the sand. It's interesting because I think the sand starts to shift.

You've described some of the things that perhaps were moratoriums earlier, which you're suggesting now should be put to regulation. In a perfect world, where the regulatory people were perfect as well, I think it's a fair statement.

It gets a little scary for myself, and I think the Canadian public, when we realize the human nature of ourselves. We're looking at a subject where lines in the sand can turn into shifting sand and sinking sand in very short order.

You said something earlier that caught my attention. You mentioned that most in vitro clinics do not adhere to the voluntary moratoriums, but violate at least one of the prohibitions. Which ones are being violated?

Dr. Jeffrey Nisker: I think the most common one is egg selling. I think most clinics participate in egg selling. I don't think the doctors do it for negative reasons. I think they do it for positive reasons. I think the doctors understand the ethical principle of beneficence.

A woman comes to them and says she's 40 years old, has waited a long time because she wanted to be the president of the company, and now she is president. She wants to have a child but has run out of eggs. The doctor can actually get eggs for this woman by participating in one of the egg sharing processes.

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Then another one of his infertility patients comes to him and says she needs IVF. She really wants to have a child and can't afford it. He can say, if she will give up half her eggs, he has a wealthy woman who will buy them. She'll get a free IVF cycle. Sure, your chance of having a child would only be half if you had equal access to IVF, but you would still have a chance.

The doctors who engage in this are not evil people. They have a moral commitment to both of their patients to help them have a child. It's one way they can make it fit.

I feel that in a moral Canadian health care system everyone would have equal access. We wouldn't get into these back-door commercial arrangements that are unnecessary if IVF was available for everyone.

I would say almost every clinic in Canada either will pay for a university student or a young woman to give up eggs to be used to help their infertile older patients, or will participate in egg sharing to help their economically disadvantaged younger patients access IVF.

Mr. Rob Merrifield: Okay.

That takes me to the second part. It is a question I was concerned about. It's interesting that that's where the violations are coming from. The bill really comes down, in my mind, with the ethical issues of cloning, to whether we should step into germ-line alterations and so on. Should we go down that path?

The other side is the surrogacy side, which is the commercialization, the dollars and cents, and the ulterior motives behind some of the things we're headed into. You talked about the buying and selling of eggs, sperm, and embryos. In 1994, it was reported you were paying $1,000 for egg donation. Sperm donations for $50 to $75 have been reported. For $100 a month, I don't know what kind of a job that would be.

At any rate, you're saying it is happening today as we speak. Is the selling of eggs more prevalent than the wheeling, dealing, and bartering? To what degree is it more prevalent?

Dr. Jeffrey Nisker: It has become standard practice. I'm sorry, I'm not sure I understand the question.

Mr. Rob Merrifield: What is most prevalent, the selling of eggs or bartering for in vitro?

Dr. Jeffrey Nisker: You mean the sharing process or the selling. Some clinics do the sharing, some clinics do the selling. I don't have the statistics. These are not things that are accessible.

In the United States, they've gone from sharing to 80% doing the selling. I participated in a conference on this on the ethics end.

The people who were doing the pro end, the science end, were saying there has been a big shift. Most IVF units have groups of women, usually disadvantaged, often of colour, who will come in three times a year and sell their eggs. There are so many older women who need access to the eggs. It's more complicated to go through the sharing process because you don't get as many eggs.

Again, it's the whole commercial concept that we, as physicians, have difficulty thinking about. A younger woman makes more eggs. These are the Americans I'm talking about. Rather than use the sharing process, where you can at least give access to a woman who can't afford it, they're now getting young women. They can make even more eggs, sell them to even more older women, and make a higher profit. About $10,000 is what a woman is now charged to buy four eggs within the United States.

Mr. Rob Merrifield: You've said you don't have a handle on exactly how much it's going on. Give me a ballpark figure. To what degree has it increased over the last five years?

Dr. Jeffrey Nisker: It could be a thousand-fold, again, for the reason that doctors are trying to help these women. They're trying to help the older women and the financially disadvantaged younger women.

With all the clinics opening up now, the new ones are all private units. There were originally five publicly funded units in Canada. All those privately funded units, with the exception of three, now have a private arm across the street where the commercial end is being done.

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So there are now three strictly publicly funded units left in Canada out of the thirty units, or whatever, that there are. That kind of gives you an idea of the dimension of what's happening.

Mr. Rob Merrifield: Just one other quick one then. We talked about cloning a little bit earlier. Is it being done in Canada or is it potentially being done in Canada today by any group?

Dr. Jeffrey Nisker: I don't believe human cloning is being done in Canada. Certainly we surveyed people as recently as a year ago and nobody admits to doing cloning.

I believe doctors are moral people, and no doctor is going to risk losing their licence. To do the human cloning, somehow you have to get that embryo. To get that embryo a woman has to go through a medical procedure. To go through a medical procedure specifically to make eggs for cloning, that's bad medicine. No doctor would do that.

I also do not believe a doctor would ask a patient for an embryo to go into a research experiment without it being an approved research experiment, having gone through a research ethics board. No research ethics board in Canada has approved a cloning experiment.

We're starting to get some private research ethics boards in Canada. I have the hope and the understanding, because they were also consulted, that they have not approved a research experiment on cloning.

So I would like to think this has not occurred in Canada, not even the blastomere separation type of cloning experiment that was done in 1995 in the United States.

So I'd like to think that has not happened, but then I have a Pollyanna complex, so....

The Chair: Thank you, Mr. Merrifield.

Mr. Castonguay.

[Translation]

Mr. Jeannot Castonguay (Madawaska—Restigouche, Lib.): Thank you, Madam Chair.

If I understand correctly, after amniocentesis, certain diagnoses are made in view of deciding whether or not to continue a pregnancy, and this decision is made by the patient, her physician and her advisors.

In a genetic diagnosis before implantation, who should decide whether the implantation should be done or not? If I understand correctly, we could get a great deal of information with this technique. Who should decide whether or not to implant, and according to what kind of diagnosis? Who should decide that?

[English]

Dr. Jeffrey Nisker: The decision is usually made long in advance. In order to do genetic testing in 2001, you have to know what you're looking for. You can't test embryos for this, that, or the other thing. You have to know what you're looking for. For example, if you were looking for a specific gene for cystic fibrosis and the woman says, look, I don't want my child to have cystic fibrosis, or the couple says that, then the doctors would be specifically testing that embryo for the gene for cystic fibrosis.

So the counselling—and there must be a tremendous amount of genetic counselling go on before it ever gets this far. The decision should be made well in advance of the IVF procedure that leads toward pre-implantation genetic diagnosis.

If the couple has decided they do not want an embryo carrying the gene for cystic fibrosis—or where the child will develop cystic fibrosis, because it's not as simple as carrying the gene; there are markers involved—then the laboratory will test each embryo and only return to the woman embryos that are not carrying the markers for cystic fibrosis. But the decision should be made by the couple, after hours of genetic counselling, long before this ever occurs.

This is part of the problem, because it's not just a matter of funding the technology, but in private units you're never going to get these hours and hours of counselling. The woman can go out and pay extra money for counselling if she chooses, but counselling must be embraced within the health care system before the woman can get to the situation where she can make a decision, does she really want to go through IVF to have this?

There is the scientific counselling that the physician can provide and that the geneticist can provide, but the genetic counsellors and the infertility counsellors who come from various disciplines must be involved as part of this process, and that does not happen to a big degree in the commercial clinics.

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[Translation]

Mr. Jeannot Castonguay: I greatly appreciate this aspect of counselling, because basically, that is when we become aware of the fact that a human being is something more than a mere cluster of cells. How can this kind of bill ensure that counselling will be done? Can you suggest anything that could ensure that it will be done? I think that this is extremely important. This is part of a whole. Once again, we are not merely a cluster of cells; we form an entire whole.

[English]

Dr. Jeffrey Nisker: Absolutely.

The counselling is huge, and doctors want this counselling. Doctors want their patients to be as informed as possible. Considering we only have about half as many doctors in Canada as we should have, doctors often don't have time to do hours of counselling. But if a doctor had a counsellor working with them—in our unit, for example, we have three counsellors, paid for by the hospital. Everybody goes through hours and hours of counselling before even having the straightforward IVF. We don't do it. We do the standard physician counselling, a half hour maybe. Then they have a psychologist and a social worker. They go through all this counselling, because we're one of the government-funded units, although it's not really funded for IVF any more—that was taken away in 1994. But we somehow have been able to maintain our counsellors.

If counselling is enshrined as essential to the part of reproductive and genetic medicine, and that any clinic that is practising this must have counselling, and if it is put back into the provincial health care budget, all private clinics, which will then of course become public, will embrace this because they want their patients to have this. Doctors do not want to have unhappy patients. They do not want to operate on patients who do not have the maximum amount of knowledge. Doctors love being able to work with counsellors, who will have the time and spend the time in educating patients. Really, doctors are educators first. They are surgeons, etc., after. But the education is the most important process. If you can have people paid for to help you educate, we would all love that.

The Chair: Mr. Owen.

Mr. Stephen Owen (Vancouver Quadra, Lib.): Thank you both for this fascinating and informative presentation.

In the interests of expediting the perfection and then the implementation of this legislation, and so that our committee won't have to visit all over the world, could you tell us which jurisdiction has the best system of legislation, of regulatory boards, of clinical application in the world?

Dr. Jeffrey Nisker: We might differ in our opinions on this. Do you want to go first?

Ms. Madeline Boscoe: No, go ahead.

Dr. Jeffrey Nisker: I would take the best from each, and I believe we can do better.

When you look at the work that was done by the Health Canada working group on the human embryo, the recommendations we were putting forward then did not exist anywhere in the world. Since that point in time, several European countries have adopted some of them. The State of Victoria, in Australia, has adopted some of them. Great Britain led the world in having the first regulatory situation. But I think we could make our own Canadian system that would be better than any country in the world. I think we have the physicians and the scientists here who are as good as anyone in the world. We have ethicists who have devoted their lives to this. I think at some point in time you are going to be hearing from Françoise Baylis and Laura Shanner and some of the people who have done nothing else but this work. We're very fortunate in Canada to have these people.

I think we can do the best. But the Europeans have wonderful legislation, and Victoria and Australia now have lovely legislation.

Mr. Stephen Owen: I suspect we're fortunate to have you two as well.

The Chair: Thank you, Mr. Owen.

Ms. Judy Wasylycia-Leis. This will be the last question.

Ms. Judy Wasylycia-Leis: I have two very quick questions.

In the interests of understanding what we're up against as we move towards moving this draft bill into law, what forces would have come in the way of legislation over the last decade? Is it commercial interests who want unfettered access to the marketplace, or is it the scientific community wanting unfettered access doing whatever research without bounds, or without any kinds of parameters? That's one question.

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The other is with regard to the regulatory authority, and I appreciate that is a significant difference from Bill C-47. I'm trying to understand why you feel we need to have an autonomist regulatory body reporting directly to the minister. Is there a public policy imperative for that, or does that arise from concerns about some of the loss of regulatory capacity in Health Canada?

Ms. Madeline Boscoe: I'd be happy to answer those. In my own view there have been several impediments. One is that we don't have a public mechanism. Most of this is happening in the private, for-profit environment. As a result, those involved in the normal grey-zone activities, such as the health service accreditation groups, the tissue analysis committees of hospitals, and social worker support groups in a hospital, don't get together to talk about many of these issues.

The research in this area has essentially stopped because it's outside of the public domain. Our regular mechanisms aren't there. This is a very teachable moment for us, as we go into the Romanow commission, on what happens when we put stuff in the private sector. As someone who works with women with breast implants, it's the same story, to be honest. So that is true.

I think there is a fear in the scientific community, though less so. I refer to the recent discussion paper from the Canadian Institutes of Health Research on this very issue to show that they're looking for policy direction and want to create a policy framework, including support for a licensure for scientists before they can have access to doing research in gametes. That's essentially what this bill will require. It's all very well and good to want to have research, but you have to be licensed to do it. That's a very radical but very well supported view. I speak as a member of the institute advisory board at the gender and health institute at the CIHR about the need for this.

I think the other thing that stopped us, and it's the discussion around the table, is that these technologies are almost beyond our capacity. We all read Brave New World in 1984, but we didn't think we were going to live to see it. I remember that in 1984 I found it hard to believe I was going to live to see it. It hurts our brains to imagine this. We don't want to look like we're prohibiting some wonderful opportunities, as we discussed earlier. I think that has stopped us, because it's hard. It hurts your brain.

You guys are the lucky people in the driver's seat on this. We have to do this. That's part of the reason we're saying we need an education activity along with this so that we help nurture our community and our civil society on these issues. We have a whole lot of people who are graduating who don't understand on a day-to-day basis what it means. The Society of Obstetricians and Gynaecologists puts an article in a magazine that's found in their waiting rooms that says, hey girls, it's not as easy to get pregnant at 35 as at 20.

We need social supports to figure out how to do this better. Those issues are relevant to this file, and we need a policy program as well to address them. I hope that helps.

With regard to the state of the regulatory body, I think it was the view of the advisory committee, with great respect to the people in the food and drug component—I don't know what the new version of the health protection branch is—that they were still reeling from Krever, for lack of a better word, and trying to figure it out, and that corporately they had a licensure environment that did not mean they were quite ready to take on the social and ethical issues this issue raised. We thought it was at a high enough level and required an interdepartmental response within Health, that it wasn't just a matter of approving a drug or a treatment, but it had to work hand in glove with the other parts of Health and be able to inform the minister and us, so that when he sits at interdepartmental committees looking at health and public policy, the issues we're working on....

One of the big reasons women are postponing having babies is because they have no job seniority rights. We can predict what their income levels and their educational levels are going to be if they leave the workplace, and they're a disaster. So we need Human Resources Canada to help us on this one. It's not just a medical issue. That's an example of why we think it needs to be up at a very high level.

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We had a debate about the Prime Minister's Office to be honest. We didn't go there.

The Chair: Thank you.

Ms. Wasylycia-Leis:

Dr. Jeffrey Nisker: I have one more comment about why there has been fear and why there has been some.... Sorry. Is that okay?

The Chair: Quickly.

Dr. Jeffrey Nisker: I think the two parts of your question are tied into the same thing. The people who practise reproductive medicine, the scientists who want to make reproductive medicine better for women 10 years from now, need a transparent, autonomous regulatory body, where they feel that their 30 years of training are worth something and that their representatives can make a case to somebody, where everybody knows there's no back door, there's no behind the curtain, they're going to present the science as it is at this time and there will be people who have open minds to listen to it, not there to impede science.

I think that's very reasonable. I think we should use the professional organizations. It will certainly make the regulatory body less expensive if we can use the professional organizations and the expertise they have to explore the scientific issues, to report back to the regulatory body. They have to see how the regulatory body works. Then I think the fear will dissolve and everyone will support this, because we all want the same thing—optimal reproductive health for Canadians and the optimal ability to do science to make it even better 10 years down the road. That's why I think it has to be autonomous and transparent.

The Chair: Thank you, Ms. Wasylycia-Leis.

Members, before I thank our witnesses, I would like to point out that you have in your package for today a summary of evidence on donor exclusion policies and blood supply safety. You'll remember we had two meetings on that. Our researchers have done a little summary of the evidence. I'm going to ask you to have a good look at this, because next Tuesday we have one witness, and I'm hoping we might get twenty minutes to half an hour at the end of that meeting to go over this and decide what we're going to do with it. I did tell Mr. Ménard we might put a little report into the House prior to the summer break, but we have to decide what it is we want to say. So read this carefully and be ready for a little discussion, so that we can guide our researchers in drafting something for us, maybe for the last meeting or so, and we can get the thing into the House. That would be Tuesday.

This Thursday we will be discussing the broad ethical issues. Some of the issues you raised today I think you may want to raise again with our witnesses on Thursday.

On your behalf, I'd like to thank Dr. Nisker and Ms. Boscoe for the sharing of their ideas based on years of work. It's just so valuable to us. One of the things I noted you said was that we should differentiate between real research and applied clinical assessment. I think if we could get that somehow or other into this legislation, it might be applied in other parts of the health care system, where the word “research” is tossed around pretty loosely. We'd be grateful for that concept.

Mr. Stan Dromisky: Madam Chair, I have a point of order. We have all heard quite a bit today about the potential increase in the salary of members of Parliament. One of the comments being made on a local talk show is that members of Parliament have nothing to do for three months during the summer. Following that line of thinking, I would appreciate it if both of you could give maybe one or two or three titles from your bibliography that you think would be of benefit to us—we're lay people—and would have some influence in our deliberations here in the fall and the following winter.

Dr. Jeffrey Nisker: I brought them with me. I would also encourage you, if you get a chance some night with nothing better to do, to watch the videos of two of the plays. But I have to make this announcement. The actors on this are professionals; they're members of Actors' Equity. They're not allowed to be reproduced or they'll kill me. But they have given me permission to bring their work to this committee.

Thank you.

The Chair: Thank you, Mr. Dromisky. Thank you, Dr. Nisker, and thank you, Ms. Boscoe.

This meeting is now adjourned.