EVIDENCE

[Recorded by Electronic Apparatus]

Monday, March 17, 1997

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[English]

The Chair (Mrs. Bonnie Hickey (St. John's East, Lib.)): I'll call the meeting to order, and we can get started.

Today we're going to be calling on six witnesses, and if you don't mind, we'll go through the order as you see it on your agenda. With respect, I would ask the witnesses to keep the discussion to five minutes and to keep to the contents of the bill. We've many people to hear from, and we'd like to keep the discussion on the bill. I want to remind you that the bill deals with 13 restricted practices, and perhaps we could please deal with those.

Perhaps the committee would agree that we will hold our questioning until after our six witnesses have spoken. Is that okay?

We would like to start over here on the right.

Dr. R. Rittmaster (Chair, Government Relations Committee, Canadian Fertility and Andrology Society): Thank you, Madam Chair. My name is Roger Rittmaster, and I'm the chair of the government relations committee of the Canadian Fertility and Andrology Society. I'm also a physician-scientist in the field of endocrinology.

With me today are Dr. Arthur Leader, an expert in reproductive health care, and Dr. Nongjuj Tanphaichitr, a leader in sperm research.

The CFAS represents physicians, scientists and other health care professionals concerned with reproductive medicine and fertility research. It is the principal scientific and medical organization in Canada concerned with reproductive health. Moreover, CFAS directly represents those scientists and researchers who will be most affected by the passage of Bill C-47.

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Madam Chair, the committee has had an opportunity to review the brief we submitted in January as well as our earlier paper from September, which responded to the bill in detail. Therefore, today we would like to restrict our comments to the issues that most directly affect the scientific community.

I will first discuss our concerns about the process followed in the development of Bill C-47 and make some general comments about it, and then my colleague will add a few remarks on some more specific issues. All of us will be available to answer any questions you may have.

First, let me be clear, the CFAS does not endorse Bill C-47 in its current form. Moreover, we are extremely disappointed with the process followed to conceptualize and draft the bill.

Having said that, I would like to point out that CFAS does not object to some parts of the bill and recognizes that there is a legitimate need for government action in this complex area.

CFAS believes that a regulatory structure is necessary to oversee this rapidly advancing field. Instead, Health Canada has brought forth Bill C-47 and has left the development of a more comprehensive regulatory system to an uncertain future. This makes it all the more important that this committee ensure that Bill C-47's many flaws are corrected before allowing it to move forward.

Last Thursday the committee heard from the Department of Health officials who suggested that broad consultations were held before the introduction of this bill and that it reflects the general will of those consulted. I must point out, however, that CFAS representatives were not consulted on the specifics of this legislation prior to its being tabled for first reading. In fact, the last contact between the Department of Health and CFAS on any reproductive technology issue was November, 1995.

This lack of consultation with experts in the field has resulted in serious shortcomings in the bill, both on the level of technical details and of overall design. One straightforward example is the failure of the bill to correctly define the term ``zygote''. If an expert in the area of human reproduction had reviewed this bill in its final stages, this error would not have slipped through.

More importantly, this bill blends together issues such as embryo research, which is vital to progress in human reproductive health care, and the fusing of human and animal genetic materials, which is best left to the realm of science fiction and which would in any case be prohibited by every funding body, medical college and professional organization in Canada.

Immediately after the tabling of the bill, we contacted both the Department of Health and the Minister of Health to register our concerns. To date, CFAS has not been reassured that the shortcomings of the bill will be corrected. It is not clear why the Department of Health continues to refuse to make changes to a bill that is being roundly criticized for the impact it will have on health care and reproductive health care research in Canada.

We will now focus on aspects of Bill C-47 that address research. By no means should this be understood as an exhaustive list of our concerns with the bill. A key issue for CFAS, which is also being addressed by many other groups, is the proposed ban on the reimbursement of expenses related to sperm and egg donations. As this issue will be covered by other groups, however, we will focus on other deficiencies of Bill C-47.

Clause 4 explicitly prohibits three key research activities: one, research into the alteration of genes, which could one day form the basis of gene therapy; two, a total ban on research into the maturation of fetal eggs; and three, the creation of embryos for research.

Contrary to the impression left with you by the Department of Health on Thursday, worldwide embryo research will continue and should continue. The likely result of these bans in Canada would be: first, to reduce the likelihood of scientific advances for the benefit of 15% of Canadian couples suffering from infertility; second, to halt advances in scientific knowledge in this area; and third, to make Canada a less attractive place for research into human reproduction.

For a discussion of how these bans on research activities would affect Canadians, I would now like to hand over the presentation to my colleague.

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Dr. Nongnuj Tanphaichitr (Member, Canadian Fertility and Andrology Society): Thank you, Dr. Rittmaster.

For the record, my name is Nongnuj Tanphaichitr. I'm a scientist and professor at the University of Ottawa.

The first of the bans noted by Dr. Rittmaster is in clause 4, which would ban research into the alteration of genes in an ovum, sperm, zygote or embryo in a manner that would be transmissible to future generations.

To put it simply, banning this activity would mean that an important area of research into the elimination of such diseases as cystic fibrosis and muscular dystrophy would have to stop. Both of these are hereditary diseases that in the near future will be eliminated through gene therapy, but not if this part of the bill is allowed to stand.

Second, an important area of research in human reproduction concerns the maturation of eggs. Down's syndrome, for example, is caused by chromosomal abnormalities in the maturing egg. To learn the causes of this ailment, it is necessary to conduct research into maturing eggs.

Clause 4 bans the retrieval of fetal eggs for maturation. This is an extremely sensitive area that must be handled with the greatest care. Scientific and ethical review is required before such research should proceed. Bill C-47, however, proposes a blanket prohibition of all activities in the field. It is this total ban that the CFAS cannot support.

Third, clause 4 bans the creation of embryos for research. At first glance, this is appealing. The thought of an obsessed scientist creating embryos for a secretive research project with little or no oversight is appalling to us all. Nevertheless, the problem with the ban is that it does not take into account that research is an integral part of high-quality health care.

For example, a new technique called intracytoplasmic sperm injection, or ICSI, injects a single sperm into an egg. This permits, for the first time, many infertile men to become biological fathers. ICSI was first developed in animals, but before it could be used in humans, technologists had to be sure that the embryos so created were normal. In other words, embryos had to be created for research without the intent of implanting them into women.

Even now, when a new centre is establishing the technique of ICSI, or a laboratory staff member is learning the technique, it must first be established that the technologist can successfully create undamaged embryos. This is research, and should appropriately be classified as such.

It is important that Bill C-47 provides no definition of research, and it completely fails to acknowledge the link between research and health care. Because much scientific research into new infertility treatments deals with the act of fertilization, which means the creation of embryos, this bill would effectively end this type of research in Canada.

Other advances are also a direct result of research into human embryos. For example, the development of the pre-implantation genetic diagnosis now allows serious diseases to be recognized at the embryo stage, thus avoiding the implantation of embryos containing diseases such as cystic fibrosis.

Madam Chair, the research undertaken by me and my colleagues across Canada and around the world is directed toward improving our health care system's capacity to help people. More than 15% of Canadian couples currently suffer from infertility. Now, after the development of new techniques such as ICSI, many of them have a chance to achieve biological parenthood. Moreover, the study of genetically inherited diseases is important in and of itself.

Speaking for myself, I must also add that my primary work is in the area of human sperm research. While I have not addressed the issue of sperm donation, which as Roger stated will be discussed by many other groups, I do want to point out the impact of this bill on my work.

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If the bill goes forward as written and bans the reimbursement of expenses for sperm donation, then the available supply of human sperm will fall dramatically, making research and diagnosis of male infertility virtually impossible. For me, there would be little reason to remain in Canada to conduct my research. I would assume that other scientists may find themselves in a similar situation if Bill C-47 becomes law without significant amendments.

In conclusion, Bill C-47 addresses an extremely broad range of activities all lumped together as relating to reproductive technologies. We believe that this whole area would have been better served by the creation of a regulatory structure and we still hope to see such a step taken.

In the meantime, we urge you to carefully consider the specific clauses of the bill before you and amend those that will stunt the growth of medically beneficial research in Canada. We ask you to ask hard questions about the consequences of the bill for current and future infertility services and research in Canada.

We'll be happy to answer any questions you may have now or after you have heard the comments of the other groups in attendance.

The Chair: Thank you.

[Translation]

Dr. Pierre Miron (Institut de médecine de la reproduction de Montréal Inc.): Good afternoon, Madam Chair and members of the sub- committee. First, I would like to thank you for giving me the opportunity to meet with you. In recent years, although I personally tried several times to make my position known and to get a dialogue going, I was not successful in cutting through the bureautic maze. In the end, our objective is to help infertile couples deal with these technologies. I believe it is important to get this dialogue going so that we can also demystify the technologies we are using.

I am a doctor, trained as an obstetrician-gynaecologist, with a fellowship in reproductive endocrinology and fertility. I have devoted 100% of my professional time to trying to meet the needs of infertile couples, and I am probably one of the few doctors in Canada to have done so.

Today, I represent the Institut de médecine de la reproduction de Montréal, the only francophone centre for medically-assisted reproduction in Canada. It's a private clinic, and it would be useful, I think, to tell you about the history of medically- assisted reproduction in Quebec. In fact, the centre was established in 1990, following many attempts to create, within a hospital, a centre of excellence for medically-assisted reproduction, which finally proved impossible since governments refused to provide the necessary funding. I should also mention that I am a professor at the University of Montreal.

Nevertheless, since 1994, this centre is supported by shareholders representing the government of Quebec, through paragovernmental associations such as Innovatech Grand Montréal and the Quebec Deposit and Investment Fund. This just goes to show, as I am sure you realize, that the message to doctors specializing in this area was that governments were not ready to fund these technologies, but that they were willing to help us improve them through research, for instance.

Among members of our board, you will find Pierre Bois, who was chairman of the Medical Research Council of Canada for 10 years and is also a former Faculty of Medicine Dean, Jean Coutu, who is an officer of the Order of Canada and of the Order of Quebec, as well as many other highly respected individuals. And let's not forget that it is a private centre.

Furthermore, we have established an ethics committee, chaired by Sonia Le Bris, who works in close cooperation with Bartha Knoppers, a lady the members concerned with infertility problems know very well, since she sat on the Royal Commission.

Let me say at the outset that the Institut de médecine de la reproduction de Montréal strongly supports a regulatory framework for these technologies. We don't question the importance of accreditation those technologies and establishing licensing mechanisms.

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We are concerned, however, that the community of medical experts has been excluded from the development of Bill C-47. Yet, I believe we could have made a positive contribution, if only by advising on the scientific terms used in the bill, which are often incorrect, and also by bringing you up to date on the most recent developments regarding these technologies.

I would remind you that the decision to go ahead or not with Bill C-47 will have a great impact on infertile couples. Until now, the Royal Commission's report, which cost 28 millions dollars, has had no positive impact, I think, on infertile couples. On the contrary, the tabling of the report created a number of problems.

I'll give you but one example, the decision by the province of Ontario, in the wake of this report, to deny access to in-vitro fertilization to infertile couples for reasons other than the complete obstruction of Fallopian tubes. In the end, the Ontario government followed recommendations 106 and 107 in the Baird Report, whereby in-vitro fertilization is allowed only when there is complete obstruction of the Fallopian tubes, although we now know that this technology can by used to correct other infertility problems, such as endometriosis, male infertility, and so on.

We believe that the Criminal Code should apply only as a last resort. Only extraordinary cases should be dealt with through criminal law. No steps have been taken, I think, to try and find other means to deal with the situation. The federal government should take this rather unique opportunity to cooperate with the provinces and establish an accreditation framework for these technologies.

We're very concerned by this bill's impact on infertile couples. In fact, we think it is stepping into provincial jurisdiction. Let me remind you about the position of the Conseil du statut de la femme, which made its report public a few weeks ago. It describes relatively cheap and very efficient mechanisms to set up a framework for these technologies. In these days and age, cost is often a consideration and it is important to use the most simple but also the most efficient mechanisms.

We are extremely concerned, in particular, by paragraph 4(1)(k) of the bill, whereby no one shall knowingly "cause the fertilization of an ovum outside the human body for purposes of research". We are concerned, as I am sure you realize, because we don't know what is research and who defines what research is.

In recommendation 107 of the Baird Commission Report, it is said that in-vitro fertilization is considered experimental when it is used in cases of male infertility, infertility linked to endometriosis and unexplained cases of infertility. However, the whole scientific community working in this area has now a very good grasp of this technology, which proves very efficient to correct this type of problems. If the bill is passed, infertile couples could be prevented from using these technologies, the efficiency of which is now proven and recognized by the international medical community.

Regarding the provisions prohibiting any payment to the donor, we have some concerns based on our experience. Our institute has decided to create its own sperm bank because we believed that it was important to adequately monitor our donors, to know what type of donor we called upon and to have an exhaustive and complex follow-up, rather than using American sperm banks. A bill which would make donors scarce would force us to use American sperm banks. You can imagine the impact of using biological material coming from outside Canada, given the experience we had with the blood bank.

Furthermore, you might be aware that a document presented to the Canadian Bar Association clearly states that the government of Canada would violate its own international agreements by limiting research, and would force infertile couples to go to the Supreme Court to defend their right of access to treatment, if the bill were passed as it stands now.

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To sum up, we are in favour of a national policy. We should call upon the provinces to establish a framework and license the clinics. We also consider that the best way to monitor these technologies is to set up an ethics committee in each establishment, whether public or private. For example, we mandated David Roy, a well-known bioethics expert, to establish an ethics committee to deal with policies and processes. At the end of the day, we think that an internal control mechanism is best.

Based on our experience in Quebec, where we had to use a private system to develop medically-assisted reproduction technologies because no government funding was available, we think that licensing should only be based on quality criteria, and that whether a centre is private or public, for profit or not, should not be taken into account. In the end, we have to look after the well-being of infertile couples who need centres such as ours.

Thank you. I would be very pleased to answer any questions committee members might have.

[English]

The Chair: Thank you.

We've agreed that we'll have questions and answers after everybody makes their presentations.

Dr. Kazimirski.

Dr. Judith C. Kazimirski (President, Canadian Medical Association): Thank you, Madam Chair.

[Translation]

On behalf of Canada's doctors, we, the Canadian Medical Association, would like to thank the sub-committee for giving us the opportunity to present our views on Bill C-47.

[English]

I am Dr. Judith Kazimirski, president of the Canadian Medical Association and a family physician from Windsor, Nova Scotia. I am here today with Dr. John Williams, who is the Canadian Medical Association's director of ethics.

The presentation you heard last week from Health Canada officials may have left you with the impression that there is no opposition to Bill C-47. There is very strong opposition to Bill C-47. National medical groups such as ourselves, the Canadian Medical Association, and the Society of Obstetricians and Gynaecologists of Canada, the Canadian Fertility and Andrology Society, and the College of Family Physicians of Canada all oppose this bill. Groups as diverse as the Infertility Awareness Association of Canada, the National Council on Bioethics in Human Research, and the National Association of Women and the Law have serious concerns about this bill.

Why does the Canadian Medical Association oppose this bill? We have two major concerns.

The first reason for our opposition to the bill is its timing. The government has announced that it intends to create a regulatory structure for those reproductive and genetic technologies and practices that are not prohibited. Since some of the technologies and practices mentioned in Bill C-47 will be included in this regulatory structure, the government has stated that it intends to introduce amendments to this bill as soon as the details of the regulatory structure are determined. This seems to us to be a very strong argument for delaying Bill C-47 until a coherent approach to these issues has been developed.

If, as we argue in our brief, the current regulatory framework for medical and scientific practices can be adapted to deal with infertility and reproduction, then there will be no need for the current bill, much less amendments to it.

Second, for the reasons outlined in our brief, the bill will not achieve its own objectives of protecting the health and safety of Canadians, ensuring the appropriate treatment of human reproductive materials outside of the body, and protecting the dignity of all persons. Even worse, it would establish a dangerous precedent for criminalizing medical and scientific activities on vague and arbitrary grounds.

Infertility is the inability of someone to engender children during a stage of their life when biologically this should be possible. It is our association's understanding of the nature of health that the treatment of infertility is a health service.

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Infertile women's reproductive choices will be seriously limited by this legislation. Banning the ability to experiment with potentially useful techniques will limit and restrict women's choices.

As was pointed out by my colleagues from CFAS, we have serious concerns about subclause 6(2), which deals with the reimbursement of expenses for sperm and egg donation. Infertility is a health problem. There are appropriate expenses incurred that should not be prohibited by criminal legislation.

Not only will this bill not achieve the objectives, but the criminalization aspects will have serious negative consequences. It will create major obstacles to legitimate medical and scientific progress that may hold out hope for those Canadians who are infertile and wish to have families.

Most of Bill C-47 is not concerned with medical practice as such but rather with research. The Canadian Medical Association recognizes that genetic research and the significant moral issues that surround it must be approached with caution and proper consideration. However, we would also stress that the Canadian research system has been effective in accomplishing this, and the Canadian research community has shown itself to be highly responsible and highly credible. Indeed, as government officials informed this committee last week, there is no evidence that researchers in Canada are working in any of the really problematic areas such as human cloning or animal-human hybrids.

The Canadian Medical Association agrees that Canadian society must proceed cautiously and thoughtfully in the area of reproductive technology and genetics. We would add, however, that in such important areas it is no less important for government to exercise the same due caution and thoughtfulness in developing legislation and regulations. Bill C-47 is a very poor beginning for policy-making in an extremely difficult and very complex area. We can do much better than this.

Madam Chair and members of the subcommittee, in summary Bill C-47 will create major obstacles to the treatment of infertility and to legitimate scientific and medical progress. The proposed bill represents an unjustified intrusion of the government's criminal law power into the patient-physician relationship. The bill's focus on criminalization has the potential to create a chill on much needed research on reproductive and genetic technologies.

We urge you to conduct a detailed study of the proposed legislation to ensure that it appropriately protects the public while maintaining Canadian women's access to valuable reproductive and genetic technologies.

You have before you our brief, which contains nine specific recommendations. If the first one is accepted, there will be no need to deal with the others. I'll remind you of recommendation one, which is that the issues addressed in Bill C-47 should be dealt with in the context of a comprehensive policy and regulatory structure building upon the strengths of existing regulatory bodies rather than in criminal law.

If you do proceed to a detailed study of the bill, we strongly urge you to amend it in accordance with recommendations two to nine.

[Translation]

Thank you, Madam Chair.

[English]

The Chair: Thank you very much.

Go ahead.

Ms Kathryn Tregunna (Director, Policy and Program Development, Canadian Public Health Association): Good afternoon. While CPHA is pleased that the federal government is considering a legislative approach to human health and dignity protection, we are discouraged and disappointed that once again the issues of health promotion and disease prevention related to healthy sexuality; sexuality education; access to services, both clinical and educational; and the prevention of sexually transmitted diseases have been set aside by the curative and restorative technologies.

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HIV/AIDS is a growing concern among women, youth, aboriginal peoples and other marginalized groups. Sexuality education is still not accessible to all young Canadians. There is still not a national coordinated approach to sexually transmitted disease prevention and control. Sexual health clinical services are still not accessible to all Canadians. There is still not a framework for sexual and reproductive health, though we are aware that Health Canada is working on this.

Unlike many of my other colleagues here, our focus in reviewing this bill has been on the lack of focus on health promotion and disease prevention. However, we do have some specific concerns related to what is written in the bill.

In September 1996, the CPHA reviewers concluded that the bill is basically sound. I believe if they were here today and heard the comments being made by some of our more technically expert colleagues, they may want to change that opinion. But from the public health perspective we felt it was sound, though we did make a number of suggestions. These are all outlined in the brief. I will not review all of them, but I will make a few remarks.

In the preamble we would like to suggest an amendment to the third paragraph that states the need for measures to protect and promote the best interests of women and children affected by such technologies and transactions. We have also noted the misuse of the words ``embryo'' and ``zygote'', so I won't go into those issues now.

Under paragraph 4(1)(i), the principle that needs to be elaborated is that the use of gender knowledge for termination of pregnancy, except in, for example, sex-linked disorders, should be prohibited. In our brief we've suggested new wording.

We also suggest in the brief some new wording related to surrogate mothers. I won't go into details at this point.

In terms of the purchase and sale under subclause 6(1), there's a genuine and legitimate concern among single women, lesbian women and heterosexual couples regarding a safe alternative source of sperm, as well as among public health advocates that unpaid sperm donation will lead to unsafe sperm retrieval. There is no evidence that the paid system has been abused or has in any way jeopardized the dignity of women or of men.

CPHA believes there will be a significant public health threat if women bypass the clinical system now providing safe sperm. CPHA urges a reconsideration of the prohibition of the sale of sperm.

We also have some wording changes to suggest to the use of sperm without consent under subclause 7(2).

In terms of court orders referred to in paragraph 10(b), this is a very broad statement and could imply that the minister could have someone suspended from the practice of medicine because that practice could lead to the commission of an offence. These sweeping powers are totally unacceptable in terms of Canadian licensing and regulation of health providers. This paragraph should be deleted. Those performing prohibited acts can be fined or imprisoned and anyone, including the minister, may refer any matter to a licensing body for investigation.

In terms of inspectors and analysts under clause 12, the law needs to provide for an appeal process, which is lacking with the federal government having sole discretion to designate persons in this clause. CPHA suggests that, as a minimum, the regulations should provide for a legitimate person or class of persons who could provide a second opinion in the event of disagreement with the findings of the inspector or analyst.

Our brief goes on to review the major elements of the document on setting boundaries enhancing health. I'm going to leave that for now, since I think some of those will come up in the question period.

I would like to conclude that CPHA hopes that these comments as well as those of the others around the table today will strengthen the proposed legislation.

Thank you.

The Chair: Thank you very much.

Dr. Nan Schuurmans (President, Society of Obstetricians and Gynaecologists of Canada): Thank you, Madam Chair, and members of the committee.

My name is Dr. Nan Schuurmans. I am an obstetrician and gynecologist at the University of Alberta, in Edmonton, and I'm president of the Society of Obstetricians and Gynaecologists of Canada, or SOGC.

With me today is Dr. André Lalonde, the executive vice-president of the SOGC.

The SOGC consists of over 1,800 obstetricians and gynecologists and affiliated members, such as general practitioners and nurses. The organization is voluntary and its goal is to promote optimal health care for Canadian women and their families.

We are here before you today because we oppose the passage of Bill C-47 in its current form. I say specifically in its current form because there are many aspects to this bill that are reasonable. For example, the SOGC supports the proposed ban on cloning humans found in clause 4 yet we agree with clause 7, which institutes a requirement of informed consent before any donated reproductive tissue can be used by a physician or researcher.

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Nevertheless, the bill also contains a number of serious flaws that must be addressed before it can be allowed to go forward. Before discussing SOGC's most pressing concerns with specific parts of the bill, I would first like to comment on the tone of the bill as a whole and its general structure.

A striking aspect of the bill that should be addressed by the committee is its total lack of positive commentary on infertility treatment in Canada. The bill is entirely negative and cautionary in tone, warning of the dangers and risks of the procedure without ever mentioning that more than 15% of Canadian couples suffer from infertility. Their plight should not be taken lightly, and it has been completely ignored by this proposed legislation.

Balance should be restored to the debate through a focus on how all Canadians can be best served by this branch of the medical and scientific community. To this end, the SOGC recommends that national standards be developed for the use of new reproductive and genetic technology that could then be enforced through appropriate provincial departments of health and professional medical colleges.

The end result of such a system would be the accreditation and review of all reproductive health clinics and other related health facilities based on the quality of care actually provided. At present, this bill does not provide for this.

In developing Bill C-47, however, Canada has not followed such an open and evolutionary process. Instead, the bill consists of criminal sanctions meant to enforce sweeping bans on various scientific and medical practices. The criteria used to define the activities prohibited is often unclear, and the justifications are in many cases couched in general language such as ``contrary to human dignity''.

Criminalization, if ever used in the context of science, should only be the final step of a rigorous process to determine which practices are to be encouraged, tolerated, restricted or banned.

Unfortunately, the government has chosen to skip the rigorous analysis. It introduced the prohibitions contained in Bill C-47 without first creating an appropriate body to pursue these issues. This has resulted in numerous inaccuracies in the terms and clauses of Bill C-47.

In part, this can be explained by the fact that the practitioners in the field of reproductive health were not adequately consulted in the drafting stage of the bill. For example, as it has already been pointed out, the definition of ``zygote'', a basic term, is incorrect in the bill. Moreover, the term ``cadaver'' in several clauses of the bill is also not completely accurate.

More importantly, clause 4 as it's currently written prohibits the communication by a medical professional to a patient of the sex of an unborn child. While this prohibition is justifiably aimed against the use of sex determination procedures for gender selection purposes, the clause should be much more explicitly written so as to avoid capturing incidental communication between doctor and patient. We have suggested alternative wording in our brief.

Bill C-47 is not only poorly drafted, it also contains serious shortcomings in its basic purposes. The three issues of primary concern to the SOGC are its impact on genetic research, the practical delivery of services to infertility patients, and the question of access.

Many diseases, such as diabetes, muscular dystrophy and cystic fibrosis, are genetically inherited. Bill C-47 inexplicably seeks to ban, through clause 4, the very area of research that could one day offer the hope of eradicating these diseases.

The SOGC agrees with the CFAS that this clause should be deleted. The appropriate regulation of this area of research is definitely necessary, but a complete ban makes no sense.

The question of embryo research principally addressed in the bill by clause 4 has been thoroughly addressed by my colleagues from CFAS. Nevertheless, I would like to reiterate the importance of embryo research in the successful treatment of infertility. Banning the creation of embryos for research would be detrimental to current patients and would seriously damage hopes for improvement in the medical care available in the future.

Finally, I would like to turn to the issue of access to infertility services. The first thing that must be clearly understood is that eggs and embryos are in very short supply in Canada as matters now stand.

You may have the impression that the donation of eggs and sperms is as easy as giving blood. Let me assure you that this is not the case.

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In the case of egg donation, the procedure required is sufficiently invasive that few women choose to come forward.

Sperm donation requires repeated virology, serology, bacteriology and semen tests. In order to ensure the highest degree of safety in the use of these human tissues, donors are required to undergo a battery of tests for at least six months before any semen samples are used. This is not a casual process, but rather one that requires a commitment by the donor. It is in this context that SOGC must ask: why is the government choosing to make donation more difficult?

Clause 6 of the bill presents the most serious challenge to the current donor system. While the SOGC strongly supports the notion that no person should sell or purchase sperm, eggs, zygotes, embryos or fetuses, we cannot support a ban on the reimbursement of reasonable expenses incurred through the donation process.

If we return for a moment to my description of the sperm donation process, it should become apparent that considerable costs could be incurred through a course of six months of repeat visits to hospitals or clinics. For example, parking costs alone could reach into the $100 range.

Contrary to what you may have heard so far, there is no country in the world that prohibits the reimbursement of expenses for donors. In the United Kingdom and France, where the sale of sperm is prohibited, the reimbursement of expenses is explicitly allowed and is the normal practice. Without reimbursement for out-of-pocket expenses, the SOGC believes that the level of donation in Canada will drop dramatically, making an already difficult situation inadequate.

We would also bring to the attention of the committee the fact that the Royal Commission on New Reproductive Technologies, which exhaustively reviewed this issue, also came to the conclusion that reimbursement expenses should be allowed.

In conclusion, Madam Chair, we urge the committee to take a very hard look at the bill, which could have extremely serious consequences for women and their families in Canada. Without appropriate amendments, an ill-conceived, poorly designed bill could be devastating to the hopes of 15% of Canadian couples. It could also slow the growth of our knowledge and understanding of many serious genetic diseases.

Thank you.

The Chair: Thank you very much. Who's next?

Ms Madeline Boscoe (Staff Member, Winnipeg Women's Health Clinic): Thank you very much for inviting us to come here today. I must tell you that we thought we were coming to a very informal round table discussion, so I'm not sure we're as prepared as our colleagues. I guess we had visions of tea and a couch, actually. I think it might be useful to put this in context for you.

My name is Madeline Boscoe. I work at a unique organization in Canada. The Winnipeg Women's Health Clinic is a community health centre for women. It's 20 years old. It's an attempt to demonstrate consumer leadership in the provision of health services to women.

In that context, we have been involved with the issue of the management of new reproductive technologies for more than ten years. We first actively did research and needs assessment, and then we did research on the royal commission.

In the development of our policies and positions, though, we do go much farther afield into our community than our organization. The issues I'm raising here today come from a broad-based discussion with women with disabilities and infertility, and women who have had a lot of experiences with these technologies as well. This was in an attempt to try to build consensus and a common understanding in our community, which is a challenge for all of us as Canadians, as we're hearing today.

Our programming at the clinic also includes issues of infertility. I coordinate an endometriosis support group. I work hard on issues of access to medical technology for women. However, we are infinitely grateful that this government has brought this legislation forward, and we are here today to speak in principle in support of it. We have enthusiasm for the leadership that has been shown.

We are frustrated with the lack of coordination, the lack of understanding, and the use of women's needs and worries to further product development agendas by companies and corporations, and frankly, career path issues.

I see this bill as a very important statement by Canadians that we need a needs-based approach to medical research in this country and to service provision.

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I quarrel with the statistics presented before you today of an infertility rate of 15%. I'm here to tell you, as a person who works basically at the community level, that we do not have as much of a problem with infertility in this country as we do with fertility control, the prevention of reproductive diseases, and support for mothers and children living in poverty.

We are losing our best and our brightest to some of these technologies, and I need them back where the issues are. So I see this technology as helping give some direction to that. It is in that context that I come forward.

As for some of the fine-tuning about some of the words in the legislation, fine, but it's very important to us at the Winnipeg Women's Health Clinic that this is seen as a Canadian health population issue that all Canadian own. This is not an issue for physicians, researchers or the industry. Reproductive health issues for Canadians are about our families, children and futures. They are not about a solution to our economic troubles in this country.

I'm very frustrated to be in environments where often those issues are mixed. We're talking about people's identity and who they are. I think tampering with gene lines as a solution to health problems is a very narrow focus. So it is in that context that I come forward today.

We are very pleased to see this, but I would say that - others have mentioned this - the women we work with need a comprehensive strategy. We see this as a first step. It's infinitely important for a regulatory model to come forward very quickly as well as a sexual health framework and, more importantly, an education and community process that will put these issues out for debate in our communities.

I would use the example of tobacco, if you can stand it. Some 20 years ago, we didn't just legislate on the issue of tobacco, but we also spent money educating communities and consumers to make them understand this.

A very wise man once said to me that I was really big on laws, but he said that legislation can be often the failure of education. And though I am not speaking against this legislation, I think that as we go forward we need to understand there's a lot of confusion, concern, and misunderstanding out there.

I can give you an example. We get calls all the time from women who want to donate eggs to their sisters and are wondering about where to go. I'll ask a woman whether she has thought very much about it. She'll say she wants to be nice to her sister, who can't have a baby. I'll ask how well she gets along with her sister. She says she doesn't get along with her all that well. I'll ask how she thinks she's going to feel at Christmas seeing her raising her baby? Oh, she hadn't quite thought about that. She's not sure how she would feel about that.

I use that as an example of people quickly rushing into these technologies without understanding the complex pieces of their impact on families and personas.

We are also concerned, in fiscal resources, with how these technologies create demands when we cannot address the demands that already exist and that are not equally available. Ms Tregunna alluded to that.

We do have some specific recommendations. I guess you have a copy of what we sent in, so I don't really need to address it. The first one is very close to our hearts right now, as we are now interveners at the Supreme Court level on the case involving the glue-sniffing pregnant young woman for whom Child and Family Services sought mandatory treatment.

I think it's very important, as this legislation seeks to set a context for how we're managing these things, that a statement be put into the legislation that suggests the government should not unduly regulate in the area of reproduction, except in the broader public interest.

In that light, we'd like to see the two recommendations from the Royal Commission on New Reproductive Technologies included in this government's legislative package. Those are, namely, that judicial intervention in pregnancy and birth should not be permissible, and that unwanted medical treatment and other interferences or threatened interferences with the physical autonomy of women be recognized explicitly under the Criminal Code as criminal assault. We do this because we think women also need protection from their protectors.

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The other wording we would like to see added seeks to enhance the philosophical framework of this act, that is, particularly to start using language that reflects human rights, diversity and human dignity. Part of the threats we see from these technologies goes to the core of our values about who is human and what is a reasonable life. Therefore, we think having this kind of language in the preamble will help to enhance that broader understanding and reflection of Canadian values.

There has been a fair amount of debate in the women's community around the prohibition of sex selection. We have struggled long and hard with that in Manitoba and have come to the conclusion that we strongly and fervently support the criminalization of this. And although we are concerned that the issue of genetics and genetic screening - and the impact and prejudicial effect that has on people with disabilities in our country - is absent in this bill, there is no place for sex selection, outside of health issues, that we can see.

I'd also like to allude to the issue of choice, of offering women choice. Based on our experience in Manitoba, when women talk about choices, they want choices on when to have babies, where to have them and the kind of treatment they can have. We don't have those choices, yet we've been asking for them for twenty years. We'd much rather see some of those addressed before we start looking at others. We'd much rather pull back and look at a broader need rather than just a need that's created because we have some technology finally available.

So to that end, I will close by saying that we commend the government, and we know it's tough, but we are very grateful to see some federal leadership and we look with enthusiasm for the anticipated legislation on the regulatory aspects. And we also anticipate an education program that will bring this closer to home.

Thank you.

The Chair: Thank you. Thank you all very much for your presentations.

We will start with Madame Picard for ten minutes of questions and answers, and then we'll go to the government side.

And we won't forget you, sir, just because you're a male!

Voices: Oh, oh!

The Chair: Pauline.

[Translation]

Mrs. Pauline Picard (Drummond, BQ): I would like to make a comment before asking my questions. I was very surprised by the statements made by some scientists; or maybe I did not get it right. I would agree with all of you that Bill C-47 may not be perfect and that we should make several amendments. It might not be the ideal bill, but you're here so that we can work on creating a piece of legislation which will provide a good framework for these technologies which, by the way, might be a step ahead of us; maybe we're lagging behind.

I was a bit disappointed when I heard some of you say that you did not want the bill, that you should be left alone to do your work and that, otherwise, you would go elsewhere. I am neither a scientist nor a doctor, but I've been duly elected. I am legislator and I want to do my work properly. I represent people who have to live within the confines of the law we agree on here.

In a country like Canada, where technologies are quite developed, it is important to have regulations. More and more often, very efficient research scientists come up with solutions and new technologies to protect our health, and help develop a treatment for some diseases. We can't afford to do as we please. It's very important to set up regulations and right now, we have none. It seems to me that we are behind a lot of countries in this regard.

Now, I would like to ask a question to Dr. Miron from the Institut de médecine de la reproduction de Montréal. The work he does in Quebec is, I think, quite admirable.

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He told us that his institute has set up a special ethics advisory committee. I would like to know what happens when you undertake new research. What kind of framework do you establish, so that you don't run the risk of going against moral and ethical values?

Dr. Miron: Thank you for your question, Mrs. Picard. I should mention that we have established our committee as soon as the Institut de médecine de la reproduction de Montréal was created. As doctors, we believed that it was important to be able to count internally on people who represent the whole community to help us take decisions which are not always easy to take.

As you can see, if such a bill has been tabled, it's because there is cause for concern. We felt that there was a need for an ethics committee. Then, the Institut grew and when a research arm was added about three years ago, it became important to strengthen the ethics committee. We mandatedMr. David Roy, who works for the Clinical Research Institute of Montreal and who is a well-known bioethician as well as a theologian, to prepare a document on protocols and processes. He consulted with about 50 clinics all over the world, in England, in the United States and in other countries. He was rather surprised to hear that a number of clinics don't have an internal ethics committee. When he gave us his report last fall, one of his most important recommendations was that the chairperson of the ethics committee be directly accountable to the board rather than to our doctors or scientists.

I should also mention that the Institut de médecine de la reproduction de Montréal has an extension in a university research centre, at the CHUM's Pavillon Notre-Dame. Before a research project is undertaken, it is presented to the hospital's ethics committee for approval. We see this process as a kind of protection because we are aware that there is cause for concern; however, we feel that this type of research should be undertaken for the benefit of infertile couples.

As a doctor, I decided to stay in Canada; this was a personal decision. I consider myself quite privileged to be able to practice medicine; it's an extraordinary profession. Indeed, I did have a choice to make at one point in my career, because there was no funding to develop these technologies. You have to realize that sperm banks, at least in Quebec, receive no governmental financing at all. Therefore, we had to find innovative solutions. After three years of exploring all possible avenues to set up a public centre, we were told that no, there was no money. We could have turned our backs and gone to the United States to work, which would have been the easier solution. This is not what we chose to do. We chose to stay in Quebec, in Canada, and to work for couples who need us. Unfortunately, infertility is very much taboo. To introduce a bill as criminal legislation is going to make the matter even more taboo for infertile couples. Don't you find it rather strange that, among the committee's witnesses, there is no infertile couple? There is a very special reason for this; infertile couples are afraid to come forward and tell everyone about their private life. The subject remains very much taboo, mainly because those technologies are not financially supported by governments. It's only when a legislative framework based on the Criminal Code is contemplated that these technologies are recognized. I find it totally absurd that, on the other hand, these couples get no support at all. As I mentioned earlier, all recent initiatives had the opposite effect and created more difficulties for infertile couples.

Who could tell me what positive effect the recommendations which were put forward had for infertile couples up until now? I don't see any. Infertile couples are left on their own. They get no help from the various levels of government or private insurance companies. They face their problem alone. They can't share with others what they are confronted with. Among the missing elements in this process is the participation of infertile couples; unfortunately, they are not prepared to come and fight because they find it too painful. That whole subject is taboo. They'd rather keep their problem to themselves, and it is therefore important that we come forward to make our concerns known.Mrs. Picard, I believe there are ways to reach the same objectives without resorting to the Criminal Code, but rather by using licensing mechanisms.

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Mrs. Pauline Picard: Dr. Miron, what is your opinion of the scientist or the doctor who implanted embryos from two different couples in the same surrogate mother? To me, it's a real aberration, and this is why I believe such practices should be dealt with somewhere in criminal law. The body of woman should not be considered as a scientific lab.

Dr. Miron: I can tell you that this type of thing never occurred in Canada. We have codes of ethical practices, and today, very reputable organizations such as the Society of Obstetricians and Gynaecologists of Canada and have developed clear recommendations regarding this fertility technology.

Licensing agreements under the control of the provinces would be very effective. For a doctor, loosing his or her right to practice is extremely serious. So you already have there a way to exercise your authority. You can use mechanisms which are not expensive, which are not extraordinary and which do not bring the Criminal Code into play. There are ways to deal with this. I do not understand why, as a first step, this was not contemplated. I think that one of the soundest mechanisms would be first to try and establish a licensing structure for these clinics. Then, if this approach did not work, resorting to the Criminal Code would be justified.

I am convinced that by using those simple mechanisms, you would be able to control deviant practices. As doctors, my colleagues and I do agree that we should get to know these technologies gradually, that deviant applications should be banned and that this is not necessarily simple. However, on the other hand, we have to realize that, by setting up a legislative framework to control the evolution of science, we run the enormous risk of limiting the improvement of all technologies. In the end, it's infertile couples, thus society as a whole, who will benefit from these improvements. I believe that when we help infertile couples, we also help society as a whole.

Mrs. Pauline Picard: You would not be tempted to criminalize human cloning?

Dr. Miron: I can tell you that, personally, I am against human cloning. I think that in Canada, the one advantage we have is that, thanks to the committees, research is very ethical. I believe that some mechanisms are recommended in the report tabled by the three- party committee. We can work with the provinces and find a way to protect ourselves against these deviant practices.

Mrs. Pauline Picard: Thank you.

[English]

The Chair: Thank you, madame.

Mr. Volpe.

Mr. Joseph Volpe (Eglinton - Lawrence, Lib.): Thank you all for coming here, and thank you for sharing with us some of your thoughts in addition to the presentations you've made. I'm wondering whether a specific concern is developing amongst those in the professional community and whether that concern has a lot more to do with fears that are associated with your practice, not so much with the legislation itself. Let me elaborate for a moment.

As you know, the legislation came about as a result of a royal commission that travelled the country for a substantial period of time, 1989 to 1993, I think. That's a substantial amount of time, and I think they consulted widely with just about everybody. Every stakeholder imaginable in the country was involved at a time when the technology, at least as far as Canada was concerned, was not nearly as advanced as it would appear to be about three or four weeks ago.

I don't know how to put this diplomatically. Is there perhaps a greater anxiety than there should be with this legislation?

Dr. Schuurmans: Could I answer that question?

Mr. Joseph Volpe: Okay.

Dr. Schuurmans: Clearly, there are parts of the bill that I think we would be strongly in favour of. With regard to the question of Madame Picard about human cloning, about surrogacy, we are as opposed to those things as any other regular Canadian is. It's just that there are technical aspects of the bill that have obviously been written without sufficient advice from experts. And they create a blanket approach for things that are nowadays normal practice in all countries. I think it has to be clear that big parts of that bill are fine, but there are other parts where the person writing them clearly didn't really know what goes on.

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I should also say that many of the issues we have raised were mentioned by the Royal Commission on New Reproductive Technologies. When they wrote this bill, they did not take into consideration everything that was said by the commission. As an example, as I mentioned, the reimbursement of expenses for sperm donation was suggested by the royal commission. The royal commission also talks about those issues that are more technical, which my colleagues at CFAS discussed, such as what needs to be done when you're talking about research into infertility. I think there are some clauses in the bill, particularly clause 4 on the prohibitions, that are rather simplistic and that were written without knowledge of the details.

So it's not that we're opposed to the whole thing. I think that needs to be clear.

Mr. Joseph Volpe: I know that Dr. Kazimirski wants to join in. If you promise to give me a really short answer, I'll stop myself, because the chair has me timed. Being kind of egotistical, I want to use the time up all by myself. Would you do that?

Dr. Kazimirski: I will answer very quickly. I think the anxiety is real. This is a complex area. Reading in the newspaper last week about the sheep, Dolly, creates fears and anxieties not only in the professional community but in the public, and there's a need to protect the public.

But the real issue here is that this legislation inhibits access to appropriate reproductive service and reproductive research on behalf of women. That's the bottom line and the basic concern.

The other concern is that in its inclusiveness or exclusiveness, the legislation itself did not consult widely, and when it did, it didn't take the advice of its own experts. Number one, the Royal Commission on New Reproductive Technologies was out of date five years ago. Things have changed. Number two, the recommendations of their own embryo research group were also not accepted.

So the concerns you're hearing from the broad scientific community are based on the fact that this legislation does not meet the current reality for women's needs and research needs in the area of reproduction in this country.

Mr. Joseph Volpe: Let me thank you for bringing to our attention that we've come a long way in four years. In fact, we've come a long way in six months. When I brought the bill forward in the House for second reading, there wasn't a lot of interest in the country, and a lot of people said that this was sort of science fiction business. I recall that when I was in Toronto about three weeks ago, people on all the talk shows were wondering how come the Canadian government was being lax and slow in responding.

Now, there's something else you said that kind of twigged with me. The normal process of creating legislation does not necessarily involve going to every single stakeholder and asking them for their input on the specifics of the legislation itself. There's wide consultation, as you have acknowledged, but that doesn't mean that every stakeholder gets exactly what it wants in the legislation. The legislation is written in sufficiently broad terms in order to encompass all aspects of the intent of the legislation.

The legislation also always has - and you'll find this with every piece of legislation - a clause that permits and envisages the creation of regulations that are themselves subject to amendments later on. When those regulations come forward, the public has an opportunity to respond to very specific items.

I think that would capture some of the concerns that Dr. Schuurmans has already indicated.

Before I get carried away a little bit, I want to say there has been a lot of banning already in France, New Zealand and other places. When I looked at the legislation, I said, what's new? It sounds to me as if Canada's playing catch-up. It's not embarking on something brand new.

For Dr. Rittmaster, just put yourself in a car listening to these talk shows in which they discuss whether or not Canada's doing something. If you were a listener to one of these programs, would you be in favour of or against the transfer of embryos between human and other species; the use of human sperm, eggs or embryos for assisted human reproductive procedures or for medical research without the informed consent of the donor; or perhaps research on human embryos later than 14 days after conception, or for the creation of embryos for research purposes only?

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I'm not blessed with the objectivity that goes with being a scientific researcher. I'm only responding to the way the public would respond to some of the activities that we consent to or permit in society.

It seems to me that people have been against creation of animal or human hybrids, retrieval of sperm or eggs from cadavers or fetuses for fertilization and implementation. They've been against cloning of human embryos, as we've heard in discussions over the course of the last couple of weeks. They've been against germ-line genetic alteration. In fact, so have other countries.

I'm not inventing these items. These are all items that are right in the legislation itself. It seems to me that they respond to issues that have been raised in the past and have elicited enormous public concern. Surely that's a responsibility of any legislative body. You've done well in saying we want to do things that are appropriate for the health of Canadians, most particularly for infertile couples. You've used a number that I think is contested. I think it's about twice the number that's accepted. But I don't want to quibble with that. You make a point. You've used that point, but if we speak only about the health of Canadians, then I think, as I said earlier on, I'm not sure that our anxiety is not a little bit overstated in order to drive home a point.

Dr. Rittmaster: Let me first say that I think we've done badly today if we've made you think we're against those things that you profess.

Mr. Joseph Volpe: That's what you made me think.

Dr. Rittmaster: Most of the prohibitions you've mentioned I think everybody in this room would agree should be prohibited. That's not our concern. Threre are two specific concerns. Are we playing catch-up? We'd be the first country in the world to ban compensation for semen donation. No other country bans compensation as distinct from payment - compensation for expenses. So first, yes, we would be setting ground.

Mr. Joseph Volpe: But in fairness, the legislation is envisaging already that you might have to meet the expenses that are incurred. But there's going to be a regulatory system coming forward and there's already discussion in place. So if the entire question is one strictly of compensation, you're already aware that there are other countries that have gone to a completely voluntary system.

But in the course of our discussion, I think we should understand exactly what that means, whether it's a question of payment that generates sperm donation, or whether in fact we're talking about, as you indicated earlier on, the health of Canadians that's associated with whatever process gets the sperm into a sperm bank and for whatever purpose it's going to be used.

I had a group who ran one of the oldest sperm banks in Canada. They have a very elaborate system for screening. They try to make a real case for, believe it or not, just compensation for expenses incurred - nothing else, not payment. In fact, by the end of the meeting they said a voluntary system, as far as they were concerned, is the best one as long as the people who make the donation don't have to sustain any out-of-pocket expenses.

That sounded to me a lot fairer than saying we have to go a different route.

The Chair: Mr. Volpe, you ran out of time.

Mr. Joseph Volpe: I ran out of time. You see, Doctor, this is why -

The Chair: But we could probably find some time to come back to you.

Mr. Joseph Volpe: - she ended up giving you that extra two minutes.

Dr. Rittmaster: There's just one more in terms of the embryo research that we focused heavily on.

The problem is that in the medical community we've incorporated research as to encompass a lot of health care - what we do in health care - developing new techniques to make the in vitro fertilization process better. In fact, when a new physician or technician first tries to do intracytoplasmic sperm injection - making a sperm into a single egg - they're creating an embryo. You can't learn that right off the bat with human material. You start with animals, but then you have to go to humans. If we define that as not research but technique development, or whatever, then there isn't as big a problem. But in the medical community we call this research. So I think that if the bill is going to ban the creation of embryos for research, it has to define very carefully what research is and what it isn't.

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The Chair: Thank you.

Mr. Joseph Volpe: She won't let me answer.

The Chair: We might get back to you.

Carolyn.

Mrs. Carolyn Parrish (Mississauga West, Lib.): I'd like to agree with Mrs. Picard. I'd like to point out to the group of scientists - we have one pigeon among the cats, I see, who didn't agree with them, and I'm curious as to why you were put in with this group, but we'll figure that out later - that one of the things we do as legislators is take into consideration many things, as Mrs. Picard has said. I am very much in favour of science and research. I lean more in that direction than I do in a religious direction. But as legislators we have to take into consideration the wishes of all of our constituents, and there are many people out there who believe that when an egg and a sperm are united, you've created life, and to use them for experimentation would offend probably 40% or 50% of the Canadian population. So you have to understand where we're coming from. We have to be very concerned about that.

I'm curious as to whether or not Dr. Miron has any clergy on his advisory board, because I'm sure he would have received a talking to and probably would have been excommunicated from whatever religious institution he belongs to.

My concern, again, is the idea that we reflect standards that are acceptable to the Canadian public generally. I have a riding with 250,000 people. I took the trouble in my last householder to print the regulations. You would expect that with all the medical people in that riding I'd get a lot of objections. I got none. You would expect that I'd get objections from infertile couples. I got none. I got a lot of letters saying that there were people who had gone through the torture of being implanted several times when the doctor knew full well that the person would never be able to have children, and that perhaps these regulations would make you choose your patients more carefully.

I'm very concerned that at the corner of my street a massive, multi-million-dollar facility has been built by three doctors who do this for a living, and their only concern is that when they get above OHIP, it has to be cash on the line. That makes me very concerned as a legislator. But that's a speech. We don't do that very often, but occasionally we have to.

The Canadian Fertility and Andrology Society talked about injecting a single sperm into an egg in order to help infertile males to be able to actually father children, which I found to be a fascinating idea, and you used the term ``normal'' or ``normalcy''. I have not studied a lot of science but I know the process of natural selection, and in some cases when males produce faulty or weak sperm, they're not intended to reproduce...whether it's religious, scientific or Mother Nature. When you do that process, is there any guarantee that this coupling of sperm and egg will be normal? What do you do to check that? What do you do if you find out that it isn't?

Dr. A. Leader (Vice-President, Canadian Fertility and Andrology Society): I think that as the royal commission stated, you have to look to evidence. In other words, evidence decides practice and it should decide policy.

In studies that have been done first at the centre in Brussels that pioneered ICSI and in follow-up studies, there have been no adverse effects reported when you do the single-sperm injection. That involved medical geneticists looking closely at well over 1,000 children, and it is now well over two years since the initiation of the ICSI procedure. So the incidence of chromosome abnormalities in those children is no different.

Mrs. Carolyn Parrish: Is there a point at which you test and you abort the fetus if it is abnormal?

Dr. Leader: Genetic testing is always available to those couples who are pregnant. What is usually done is that you check the chromosomes of the male whose sperm you're going to be using so that if there is an obvious chromosome abnormality, good practice requires that you counsel the couple that they not consider that technique. In other words, if he's a carrier of an obvious genetic abnormality, you in fact advise them to pursue some other alternative, such as donor insemination.

The issue of embryo research is one that you also have to look at. There are techniques currently being researched in Australia, which regulates but does not make it criminal to do these activities, of growing the embryo to six or seven days. Now, you're still not in the fourteen days, but it is a blastocyst, and instead of people having to undergo two, three or four attempts, the pregnancy rate per attempt is 70%, as reported in initial studies both there and in the United States.

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The research, which in fact still has to be done, would save women and their partners the problem or effort of having to go through repeated attempts. But you can't just transplant that kind of research into Canada from Melbourne or Sydney, Australia. There comes a time when you need to undergo an assessment of your ability to do that.

The problem we have with the bill is its blanket prohibition. If we could introduce a regulatory framework with a regulatory body...if they said no and you did it, you would then be criminal. What they've done in this situation is put the criminalization before the regulatory, and that's the problem. It's not so much the substance as the fact that the whole process has been different from what exists in other countries, so making a wholesale comparison is not appropriate.

Mrs. Carolyn Parrish: If I might, Madam Chairman, I'd like to ask a question of Dr. Miron.

You talked about working in a privately funded hospital and about having a board of directors or advisers. I'm not being facetious, Dr. Miron, but do you have any religious persons, any clerics, on that advisory board?

[Translation]

Dr. Miron: On our board of directors, no, there are none.

[English]

Mrs. Carolyn Parrish: There aren't any on your advisory board.

[Translation]

Dr. Miron: Until very recently, Hubert Doucet, who is Dean of the Theology Department at the University of Ottawa, sat on our committee and we now have to replace him. As you know, he now wants to focus his activities on his own area of expertise. He also felt that Ottawa was a bit far from where we are, but we were proud to have him as an advisor, because he could give us a theologian's point of view. Sonia Le Bris now chairs the committee. She is a lawyer and, as it happens, her thesis was on medically-assisted reproduction. So she's very well versed in the subject.

[English]

Mrs. Carolyn Parrish: Excuse me for interrupting you, Dr, Miron, but I don't get a lot of time. Mrs. Hickey is going to nail us all in a minute.

What I'm looking at is this. You talked about establishing your own ethics councils, and said that your own people help you establish ethical procedure in your hospital. I hope I'm not making a presumption, but I assume that a French-speaking hospital where you come from would be very much like a Polish-speaking hospital where I come from; we're almost all Catholic. Do you have clerics, any religious persons, on your ethics advisory council?

[Translation]

Dr. Miron: As I said, Hubert Doucet, who is a theologian, sat until recently on our ethics committee and he will be replaced, I hope, by someone who also has a religious background which, for us, is important. I would like to point out that our institute is not a hospital, but a private clinic, and we are not located within a hospital, although we are affiliated with a university medical centre.

I would like to support and clarify what Dr. Leader said. There is not doubt that our concern, as doctors or scientists, is that research be criminalized, that the law cover so much that doctors do not dare to do any research to improve existing technologies and make some progress. You can imagine what kind of impact this could have in the end. Dr. Leader gave you a good example of what would happen if we refused to improve existing technologies, if we were unable to simplify them for the benefit of woman and if we were forbidden from creating embryos for research purposes. Paragraph 4(1)(k) stipulates that no person shall knowingly "cause the fertilization of an ovum outside the human body for purposes of research".

When we try to help a couple by offering in-vitro fertilization, we consider as research what we do to improve the culture media so that we can transfer the embryo at a more advanced stage. For us, it's research work.

Are we, as doctors, going to refuse to do this because we're afraid to be charged, to violate the Criminal Code, to be jailed or to have to pay a $500,000 fine? In the end, the impact will be extremely negative for infertile couples. We have to be aware of that.

[English]

Mrs. Carolyn Parrish: The Canadian Medical Association presentation talked about a code of ethics and informed consent. To me, informed consent is a very complicated issue, as is the issue at hand. Unless you've taken a bit of science, the terms that you have used can be very difficult.

When you have a couple who are desperate, how informed can that consent be? How easy is it to manipulate people who desperately want children? How easy is it to tell them that something might be shaky, but you're going to try it for them anyway? How do you guarantee informed consent with desperate people?

Dr. Kazimirski: I think you're right that infertile couples are ``desperate''. I'm a clinical practitioner, was chief of obstetrics in a community hospital, and I have developed programs for women's health in our province. I would therefore say that the incidence of infertility in my practice is 15%.

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When couples come for consultation at my level it is fairly general, but the concept of informed consent means that the patient or the couple needs to know, number one, what their problem is. You need to make a diagnosis. There is an investigative procedure that they go through. The patient and the couple are given all of the information that relates to the stage they are at. Their informed consent really relates to both the information on the procedure and the consequence of the procedure for them as individuals and as a couple.

If they are referred to an infertility centre - and Dr. Schuurmans can talk to this in more detail - there are very close, careful guidelines laid down for the advisement of infertile couples. The services of a social worker or a counsellor are made available to them, and that person can help them look at, number one, what all of their options are. It's not simply the application of reproductive technologies. It's that the inability to conceive in the normal course of events has been investigated and the decision has been made that the person can't have a child, so what are the other options? Informed consent means looking at that as well.

If they elect to proceed with a further application of technology, the process becomes very detailed. Yes, they are desperate, but they are also involved in a process that is so long that they do not fail to have access to information which lets them give what I would consider truly informed consent.

If one looks at the responsibility of the practitioner, these people are involved with practitioners at many levels, usually with their family physician who is the coordinator of their care, who makes the initial referral, and who often translates some of the scientific details for them, and also with their specialists and the sub-specialists who are involved in their care. I think perhaps Dr. Schuurmans can give you a little more detail on the specialist's role, but it's -

Mrs. Carolyn Parrish: I understand the mechanical process of it, but what I'm getting at is that if you have a 1 in 10 success rate or 1 in 20 success rate, any desperate couple that comes in and sits in front of you thinks they're going to be the 1 in 20 or the 1 in 10. I really am concerned that without some sort of regulation these procedures are being done far too frequently to people who don't have much of a chance of conceiving children.

Dr. Kazimirski: I hear your concerns and I hear you using the word ``regulated'', and I think that is absolutely right. There needs to be tighter regulation around this whole arena. But criminalization? No, I don't believe that is the answer.

Yes, people are given information, and how people absorb information in a crisis situation is very much an individual issue, but I think the system has been set up in most centres so that this fear is addressed.

It's important to know what happens in this country. First of all, there is regulation of practitioners. There is also regulation of facilities. And in this country, there is very strong regulation of the research community with regulation that has one element called a ``research ethics board''.

So with regard to your concerns about the research component of this document, when proposals go before research ethics boards in this country, they go before a board that has consumer representation and professional representation and that evaluates each of these proposals in terms of its ethics and its science and makes a decision on the basis of very closely developed national standards.

You need to know that the development and monitoring of national standards for research in human subjects in this country includes genetics and reproductive mechanisms and is very closely regulated by research ethics boards that are subject to review by your Medical Research Council and by NCBHR, the National Council on Bioethics in Human Research.

There is a national guideline for the standards that must be followed, which is currently under updating and review by the three granting councils. With respect to your concern, the process of appropriate regulation of research activities is very well conducted, reviewed and implemented in this country.

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Mrs. Carolyn Parrish: Dr. Kazimirski, you'll have to forgive me if I'm not as confident about professional review boards as I should be, because this same country allows third-trimester abortions. They don't regulate that and they don't stop it. The same country that allows abortions -

Dr. Kazimirski: Excuse me. What is a third-trimester abortion? There is no such thing. Abortion is defined as the termination of a pregnancy prior to the ability of a fetus to survive outside the uterus. Third trimester means that baby is well on its way to surviving on its own -

Mrs. Carolyn Parrish: And you say that there were none done in this country -

Dr. Kazimirski: No one would do a third-trimester abortion in this country. Absolutely not.

The Chairman: Mrs. Parrish, you are way over your time limit.

Ms Boscoe, I really apologize for the couple of times you've tried to say a few words and couldn't. Would you like to do so now?

Ms Boscoe: That was a great ending!

Voices: Oh, oh!

Ms Boscoe: I have two comments. I was prompted to comment on the sperm going into the egg for the treatment of male infertility. Male infertility is a problem, but why is it that our treatment involves medicating women and exposing them to surgery and surgical risk as a solution? We don't do that in any other area. It seems odd that we could think of that as a legitimate medical response to a male infertility problem.

In the area of experiences with informed consent, we have done some research at the Women's Health Clinic and I think it has been found in other places...I should say this with some apology, because I do hear the earnestness and the concern of the individual members of the profession who are here. However, when it gets to actual practice, in fact, too often these areas actually function as intake information sessions for medical procedures. That has to do with the fact that they're on-site and the people involved have too many other responsibilities, such as running a research project or having clients booked who are lined up for treatment. This happens with infertility treatment, but also, more importantly, with genetic screening.

So I do concur. In our research projects in this area, our experience at the clinic has been that women do not get full information, they do not get a chance to process it in a safe environment, and it tends to be a very medical model.

I'll give you an example. You come in because of infertility, and they say to you, ``From now on your sex life is going to be timed. Have you ever thought about the impact that might have on your relationship? Do you understand what it means to be angry at your mate?'' Those are complex kinds of processes. Or there is my story about the girl who wanted to donate an egg to her sister. That broader familial context is very rare because they function as intake processes to procedures. It's very procedure driven. The issue of informed consent is much broader and cannot be left to the discretion of a medical encounter. That is part of the problem.

I think the other thing we're talking about here today is resource allocation. What is it that our best and our brightest are doing? We hear concerns that research is going to be cut off.

And I do feel very strongly that 15% of the Canadian public is infertile. We have all sorts of problems, including people who diagnose themselves as infertile because it's September and they want to have the baby in June. That's not how people have babies. We also see a fair number of women at our clinic who are postponing parenting because of economic considerations and who are not being told that this is not an ad infinitum choice. We do need to see other kinds of education going on in our communities to let people know when people are meant to people, if you know what I mean.

The Chair: Thank you.

The committee was supposed to be finished at 5 p.m., but if I may, I have a question I'd like to get an answer to before we do that. Then if time allows and if there's a second question from my colleagues, perhaps we can go until 5:30 p.m.

Colleen, do you have a question? Go ahead. I'm sorry about that.

Ms Colleen Beaumier (Brampton, Lib.): I think most of you presenting today understand that this really is more than just a research issue or a medical issue.

I was under the impression, Dr. Rittmaster, that you really feel no legislation is necessary. Yet not too long ago in the United States, they had the cloning of primates. When the medical community realized this they rushed in and destroyed all of the medical records. You can say this isn't happening in Canada - yet. How can we be assured that the scientific aspect of this isn't going to run wild?

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Dr. Rittmaster: First, I've again given you the wrong impression. We are not against legislation in this area, and we would support a lot of Bill C-47.

Second, a lot of what we've been discussing in the last fifteen minutes actually isn't covered at all in Bill C-47. Bill C-47 says nothing about the issue of informed consent. The interaction between the physician and the patient and the rest of the health care team isn't really discussed.

We do believe there is a need for regulation in this area. A lot of this regulation goes beyond Bill C-47, so I don't think there's a whole lot of difference between what you're saying and what we're saying. There are a couple of areas of Bill C-47 we have major problems with. We feel those need to be addressed. We don't feel that Health Canada listened to us when we said there needed to be some amendments.

Mrs. Colleen Beaumier: The other issue that seems to jump out at me is that we're talking about money. Most of the procedure is not covered by any health plan, so we're once again talking about people who have the financing and who can put the pressure on. The poor are certainly disadvantaged in this area. If you're poor and infertile you probably won't have children, but if you have money.... How do we put the brakes on? I'm sure a number of you are under considerable pressure from many of these groups. I'm not sure how we get the balance here. Do you think it's possible?

Dr. Rittmaster: I'm going to give that to one of the fertility specialists.

Dr. Leader: I think the issue is one of social justice. In the Canada Health Act...in the meeting of the ministers in Banff they specifically said in vitro fertilization should be de-insured. I can speak of the issue here in Ottawa and elsewhere. If you happen to be Islamic you cannot use donor sperm if you are a male. You cannot adopt because it's against the teachings of your religion. So you have one choice if you have sperm, and that's sperm injection, period. They will find the money because there is no other choice. The issue you're talking about is social justice.

What you need to do is say that the Canada Health Act includes infertility and the treatment of infertility and therefore the provinces will have to pay. If they're going to conform with that they're going to have to pay.

Specifically, the federal Minister of Health said in Banff two or three years ago that infertility, and IVF in particular, should be de-insured and should be a considered a cosmetic procedure, such as repairing torn ear lobes and removing tattoos.

Make it a social justice issue and then accessibility won't be a problem.

I can tell you - because I keep the Canadian IVF registry - that the use of this technology has gone down, not up, and that we treat patients later in Canada than any other jurisdiction does. And based on whatever percentage of infertile you want to use, whether it's 8%, which is the U.S. figure, or 8% or 9%, which is the royal commission's figure, we still underutilize this technology compared to any other country in the world. Physicians and patients are very cautious in the way they use this technology. The issue of who uses it is a question of social justice, and that has to be addressed as a political issue.

Mrs. Colleen Beaumier: Do you not also think that perhaps the use has declined because of some of the horror stories and the success rate and -

Dr. Leader: No. The population is aging and those people who are the baby boomers are now passing through this period of time when they're interested in reproduction. The backlog has been dealt with. Now you're dealing with a smaller number of people who have problems that are technically more difficult than the earlier ones were.

Also, the use is declining because the science becomes much more important. So the number of centres offering this is declining in Canada because not all of them can provide the science. If I'm a scientist or a clinician, the issue is not ``if you don't let me play the game I'm going to take my ball and bat and go to the United States'', the issue is ``if you don't let me do my job, what can I do?''

The royal commission looked at the issue of informed consent. They surveyed it. I was part of that survey. Patients who went through IVF or the infertility treatments, as surveyed by aDr. Stephens, did not complain about the process of informed consent.

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So if you want an objective survey that was done as part of the royal commission, the evidence is there. That's just to go back to that.

I think people are concerned that you're basically criminalizing an activity and stopping it, and that you are in fact making the whole issue of social justice worse. You're making it harder for people. I'll have to go to the States, where it's twice as expensive. I don't think that's what you want to do.

The Chair: I'll just ask a short question. Whoever would like to can give me the answer to it.

I just noticed that in some of your statements you mention that 15% of Canadians are infertile. I was wondering what the source of this data was? Is it a national survey in the United States or Canada? How do you measure infertility? Is it because after having sex, a year later you don't get pregnant, or two years later there's no baby? How do you measure infertility in people?

Dr. Rittmaster: The 15% is just what you said. We probably should not have used that particular figure. It means that after a year of trying, 15% of couples will not have conceived. I agree that this doesn't mean they necessarily have infertility, but that's their view.

No infertility specialist would consider seeing a person prior to that time unless there is a reason to suspect there is a problem. But the more realistic figure of ultimately how many people would need this technology would be down in the 7% to 8% range. So it's about half of that.

The Chair: It's about half.

Dr. Schuurmans: We did not use the 15% to mislead you. As he said, we don't arrange to see a woman for an infertility problem in our office unless she's been trying with her husband or partner for a year.

The Chair: Can I ask you how long is ``trying''? I guess I can use myself. For seven years I didn't have a child, and then ended up with twins. So was I infertile?

Dr. Schuurmans: Many people present themselves after six months of trying and say they want infertility tests. Most physicians would say no to them as they are within normal range.

But if you have a 34-year-old who says that she and her husband have been actively trying and then they come to you, then it is reasonable to initiate some testing into infertility in that patient after a year of trying. So that's kind of how we came up with that figure.

The Chair: My mother kept telling me that if I got my mind off of it, I would get pregnant. However, for seven years I took my mind off it.

Ms Tregunna: Could I just add this from a public health perspective? It's not directly related to the bill specifically, but the other side of the question is not only how many people are infertile, but how we can prevent infertility rather than dealing with it. That's completely not addressed in this bill, whereas prevention and promotion were a huge part of the royal commission finding.

The Chair: I know there are only a few minutes left. Mr. Volpe?

Mr. Joseph Volpe: There's one thing we didn't discuss here, which is that one of the objects of the bill is to address the issue of turning women and children into commodities. We didn't address that at all. I think you touched on it.

I'm wondering, number one, whether you think this is a laudable objective. Number two, we addressed this issue of informed consent. You'll forgive me if I inject a different perspective on what informed consent is. For me, it's the ability to deal with the information you have in a fairly logical manner that takes into consideration the value systems that brought you to the point of making a decision. I'm not sure I'm yet convinced that people have an opportunity to make an informed consent on the basis of what I've heard.

I'm wondering if in fact your point of view - I hope I'm not doing it an injustice - is one that is generated more by a desire to address things on a purely scientific basis and stripping the issue of all other additives to it than of simply one of scientific research, which I would imagine people would say should be unadulterated with other issues, whether they be societal, moral, or ethical. The legislation, in trying to maintain its non-religious approach to things, would still suggest there are some values that society cannot accept in a context of a purely scientific research model. Therefore, we must come across with legislation that addresses these issues.

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In conclusion, I notice that you chose the words ``criminalizing some activities'', which you've underscored on several occasions. I'm wondering whether you think that criminalizing some activities is an inappropriate way to convey the impression that society as a whole is serious about the consequences of those activities.

Dr. Schuurmans: I would like to respond to that. In response to the initial part of your question, which is whether we are in favour of using women and children as commodities, I think everyone in this room would support the government in its aim for that not to occur. In those cases, I would think criminalization is an appropriate response.

On the other hand, when you're dealing with purely technical issues of infertility in which there are many gray areas, and sometimes things have to be seen on a more case-by-case basis and looked at in the complexity of their cases from perhaps a regulatory commission or something like that, then criminalization is inappropriate in those instances, because it's too difficult to make hard and fast rules. I think that's the point we've been trying to make.

The areas we support in the bill are those for which we would agree with criminalization. The areas we do not support, which are well outlined in all of our briefs, are those that we feel are more appropriate in a regulatory agency.

Dr. Tanphaichitr: I'd like to make a comment. As a researcher in the field of human reproduction, I can say that a lot of research we are doing is for the sake of women.

Take, for example, egg maturation and egg freezing. These will prevent women from undergoing an ovulation induction regimen, which has some side effects. The clause in the bill that prohibits the fertilization of the egg by the sperm as such for the sake of research would inhibit the progress in this field.

[Translation]

Dr. Miron: I'd like to make a comment. We often hear that infertile couples are immature. Not so; they are adults who are often much better informed than anybody else in terms of medical knowledge. It's rather impressive to see how well informed these couples are about existing technologies. Some of the couples we see even subscribe to medical journals specializing in fertility and sterility issues. Often, these are well educated people who also did some research on their problem.

Before we go ahead with an in-vitro fertilization or an insemination with the sperm of a donor, we usually require that the couple in question meet with a psychologist. This is mandatory before any procedure is proposed. Our objective is not to assess their capacity as parents, but to ensure that they have made an informed choice. We came to the conclusion that even if we discuss the matter with a patient, it is not sufficient; we thought that adding this element was important.

This process can be questioned. We often come across couples who say that they don't need to see a psychologist, that they are adults, that they are not immature and that, as everybody else, they know what they are doing. Unfortunately, in our society, we tend to consider that infertile people are immature, which is not the case. My experience, which I share with quite a few doctors, shows that these peoples are very well informed. It's probably a branch of the medical practice where a lot of information is exchanged and where the various options - including adoption, which might be another choice for these couples - are discussed.

[English]

Dr. Kazimirski: I think it's important to reflect for a moment on the things we've been discussing this afternoon. These issues are extremely complex. Some of the concepts generate fear and some generate hope, depending on who your audience is.

But I think many of the things we've been talking about are not even covered in this proposed legislation. Many of the elements that would improve what is available to women now can be covered under an appropriate regulatory framework. The question everybody is raising is why is there the criminalization of the entire framework rather than specific elements? Why not look to a different model of an appropriate enforced regulatory framework to provide this service?

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The Chair: I'd just like to thank everybody for being here today. Thank you for your briefs and your interesting information you passed on to us.

Before my committee leaves, the next meeting is Thursday at 3:30 p.m.

The meeting is adjourned.

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