EVIDENCE

[Recorded by Electronic Apparatus]

Wednesday, April 9, 1997

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[English]

The Chair (Mrs. Bonnie Hickey (St. John's East, Lib.)): Okay, we can bring the meeting to order. I want to welcome everybody here this afternoon.

As I said earlier, we have a heavy agenda today, so we are going to keep everything on time or as close to on time as we possibly can. How we've been running these meetings is each member of the group will have five minutes to make their presentation. To save some time, when one person finishes, we'll just go right into the next person's.

I ask you to state your name and the organization you're representing to put that on record, and then we'll have questions for you after everybody is finished.

Ms Linda Newson (Member of Board of Directors and Chair of Bio-Ethics Committee, National Council of Women of Canada): My name is Linda Newson and I'm representing the National Council of Women of Canada.

The National Council of Women of Canada is a non-profit, non-sectarian umbrella organization founded in 1893. For 104 years we have been formulating policy based on societal issues of the day. Much of the work of council is done through our system of committees, the members of which are volunteers.

In 1987 our health convener advised that a bioethics committee should be formed to give guidance in regard to the issues arising around the developments in the new reproductive technologies. While living in Australia she had become aware of some of the issues as discussion took place around their introduction of legislation and standards in regard to these rapidly developing technologies.

A study guide was prepared and distributed to all our local provincial councils and to our national federates. All were encouraged to organize a common program related to this theme as a further means of educating our membership on the legal, ethical, and medical issues related to the new reproductive technologies.

In order to develop some policy following this exercise, a questionnaire was developed and circulated. When 65% of the respondents agreed on a response, it was accepted as policy. The body of policy developed at this time was ratified at the annual meeting to follow. Throughout the past decade we have added to this policy on the new reproductive technologies by the more traditional resolution process.

Throughout the past decade we have lobbied governments of the day to set up a royal commission to study this complex and challenging issue; we presented our policy to the commission as it travelled across the country; we responded to the report of the commission, Proceed with Care; and we urged the government to implement the recommendations of the royal commission.

Although we doubted that the voluntary moratorium announced in 1995 would be successful, we were pleased to see some indication that at last the government was taking the issue seriously. When it became evident that the moratorium was not working, we urged the Minister of Health to introduce legislation to deal with this escalating issue and responded in turn. Now we urge you to get Bill C-47 passed as swiftly as possible. The decade and our patience are running out.

Although our policy is not as extensive as that presented by the royal commission or the present bill, I will briefly share with you a synopsis of our policy as it relates to Bill C-47 and will follow with a concern we have with the proposed legislation.

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Prenatal diagnosis techniques to determine fetal sex for non-medical reasons should be made illegal. We are opposed to the use of the new reproductive technology for profit ventures, including surrogacy and the buying and selling of eggs, sperm, and embryos. Legislation should be enacted to prohibit the activities of any company or individual who would commercialize the use of the new reproductive technology.

We call for testing as well as strict, confidential record-keeping and monitoring of resulting births, and strict regulations limiting the number of times that sperm from one specific donor can be used.

Human embryo cloning and the formation of animal-human hybrids by combining animal and human gametes should be criminal offences.

Although we agreed with the royal commission on the need for a regulatory body to deal with licensing and research aspects, we did not agree with the need to develop such an extensive bureaucracy. We wondered if much of the regulation could be handled by other regulatory bodies presently in place, with perhaps the addition of a new department or division. However, we do feel there is an urgent need for an advisory body - a national council on bioethics, if you will - that would advise the government on the rapid developments occurring in this field and appropriate responses.

We also need to look at the big picture, the holistic approach. One part of the big picture is the whole issue of infertility. Our policy calls for increased funding of research on infertility and more research into and development of contraceptive methods that are less harmful, more efficient, reversible, and inexpensive. Funding for an educational program on the causes of infertility should be made available as well.

One concern we have with the proposed legislation is the indication that has been given that the small fee paid to sperm donors will be considered a selling of sperm and will be outlawed. In the many programs we held across Canada in 1987-88, doctors who spoke to our members represented this fee as an honorarium for the time involved in the gathering of medical history and the conducting of preliminary tests.

The strict interpretation of the proposed legislation may encourage an underground or offshore market where testing, guidelines, and controls are non-existent. It is also strange that you should spend so much time, money, and effort developing an excellent set of guidelines - schedule 721 of the Food and Drug Act of June 1996 - in order to outlaw it one year later.

In closing, we urge you to pass this bill as expediently as possible. In the past year we have seen developments that were unheard of or thought impossible a decade ago. We need the proposed legislation as a first step along the road to dealing with the ethical, legal, and medical aspects of the new reproductive technologies.

Like you, we have much work to do as we continue to monitor this rapidly developing technology. We will continue to develop policy and educate our membership in regard to new developments.

With the passage of this legislation, you will introduce legislation and guidelines that guarantee Canadians a safer and more socially responsible approach to reproductive technology. Canadians deserve nothing less.

The Chair: Thank you.

Ms O'Brien.

Ms Eileen O'Brien (Chairperson, Board of Directors, Disabled Women's Network of Canada (DAWN)): My name is Eileen O'Brien. I'm chairperson of the Disabled Women's Network of Canada.

We applaud the members who've worked to put forth this legislation. We know there are dangerous and frightening developments in these technologies for all of society.

It is our contention that when we allow dehumanized and eugenic practices that lead us to an illusion of creating a perfect society, we're going down a road where diversity and much that we know as human is seen as too costly. This legislation comes at a time of much perceived shortages in our country, and we know historically people with disabilities have been considered disposable in those climates.

We are asking for basic principles to be added to the preamble that include non-commercialization, equality rights of disabled people, equality rights of women, and protection from judicial interference in pregnancy and birth. The true measure of the value of new reproductive and genetic technologies lies in the extent to which they can benefit the individuals and groups who are most directly affected by them, and that is women and men with disabilities and non-disabled women.

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We support the NAC position that will be coming up and support the legislation where those principles I've just mentioned are met. We've worked with the Council of Canadians with Disabilities, and most of our grave concerns have been in what we see as a eugenic bias in the legislation. We want you to examine the soft language used to feel comfortable about eugenic practices.

In paragraph 3(a) of the legislation, terminology such as ``health and safety'', when used in the context of new reproductive and genetic technology, must be carefully evaluated to ensure it is not being used to promote a eugenic agenda. It must be remembered that the presence of a disability does not mean a person with a disability is unhealthy.

Bill C-47 fails in its objective to protect the dignity of all persons. The eugenic bias in Bill C-47 is an affront to all persons with disabilities. Paragraphs 4(h) and 4(i) are eugenic in nature and use the language of health to disguise the eugenic intentions. Paragraphs 4(h) and 4(i) require redrafting to eliminate their eugenic bias so they do not violate the principle of diversity.

The principle of diversity demands that new reproductive and genetic technology not be used in such a manner that it has a disproportionately negative impact as a consequence of disability. Paragraphs 4(h) and 4(i) would allow medical testing for reasons related to health of the zygote or embryo.

For example, these paragraphs would allow, in a case where there is a history of hemophilia - a condition that occurs in males - medical interventions to ensure that a female child is born, thus eliminating the possibility of a male with hemophilia being born. This is a blatant example of how Bill C-47 operates from a eugenics model. Disability is selected out as a characteristic that should be prevented in human reproduction.

Paragraphs 4(h) and 4(i) are dangerous because they provide official sanction to eugenic practices that are already in practice. The very fact that extensive use is being made of diagnostic testing during pregnancy to detect for the purpose of elimination a variety of disabling conditions is evidence that a eugenic bias is operative.

The presumption that a positive test will inevitably be followed by an abortion is particularly repugnant to people with disabilities. This eugenic presumption is being acted out, as indicated by the fact that 90% of positive amniocenteses result in the termination of wanted pregnancies. These figures send a warning signal. This response to disability conveys stigmatizing messages about disability to the public and reinforces the devaluation of people with disabilities.

We also want to note for the future that Canadians require guarantees that genetic information about individuals will not be shared by the medical establishment with other sectors of society, such as the insurance industry, employers, or the military. Only the tested individual should have access to the genetic information.

We are asking at this time that you not put sex selection in this legislation. We feel at this time that banning sex selection and not another is to imply that under Canadian law we will now sanction the selection on the basis of a wrong health condition. Those health conditions are rising daily.

We are concerned about where we're going: perfect baby, perfect race, perfect worker. We will never be rid of disability, and most have nothing to do with genetics. What does this say for our place in society?

The Disabled Women's Network of Canada expects this legislation to reflect the equality rights of people with disabilities, to continue with educating and debating, and to deal with the very confusing issues that new reproductive technologies have meant for this society. Many we may not choose to legislate. However, as David Dingwall stated at the beginning of this, how we manage these technologies will be no less than a statement of who we are and what we value.

We are not prepared, as women with disabilities, as people with disabilities, to be disposable.

The Chair: Thank you, Ms O'Brien.

Ms Morrison.

Ms Judy Morrison (National Action Committee on the Status of Women): My name is Judy Morrison and I'm here on behalf of the National Action Committee on the Status of Women. There are also member groups here who are presenting, so I just want to make it clear that it's not just me here.

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You should have already received some of our other documents, and I'm going to make reference to them. ``The Handmaid's Tale'' was a brief to the royal commission, our response to Proceed with Care. There's also been the two-volume book Misconceptions, and more recently the briefs we've submitted here. What I'd like to do today is just very briefly reiterate that position.

First of all, I'd like to thank you for inviting us to be here today. We applaud the fact that you're taking action on this. We'd like to see this move quickly. We also certainly applaud what's in the preamble in terms of the recognition of the fact that reproductive and genetic technologies are not limited to health and safety concerns. In the very way in which they are conceived of, developed, and marketed, they also stand to have very grave and broad social and ethical concerns.

Having said this, there seems to be a notable absence of an explicit recognition of people with disabilities and of equality rights for women. We have concerns with respect to using vague terms like ``human dignity'' and we'd prefer to see it more explicitly stated as ``human rights''. In this sense, we mean rights for people with disabilities and rights for women, in recognition of the implications the technologies have for those groups of people specifically. We'd want to see that in the preamble.

In terms of equality rights for women, this does not mean just equality of access or equality of treatment; it means equality of the results. By this we mean there should be no judicial intervention into pregnancy and birth and that we as an organization must have full support for women's reproductive autonomy.

I just wanted to reiterate which items on the list of prohibitions in the proposed legislation we're willing to support based on that. The things we would support being criminalized are germ-line genetic engineering, ectogenesis, the cloning of human embryos, creation of animal and human hybrids, retrieval of sperm or eggs from cadavers or fetuses, research involving the maturation of sperm or eggs outside the human body, research on human embryos later than 14 days, and the creation of embryos for research.

The remaining pieces that are in the legislation...

[Technical Difficulty - Editor]

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The Chair: We'll return to the meeting if I can have the attention of my colleagues. Our witnesses can pick up where they left off and we'll get right back on track. Thank you for your patience.

Ms Morrison: In the interests of time, I think some of our member groups will pick up on some of the earlier points I raised. I'm just going to start back on the list I was raising.

The National Action Committee on the Status of Women would support criminalization of germ-line genetic engineering, ectogenesis, cloning of human embryos and human cloning generally, creation of animal and human hybrids, retrieval of sperm or egg from cadavers or fetuses, research involving the maturation of sperm or eggs outside the body, research on human embryos later than 14 days, and creation of embryos strictly for research.

NAC would not support the other items that are slated for criminalization in the proposed legislation. We do have very strong concerns about those aspects of the technologies and we believe they should be regulated. The reason behind this is that we have serious concerns that those other items within the legislation would have a serious and negative impact on the rights of women and their reproductive autonomy as well as on rights of people with disabilities.

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I'll wrap up there.

The Chair: Thank you very much. Ms Miller.

Ms Fiona Miller (Feminist Alliance on New Reproductive and Genetic Technologies): My name is Fiona Miller. This is Elizabeth Abergel. We're with the Feminist Alliance on New Reproductive and Genetic Technologies.

First, some congratulations are in order, I think, for moving on this and for moving in some of the right directions. In particular, we applaud some basic things, like calling these things new reproductive and genetic technologies, which is a very important movement; the acknowledgement that there is more than health and safety at issue; the desire to move away from the commercial exchange of human reproductive materials and activities; and the acknowledgement that we do need to ban certain practices.

Let me outline briefly the alliance's position, which you've all seen. First, we continue to be concerned at the absence of a concurrent national regulatory framework. We believe that the use of the Criminal Code is often a very quick and dirty way to do very little.

We do need a system that is national, regulatory, and capable of monitoring what's going on. It should foster a public discussion of developing appropriate legislation to manage and restrict some of these activities. This has to be a citizen-based body, in our view.

Second, we see Bill C-47 as governing two quite distinct sets of practices. One is forms of gross human experimentation such as germ lines, genetic engineering, cloning, ectogenesis, etc. This is the list that Judy Morrison read out. On the other hand, there is a second set of practices, which we will term human reproductive practices. This is the commercial exchange of human reproductive material, sex selection, etc.

Given that we think there are these two distinct sets of practices, it makes sense to us that they should be governed separately. It's not that we think all of these practices are acceptable. In fact, we do think that restrictions are very much called for. However, the Criminal Code does not exist for moral regulation; it has to exist for meaningful legal control.

We are concerned that these reproductive practices. Since they are happening, since they are engaged in by individual women, and since we know, as feminists, that the criminal law tends to work very much against the most disadvantaged, we're critical about the use of criminal law to restrict those kinds of reproductive practices. We envision more marginalized women being trapped in circumstances when they're engaging in some of these practices, and we're concerned about that.

On the other hand, forms of gross human experimentation, we believe, should be banned and can safely be banned, because they're not happening and they're not engaged in by individual women. These are the kinds of things that are being decided upon in very elite decision-making processes, and we need to exert some democratic control.

I really don't want to speak too long here. What we really just want to speak to in the few remaining minutes are some of the specific sections of the bill.

With respect to the preamble and the objects of the act, we do see these as important in that they establish the principles for governing RGTs. Unfortunately, as they're stated, they're very vague and somewhat narrowly conceived.

Although it says it addresses health and safety concerns, we don't think that's what's at issue in the bill. Moreover, health and safety are a bit too vague here. Moreover, the concept of dignity is vague.

We need statements in the preamble and the objects of the act that indicate we're governing in the interests of the equality rights of women and people with disabilities. I think those are the kinds of statements that are clear; dignity is not clear.

Moreover, we need to govern in the interests of reproductive autonomy. Specifically, we want the explicit acknowledgement that judicial intervention in pregnancy and birth is not appropriate. We are concerned that this is one of the things the royal commission came up with as an issue. Its recommendation number 273 said that judicial intervention in pregnancy and birth is a problem that is emerging with the emergence of the new reproductive and genetic technologies, and we need to act to restrict that.

Finally, there is also a statement in the objects of the act that a child's best interests are in the principles for governance. We're concerned about this. This anticipates conflict with women. We think it's ambiguous.

We think a human rights approach is more appropriate than principles for governance. So we would like to see those kinds of amendments in the principles and the objects.

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With respect to some of the specific clauses, paragraph 4(1)(a) deals with cloning. I'm sure you have noticed already that this needs some amendment to include a ban on somatic cell cloning. When this was drafted, Dolly, didn't exist. So if this is going to be a meaningful prohibition on human cloning, it can't just be the cloning of embryos or zygotes; it has to actually deal with somatic cell cloning. That needs to be amended.

Paragraph 4(1)(h) and paragraph 4(1)(i) address sex selection and sex detection. They are to be banned save for health reasons.

We have some real concerns with these particular sections. This language is vague. The concept of health is vague. The exception, we would put to you, is both racist and able-ist. It is eugenics. It doesn't work.

Sunera Thobani has made an excellent argument for when we're talking about allowing sex selection for medical reasons. We've already heard the Society of Obstetricians and Gynaecologists of Canada say that family completion would be an acceptable medical reason, whereas sex selection by certain ethnic groups would be unacceptable. So we see that exception as racist.

Moreover, as DAWN pointed out, we're looking at a situation where a law is passed that explicitly indicates that selection for disability would be acceptable, whereas selection for sex is unacceptable.

So we think these two paragraphs as they stand need to be removed.

There are some further issues of course, but hopefully we'll get a chance to discuss them. So that's all we wanted to say as an opener. Thank you.

The Chair: Okay, thank you very much.

Doctor, do you want to go ahead? At least we can get to hear your statement before we go to the vote.

Dr. Gregory Wolbring (Member, Council of Canadians with Disabilities): Thank you, Madam Chair.

I would like to thank you for moving this bill. I congratulate you. I agree with a lot of my colleagues here, so I'm a little bit sad to be on the bottom of it, because I will have to reiterate a lot of things I agree with. So I won't do that.

I'm representing the Council of Canadians with Disabilities, an umbrella organization of at least 20 or 30 disability groups in provincial organizations. I also represent the Thalidomide Victims Association of Canada. I also represent myself. As I'm a biochemist and a researcher, I'm therefore very much interested in how our research gets used in a societal concept.

I will only focus now on the eugenics part of this bill, which are paragraph 4(1)(h) and paragraph 4(1)(i). For the disability movement, these are absolutely not acceptable.

Here are two points. So far, embryos, fetuses, and so on, are non-persons, at least in Canadian law. This allows us to have an abortion law working in the way it does. We also have the assumption that women have a free choice in abortion or reproductive choices.

Now paragraph 4(1)(h) and paragraph 4(1)(i) seems to suggest there is no free choice any more, because if it's sex selection, you can't do that. So we're making something like a society-sanctioned free choice.

The second point is very interesting. This is the legal concept that a non-legal entity, a non-person, the fetus or embryo, has a personal attribute like sex. So I don't know whether it would actually be upheld in a court of law, because you're mixing up certain legal premises here.

I would just want to give you some quotes to show that the eugenics fear of the disability community is indeed vivid, profound, and unfortunately, available in new reproductive and genetic technologies in setting boundaries for enhancing health. This is a government paper accompanying Bill C-47, appendix A. It tried to defend this section of sex selection prohibition for non-medical reasons. It says it's ``contrary to Canadian values of equality and respect for human life and dignity...''. It's a form of sex discrimination.

I would pose a question: does this mean that if there is a disability involved, then they don't deserve the same level of equality and respect for human life and dignity? Is this not some kind of disability discrimination? I don't think you can have it one way, saying these kinds of things, such as all of a sudden there's sex discrimination, and then totally negate that you're doing blatant disability discrimination.

By the way, the bill is also unclear on this point: what does this really mean? Does it mean that we can abort sex-linked disabilities but not other disabilities? Or does it mean that disability selection is okay anyway, and only because of the linking of sex to certain disabilities do you have this initial part in there? Paragraph 4(1)(h) and paragraph 4(1)(i) do not make this very clear.

I just want to quote a few people to you who are fairly prominent in the field to show you that indeed the eugenics fear is valid.

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Dr. Margaret Thompson, a member of the Order of Canada and former president of the Genetics Society of Canada, as a defending witness for the Alberta government in the Leilani Muir sterilization case - of course she was sitting on the Alberta Eugenics Board at that time - said:

Some causes of mental defectiveness are hereditary, and when the eugenics board was created there was a real danger of passing on those causes because contraceptive choices choices were limited. Today, people at risk of inheriting or passing on a defect to their children have the pill and other contraceptives available. They can seek genetic counselling before a child is born and can abort a child likely to be defective.

So it seems we're just changing the technology, but we have the same intent here.

It's also interesting that there was an Ontario court case, a wrongful birth case, that was won by the mother. How unbiased can a genetic counsellor be now when giving information, because she might be in the end be liable later on for wrongful birth suits? People have to explore more of this kind of option and problematic avenue.

Another one would be Helen Mary Warnock. She was the chair of the Warnock committee, the English equivalent of the Canadian Royal Commission on New Reproductive Technologies. She thinks that for Down's syndrome children, abortion is a wiser course.

They live much longer now and turn into very unhappy grown-ups. As soon as you say that, you are up against the handicapped lobby, who point out wonderful children; but they always talk about children. A friend of mine has an older Down's syndrome daughter and he says she is a pig. Simply horrible and violent... If a child is born very disabled or premature I would much rather it was killed, given a massive injection, than allowed to die of dehydration.

Mary Warnock is also a very respected geneticist in England. These are very respected people who are giving these kind of statements.

Another one would be Professor Peter Singer of Melbourne, Australia:

When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore if killing the haemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.

You might recognize that he talks of hemophilic infants. This book was written in 1979. Today, you can with prenatal testing find X-linked hereditary disorders, but you still maybe have the same kind of -

The Chair: Can you wrap up? Your time is up.

Dr. Wolbring: Okay, just one more thing. On March 10, Pamela Wallin of CBC's Newsworld said that thalidomide will very likely will make a rebirth on the market. The first applications are in front of the FDA. Pamela Wallin asked a physician, Dr. Jay Keystone, a researcher at the Tropical Disease Institute who deals with thalidomide for patients, what he would do if she comes to him for that. Among other things, he said he would go one step further; he would also ask you to sign at the moment - maybe not in the future - a consent that you understand what the dangers are of this drug, such that perhaps if you become pregnant, you would consider aborting the child.

So it seems that we're getting more and more into whether women really have a choice with this kind of background and knowledge and with what society expects from them. This technology is in the bill, but by explicitly saying sex selection should be forbidden, you're more or less saying that the other thing should be okay, because you only forbid one thing.

The Chair: I'll stop you there, because you're way over your time.

Madame, would you like to begin?

[Translation]

Ms Louise Vandelac (Individual Presentation): Good afternoon. My name is Louise Vandelac and I am a sociology professor at the UQAM. I was a member of the Royal Commission on New Reproductive Technologies for its first two years of existence, as well as a member of the National Council on Bioethics in Human Research.

I will make a very short presentation, one that will add to what has already been said.

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Just two weeks ago, I was listening to an open line radio show on the national CBC network where they were talking about cloning and I was surprised to hear a medical geneticist, and a pediatrician at that, say that he did not see anything wrong with cloning humans. When people dare to say such things on national radio, it is a worrisome sign that people are trivializing cloning, especially when you see that some advocates of reproduction technologies clearly object to a ban on producing human embryos for research purposes or a complete ban on genetic therapy.

But the more time goes by, and we are at least 15 years behind a number of other developed countries, the more we continue to support, approve and speed up not only certain developments, but in some cases practices that border on scientific criminality.

This is an urgent matter, because a number of these technologies have already started to have a profound impact on the conception of human beings. Whether, for instance, the mass production of embryos destined to be born or to be used merely for research purposes is being considered, or the deliberate production of embryos from the ovaries of corpses or other embryos, and this is one of the first times that the pursuit of knowledge is being used as a pretext to use potential offspring as lab rats.

There is an urgent need to criminalize certain practices, such as ectogenesis, cloning, etc. - I will not repeat them in the interest of time - , because it is not just the conception of human beings that is at stake, but the actual reproduction capacity of the human species itself. I was especially shocked to learn that so few of these matters had been discussed, both in the commission's report, and afterwards during all the discussions that have been held in recent years.

We know, and the United Nations recently invited 70 experts to the Smithsonian Institute in Washington to discuss this, that sperm counts have dropped considerably, that there is an obvious increase in breast cancer and endometriosis that is linked to xenoestrogens, or estrogen-likes, and what are known worldwide as endocrine imposters that are released into the environment and whose real effects we are only starting to learn about.

It is urgent for a committee like this one to deal with this matter because in the next 30 or 40 years reproductive technologies are literally going to explode. Immediate attention must be paid to this. Why will there be a surge in reproductive technologies? One of the reasons is that we now do ICSI, and they have done so in France and Belgium for four years now. It has also been used in the United States, Canada and elsewhere, but it is being used on a very widespread basis since in France, for instance, 35 to 40% of in vitro fertilization is done because of male fertility problems. In other words, because of the drop in sperm reproduction that has been noted and given the fact that there are already technologies whereby you only need one sperm, reproductive technologies may become a standard medical procedure. In vitro fertilization may become much more common over the next30 to 40 years, along with astronomical social, economic and human costs.

Canada must therefore act now and stop being so lax. This is one of the few developed countries to not yet have any legislation. Understandably, an election is in the offing and I know that there are two ways to look at this: you either say you do not have enough time and you put this off indefinitely, in which case I hope we will have the opportunity to meet again next fall, or you decide to go ahead with a bill that, at the very least, upholds some fundamental principles and, more importantly, bans certain practices, such as those mentioned earlier by my colleagues.

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I would like to close in saying - I see the gavel - that there is some doubt about all this. Wanting to criminalize these activities seems very paradoxal to me, because there doesn't seem to be any desire to change the Criminal Code, which is of provincial jurisdiction, but to use federal legislation instead. Now, what will those mechanisms be? Nothing is clear although I have asked a number of government researchers in order to get an idea of what was going on. I think it is a question of democracy. In other words, my concern is that there must not be a law for some scientists and another one for ordinary citizens, and we must make sure that all citizens can have equal access to these technologies.

Thank you.

[English]

The Chair: Thank you very much.

I'd like to thank everybody for their brief. We'll move to Madame Picard so we can get the questioning going right away.

[Translation]

Ms Pauline Picard (Drummond, B.Q.): Ladies, doctor, thank you for coming here today to share your views on Bill C-47. I would especially like to welcome Ms Vandelac; I am very pleased that she accepted our invitation to appear before the committee. I had met her in 1993 and I know that she has spent a lot of time and energy looking for information and finding documents on new reproductive technologies.

I have a very short question, since I know we are short of time and we still have a lot of people to hear. Ms Vandelac, what is your overall opinion of Bill C-47?

Ms Vandelac: I find there are a lot of inaccuracies and things that are unclear. I would agree with most of the comments made earlier. I therefore will not dwell on the matter. There are major shortcomings, especially with regard to the opportunity to get access to information on developments in human reproduction over the past 10 years, especially as they relate to environmental problems. In other words, you could hold public hearings on environmental problems, citizens can ask for them and get access to information, etc.

The committee being referred to right now is very vague, and that is why it is difficult to have a very firm position on this. However, I do think you should take a close look at the committee and make sure there are a number of additional tools available so that citizens can be directly involved in the discussions. My biggest fear is that everything will be done behind closed doors, among peers, and the public will have very little chance to follow any developments, and that we continue to lag behind other sectors.

In other words, if we do not make the very direct link with the agrifood sector, for instance, I think we will have to settle for the technologies we have now.

The purpose the committee will serve in the future must be clearly defined and there must also be a clear definition of the ties it will have with other departments.

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[English]

Mr. Keith Martin (Esquimalt - Juan de Fuca, Ref.): Thank you all for coming out to our committee today.

I'll try to be brief, because you've given us so much to address, Madame Vandelac. I have a couple of comments. First, I would suggest that the scientific community already monitors itself. It's already self-regulating. If somebody wants to engage in scientific activities that are out of the bounds of normality, they're going to do it anyway.

Secondly, you alluded to the fact that you felt that perhaps people are going to opt more for in-vitro fertilization. People will still tend to adhere to...[Technical Difficulty - Editor].

Ms Miller and Ms Morrison, there are a couple of questions that I'd like to ask you. Ms Miller, you mentioned that you were against the commercial exchange of reproductive material. I wondered if you were against compensation for individuals who are donating sperm or ova for...

[Technical Difficulty - Editor]

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The Chair: Okay. So much for the high tech. I could have fixed it myself. It's that one mike,Dr. Martin, so if you could continue on 17, hopefully that will work okay. We're back on track, as they say.

Mr. Keith Martin: Merci beaucoup.

Ms Miller and Ms Morrison, we'll try to get back on track. You mentioned the commercial exchange of reproductive materials. I wondered if you were against compensation for people wanting to donate their sperm or ova. If we don't allow some compensatory funds for these individuals, these sources will dry up for individuals who are infertile and choose to go through that route to have children.

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Lastly, you mentioned that you were against germ-line and genetic engineering. We must bear in mind that germ-line alterations will probably be an extremely important tool in trying to address some very important diseases, from cystic fibrosis to a number of malignancies, including breast cancer and adenocarcinoma of the bowel. We are already using genetic tools right now in dealing with altering the genetic make-up of pigs so that the heart valves and the organs of pigs can have a greater utilization in transplant. Given that this is what they're being used for, are you opposed to that kind of genetic intervention?

Ms Miller: Can I start right at the beginning? You say that the scientific community is already self-regulatory. I think you just put your finger on the pulse of the problem, because we are not interested in the self-regulation of the scientific community by itself. We are interested in exerting some democratic control.

The scientific community has long argued that these are issues that pertain solely to them, that they can make these kinds of research decisions, and that the public should not be involved because they are just scientific issues. We know they're not and we're dealing with the ramifications now. At some point we have to exert some democratic control.

This may not be the ideal way to go, but at this stage, particularly given the fact that it was all over the newspapers that when you met with the doctors their first argument was let us do these things... As recently as a couple of years ago they were promising that this was inconceivable. They were saying leave it to us, it's okay, we'll protect you, we won't go down that road. It's clear that they have no intention of keeping to that. We already know that according to the tri-council guidelines they claim this is unethical. Why is it that we're now hearing they're prepared to do it?

Self-regulation won't work, and I will continue from there if I may.

Mr. Keith Martin: May I interrupt for one second? If a researcher is going to take a course in genetic engineering that flies in the face of what the public would want, what is going to prevent them from doing that anyway?

Ms Miller: We'll ban it.

Mr. Keith Martin: What's going to prevent them from doing it?

Ms Miller: Obviously we need a regulatory framework, but it is not enough.

Mr. Keith Martin: Why?

Ms Miller: Because a regulatory framework will monitor.

Mr. Keith Martin: It's already monitored through a framework.

Ms Miller: No, you're talking about a self-regulatory system. We're not talking about a body that is self-regulatory. We are actually talking about citizens best -

Mr. Keith Martin: I think what we're trying to do is prevent things that are way out of line in terms of genetic engineering. My question to you is what is going to prevent a researcher who wants to go and do that from doing it anyway?

Ms Miller: Nothing will prevent a murderer from committing murder either, but there are still some limits that are imposed and then there are repercussions. I think when it's as clearly indicated as the Criminal Code sanction on some of these really heinous practices, then researchers are simply not going to do it or they are going to pay the price. Obviously in terms of monitoring, I'm absolutely with you. We do not know what's going on. That is one of the concerns.

Mr. Keith Martin: I didn't say that.

Ms Miller: Well, I think that's the extension of what you're saying. That is the implication.

Mr. Keith Martin: No. The regulations are there and they are self-regulated. They are not invisible and they are a matter of public knowledge. You can go and find out yourself if you want to.

Ms Miller: We don't know what's going on.

[Translation]

Ms Vandelac: I would just like to point out that if that had gone as well as you claim it had, none of us would be here today. There would not have been a royal commission that spent $30 million and we would not have this bill. If professional self-regulation worked, none of all that would exist.

You also have to remember that even for relatively simple techniques such as artificial insemination, one of the observations made by the royal commission was that virtually anything goes and that artificial insemination for animals was better protected in this country than artificial insemination of humans, which is really quite ironic.

I therefore think there is sufficient proof that self regulation does not work and that these practices have an impact on more than just the medical front. They have major social, political and economic implications for the whole of society and that is why it is important that there be more democratic mechanisms.

[English]

Mr. Keith Martin: With all due respect to both of you, I still don't know what practices scientists are engaging in today in Canada that you find so egregious.

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Ms Miller: Actually, my point was that one of the distinctions that can be drawn between the gross forms of human experimentation and the reproductive practices is that the former are not actually going on right now. Now is our opportunity. The feminist alliance does not believe you can turn around and ban commercial exchange of sperm. It's been going on for a long time. We'd like to move in the direction of decommercializing gamete transfer, but if you ban tomorrow -

Mr. Keith Martin: Are you suggesting it's commercial now?

Ms Miller: Yes.

Mr. Keith Martin: In what way?

Ms Miller: There are commercial clinics. This is a commercial process. You can purchase sperm.

Mr. Keith Martin: But these people receive moneys, right?

Ms Miller: Yes.

Mr. Keith Martin: And what you're referring to is commercialization?

Ms Miller: Right.

Mr. Keith Martin: You know the moneys they receive are compensation.

Ms Miller: That is what it's called.

Mr. Keith Martin: You know people don't get rich on selling their gametes.

Ms Miller: Absolutely. But an advertisement in the University of Toronto newspaper, The Varsity, for a young white woman to sell her ovum for $2,000, I'm sorry, for women who are trying to go through university today, that is an incentive.

Part of what we're trying to say today is those are more complex issues, and we're saying we don't think they can just be banned outright. But in terms of discussing how to actually regulate it, make it work, not criminalize women, then that's another section, and we need to move there.

Mr. Keith Martin: I just want to know from you where in this country gamete sales are taking place where they're commercial.

Ms Miller: I just identified it.

Mr. Keith Martin: Which clinic does that?

Ms Miller: Which was the clinic that was doing that? I'm not sure which clinic was doing that, but it's very easy to discover. I'm sorry, I don't know where your question is leading. We know it's happening. It's been discussed in the media extensively. It's been exposed.

Mr. Keith Martin: The issue is that it isn't happening. The people are getting money and the money they're receiving is compensation. They're not selling their gametes to get rich on.

Ms Miller: Whatever.

Mr. Keith Martin: That's important.

Ms Miller: No, because where -

Mr. Keith Martin: It's not ``whatever''. That's important.

Ms Miller: - you're going with that is to suggest that paying a woman $10,000 for surrogacy is not commercial. It's not whether or not they're getting rich on it -

Mr. Keith Martin: I'd like you to show me where that is.

Anyway, the issue here, and it is an important one, because it's part of this bill, is dealing with the banning of compensatory funds for the purchase of gametes. If you ban that, then you are preventing a lot of couples who are infertile from having access to these gametes. And if you ban this process, what you're going to have is that the people who are currently donating their sperm are not going to do it any more.

Ms Miller: We're not banning the process. Let's be clear about this. This bill in many ways does not speak to assisted reproduction. It speaks to some of the parameters around it. We're not saying yea or nay on assisted reproduction. And we don't want to pass those moral judgments. We're saying what gets done in its name... And when we're talking about exchange of human body parts, I think we need to move to a similar system, as we have already, with transplants, with blood. We need to obviously try to ensure access where it's reasonable, but not create commercial incentives. We have moved to a commercial system. What you are suggesting is that anything is acceptable in the name of this. We're saying there need to be some principles.

Mr. Keith Martin: What I'm saying is that there isn't commercial access right now. People are receiving moneys, yes, but the moneys they're receiving - and I challenge you -

Ms Miller: That's just definition.

Mr. Keith Martin: - to take a look at this.

Ms Miller: I've taken a look at this.

Mr. Keith Martin: If you do not allow the compensatory mechanism to take place, then the people who are donating their sperm and ova today are not going to donate any more.

Mrs. Carolyn Parrish (Mississauga West, Lib.): Madam Chairman, on a point of order, I think Dr. Martin is debating with the people rather than asking them questions.

The Chair: I think we should probably refrain from doing that.

Madam, would you like to say a few words?

[Translation]

Ms Vandelac: Just a point of information; there are complete systems where there is no monetary compensation, namely the French system where there are sperm banks and where no compensation is given to donors. However, I think a number of us agree that this bill must be passed as soon as possible, even if it is just to come to an agreement on the most reprehensible practices such as ectogenesis, cloning, etc. I know we could talk about compensation for hours, but I would like to avoid that since we are very short of time, but bear in mind that that does exist in other countries and the matter does not have to be resolved prior to settling more fundamental issues that are far more deserving of attention than that one, which can be dealt with later. In other words, perhaps we should think of passing this bill or some critical parts thereof prior to a possible election.

[English]

The Chair: Thank you.

Mrs. Parrish, do you have any questions you'd like to ask?

Ms Miller: On the third question of Dr. Martin, which was regarding germ-line genetic engineering, I don't know if you understood what we were saying. We were talking about germ-line genetic engineering, and I think you might be confusing that with somatic cell. And we're not talking about non-human at this point. I think it's clear that this bill is speaking about humans, so we're not commenting on pigs.

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In terms of germ-line genetic engineering, we think that this is a completely unacceptable practice. In fact as recently as a few years ago this was a unanimous statement in the medical science community. So it is very alarming to see us moving from the unthinkable, to the considerable, to the necessary. And again we're talking about what will we do in the name of what.

One of the pieces of the puzzle that's necessary here that I'm not sure you understand is the eugenic element. Why would we need to perfect the human germ line? Is that because we are in pursuit of human perfection? What does that imply? I don't think that's -

Mr. Keith Martin: Are you against -

The Chair: I'm sorry, Ms Miller. Ms Parrish has some questions, and we'd like to get those in too.

Mrs. Carolyn Parrish. Thank you very much.

I feel like I'm back in the real world. When I was listening to the scientists and doctors a couple of weeks ago I was very nervous. I thought we were all here to make this superhuman race, as you're discussing.

I find it a difficult job we have here, because we have a piece of legislation that came out of a committee you sat on for two years - and I appreciate everything you do - and we want to just refine it. The basics are there. What I'd like to ask you some questions on is that refining, because during the presentation by the doctors and the scientists they talked about a few things, and they repeatedly talked about them, so I want to get your opinion on it.

Before I do that I just want to suggest to Dr. Martin and to the group here that I don't believe in self-regulation. It's like taking athletes who are on steroids and telling them to regulate themselves. They will climb harder, take more steroids, push themselves harder. I think scientists are very much like that. They're very competitive. I think they want to discover the ultimate discovery and they want to be on the front pages of all newspapers. We're all very success-oriented. I don't think I believe in self-regulation. I would like to be on record with that. And I agree with you on that.

One of the things that has come up repeatedly is the difficulty of banning all payment for sperm donation, or whatever, and that's including silly things like parking and a lunch, a sandwich, or whatever.

I'm going to ask you my three questions and then you can decide who's going to answer them.

As a group you seem to be all fairly similar. Do you have any difficulty with our regulating that sort of thing, making an adjustment in this bill that says we will allow fair expenses up to a certain amount - and check it occasionally to make sure the amount is fair? I don't think you pay someone $2,000 to donate an egg. I think you have to justify the costs. We're talking about $40, $30, $20, something reasonable so people are not out of pocket.

The second concern I've heard from a lot of people is actually having the Criminal Code as the fist that makes sure this legislation stays in place. I heard one person talk about the fact that the Criminal Code might be a heavy hand on this. But the rest of you seem to agree that it's necessary because it's the only way you're going to get people to actually follow the rules.

I want to clarify also 4(h) and 4(i). What you're saying to me is that you want the last part of that removed: ``except for reasons related to the health of the zygote or embryo ''. Is that what you're saying? You want that removed so that what we are not doing is saying it's not okay to pick the sex of the child, but it is okay to make sure it's what in common terms is called a normal child with no problems, no difficulties that make them exceptional in society. Do you want that part removed, or do you want something done to it?

Ms Miller: I'll start with 4(h) and (i).

One of the difficulties here is that the feminist alliance doesn't think that for these reproductive practices the commercial exchange, the sex selection and commercial surrogacy, should be criminalized. We're saying that the Criminal Code is too blunt an instrument to use there because we see women engaging individually in these practices.

Now, we understand that this bill was drafted with the expectation that women would not directly be penalized. We understand there was that effort made, and we applaud it. However, the woman who engages in commercial surrogacy tends to be a vulnerable woman, tends to be a woman who's not going to... If it's being carried out underground and there is all that aura of criminal activity, then the more marginalized woman is not going to seek redress if she's punished.

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Mrs. Carolyn Parrish: Could I interrupt for a second? We tend to penalize in our society someone who sells drugs in large quantities. We don't tend to penalize the user of marijuana. Are you suggesting that the doctor or the medical practitioner who does all this should be hit with the Criminal Code, but the actual person who is vulnerable should not?

Ms Miller: I see that as already in the bill. If that's not already in the bill, I'm even more concerned. As I see the bill written, it's intended to capture the providers and the arrangers. That's good. However, we still think that women not directly criminalized are going to find themselves engaging in activities that are generally criminalized. So commercial surrogacy and legal activities... Doctors aren't supposed to be doing this, but they're doing it anyway. Then it becomes an underground activity. In the context of underground activities, we're talking about marginalized women already. They're going to be more marginalized.

We're also talking about reintroducing the Criminal Code around some reproductive practices. We're very concerned about that. We have a long experience with using the Criminal Code around women's reproduction. We're not certain that this is good. We also frankly don't think it's going to work. We're not certain there's going to be the kind of monitoring to make it work. The Criminal Code tends to work against the exceptional individual, so where it comes to something like sex selection what we can envisage is that the South Asian community would be targeted and the more general kinds of activities will not fall within that kind of criminal -

Mrs. Carolyn Parrish: I'd like to get you to focus on this.

Perhaps we can have Ms O'Brien answer my question on paragraph 4.(1)(h) and paragraph 4.(1)(i). Would you like to see the expression ``except for reasons related to the health of the zygote or embryo'' removed? Is that what you're asking us?

Ms O'Brien: Yes. Gregory, do you want to comment?

Dr. Wolbring: Yes. It's not only related to the health part. The whole of paragraph 4.(1)(h) and paragraph 4.(1)(i) have to be removed.

Mrs. Carolyn Parrish: The whole thing?

Dr. Wolbring: Yes, the whole thing. If you say sex selection is forbidden, it implies that other things are allowed. It's by definition. You only forbid things that are otherwise in other terms allowed. So you would say disability selection is not forbidden, so this should be allowed. In order to totally clear it up you have to take out paragraph 4.(1)(h) and paragraph 4.(1)(i) totally.

Mrs. Carolyn Parrish: If you take it out entirely, then by omission what you're saying to the medical profession is you can do it. You don't address it specifically.

Dr. Wolbring: I don't see that you can give a special protection status to one label of a fetus and another label doesn't get the same protection status. I gave you a few quotes before.

Mr. Carolyn Parrish: No, I understood that, and I actually sympathize with your point. I'm just wondering how we can incorporate what you want without losing the banning process of having them engineer that zygote at all.

Dr. Wolbring: No, this is not about engineering. This is about, as before, just using any diagnostic procedure for the purpose of ascertaining a sex. If you give sex selection a special status... If you can ascertain certain treatments for certain disabilities like hemophilia and you can play around with that, then okay, if you allow that, you also have to allow it for sex selection. Also, there are many more numbers related to the manipulation of disability, and this is much more a focus of society than sex selection.

Mrs. Carolyn Parrish: It is now, but as the population changes you may see that change as well.

My last question to all of you has to do with whether or not you find it offensive at any point to set some sort of limit so that you could reasonably pay people for their expenses. I don't mean $2,000 through the newspaper at U of T. I can imagine what that would do to a desperate student.

Ms Miller: We're not in a position to say what is... As the bill is written, it already provides some exception: ``except any such expenses incurred by their donor''. The problem here is that we're saying we very much want to move towards decommercializing this, but we don't think the Criminal Code is the instrument.

I'd like to respond with a bit of a question, because our understanding is that Health Canada has said they're going to phase this in. How is this going to work? If there is a phase-in process, is there any way in which these other problematic things can also be introduced without penalty with some sort of phase-in so that we can see a regulatory framework introduced that can manage this stuff? Unless you're monitoring, unless you're doing this on a systemic level, then the Criminal Code just goes after the egregious examples and that doesn't deal with the issues.

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Mrs. Carolyn Parrish: Luckily, I don't have to answer the questions. You do.

Ms Miller: You don't have to answer the questions.

Mrs. Carolyn Parrish: I am very confident the health department has considered this and there will be regulations following to put the whole thing into a framework.

Ms Miller: Could I just answer the one question on your concern about removing sex selection? I agree with Gregory: we would want both clauses in their entirety removed. I don't think there's a way to finagle with clauses in there. By amending the preamble and the objects to indicate we're looking at the equality rights of women, and we're talking about post-Andrews equality rights, the equality rights of effect and the equality rights of people with disabilities, then that's giving a good indication of where we're going as a set of principles. At this stage, with this kind of a blunt instrument, that may be the best we can get to indicate that sex selection isn't a pretty great idea, and neither is major eugenic selection, which is what we're indicating here.

Mrs. Carolyn Parrish: Madame Vandelac, you nodded your head when I said the difficulty we're going to have is banning the selection if we don't put that in. Do you have a suggestion?

Ms Vandelac: I think the wording in French, at least when we are saying ``à seule fin de'', could be changed to say ``utiliser un test de diagnostic'' to determine the sex of the zygote. If we take off ``à seule fin'' it probably changes the sense. I think it goes more or less in the same perspective - or at the preamble, as they've said, or change the wording of that. Much of the wording in this bill has to be changed a little bit.

Mrs. Carolyn Parrish: Played with.

Ms Vandelac: Yes.

[Translation]

Take the example of "embryo implant", which is a totally inappropriate term. It should be embryo transfer. The problem is the implantation, but you transfer an embryo and that can make a major difference when interpreting the act. So there are terms such as those that require particular attention.

[English]

The Chair: Dr. Wolbring, you wanted to have a short word on this.

Dr. Wolbring: I was wondering about another thing that we haven't addressed so far. This bill doesn't address anything related to health insurance, life insurance, or workers' protection. I just want the committee to keep this in mind. If we pass this, do we have other frameworks in the works at the moment in Parliament that would address these kinds of problems, which are, of course, pertinent also to the use of eugenic technology?

The Chair: Thank you.

On behalf of my colleagues, I would like to say again thank you very much. I apologize for the high tech that doesn't seem to work very well here today. Perhaps we can break for a few minutes so that we can change panels and then as soon as we get everybody cleared out and reseated we will start up again.

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The Chair: I'm sorry about this. I would like to welcome everybody here and apologize for the delay. We're not doing too badly. We're about 45 minutes behind. We've had some technical difficulties. The high-tech world is with us now, and I hope it's not going to interrupt us any more this evening.

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We will start immediately. I normally like to start from my left, but if you wish to start from my right, it's entirely up to you. We're going to try to keep you as close to the five minutes as possible. I'll hold this gavel up just before your five minutes are up, just to keep to the time, because we're going to have a late night and we don't want to keep everybody here too long, if possible. When everybody is finished we will have our questions.

Please go ahead.

Ms Irene Ryll (Individual Presentation): My name is Irene Ryll, and this is my husband, Peter Ryll. We would like to start by saying that our appearance here today to discuss this very personal matter has been a most difficult decision for us as a family. However, we have many concerns about Bill C-47 and the implications this bill will hold for infertile Canadians, and feel we cannot be silent at the expense of our privacy.

We hope our children will one day understand why we have chosen to discuss our experiences with the government and other strangers. We ask for your sensitivity and understanding at this time.

We agree that there are positive aspects to Bill C-47 and the proposed regulatory regime outlined by this government. We agree with the prohibition of unacceptable technologies such as the creation of animal-human hybrids and sex selection for non-medical purposes, and appreciate the fact that the government is concerned for the health and safety of society as a whole.

However, we feel legislation that groups reproductive and genetic technologies does a great disservice to the infertile population and contributes to the general misunderstanding society has about infertility. These are very separate issues with their own ethical and moral implications, and we strongly feel that tying these issues into one piece of legislation results in a negative perception of infertility and reproductive technology. This is further illustrated by the government's refusal to acknowledge infertility as a medical condition.

Much has been made in the media about the urgent need for this bill because of the recent story of Dolly, the cloned sheep. Associating assisted reproductive technologies with genetic technologies and a science fiction-type hysteria resulting from it is insulting and disrespectful to the families who have had to make personal choices in building their families.

We were able to build our family through the present system of donor insemination. We were grateful that it existed for us, and thankful to the donor who gave us this gift.

In the present system, the donor was anonymous, and was compensated for his participation in the program. Throughout this process my husband and I never once felt that we were involved with an unethical and unacceptable practice, and were extremely shocked that the government had labelled it such.

The system can surely benefit from positive changes. However, there is absolutely no need to label the existing system as unethical. At no time do we want our children to feel that there was anything immoral or unethical about the way they came into the world.

We feel the general language of the discussion paper and the implications of Bill C-47 regarding prohibiting compensation to donors suggest this. Attaching this stigma to children conceived through the donor insemination process is not in keeping with the legislation's stated intention to protect the children. We feel that donors should be allowed token compensation to a maximum amount for their expenses and inconvenience. Donors must undergo extensive testing and commitment for a specified time period to the program, and we feel reimbursement for this is not unreasonable.

The government is proposing a phased-in altruistic system, but offers no explanation as to how it will work. We are concerned with the possibility that the number of donors will be reduced if compensation is prohibited, resulting in reduced access for infertile Canadians. Prior to creating a law to criminalize compensation, a pilot project should be implemented to determine if donor supplies will be reduced.

The legislation's stated intention of attracting more acceptable donors leaves one with the impression that past and present donors are somehow undesirable. In our opinion this is extremely suggestive and offensive to all participants in this program.

We agree with setting up registries for donor offspring and strongly agree that families should definitely receive medical and non-identifying information. We are thankful the government recognizes the need for this information, because it's very, very important.

The formation of an open system is acceptable to us, along with identifying information as per mutual consent, but will require much consultation and education prior to this.

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We also agree that standards as to the number of children born from a single donor should be set so people do not think there are 7,000 children running around from such an individual.

Development of standards of practice for delivery of a safe system is indeed a priority. Access to counselling for individuals and donors within the donor gamete system is definitely desirable, and it also helps with what we feel is the couple's personal decision of whether or not to be open with this with their family.

Bill C-47 cannot be passed as it currently stands. It has too many unanswered questions and to pass it quickly without further evaluation and changes will not be in the best interests of Canadians. We ask that the government separate the reproductive issues and the genetic issues.

We are very grateful and feel very lucky that we were able to have an opportunity to have a family and we treasure this gift every day. Thank you.

The Chair: Thank you very much for your brief.

I will explain to anybody who maybe wasn't here. We look like a very small group; in fact, we're a subcommittee of the health committee. At this moment, some members of our committee have gone to vote over at the House of Commons. Although we look small, we're probably the three best ones you have in here.

You may continue.

The Reverend David Robertson (Individual Presentation): I'm glad we're among the best.

Susan and I would like to thank you for the invitation to speak to you this evening. It is our privilege to be here, and as Irene said, it is also very difficult for us to be here, as we are sharing with you what for most people is very private.

A year and a half ago we discovered we were dealing with male factor infertility. In our case, the infertility is likely genetically linked. The cells that produce sperm work normally, but the cells that nourish the sperm to maturation don't work. This is a medical condition. There's no way to prevent or treat this type of infertility. Our fertility specialist believes I was born with it.

The Reverend Susan Lukey (Individual Presentation): While waiting six months for an appointment at the Foothills Regional Fertility Clinic in Calgary, we began considering adoption. I have seven cousins who are adopted and so felt this was a potential option. We were highly discouraged when we discovered that with public adoption we could wait five to ten years to adopt a newborn and up to five years to adopt a special needs or older child.

The discouragement continued when we looked at private adoption. The wait was shorter, about two to three years, but the cost was prohibitive at about $6,000 for private adoption in Alberta. Also, adoption and fostering are becoming less viable alternatives as our provincial government moves toward keeping children with their birth families. We decided to wait to see what the doctor at the clinic would say.

Rev. Robertson: In our discussion with the doctor at the fertility clinic we were offered two possibilities for procedures that might help us achieve pregnancy.

Intercytoplasmic sperm injection offered a very slight possibility of achieving pregnancy, and there are several reasons that we decided against this procedure. There was the possibility that the genetically caused male infertility would be passed on the children. The procedure would be physically invasive for Susan and she would have to take an extensive regiment of drugs. We could not afford the cost of approximately $8,000 and there was the potential that donor sperm would be used anyway, since few of my sperm would be viable for this procedure.

We decided to opt for donor insemination. Both our family physician and the fertility specialist recommended this as the better option for our situation.

Rev. Lukey: The child I carry right now was conceived because of the gift of sperm received from a donor. Every day I wake up and look in the mirror and delight in the fact that David and I can participate in this amazing event.

David is the father of this child because the word ``father'' denotes a relationship. He is the one who participated in the decision to have a child. He is the one who will develop the father relationship with this child through joys and sorrows, cuts and bruises, playtime and bedtime. The child will also know that a donor helped us and that we are grateful to the donor.

Rev. Robertson: Bill C-47 will affect us directly and may determine whether we will be able to attempt another pregnancy.

First, we believe Bill C-47 should more clearly distinguish procedures for the purposes of genetic experimentation, such as those listed in paragraphs 4(1)(a) to 4(1)(e), and those procedures which enable people dealing with infertility to achieve pregnancy. Second, we are concerned by the banning of compensation to surrogate mothers and donors of egg and sperm as outlined in subsections 5(1) to 5(3) and subsections 6(1) to 6(2).

Rev. Lukey: Currently it is not easy for donor sperm programs to find an adequate number of donors. We were asked to give our preferences on four and only four characteristics of the donor. In the end, the clinic was only able to match two of those preferences. With the number of donors being quite low even with compensation currently offered, our fear is that the number will drop even lower without compensation. As indicated on an information sheet, which we'd like to share with you, from our own clinic, the time and procedures expected from the donor are quite extensive and many potential donors are lost when they discover what the program involves. Compensation to a donor for time and expenses seems reasonable.

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Rev. Robertson: Having read the bill's discussion paper, we are dismayed by the tone and direction of the document.

The words ``prevention of infertility'' occur many times, accompanied by what feels to be an assumption that if we Canadians were more sexually responsible, infertility would not be a big issue. How do you prevent mumps, endometriosis, genetic infertility, and cancer of the ovary or testicle? ``Protecting the vulnerable'' is another troublesome motif.

We are not vulnerable, we are not misinformed. We are well educated and strong leaders in our community. Rather than what feels like a negative, harsh, and patronizing response regarding NRGTs, support is needed from the government that will provide funding for fertility treatment, access to non-identifying information about donors, reasonable compensation to donors and surrogate mothers, and the creation of a national regulatory agency.

Rev. Lukey: We are the human face of infertility. Like most people, we expected it would be easy to conceive a child. It was devastating to be told that we could not do so. Our desire to have a child is not because of social pressure, as the discussion paper suggests on page 19.

We have thought long and hard about why we want to welcome children into our home. We have poured energy and love into being with our nephews and niece, and in developing relationships with the children of friends and the children at church. The more our relationships develop with other children, the more we desire to experience that relationship on a day-to-day basis in our own home. Our story has a happy ending. Our child is due in just seven weeks.

Thank you.

Rev. Robertson: Thank you.

The Chair: Thank you.

Ms Katherine Kimbell (Co-Chair, Adoption Reform Coalition of Ontario): I am the co-chair of the Adoption Reform Coalition of Ontario, and I shall address the matter of the right to access identifying information for children born of reproductive technology.

The position of the group I represent is supported by virtually all other adoption groups in Canada.

We believe all human beings should have the unqualified right to know the facts of their own birth, their ancestry, and genetic inheritance, which right has for many years been denied to persons affected by adoption secrecy laws. The truth about oneself is of fundamental importance, but it ought not to be withheld from any human being, under any circumstances. We believe this principle should apply in adoption and also in reproductive technologies, and that never, never should the law be based on a lie.

It's very curious that these days, on the front page of our Ottawa Citizen we are reading about the reunion story of Joni Mitchell and her daughter, and my daughter is meeting her birth mother today. I'm very happy about both those reunions.

Research in many countries shows that anonymity and secrecy of information in adoption have harmed virtually all persons involved. Were Bill C-47, in its next phase, to repeat control and secrecy of personal information, it would be a tragic injustice to the children involved, given the overwhelming evidence against such a position.

I wish to identify a few opposing points of view and speak to them.

In the paper ``Setting Boundaries'', there is a claim that one should balance the needs of the child and the parent by ``according greater importance to family relationships than to genetic information.'' That's on page 36. We believe this position is actually imbalanced, in favour of the parents and against the child's true welfare.

This evaluation of environment as more important than genetics is without factual basis. Adopted persons reunited with genetic kin give ample proof that genetics is equally important, more or less. If genetics are unimportant, why is so much effort then expended to hide it? A law that will tolerate any genetic secrecy is an Orwellian double-think with cruel effects on the child.

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Another point is that prime consideration in this law seems to be given to the expectations of the adults: the donor, for secrecy; the physician, to keep his donor supply; and the parents, maybe to deceive the child. Our position is that having professed priority for the well-being of the children, as the report does state, we feel the child's need for basic information ought to be given precedence over any competing adult interests. To maintain secrecy and anonymity is against the child's well-being.

The report recommends following the current adoption practice of record-keeping, while offering access to non-identifying information only, with access to identifying information under very rigid and limited conditions. Our answer is such a position has not worked well in adoption. It is being vigorously challenged by adoption communities right across Canada and in many other countries, and it has been effectively challenged and changed in British Columbia. In the last four months, 3,000 adoptees have requested their identifying information - that is just in the four months since the law changed in British Columbia.

If limitations are to be imposed on access to personal information for children of reproductive technologies, it would be seen for what it really is: manipulative control and discriminatory treatment of other human beings. We recommend a specific series of additions and changes to the statement of live birth, which identifies all contributors to the child's genetics and parentage. We also recommend licensing of practitioners so that openness policies are maintained.

There seems to be an unconscious collusion between the physician in control of the process and the client to accept a law that places their adult interests over that of the vulnerable child. This is tragically similar to what has happened in adoption, in which social workers and others play God with their clients' lives. This error has now been seen to be fundamentally unwise, but it has taken a long time to recognize that is so. Please, let's not make the same mistake again.

Thank you.

Mr. Jim Kelly (Legislative Chair, Parent Finders of Canada): I'm the legislative chair for Parent Finders of Canada.

I handed out a booklet earlier, which is entitled The Right of the Child to Preserve His or Her Identity. I hope the members of the committee have a copy of it, because I'm going to be referring to the documents in there in my presentation.

I'm the legislative chair for Parent Finders of Canada, and I'm also an adopted person. So when I speak to you here tonight, I'm speaking as a person who has lived the life of genealogical bewilderment, which has been imposed by the anonymity policies of the Adoption Act. I'm familiar with the impact the proposed anonymity policy of Bill C-47 is going to have on the children created through artificial reproduction.

Parent Finders has been in existence since 1974. One of the primary purposes is to facilitate reunions between adult adoptees and their biological relatives. Currently, we have a database of over 45,000 Canadians who are trying to meet their biological relatives. Since its inception we have facilitated over 11,000 reunions.

I'll speak to you tonight in the reference of an adopted person, but on the issue of access to records. It is one and the same issue for the children who are going to be created with artificial reproduction.

In the first page of the booklet I handed you, there is a copy of a newspaper article that appeared in The Vancouver Sun on Saturday, June 28, 1996. It's entitled ``Teenagers conceived with anonymous sperm wonder about who the biological fathers may be''. So the children who have been created through this process are already wondering, just as we, as adopted people, have been wondering this for over the last twenty years.

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The next document, under tab A of the handout I gave you, is the new reproductive and genetics technology pamphlet. I've highlighted a couple of the paragraphs referring to the policy of anonymity.

The first clause is from the royal commission, which recommended that non-identifying information on gamete donors be made available to the parents or child at any time with the opportunity to obtain identifying information in extraordinary circumstances of need under strictly controlled conditions. That's on page 36.

On page 38 of the document is the recommendation of the health policy division. The health policy division says that it is not intended at this time to move to a non-anonymous system in which a donor's identity is made available to offspring upon their request.

It's interesting to note that the royal commission's final report was completed in November 1993 and the health policies division's was completed in June 1996. Both these recommendations are in direct contravention of the UN Convention on the Rights of the Child, which this nation ratified in December of 1991.

So how did we arrive at a policy by both of these bodies that is in direct conflict with international law with which this nation has agreed? The answer is simple. They started from a false premise. They started from a premise of the balancing of rights.

If you read article 3 of the UN Convention, it states:

In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.

If the child's interests are a primary consideration, it's a logical inconsistency to talk about the balancing of rights, and it's incumbent upon this committee, when viewing all the amendments that are being put forward to you, to view them as how the amendment is in the best interests of the child. Only after considering that may you move on to consider the other positions.

It's also interesting to note that both of these bodies, while considering that this information should not be made available to the person to whom it applies... I have with me a copy of the provincial medical genetics program from the University of British Columbia's Department of Medical Genetics. When a person goes there now to apply for artificial reproduction help, this is the questionnaire they're given. It says that the question refers to your partner and both of your families - brothers, sisters, mother, father, nieces, nephews, aunts, uncles, cousins and grandparents. Then it goes on to list the number of medical problems these people may have, including hemophilia, muscular dystrophy, and cystic fibrosis. It's a long list.

However, if a child created by artificial reproduction were to go to this agency in twenty years' time, because they had a similar problem, and if you were to continue this policy of non-identifying information, they could not fill this form out. It wouldn't be possible for them.

Under the next tab, tab D on the pamphlet I handed you, it has the relevant articles of the UN Convention on the Rights of the Child to which I refer. The first is article 2. This says that all of these policies must be implemented without discrimination of any kind. This includes irrespective of the child or his parents' or legal guardians' race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, and birth or other status.

Further, article 7 says:

This child shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by his or her parents.

Article 8 states:

States parties undertake to respect the right of the child to preserve his or her identity, including nationality, name and family relations as recognized by law without unlawful interference.

Clearly, the UN Convention on the Rights of the Child mandates access to identifying information.

In fact, also under the UN Convention on the Rights of the Child, article 44 requires that Canada submit to the United Nations within two years after entry into force a report stating how they've done about enforcing and implementing these policies, and to do so thereafter every five years.

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This is a copy of the first report, and what I have for you under tab C is the copy of the response from the UN Committee on the Rights of the Child in response to that report. I'd like to draw your attention to items 9.20 and 9.23 of that.

The Chair: We're trying to keep it at five minutes, and we've let you go over already. Could you somehow try to wind it down, please?

Mr. Kelly: Okay.

If you look at the material I've handed you, the frame of reference is that of adoption. On this issue of adoption and the children created from artificial reproduction, the question of access identity is the same. That is guaranteed by both article 2 of the UN Convention on the Rights of the Child, which was passed in December 1991, and the non-discrimination clause of section 15 of the charter.

If you look at the back document of that book, you'll also see that the human rights of the child was in the policy-making decision and put forward in the last throne speech. So under international law and national law there is an obligation that the Liberal Party put forward in the last throne speech.

The Chair: Ms Jackson.

Ms Nancy Jackson (Member, Infertility Awareness Association of Canada Inc.): Hello. My name is Nancy Jackson. I'm here representing the Infertility Awareness Association of Canada, IAAC. I'm speaking to you today as one of half a million Canadians who experience infertility. I'm also speaking to you as a parent of children conceived using reproductive technology.

If I hadn't had access to the appropriate technology I required, my children would not exist. That's the essence of many of the issues before you in this bill. For many Canadians this bill will make the difference between whether they will be parents or not.

Before I start I want to take a moment to introduce Dr. Barwin. Dr. Barwin has served as an IAAC director since 1989. He is a very active member of our organization and he's come here with me today to represent IAAC. He's also served as its chair. I should also mention that he's a recent recipient of the Order of Canada.

The Infertility Awareness Association of Canada is a national charitable organization working for choice and access to treatment for those with infertility concerns through awareness, education, and support. IAAC was established in 1989, and with the support of community volunteers chapters were established in Montreal, Toronto, Ottawa, Winnipeg, Moncton, and Halifax.

IAAC hoped that the regulation of assisted reproductive technologies, ARTs, would increase the availability and accuracy of information, enhance safety, increase awareness of infertility as a health issue, maintain choices, and include infertility under the Canada Health Act. Bill C-47 does none of these things.

It was IAAC's hope that ARTs would be regulated by a regulatory body composed of professionals and consumers. While the discussion paper indicates that a regulatory body is to come, by introducing the bill first the government is proceeding in a back-to-forward manner. This heavy-handed, prohibitive legislation is a premature reaction where effective regulation would have sufficed. Indeed, a regulatory body would allow for the development of expertise to inform the legislative process.

Bill C-47 as it stands will adversely affect technologies that are helping Canadians build families. While IAAC agrees that clause 6, which prohibits the sale, purchase, barter, or exchange of ova, sperm, zygotes, and embryos or fetuses is reasonable, the bill goes further and disallows the reimbursement of donors for expenses incurred. Experience in other countries has demonstrated that the elimination of reimbursement will likely all but eliminate the supply.

While the concept of altruistic donation is laudable, in practice it's not reasonable. Certainly many parallels are drawn with the blood system, but it's important to understand that the donation of an embryo, sperm, ova, or even a fetus are not equivalent to a blood donation. The donation of blood is a relatively simple procedure. Blood clinics will even send a life bus to pick you up or bring the clinic to your workplace. Gamete donation is much more complex. Even sperm donors must make repeat visits to the clinic months apart before their sperm will be approved for usage.

There are very real costs for the donors associated with these technologies. Bill C-47, by prohibiting reimbursement for donor expenses, could effectively shut down any ovum donation program and could seriously jeopardize sperm donation programs.

Under Bill C-47, embryo donation expenses of any sort cannot be paid, and furthermore Bill C-47 may also prohibit the importation of gametes from the U.S. or abroad. If the bill is to pass we can expect to see a dramatic decrease in the availability of all donated gametes and embryos in Canada.

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The government has seized upon the ``commercialization'' aspects of gamete donation in an effort to shut down technologies perceived as problematic by some. By refusing to compensate donors for their expenses, the bill seeks to address the problem of commercialization. But in effect the bill does not eliminate the need for infertile people to pay the costs of gamete donation and those infertility treatments not covered by medicare. Infertile people will still be paying for the chance to have a child. All that changes is that donors cannot be compensated for their expenses. Unfortunately this change alone may effectively reduce choice for many Canadians.

The penalties of the bill are inappropriate. There is no evidence that penalties of this magnitude are required to ensure compliance. Donors and infertile couples should be exempt from the penalties, as surrogates are. Donors are not criminals. Infertile couples should not be in fear of serious criminal penalties when they seek to use donated gametes and embryos to build their families.

If supplies of safe donated sperm and ova become scarce, or if people fear exposing themselves to penalties under this bill, financially advantaged people may go to the United States or abroad for treatment. Other Canadians may turn to unsafe practices such as artifically inseminating themselves or recruiting their own donors.

Many people do not realize the safeguards medical professionals provide to the health and safety of people using ARTs. Testing donors for sexually transmitted diseases and genetic diseases, and matching donors and recipients according to traits such as Rh compatibiliity are critical to the health of the women and the children.

If Bill C-47 proceeds and includes assisted reproductive technology, clause 6 must change.

We suggest the following changes:

(1) payment of donors' expenses be explicitly allowed;

(2) reimbursement of expenses incurred in testing, not just the collection, storage, and distribution of ova and sperm, must be allowed;

(3) clarification that importation of gametes from the U.S. and abroad, where donors are paid, be allowed. Please note that for minority groups this is often their only source of gametes.

We also note that currently embryos are omitted from subclause 6(2) of the bill. This is possibly in the mistaken belief that they are covered indirectly by allowing expenses for collection, storage and transportation of sperm and egg. But by leaving embryos out of subclause 6(2), a couple, for instance, with excess embryos after an IVF cycle who wanted to donate them would be required to pay for the expenses of storing the embryos until they were matched with a recipient couple. They would also then be responsible for the cost of transporting those embryos to the recipient couple. This would likely again serve to discourage altruistic donation, and would effectively dry up this option.

Let me wrap up by saying IAAC supports and indeed has advocated for the development of health surveillance programs as outlined in the discussion paper.

IAAC is also pleased with the recognition that donor children and their families require medical and non-identifying information about donors, as discussed in the donor-offspring registry proposal. We hope there will be further consultation to make sure these are implemented in a respectful and effective way.

IAAC would like to complete our presentation by stressing to the subcommittee that infertile people are not desperate people willing to do anything to have a child, as we are often portrayed to be. We simply want safe and effective choices to build our families. We are concerned that Bill C-47 as it currently stands will reduce availability and access for infertile people.

While virtually eliminating these options through this sort of prohibitive legislation may address some concerns, it does so at the cost of reducing options for others. That may be the most expedient way to deal with the issues, but it's not the most tolerant one. Infertile people don't have the option of building their families as others do. We were looking for a bill that would accept, support and facilitate alternative methods of building a family, which we feel are very valid and more importantly very respectful -

The Chair: Ms Jackson, I have to cut you off. I'm sorry about that, but I think we got just about everything.

Ms Allen, do you want to begin?

Ms Diane Allen (Executive Director, Infertility Network): Okay. My name is Diane Allen. I'm the executive director and a co-founder of the Infertility Network.

We are a registered charity based in Toronto and serving people across Canada. Our goal is to provide information and support to infertile people so that they can make informed choices about their family-building options. Everyone on our board of directors and on our various committees has had a personal experience with infertility. We feel that in order for a consumer organization to have credibility, it must be independent and it must be seen to be independent.

My purpose in coming here today is to share with you what we have learned through our extensive experience at the grassroots level. Since 1992, we have answered more than 7,000 requests for information. We have held 46 educational seminars, which we tape so that people can access this information regardless of where they live.

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The next seminar we're doing seems especially timely and relevant today. It's a symposium on the changing face of sperm and egg donation in Canada.

We've also established a buddy system; run 80 support groups; published a newsletter; developed an extensive database of services related to infertility and adoption; and spoken to high school classes on the causes, treatment, and prevention of infertility. We don't claim to speak on behalf of infertile people. It would be presumptuous for us or for any organization to do that, especially given the divisions that exist.

We've found that infertile people tend to see Bill C-47 very differently, depending on where they are in their journey. There appears to be a split between those who are hoping to have a child or another child through treatment and those who have had a child or children and have now stopped treatment.

Those who want to have a child tend to see the proposed legislation as limiting their access to family-building options and quite possibly dashing forever their hopes of having a child born to them. On the other hand, those who have already had a child or children and have now stopped treatment and are more or less resolved about the size of their family tend to be concerned more about the needs and the rights of the children they have and of the children who could be born through the use of new reproductive technologies.

The current system, with its emphasis on secrecy and anonymity in the use of donor gametes and its payment to donor and surrogates, totally overlooks the needs and the rights of the children who are born. Bill C-47 seeks to correct this.

These technologies are not about getting a baby. As in adoption or with the birth of a child, the baby is only the beginning. Perhaps it is because my son is 12 now and more than halfway to adulthood that I see it this way. Before I conceived him, I longed to be a mother and I grieved over my miscarriages. But it was all a rather abstract idea, and having a baby was as far as I could imagine.

For a long time I've struggled with what for me was the basic underlying question as to whether the use of NRTs is strictly a personal matter or whether, because they involve children and the creation of life, society has a stake and therefore a say. I've come to the conclusion that we all have a part in this.

It's also evident from the work we do, from the telephone support, from the seminars, and from the hundreds and hundreds of people we talk to that in fact infertile people are quite vulnerable. Their sorrow and their desperation can be quite overwhelming. They need a system of regulation and control that will protect the interests, the health, and the dignity of them and their children.

They are not well served by the current system, which persists in treating NRTs as simply a medical matter, without recognizing the extensive psycho-social issues involved. Sadly, many doctors continue to urge their patients to go ahead with sperm or egg donation, or even surrogacy, without counselling to explore what it means to create a family this way and how to deal with the issues that will inevitably arise.

I want to conclude by telling you about the survey we did of our database of patients on the proposed legislation. In fact we found considerable support for the prohibitions, for the criminal sanctions, and for the regulatory framework. Most respondents agreed that choosing the sex of your child should be allowed only for medical reasons and that sperm, egg, and embryo donors should be compensated only a minimum amount to cover expenses. There should not be a financial incentive, as there currently is, for donating the building blocks of life.

Most respondents agreed that creating a family through the use of donated sperm, egg, or embryo raises many issues and that counselling should be required before treatment begins. They agreed that parents should tell their child about their donor origins but should not feel obligated to tell family or friends. They wanted to see information registries established to track and limit the number of offspring per donor, to link donors and offspring when health problems arise, and to allow access to non-identifying information.

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About one-half of the respondents believe offspring should have access to identifying information. They want to see informed consent from the donor before their sperms, eggs or embryos are used for any purposes, including research, and they want retrieval of sperm or eggs from cadavers to be allowed only if the deceased gave consent before death or if the couple had been undergoing infertility treatment at the time of death.

Respondents agreed some practices should end completely, for example, the retrieval of eggs from fetuses, creation of embryos for research purposes and cloning of embryos.

The Chair: Can I ask you to wrap up your brief there, please.

Ms Allen: In concluding, I would say the respondents to our survey supported that if a particular technology or service is prohibited by law, anyone offering to provide such a service should be charged with an offence, as should anyone offering to pay for it. They really want to see licences required to provide any service related to infertility treatment.

Thank you.

The Chair: Thank you all very much.

If we can immediately move right along the questions, I'll ask Madame if she has any.

[Translation]

Ms Pauline Picard: I do not have any questions.

[English]

The Chair: Mr. Martin.

Mr. Keith Martin: Thank you all again for coming out.

Ms Jackson, thank you for your eloquent defence of access to gametes for infertile couples. It was very well done.

Mr. Kelly, you mentioned the UN Convention on the Rights of the Child. I wonder if you might be warping the intent of the UN declaration a little. Isn't the original purpose to reunite children with their biological parents when both the biological parents and the children desire they come together? It comes out of the terrible situations of many of the internecine conflicts that have occurred where numerous children were orphaned as a result of war.

My last question would be to anybody who can answer this. I wonder if whether identifying characteristics for those who are donating their gametes for infertile couples is going to have an impact upon those who wish to donate. I suspect it's going to have a tremendous negative impact on the access to people who are prepared to donate their gametes for this purpose.

Mr. Kelly: I'm glad you raised that question and I'd like to address it. That same argument has also been put forward in the jurisdictions where adoptees have been trying to access their identifying information. It's the equivalent argument that if adopted persons are given right of access to their identifying information, the adoption process in that jurisdiction will come to a grinding halt.

I refute that argument by saying look at the areas and jurisdictions where access to identifying information by adult adoptees is made available. You can look at British Columbia, for example. The adoption process there has not ground to a halt since our adoption act changed on November 4, 1996.

If you want a longer-term view, a study has been done in New Zealand, which has had open adoption records since 1986. You can go back even further in England to I believe 1968. The same argument was put forward in these areas that to allow -

Mr. Keith Martin: Does that deal with gamete donations?

Mr. Kelly: No, I'm speaking about adoption, but I'm speaking about the issue of access to records. In those cases it was said access to records by adult adoptees would destroy the adoption process in those areas.

It's the same argument you're putting forward here that access to information by these children created through artificial reproduction will have a negative impact. It's an unsubstantiated claim when you look at the facts and relate it to what's it's as closely related to as possible, and that's the access to records issues in jurisdictions that have allowed access to identifying information by adult adoptees. It does not hold water.

Mr. Keith Martin: It's not the same as donating gametes. Adoption versus gamete donation. I'll ask the question. Is there a parallel, the actuation, where anybody's looked at this scientifically and asked people whether as donors they are prepared to donate if they are going to be potentially identified later on by a 20-year-old who comes knocking on their door?

Ms Allen: I would like to respond to your question. I know one of the later presenters has done a survey and will respond to that. I'd like to say it does seem to be that the current pool of donors could drop off.

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What we don't know is whether there are men who would donate but who won't donate under the current system. We also don't know whether, with education and increased public awareness about the need for donor gametes, more people might not come forward.

Mr. Keith Martin: So you're saying they won't donate now when they're not identified -

Ms Allen: I'm saying we don't know that.

Mr. Keith Martin: - but they might donate if they are going to be identified?

Ms Allen: What I'm saying is that under the current system, with financial compensation and with anonymity and without a public education campaign, what we know about the current donors is that they probably wouldn't continue to donate without financial compensation. What we don't know is whether there might be people who would donate under a different system. Probably the way to go is to run some trials and see what happens.

I don't think anybody can argue it's better to pay for the building blocks of life.

Mr. Keith Martin: I'm referring to identification not to compensation, which was dealt with quite well by Ms Jackson.

Ms Allen: Oh, okay.

Mr. Kelly: I would also like to respond to that issue.

I'd like to refer you to article 3 of the convention. Article 3 says essentially that the best interests of the child shall be a primary consideration. So I think you're framing the question wrongly here. Your question should be: how will not giving out this information be in the best interest of the child? That's what you should be looking at here.

Mr. Keith Martin: We do have two groups of rights here. You can't deny that.

Mr. Kelly: Not if the child has the paramount and primary right.

Mr. Keith Martin: It doesn't say paramount; it says primary.

Mr. Kelly: It's primary. It's the first right.

Mr. Keith Martin: It says a primary.

Mr. Kelly: There can only be one primary.

Mr. Keith Martin: There are a lot of primary considerations, but we won't get into that.

Ms Kimbell: The evidence from New Zealand is that when they allowed the RT child to have access to information, yes, the number of donors dropped off, but it rose again. The evidence in New Zealand is, yes, the quality of donor changed. The new donor who knew his name could be given out and that he could be found and contacted was more likely to be a married man doing this because he knew the importance of children.

We think it's quite erroneous to say we mustn't give out information because the number of donors will drop off. That's to place the needs of the donor above the needs of the child. Those of us who have been children who have been denied information say it's the most terrible thing to be denied what is of fundamental importance to every other citizen. Who are you? What is your genetic ancestry? Nothing can be worse than that.

In New Zealand open adoption is working very well and very satisfactorily. Almost no one wants closure and secrecy now.

Mr. Keith Martin: I'm curious about what Ms Jackson has to say.

Ms Jackson: If you'd like to hear a little about the Australian and Swedish experiences with this exact issue, Dr. Barwin would probably speak to it best.

Mr. Keith Martin: Please.

Dr. Norman Barwin (Member, Infertility Awareness Association of Canada): Thank you.

The Australian study, which is a study of people who are actually donating sperm at the present time, found that when they were asked whether they would donate sperm if they were identified, some 30% agreed they would and 70% said they wouldn't.

The Swedish experience, on the other hand, found that when donors were asked if they would agree to their names being kept on record, the donors withdrew from the study and they actually had to go to France to get many of their donors. That was the Swedish experience.

Incidentally, in the screening of donors, the recipient parents do get a mass of information, which I'm sure ReproMed will allude to. They get the information not on that single sheet of paper that was shown, but receive facts about the paternal grandparents, maternal grandparents, each relative. A family tree is given, plus all the tests, plus the salient physical characteristics, as well as talents and hobbies of that individual. So a lot of information is provided.

Mr. Keith Martin: I can certainly see the need from a medical perspective. If some medical condition were to intervene later on as a child or an adult, you'd certainly want to know the genetic background of the donor. To purely find it to assess somebody's roots had quite a negative impact on the donor pool that was available.

Dr. Barwin: That's right. I can tell you, in my experience, having been in this field for some23 years, only once have I actually been contacted. I have identified information by number, and it was a donor who donated sperm some 20 years previously, frozen sperm, and a couple just happened to have chosen this donor. The child was born with webbed fingers, and I actually went to the donor, who happened to be a physician, a surgeon actually, in Saskatchewan, of all places, who was quite surprised when he got this call from me some 22 years later and was open to giving me the information that he himself had had two children and they were perfectly okay. There was no family history. We were able to make that linkage and inform the recipient parents that in fact there was no genetic linkage.

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That kind of identifying information is available, and the number of the donor and the linkage to the individual is a matter, hopefully, of record. And this is where we hope the legislation will have a tremendous impact in the licensing of sperm banks, in the accurate keeping of records so that there will be identifying information, albeit on an anonymous basis.

Mr. Keith Martin: For medical purposes.

Dr. Barwin: For medical purposes.

Mr. Keith Martin: Thank you.

The Chair: I believe Reverend Lukey would like to respond.

Rev. Lukey: Dr. Barwin said that couples were given the information. We've received no information about our donor, no medical information, no non-identifying information at all. All we know is that there was a donor and that he had brown hair and a medium build. That's all we know. So I think there's inconsistency, and that's where it would be helpful, to have consistency at least around non-identifying information.

The Chair: Mrs. Parrish, have you any questions for the witnesses?

Mrs. Carolyn Parrish: No. Actually, I have a comment, though, from the first presenters.

I'm sorry to hear that you think this has all sprung up over Dolly. In fact it's been going on for some quite some time. We've had a royal commission on it that went on for several years, and we've had focus groups all over the country commenting on this legislation before it came forward. So it's not one of those things that's sort of a reaction to science fiction in the media. It hasn't been that way at all. That's why we're holding these hearings, too, so that we could get more input from the people who are most affected by it.

I also was a little surprised when you said you thought that a sperm donor should be repaid for expenses, which seems to be a consistent position, and you also said inconvenience. I'm kind of curious as to what amount you would set on the inconvenience.

Ms Ryll: Do you mean money amount? I don't have any amount in mind.

Mrs. Carolyn Parrish: Maybe I'm misinterpreting what you said.

Ms Ryll: I'm not sure I understand what you're talking about.

Mrs. Carolyn Parrish: You suggested that the sperm donors should be paid for their expenses and their inconvenience.

Ms Ryll: Like parking or for taking time off work. That's what I mean by inconvenience.

Mrs. Carolyn Parrish: So it's strictly expenses.

Ms Ryll: I'm not quite sure what you thought I meant.

Mrs. Carolyn Parrish: That's why I asked the question.

Ms Ryll: Also, I don't think this whole thing has sprung up from the Dolly cloning issue either. If you found that with my talk, I'm sorry that's the only thing that you got out of it.

Mrs. Carolyn Parrish: No, that's not the only thing I got out of it, but I was just wanting to clarify that it's been a very long process -

Ms Ryll: Yes, I realize that.

Mrs. Carolyn Parrish: - and we've had lots of input right across the country.

Ms Ryll: I realize that.

Mrs. Carolyn Parrish: Thank you.

The Chair: Ms Beaumier.

Ms Colleen Beaumier (Brampton, Lib.): There was a comment. You were saying that people are presently compensated for donations. Are you telling me that right now there is a price?

Ms Allen: I'm saying that the current system provides financial incentives, which is quite different from compensation.

Ms Colleen Beaumier: That's what I thought you said. And what is the financial incentive?

Ms Allen: I would say personally that for a sperm donor to be paid $40 per donation and to go twice a week to the sperm bank for a year is a financial incentive for a university student. It's a significant amount of money. It could make the difference between staying in school and not staying in school. And $2,500 for an egg donor - or $2,000, as I think Fiona mentioned earlier - is an incentive.

The Chair: Dr. Barwin.

Dr. Barwin: On a point of information, I'd like to say that according to the Health Disciplines Act, one is not allowed to buy or sell human tissue, so that's in the Health Disciplines Act, for one. The donors are compensated for out-of-pocket expenses. And the amount generally given, even in the big city of Toronto, is $40 for out-of-pocket expenses, bearing in mind that the donor may have to come on a number of occasions to have at least two HIV tests done over a six-month period in addition to the samples that have to be given and in addition to counselling and adequate history, etc. So personally, if you're looking for an amount, that doesn't seem like an astronomical amount to pay for expenses. I don't think any student is going to pay for his university education that way.

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The Chair: Mr. Kelly.

Mr. Kelly: The issue of donors for multiple children has come here, and I'd just like to address this briefly.

If you pursue a policy of not identifying information and allow multiple donations by a single individual, in this case I'd like to refer to the doctor in the United States who impregnated a hundred women through his artificial reproduction. There you have a non-identifying system, all these children in the same area, all of them not knowing who each other are, all about the same age, all of them who could become incestuously involved if you pursue a policy of non-identification.

The Chair: Thank you very much.

I'll give you the last word, Reverend Robertson.

Rev. Robertson: Just to briefly respond to that, we did an interview with our clinic in Calgary just to talk, because these issues are quite present. In Calgary they work on a process of seven live births per region - and the ``region'' means the province of Alberta - per donor.

The Chair: If there are no other questions by my colleagues, I'd like to take a moment to say thank you all very much for sharing some of your personal experiences with us. Thank you for being here.

If I can take maybe a five-minute break, we can change panels.

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The Chair: We will come back to order, please.

I would like to remind the witnesses who weren't here earlier that we would like you to keep your presentations down to five minutes because of time and the late hour of the day.

I would like to start from my left and work my way over. As one group finishes we'll just go into the next group. I would like you to give us your name and the group you're representing. We'll start with someone who's probably a little wiser than all of us in the room. He's with his mom, if they would now take the floor.

Ms X (Gamete Donation Advocacy and Support Group): Thank you.

Before I begin I would like to ask those involved in the media to respect our family's need to remain anonymous through this discussion today. My son and I are here today to discuss a matter which is of a most intimate and private nature, as it relates to our family and more importantly to my children's origins. The focus of our comments relates to the concepts of dignity and respect. We ask that you respect our need to retain our dignity and privacy by acknowledging our right to speak anonymously. Thank you.

Allow me to introduce myself and my son. I am the gamete donation mother of two. I also have a six-year-old daughter who's in the hall with the babysitter. I am the coordinator of the Gamete Donation Advocacy and Support Group, a national support group for gamete donation families. Over the past two years our group has been actively involved in providing support to current and future donation families and in advocating our views on the issues that so profoundly impact on our families. Many of these issues are outlined in Bill C-47 and the accompanying policy document.

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I'd like to thank you for the opportunity to be a part of these proceedings. For the families of gamete donation children, Bill C-47 and the accompanying policy document, Setting Boundaries, Enhancing Health, represent a dream come true. For our families, the prospects of a regulatory environment being developed which will be more respectful of the needs of the children and the families formed through these technologies is very wonderful and long overdue.

There are many positive aspects to this bill and the policy document as they relate to the families. Specifically, our group believes that the need exists for the development of a regulatory framework for the delivery of these services; the development of a national registry for gamete donation births, with long-term storage of all related information, including both non-identifying and identifying donor information; mandatory education and counselling on the consequences of gamete donation for all participants; reform of the legal system to protect all participants involved in the gamete donation system process; equal access to these services for all those who require them; and the move toward a more altruistic delivery of these services and, as a result, a move away from the commercialization of this process.

Over the past two years our group has been very involved in discussing these issues with a variety of groups and individuals: individuals attempting to form families, families already formed through gamete donation, medical professionals, politicians, policy advisers, and academics. In our discussions I have found that there is an acknowledgement among most that regulation is required, that changes are taking place at a very rapid pace, and that the system needs to be improved to incorporate our values as Canadians. Those values are well defined in Bill C-47 and its accompanying policy document, and I think can be summed up in two words: dignity and respect.

Specifically, the gamete donation system in this country must reflect an understanding of the needs of the families and, most importantly, the children born through these processes. The system also must acknowledge in a dignified and respectful way the wonderful gift that is given by sperm and egg donors. Without the donors there would be no children and no families.

As a result, we believe the overt commodification and commercialization of the gamete donation system in this country is contrary to human dignity. Sperm and egg donations are vital to the creation of human life, and as a result should be accorded the respect and dignity they deserve and should not be subjected to the vagaries of the commercial marketplace.

Allow me to make this very clear. The discussion surrounding this bill is not about who can afford to purchase a child or what income level you need to do so, nor is this a discussion about making a choice between working a steady shift at Pizza Hut and selling your eggs or sperm for university tuition. Additionally, this discussion is not about charging what the market will bear because people are so desperate for children that any cost is bearable if you can afford it.

Bill C-47 is a discussion about the values underlying the creation of human life and what we as Canadians hold dear. This is a discussion about our children, created as a result of the donation of the building blocks of life. This is not about the purchase of a car or the production of a piece of furniture. The discussion surrounding Bill C-47 is about the creation of a human being and their subsequent emotional and psychological needs. This is a discussion about the creation of my daughter and of my son, their rights and their needs.

Over the years, the delivery of these services has largely ignored or discounted the needs of the children born from these processes. Unregulated commercialism of the gamete donation system in this country promotes an attitude of disrespect towards these children and their families by allowing the values of the marketplace to take precedence over our values as moral and ethical human beings. Our children have the right to be treated with dignity and respect. Who will speak for the children if you, as a member of this committee, do not?

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Policy advisers at Health Canada have rigorously studied how a move toward an altruistic donation system can be implemented. Acknowledged experts in this field have offered learned opinions on how this proposed system can work on a phased-in basis.

If we all contribute towards ensuring that a more respectful and dignified approach to this process is in place, then we can change the system for the better. Threatening to close down the system so that no one will have access to these donations unless the system remains as it is - an unregulated, commercial marketplace - is irresponsible and unethical. Agreeing to work toward a more respectful and dignified delivery of this service is what we should all be focusing on and working towards.

Bill C-47 speaks to that progress and innovation. Our children deserve nothing less than our best efforts towards this very positive change.

Mr. X (Gamete Donation Advocay and Support Group): I've known about my origin since I was a small boy. My parents chose to be very honest with me, and explain this matter in a very loving and factual manner.

Without this wonderful gift, I would not be here. I wish that one day I could thank our donor, but I will not be able to.

My sister and I represent thousands of donation children born each year in this country. We have the same needs and rights as your children.

Bill C-47 ensures our right to be born in a dignified, safe and respectful manner. Please listen to us, and change the system to reflect our needs.

Thank you.

The Chair: Thank you very much.

Dr. Sullivan.

Dr. Robert Sullivan (University Professors Involved in Male Infertility Research and Diagnosis): I work at Laval University in Quebec City. I represent my colleagues across the country who are university professors involved in the diagnosis of and research on male infertility.

You have heard that one out of ten couples have difficulties conceiving. In 50% of these couples, the male partner is the sole or the contributing factor of this disease.

We are here today to express our very serious concern about the ban on compensation to semen donors. This ban will have three important consequences. It will stop basic research on spermatozoa male infertility, and any research involving measurement of products or chemicals in human semen. It will severely reduce the chances of finding the causes of male infertility and treatment of this disease. It will prevent the accurate diagnosis of infertility in couples consulting with infertility clinics.

These important consequences are linked to the fact that the supply of normal semen samples will be severely decreased and compromised by the ban on compensating semen donors, contained in Bill C-45.

As background information to justify our position, I would like to emphasize three points. The first one is that in all countries we have surveyed over five continents, representing more than15 countries, compensation is a common practice.

In all these countries we were told that the ban will greatly endanger research programs. Even in France, where Health Canada officials claim that semen donor compensation was allowed, donors receive compensation, not payment. In fact it was the misunderstanding between payment versus compensation that misled Health Canada officials.

Second, Health Canada officials also claim that in Canada no compensation for tissue or biological fluids takes place. This is true for blood donations for transfusion, or organs for transplantation. It is definitely not true for solid fluids donated for research programs.

Even the Medical Research Council of Canada, which funds basic and clinical research, accepts the principle that volunteers participating in research studies not only may be compensated, but must be compensated. They say that

Research subjects must not be expected to subsidize research by suffering monetary or other losses. Subjects' cost must be reimbursed.

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The third point deals with the report prepared by the Royal Commission on New Reproductive Technologies. After widespread consultation, it concluded that compensation to semen donors was acceptable to Canadians, even up to $75 per specimen. Most research laboratories involving research and diagnosis of male infertility compensate semen donors up to $25 to $45 per semen in our country.

Why do we need semen from normal fertile men? In all research programs, whether they are on cancer or on male infertility, the inclusion of control specimens or subjects are absolutely essential to validate the study.

If someone wants to investigate whether the AIDS virus influences the distribution of specific classes of white blood cells and human semen, for example, semen from a normal man must be included in the study protocol, and used as a reference point.

Semen samples from normal men are also used to diagnose, for example, whether the male or female partner is responsible for infertility in a given couple.

I would like to emphasize here that most of the human specimens used for diagnosis and research on male infertility involve fresh semen. This means that specimens are used the same day they are donated. What is left at the end of day is simply destroyed, in contrast to semen specimens for donor insemination programs where the semen is kept frozen for many years.

Some may argue that it is possible to develop a sperm donation system on a purely altruistic basis. The centres we consulted around the world do not agree with this statement, and this is why, after all, compensation of semen donors is so widely spread around the world.

In Bill C-47 Health Canada officials have proposed a complete ban of semen compensation phased out over a two-to-three year period. Instead of banning compensation of semen donors, without any strong and proven evidence that the supply of semen specimens would be adequate for research diagnosis and donor insemination, the government should delete the ban to compensate semen donors from Bill C-47, and wait for scientific evidence to support that. The purely altruistic system is a viable option for providing us with semen for research.

In summary, I urge the committee not to ban compensation to men who donate sperm specimens for research or diagnosis purposes. If this ban is not deleted from Bill C-47, high-calibre research will essentially stop, and in many cases the diagnosis of infertility will not be possible. This will result in improper management of infertile couples, and a reduction in Canada's capacity to benefit from research in this important area.

Thank you.

The Acting Chair (Mrs. Carolyn Parrish): Thank you, Dr. Sullivan.

Ms Ruberto.

Ms Cathy Ruberto (Assistant Clinical Director, ReproMed Ltd.): With me is Dr. Alfonso Del Valle, our medical director.

ReproMed is an internationally recognized sperm banking facility that provides its services to the majority of recipients of donor insemination, through their physicians in clinics across Canada. The services provided by ReproMed and other sperm banking facilities are a necessary service in this country.

We are here today to express our very serious concerns about Bill C-47, and to provide you with comments on how the bill may be amended. We are not opposed to legislation. However, we wish to see a regulatory body established prior to the legislative process.

We feel this bill is being rushed through committee and Parliament because of an impending election call and the end to this Parliament. We feel that the government is succumbing to pressure to wrap this up as quickly as possible, rather than dealing with the realities of the extreme complexity of each statement in this bill with respect to due process.

We have grave concerns that our government wishes to criminalize a field of medicine it barely understands, out of fear and anxiety about the unknown.

As of June 1, 1996, Health Canada's Bureau of Biologics regulated sperm banking and assisted conception facilities through the processing and distribution of semen for assisted conception regulations, which incorporate the CFAS guidelines. Along with our written presentation, we submit a copy of this act, and the corresponding documentation for registration required by a facility wishing to provide the services that we provide.

It is important to mention this act, because human semen for assisted conception is already regulated, and mandatory adherence is required under the Food and Drugs Act.

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ReproMed and the CFAS had a major and pivotal role in the establishment of these regulations, and worked very closely with the Bureau of Biologics. We will continue to work closely to ensure that the regulations are kept current and up to date, and in keeping with the standards of practice in sperm banking.

Health Canada and certain committee members have expressed concern that a donor would not provide truthful information regarding their health if their motivation was financial and not altruistic. The ability to recover accurate and detailed medical information on a semen donor is not dependent on whether a donor is compensated.

One would not want to rely on someone's memory of information so critical to the lives of others. One relies on the cross-referencing of one's medical history from his physician's medical records. This issue is moot and redundant, as there are already established regulations under the Bureau of Biologics.

It's very clear from the wording of the bill, and in reviewing the previous hearings by the subcommittee, that this piece of legislation is not interested in addressing the issues of preventing disease transmission or public health and safety. It is legislating ethical, moral and religious views.

We were not consulted by the royal commission. In fact, the research material that was collected on sperm banking was not even from a Canadian sperm bank. It appears that our government has looked towards the experiences of other countries in attempting to legislate the assisted reproductive technologies, rather than the experiences of Canadians who will be directly affected.

Specifically, Health Canada has studied the legislation of Sweden, the U.K. and France, and the experiences of Ken Daniels in New Zealand, to draft legislation for Canadians. But we do not believe that the experiences of these predominantly white, Anglo-Saxon countries represent the diverse ethnicity of our country.

Canada is a multicultural melting pot of people from all over the world, living in harmony, and in respect for a person's individuality and beliefs. Yet it appears that Health Canada has deemed itself the morality squad for all Canadians.

Included in our submission before you, we conducted a worldwide study of legislation and regulations pertaining to donor insemination, the trendsetter being set, the perceptions of these regulations, and their impact on the providing of donor insemination.

If one chooses to look at legislation in terms of the ethical, moral and religious perspective, then one might wish to review the experience of Israel, where the composition of the population is more closely compared to Canada.

A high percentage of Israelis are either Jewish, Christian or Moslem. Because of this religious composition, and to avoid conflict between secular and religious people, and between the different religions, the legal problem of DI was resolved, not with laws but by regulations published by the Israeli ministry of health.

The viewpoint behind this is that the state and its authorities do not deal with the ethical or religious questions. The decision is left to the couples and the donors. The regulations address technical requirements, health issues and confidentiality issues concerning the couple, donor and the resulting offspring.

In Spain, restrictive moral laws of General Franco's national Catholicism delayed Spain's incorporation into the ranks of leading nations in the assisted reproductive technologies. However, they quickly recovered after Franco's death. Although Spain still remains predominantly Catholic, its laws on the ARTs can be considered by some to be open-minded, flexible, and adaptable to scientific knowledge.

Through ongoing consultations, 71% of our donors have stated that they will not continue to participate in our program without compensation, and 73.5% of our donors have stated that they will not continue without anonymity.

Our statistics regarding donor attitudes towards disclosure and compensation in our assessment are very similar to those of other countries that we have investigated for the purposes of this discussion. We expect severe shortages in our semen donor specimen inventory, and difficulties in releasing specimens already stored but not yet quarantine-released.

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The subsequent outcome will be a dramatic reduction in our services, such as the continuation of our research into recipient attitudes, donor disclosure, future offspring research and research into cryopreservation techniques without adequate specimens available.

In the time it will take to recruit a new and different type of donor, as suggested in the literature from other countries that have attempted this type of legislation, and to undergo six months' quarantine releases on these donor specimens to ensure safety, we fear that access to donor insemination in this country will come to a standstill and perhaps never recover, as it has been demonstrated in Sweden and the U.K.

As demonstrated in Sweden and the U.K., special directives are required for the importation of semen specimens from other countries that must abide strictly to the legislation established. However, this issue is not being addressed in Bill C-47. Bill C-47 allows for the direct importation of compensated, anonymous donors from the U.S. and elsewhere that will only allow their capitalism to flourish. It defeats the purpose of this type of legislation in Canada. Canadians will be forced to either travel to the U.S. or to rely on U.S. donors for donor insemination.

One of the most important recommendations that we would like to make today -

The Chair: Excuse me. You've gone way over your time, so I'm going to have to ask you to wrap it up a bit.

Ms Ruberto: Can I just wrap it up then? I only have one more statement to make.

The Chair: Okay.

Ms Ruberto: We don't want to see another Krever inquiry occurring because of the inefficiency of government funding and an eventual termination of assisted reproductive activities. To use the example of blood banking - sperm banking is so commonly compared to it - as a result of the Krever inquiry all potential blood donors must now complete a one-hour detailed questionnaire at the time of each blood donation. We are all painfully aware that the number of persons donating blood has dropped dramatically to the point where our blood supply is in a critical state of emergency. The Canadian public has lost faith in the system because of its mismanagement and its inability to understand the basic issues surrounding tissue banking.

We should be learning from the examples in this country and we should not be creating laws out of ignorance, fear and political pressure. Our primary concern should be primum no nocere, the principles of beneficency, non-maleficency, autonomy and distributive justice that form the framework of a good approach to weighing the rights and responsibilities, the possible harms and potential benefits to this technology. In other words, ``First do no harm''.

Thank you.

The Chair: Thank you very much.

Doctor would you like to...? I'm sorry, go ahead.

Ms X: Excuse me. I realize I'm out of order. I have found it very difficult to sit here as a gamete donation mother and have a commercial enterprise be allocated twice the time that we were allocated.

The Chair: No, actually, it wasn't twice the time.

Ms X: And also it has been very difficult for gamete donation families in this country who have to remain in the closet to not be able to retort many of those statements.

The Chair: Sorry, I will just interrupt. It'll be fine. She did have a few minutes above her time, as you did, and as some other people did through the day. Sometimes it's hard to stick to the five minutes and sometimes it's even harder to cut the person off at five minutes.

So if we could just continue, then you can have your say when the question period comes.

Ms X: Thank you.

The Chair: Go ahead.

Ms Shirley Pratten (New Reproductive Alternatives Society): I'm a founding member of the New Reproductive Alternatives Society that was formed in 1987. It is Canada's first support group for parents and their children who were conceived through donor insemination.

For the last decade we have been actively involved on a provincial and national level with policy-makers and media in trying to make changes to benefit primarily the estimated 1,500 to 6,000 children who are born each year in Canada and also the other participants in the process.

My own personal situation is that I was married to a man who had infertility problems. We could not conceive normally. I have a 15-year-old daughter and she knows absolutely nothing about the donor. We have no information whatsoever. ReproMed does give information, but I was impregnated before ReproMed, unfortunately.

In relation to Bill C-47, I'm going to cover two points: number one, what we agree with; and number two, what we think needs consideration. Our organization overall endorses the objectives of the bill and supports prohibitions and enforcements, although I will be making a further comment about subclause 6.(1) and subclause 6.(2).

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For consideration, we think that the general tone in the bill needs to recognize the benefits that reproductive technologies have in assisting people to conceive children they wouldn't otherwise have as well as to recognize some of the areas of concern. To make that a little bit more personal, even though I'm somebody who's worked hard and long for change over the last 10 years in the donor insemination system, I am very grateful and I always will be grateful that a system was in existence. Otherwise, I would not have my daughter today.

In regard to subclause 6.(1) and subclause 6.(2), we feel these clauses move toward a more healthy and more open practice of donor insemination. However, although we think non-payment to donors is the ideal scenario, we concur with other experts in the field that this would need to occur very slowly and with a great deal of public education and with a safety net in place in case of a diminishing supply of donors. As people who already have children through this method of conception, our bottom line would be to support and protect other people who are wanting children this way.

At this point we support out-of-pocket expenses. I've been listening to other people's comments about out-of-pocket expenses. There seems to be some difficulty in trying to establish what amount that would be.

In our organization we do have a former donor. This man donated it regularly in British Columbia for four years, three or four times a week for that period of time, and he was paid $50 each time he donated. He is very clear that he made money out of this. He was a drop-out medical student at the time. He actually lived with a group of musicians who were donating on the program. He moved in with them and he was interested to know how they were always going on exotic vacations. They asked him why he didn't join the donor insemination program that they were on. And he did.

He said it was very definitely a source of income for him. He was making $700 or $800 a month out of that, and as a poor student it was money for him. Now if he had only been donating for a short period of time, that $50 would not really have amounted to anything. The reason he joined our group is that he feels a lot of guilt about that. Since he became a parent himself and he had his own child he thinks about his days of being a donor. He felt it was unethical that he profited by receiving the money he did. He knows he had some responsibility in that, too, but he said he did make money on it.

We think society needs to find other ways to reward donors that aren't monetary, such as elevating the status of a sperm donor in the same way as other donors of organs or blood are publicly recognized and validated for their contribution.

Unfortunately, Rona Achilles is sick today. She is the sociologist who has done the main research in this field. I always remember what she said a number of years ago. She said you don't see a sperm donor going around with a badge that says ``I have donated sperm'', as you do for those who have donated blood. That's because infertility and reproduction is tied to our sexuality. To be a donor involves the act of masturbation, so that gives it a much more clandestine effect. That's what underlies the reason why people are not educated about the need for it.

With these kinds of changes come more respect and consideration for the resulting children born of donor insemination. Many adult children conceived this way. There is a group called Donors' Offspring in the States. They have expressed their anger and frustration at the knowledge that their donor-fathers were paid money to help create them.

To summarize, we support the bill and consider it another important step in addressing the extremely complex health, legal and social issues around reproductive technologies as well as ensuring that they are practised in a safe, ethical and accountable framework. We feel the flavour of the bill should recognize how these technologies are helping people as well as recognizing the areas of concern.

Regarding subclause 6.(1) and subclause 6.(2), our long-term goal envisions an altruistic system of sperm donation that rewards donors in other ways that aren't monetary. We believe such a change in the system needs to proceed slowly with a great deal of public education. We believe the dignity and respect of the resulting children should be a high priority.

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Thank you for the opportunity to address the members of the committee. We are pleased to have the chance to share our expertise as the lived experience of having DI children who are being raised to know the origins of their conception.

The Chair: Thank you very much. Thank you all very much.

Before I go to the questioning, I remind the audience or the public that we can't put up with any outbursts. Everyone here on our panel is a witness and they are entitled to their opinions. We would really appreciate it if each of you would respect that. The reason we are here is so that we can learn and we can understand the issue.

Perhaps I will start the questions with Madame Picard.

[Translation]

Ms Pauline Picard: Welcome everyone. My question is for Ms Ruberto. First of all, I was quite surprised to hear you say that this wasn't urgent, that the government had tabled a bill very quickly because there had to be some legislation even if there weren't any consultations. I am a member of the Official Opposition, and since 1993, I have been pushing the government to table a bill on new reproductive technologies.

I am 50 years old and I have defended the interests of women's groups for many years. There has been talk of new reproductive technologies for 20 years now. A Royal Commission of Inquiry was set up and spent four years looking into the matter; it met with many Canadian men and women, and not only with people from elsewhere. A lot of information was gathered. If you can get the Baird report, I encourage you to read these two bricks that contain 293 recommendations. This is not a slapdash effort that we suddenly have to react to. There are even other groups asking us to legislate as quickly as possible because this is urgent. I was very surprised to hear you say we were moving too quickly.

Could you tell us more about your organization? Is it a commercial clinic that sells sperm to hospitals or scientists doing research? I would like you to tell us more about what you do and how you operate. You used the example of blood donors who now have to provide a great deal of information in order to avoid a repeat of the tainted blood tragedy. I imagine you have to take the same precautions to avoid any disaster. Could you expand on that?

[English]

Ms Ruberto: First of all, I'd like to comment in terms of the timeframe involved. As Ms X commented on the amount of time, we were only given five minutes to make a statement. It was very difficult for us to provide you with an overview of sperm banking and all the intricacies of sperm banking in a short period of time. We're in a round table discussion and we don't feel we have to provide you with a 20-page document to read rather than to have the opportunity to spend more time talking with you.

I'm going to have Dr. Del Valle respond to the other two concerns you made in your statement.

Dr. Alfonso P. Del Valle (Medical Director, ReproMed Ltd.): Precisely because of the time, in fact, Cathy failed to mention a statement that was contained in this document. We felt that one of our most important recommendations is that we would like to see this bill redrafted to include only those practices that are offensive to all Canadians, such as cloning, human hybrids, eugenics and all these other issues that have been mentioned. All the other aspects of this bill, as other members have presented before, will probably be dealt with by means of regulation.

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I want to mention that ReproMed is a private organization, is privately funded, and had its inception in 1990 in this country, when about 70% of the semen that was used in this country was coming from the United States. Today, in 1997, the reverse is true, and 70% of the semen provided to recipients in this country is provided by Canadian semen donors.

On the other hand, since our inception, we have changed completely from this ``closed doors'' kind of sperm bank. The staff in the sperm bank spends more time talking to recipients. If there are any recipients in this room who have ever used the services of our unit, they will testify to that.

We opened up precisely in those days when the royal commission was starting to gather this information. We published a paper where we explored issues associated with non-disclosure and openness, and it was actually the first paper ever published in this country in regard to these issues.

Surprisingly, in fact, Rona Achilles, although she did extensive research... It's commendable, the amount of work she did with the very little amount of money she was given, because as this is the most important and perhaps the most widely used assisted reproductive technology - I'm referring to assisted insemination - it was the one given the least amount of budget. To quote Rona Achilles - it is unfortunate she is not here... But to say that probably at the end of her work, the only thing that could be actually said is that there was a lot of work to be done, or in other words that a lot of these issues need to be addressed, and -

The Chair: Dr. Del Valle, if I could just ask you... I'm not really sure...

Madame Picard, maybe I'm not following your question, and I'm not sure if Dr. Del Valle is answering your question correctly. You may want to reactivate and ask the question again.

[Translation]

Ms Pauline Picard: No. Given the time, I think it would be best to give the floor to Mr. Martin. That's fine for me. Thank you.

[English]

Mr. Keith Martin: I think it's important we deal with the facts. Although this is such an emotionally charged issue, we have to deal with the facts.

Ma'am from the Gamete Donation Group, you said quite correctly that without donors we will not have any children. You also mentioned you felt that we should do something about the - and I quote - ``overt commercialization of gamete donation.''

I want to ask Dr. Del Valle how common it is for individuals who donate their gametes to use this as an income source, in his experience.

The second question I'd like to ask, ma'am, is you said quite correctly that children must be dealt with in a dignified fashion. I don't think you'll find anyone in this room who would disagree with that. I would ask you, how is the current process undignified or disrespectful?

Thirdly, having just heard that if compensation is removed the numbers of donors would drop by 71%, and if anonymity is removed from the donation process that 73% of donors would be lost, would you feel that compensation and anonymity should be removed from the process?

Lastly, look in your own heart and ask yourself the question: If we're going to remove anonymity and compensation from this, and if the number of donors is going to drop, would you feel that having no donors is better than not having any children?

Ms X: First of all, I don't think that everybody in this room does respect children born through gamete donation, because if they did, they would understand the needs of those children. The needs of those children are very clear. For example, there are a lot of commercial interests in the whole gamete donation system, and we're represented here tonight by one.

I should let you know I'm very close to these people. I've dealt with them. Dr. Del Valle was my doctor at one point.

I take exception to some of the statements being made by commercial interests, because there can't be a counterstatement made by the families. Mrs. Pratten is to be congratulated, because for the last 10 years she has taken a profile on these issues - probably the only person in Canada who's done so.

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Mr. Keith Martin: How is it disrespectful, though? That's my question.

Ms X: Just let me finish, let me have my say.

There are not people who can come out, go to the media, and start tossing things about from the viewpoint of the family, because this whole thing has been in the closet for so long.

There are many things we disagree with - for example the statistics being thrown out by commercial interests or doctors saying that the system is going to close down. Have we educated donors? No, we have not. To say 71% of the donors would not donate... Have we sat down with those donors and said ``Look, you guys, this isn't a book we're producing here. We're producing a human being - someone who would like to have some information, not identifying.'' And we would suggest that perhaps in the future, if the family chooses it in the best interest of the child, to have identification of the donor, if the donor so chooses, and that at some point, perhaps when the child is 21, when they are an adult, a meeting would take place.

As a mother, if I had been given the opportunity to choose a donor who said ``Yes, I would like to meet the child at 21 and I will give you a book of information, not identifying, about myself'', would I have chosen that method? Yes, I would have, because I would have wanted to have been respectful of the child - of the human being that results.

I was not given that choice - nor was Mrs. Pratten, nor are many people who do not use a commercial interest such as ReproMed in this country. There are many, many, many families who don't have that option. ReproMed has just come about recently. Ask Mrs. Pratten, ask myself, ask people in our group how our donors were chosen.

Do you want to know how my donor was chosen? I'll tell you. My doctor said ``Come back on May 14 and we'll inseminate you''. When we asked if we could have some information, the doctor basically looked at me and said, ``Ask one more question and you won't be coming back on the 14th, okay?''

So today, my two children have nothing. That's not respectful. Anybody who attaches money to this whole process - that's not respectful. Because a woman, a university student who sells an egg for $2,500 or $6,000 or whatever the going rate was last summer - and ads were being placed in the university newspapers... It's not respectful of a child, that that child would know down the road that Mom, biologically, was a university student who saw some easy money. That's not respectful.

But if you tell a donor, ``Look, a child could result from your donation, a child who will grow and want information. Would you like to participate in that process?'' maybe we'll get a lot of donors today who will say no. But if we re-educate donors, as they have done in other countries, you'll get a different, a more mature kind of donor.

I take great exception - and I agree with Madame Picard - to those individuals who come in and say that this government is doing this because Molly or Dolly or whoever came onto the scene. We have spent years of our lives - ask Mrs. Pratten - ten years.

Mr. Keith Martin: I just want to focus you, if I may.

Ms X: I am focusing on all of the issues. I have them written down here. Okay? This is not a rushed bill; this has been very thoroughly thought out. The government has proposed a phased-in process for this.

Mr. Keith Martin: That's not my question.

Ms X: The question is would the donors not donate. Let's re-educate them.

Mr. Keith Martin: Well -

Ms X: And maybe 50% of them would say no; 50% would say yes. I know for a fact that ReproMed has statistics on their surveys that say - I believe it was 23% or 25% or 27% who today, without any education, would agree to be identified. Well, let's bring in this program and perhaps we'll have 50% or 60%. It's not going to happen overnight.

Mr. Keith Martin: We've just found out that 73% would say no.

Ms X: That's because they haven't been educated. Have they been asked the correct questions? Dr. Martin, this is a commercial enterprise that asked the question. Has it not occurred to you perhaps that that commercial enterprise has a bit of a conflict in the way they have asked the question? I think if we get more -

Mr. Keith Martin: I think we should let Dr. Del Valle perhaps answer the question.

Ms X: Dr. Del Valle has had a great deal of time to answer these questions, and Cathy Ruberto has had a great deal of time in the media. We have not.

Mr. Keith Martin: I did ask him a question.

Perhaps Dr. Del Valle - if you could please answer.

Dr. Del Valle: Okay - just very briefly, to emphasize, and to stop with this issue of commercialization, because I think it's very glamorized. The truth of the matter is that this is a private organization. One thing is the fact that the people who live within this organization do have as reasonable a living as they would have in a hospital-based situation. We have been able to achieve satisfaction from both physicians and patients. We have done research... I would ask anybody sitting in this room to independently ask those very same donors the same questions.

.1950

This is the problem we're facing. We have to have faith in what we're doing. Is it in my interest to pay the donors? Maybe it would be less costly for me, but this is not the issue. The very issue is my interest, and for anybody who knows me my interest is the recipient population. Our organization has spent a lot of time, effort, and money. It's to the point that I personally subsidize the sperm bank facility. I don't know if you realize that.

The point of the matter is that currently we know that if we ask the donors, 73% will say they will not donate without remaining anonymous. We have to do more work, definitely. We emphasize the fact that we would like to move in that direction of openness. We have to do research. We have to understand more about the recipients in this very diverse, cultural mosaic we live in.

Mr. Keith Martin: What percentage uses this as a source of income as opposed to compensation to supplement their -

Dr. Del Valle: In our clinic they come once a week. We far exceed any standards published or elsewhere in the world, including New Zealand.

Mr. Keith Martin: On the issue of compensation versus people getting rich, I want to know, out of your donor population, what percentage of individuals use it as a source of income.

Dr. Del Valle: Calculate $40 a week times twelve. What will you get for that? I don't think it's going to pay anybody's university tuition or anything like that.

Mr. Keith Martin: I find it hard to believe that anybody would get rich selling their gametes.

Dr. Del Valle: This is not a transaction; this is compensation. This is the issue and it needs to be very clear in this committee. This is not a payment; this is compensation.

It is not fair that the guy who comes in to donate has to pay for parking, transportation, meals, etc. It needs to be kept low, precisely so that we do not attract these people who are interested purely in financial incentives. That is the issue here: the compensation needs to be low so that it would only be compensation.

The Chair: Thank you.

Colleen Beaumier, please.

Ms Colleen Beaumier: I think we're really focusing here on the money. To be perfectly honest, no, I don't think anybody is going to get rich by it, but it probably does supply beer money. On the other hand, I think we have this thing of dignity. I'm not sure there's anything undignified at all or dignified about conception itself. It's what happens after, where the dignity is. Let's get off those two issues.

What I would like to know is this. If I go into the clinic, what does it cost me to have one try? You're dealing with a politician here, you're not dealing with a technician. Take me from the beginning and tell me. Is there a mark-up on this sperm?

Dr. Del Valle: I want to conceptualize something very important, and this is something thatDr. Barwin mentioned before. The banning of selling gametes is already in the Canadian Constitution. You cannot sell or buy eggs. That's very clear. The recipient is paying for all the services associated with it: the provision of all of the non-identified information; having all of these people do all the work in the selection, screening, and maintenance of the donor program; etc. That is what the fee is for. We have calculated the cost for those things at $500.

Ms Colleen Beaumier: For my first attempt at conception?

.1955

Dr. Del Valle: Yes. We felt that a minimum fee would will pay for all the ancillary aspects and that a reasonable fee for -

Ms Colleen Beaumier: That's for two inseminations?

Dr. Del Valle: That's for two inseminations.

Ms Colleen Beaumier: That's funny, because I have a friend who told me it was something like $3,000 to $5,000.

Dr. Del Valle: Perhaps that is what needs to be regulated. In other words, these are the aspects through a regulatory body. These things need to be regulated in the sense that there cannot be so much discrepancy - unless they are providing something we don't know about.

Ms Colleen Beaumier: You're saying that someone was talking about equal access. Are you talking about OHIP picking up...?

Ms X: I think the figure varies from clinic to clinic. In southern Ontario, where there are quite a number of clinics, it can vary. You also have not taken into consideration whether that person is using fertility drugs. Once you start putting the fertility drug costs on, it can be phenomenal. I think with the $3,000 to $5,000 figure your friend might have been referring to IVF, but $500 a cycle would be, to me, the bare minimum. It could be $8,000 or $9,000. It depends on the fertility drugs we use.

Ms Colleen Beaumier: Okay, that $500 is all-inclusive.

Dr. Del Valle: Yes.

Ms X: People access those specifically. I was dealing with the question of same sex couples and single people. There are many clinics in the country today who make the decision that they will deal only with married heterosexual couples, and they make their decisions based on how they're feeling that day or whatever.

Ms Colleen Beaumier: Well, I would think that would be similar. In spite of the fact that abortion is not in the Criminal Code, there are doctors who will not perform abortions and do not have to perform abortions, so I would -

Ms X: It depends on where you are in the country. If you're in Toronto, there are a million doctors - well, not quite - but if you're in Manitoba, there's one. I think you need to have access regardless. If you're in a different spot in the country, you have that access.

Ms Colleen Beaumier: You were talking about subsidizing your own program. You're not trying to tell us here that you're running a charitable organization, are you?

Dr. Del Valle: Yes, I am, and I can prove it to you at any time. It's been my interest. If you were to see the number of services we provide... We've done research on psycho-social issues, we've done research on aspects of freezing sperm...that any other organization is doing, even in the university set-ups.

We've been able, for example, to develop a mechanism by which we can transport semen from as far away as the Yukon. The sperm comes to our facility for cancer patients who do not have access to storage. This is an aspect of sperm banking that has not been touched upon. The sperm banks are not just there for donor semen, but also for the semen of these men who are undergoing cancer treatment and all that. Their reproductive potential has been threatened by these treatments. This allows these men to have their biologically linked children later on in life when they do wish to reproduce. This is an aspect on which we've done a lot of work, and we've been able to help couples who are somewhere in Yellowknife.

I think the concept of a sperm bank is changing. It's very dynamic. It's changing from being merely a place where you store sperm. We're really there now to understand the whole issue of donor insemination. What are the needs of the donors? Why do they think that way? It is within this set-up that we've also been able to understand the needs of the recipients.

We have to do some work on it. We have to do some research to understand what is happening in Canada. We need money to do that. I think it is welcome to have a pilot project in my facility, where we will look at these issues of openness in an altruistic program.

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Ms Colleen Beaumier: Do you not think it would be better financed at some time by the Department of Health under research and development than...? When you talk about reimbursement, $40 to $50 is a little heavy for reimbursement. I would imagine my son wouldn't mind $50 every once in a while.

I don't want to be crass, but I think we've got this spectrum and this spectrum and somewhere in between lies the solution and the truth.

Ms X: The dignity and respect come in when someone donates sperm or egg because they know they're helping another family have a potential child versus someone coming in saying they'll get $3,000 for their egg and won't have to work at Pizza Hut. That is not dignified and respectful of the child who may result and know that their biological donor...

Ms Colleen Beaumier: The whole thing is a lot of conceptions aren't very dignified, and I'm not sure that the detail is really something you build on throughout life.

Ms X: Could I just make a comment? In the last presentation I believe the people sitting here mouthed ``that doesn't happen here'', when they were referring to the number of births, the 100 who were produced through a doctor. What were you referring to when you said it doesn't happen here, that we don't have doctors doing this, or the number of births -

The Chair: Ms Beaumier.

Ms Colleen Beaumier: I'm finished. I just think we've got these two sides battling and somewhere we've got to -

The Chair: May I interrupt and take Colleen's last minute and a half, if you don't mind, before Mrs. Parrish goes on with her questioning?

I'd like to ask the doctor what you get for the $40. What does the $500 cover? What are you getting for that $500? Is any of it covered under the provincial health care plan or OHIP in Ontario?

Dr. Del Valle: Yes, if the provincial government did not pay for any of the visits and all that, obviously all of those costs would rise significantly. These costs are for the provision, and this is the concept that is important to reflect here.

Basically, the service being provided is the provision of safe and efficacious gametes for the creation of a family.

The Chair: None of the -

Dr. Del Valle: That involves the processing of the sperm, the recruitment of the sperm - all of the costs added together. I think we can be very blunt in that if you spend $100, you can divide it up as to what it costs you to provide that service for one vial. It's as simple as that.

I think you would do that if you were in the public sector. You would do that if you were in the private sector. You would do it anywhere.

Does that answer your question or not?

The Chair: No. If I were to go in, as a male, and give you sperm, what am I getting $500 for? You're giving me $500 for what?

Dr. Del Valle: No, no, you don't understand me.

The Chair: You're getting $40 every time you come in?

Dr. Del Valle: Yes.

The Chair: Up to $500?

Dr. Del Valle: No, no, it's $40.

Ms Colleen Beaumier: It's $500 for the first attempt at conception.

A voice: If you want a baby, it's $500.

Dr. Del Valle: If you go through the clinic and want to have the treatment, for the actual cycle it will be $500.

The Chair: That's clear.

Mrs. Carolyn Parrish: I'd like to ask Dr. Sullivan a couple of questions, and I want to try to get everybody to keep the answers short.

In your clinic you're particularly concerned about male infertility. When you have sperm donors, what percentage of the sperm donated goes for medical experimentation and other such things and what percentage is actually used for impregnating women?

[Translation]

Dr Sullivan: I represent university professors doing andrology research. When someone donates sperm for research, the entire semen sample is used that very day. No semen is frozen or used for clinical treatment.

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[English]

Mrs. Carolyn Parrish: So all the sperm you're dealing with is used purely for experimentation?

[Translation]

Dr Sullivan: Yes.

[English]

Mrs. Carolyn Parrish: In your knowledge of the business, for want of a better word, what percentage of all sperm donations are used for experimentation, studying, looking at cystic fibrosis, genetic tracking, etc., and what percentage is used for impregnating women?

[Translation]

Dr Sullivan: That is a good question.

[English]

Mrs. Carolyn Parrish: I get paid for good questions.

[Translation]

Dr Sullivan: Some research is subsidized by medical research councils to solve infertility or health problems related to reproduction and this work is overseen by the organizations, internal ethics committees, be it in a hospital or university setting.

[English]

Mrs. Carolyn Parrish: No, the question I'm asking -

[Translation]

Dr Sullivan: Yes, I understand; I'm getting there.

[English]

Mrs. Carolyn Parrish: I'm very impatient, so you have to get there quickly.

[Translation]

Dr Sullivan: In that context, all the semen is used for research purposes. On the other hand, there are also private fertility clinics that are not quite as open. You do not know exactly what the semen is used for.

[English]

Mrs. Carolyn Parrish: You've been at this for a while. If you were guessing, would you guess 50-50?

[Translation]

Dr Sullivan: I would say it is very clear for the donors: some donate for research and others for artificial insemination. Often, the men we recruit for research are retired donors of clinical sperm. I would say there isn't really any overlap between the two donations. Some donations are used for insemination purposes or for clinical purposes, whereas others are used for research purposes.

[English]

Mrs. Carolyn Parrish: The point I'm trying to get at is the discussion we've had that if we suddenly stop paying we will have far fewer babies produced. Since this legislation also talks about banning a lot of experimentation, one would suggest that much of the sperm that's being donated for experimentation can then be rechannelled into fertilization. You don't know the answer and I guess it's an unfair question and I may have to get it somewhere else.

The other thing you mentioned that I didn't understand and I need clarified is that when you're testing people to see if the male is infertile, if we don't pay the male then you would not be able to do that testing. I don't understand the connection. If, for example, Reverend Robertson wants to find out what the problem is, I don't think he wants you to pay him. I think more likely he'd pay you. I don't understand the connection there.

[Translation]

Dr Sullivan: The purpose of our research is to identify the causes of male infertility and to find treatment for it; that is what we are trying to achieve through our research. To understand the problems of infertility, you have to understand normal physiology. We have to have a reliable internal control sample against which we can compare sperm samples from infertile men. It is the fertile, normal donors who are remunerated; obviously, the infertile men produce their semen sample for us without any remuneration.

[English]

Mrs. Carolyn Parrish: Thank you.

I'd like to ask Ms Ruberto what she meant by her allusion to ethnicity and our being a morality squad. You were getting pretty carried away there, but I didn't understand what that one meant.

Ms Ruberto: Basically the point I was trying to make was that the research that's been done into these issues is not being done in Canada. It's being done in primarily Anglo-Saxon countries, like Sweden, New Zealand, and the U.K. Our country is made up of a very diverse ethnic composition, so it's difficult to look to countries like Sweden, France, the U.K., and New Zealand and compare Canada to those countries and say if they have these regulations in Sweden then they must work here. We have groups of people living in this country who are primarily Catholic, Jewish, and Muslim. In Sweden I believe most people are Lutheran.

Mrs. Carolyn Parrish: I'm afraid I still don't get the connection, but that's all right.

.2010

Ms Ruberto: I'm just concerned we're not comparing apples to apples.

Mrs. Carolyn Parrish: If you're doing pure scientific research, the basic component cells of a human being are going to be the same. What I think you're suggesting is that certain ethnic groups would not like this legislation because they like to chose the sex of their child.

Ms Ruberto: Well, no. That didn't even really cross my mind.

Mrs. Carolyn Parrish: That's never been done in your clinic?

Ms Ruberto: Sex selection? Never.

Mrs. Carolyn Parrish: Okay. Madam Picard probably took a lot of the wind out of my sails. I was also concerned.

We met in my office earlier and I suggested to you that when you come before this committee, the most important thing to do would be to pick out very dispassionately the points of the legislation you think are good and the points you'd like to see changed. I was a little disappointed that what we got was a lot of rhetoric. You talked about ignorance, fear and political expediency, and I'm very disappointed in that.

Thank you.

The Chair: I'd like to ask a question of anybody on the panel about something we'd like to have some feedback on. Could those who donate sperm for research purposes only be compensated differently than those who donate for reproductive purposes?

Ms Ruberto: That would be very difficult. In our facility I also do research. Oftentimes, from a particular donor, on a given day, specimens will be used purely for research and not for storage for artificial insemination.

The Chair: Dr. Sullivan, is there anything you can add?

[Translation]

Dr Sullivan: Traditionally, those who donate semen for artificial insemination get a higher amount than those who donate solely for research purposes. For example, our research centre gives $25 for a sperm donation, whereas in Quebec, artificial insemination clinics give between $40 and $50.

[English]

The Chair: Thank you, Dr. Sullivan.

I'll let you have the last word, Ms Pratten, please.

Ms Pratten: You asked Dr. Del Valle what percentage of his donors were using the money for income. Number one, if any of his donors were making profit out of it, they wouldn't tell him. Number two, if Dr. Del Valle knew they were making profit out of it, he wouldn't tell you at a meeting like this.

Mr. Keith Martin: I think you should let Dr. Del Valle answer the question. I'm sure he's well capable of doing that himself.

The Chair: If my colleagues are finished with their questions, I'd like to thank you all on the panel and also our younger witness, who is not with us right now but is probably out watching the hockey game and doing something really interesting.

We will adjourn for maybe a minute or so to change panels.

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.2020

The Chair: If everybody is ready, we'll get started again. It's been a long day, so you'll excuse some of us for squinting so we can see who you are.

I'd like to say thank you for being here. Thank you for waiting such a long time to be heard. If you haven't been here through the day, what we've been trying to do is ask you to keep your briefs to five minutes. Just before you reach your five minutes, I'll hold up my gavel - hopefully, I won't drop it and hit somebody - to try to let you know your five minutes is just about up. When it's up, I'll knock the gavel so we can move on. When you're finished, my colleagues will have a chance to ask you some questions.

Please give me your name and who you represent and you can start your brief.

Dr. Suzanne Rozell Scorsone (Individual Presentation): I'm Dr. Suzanne Rozell Scorsone and I'm a former commissioner on the royal commission. I'm one of those who signed the whole thing and I'm also the one with that batch of opinions in the back.

I know you've read this bill more times than you want to think about. So I'm not going to rehearse all of the issues and all of the points. You've also probably read the commission report and you've probably seen my stuff in it. So I've given a brief to the committee, in detail, and I'm just going to raise a few of the technical points there and present them to you here.

First of all, I want to say that I love this bill. It's a wonderful bill. I hope you pass it quickly. I hope it goes to third reading, passes, and gets through the Senate before the writ drops because I think it's a major contribution in a very delicate field and we have a very small window of opportunity. If we miss this time and have to go back to square one, many things will become entrenched or they'll be in place and it will be very difficult to change them.

Once this is done, the country can get on to the regulatory régime to look at how to deal with the technologies, the uses that are considered acceptable.

In general, I think the bill is wonderful. All I'm going to do is point out some things I'd like to see honed to make it as effective as it was intended to be, not to change any substance but to hone it.

Paragraph 4(1)(b) states that no person shall knowingly ``cause the fertilization of a human ovum by a sperm of an animal or the fertilization of an animal ovum by human sperm, for the purpose of producing a zygote that is capable of differentiation''. What's aimed at here is no animal-human hybrids. The problem is the word ``differentiation'', which refers to the separation of tissue, the specialization of tissues. That takes place at the beginning of the third week.

So, in theory, as the bill is written, you could have animal-human hybrids for the first two weeks of the existence of a zygote embryo, which is not, I think, what the government wanted. It is certainly not what the people who came before us, as a commission, wanted. It may have been intended for the protection of the hamster test for male infertility to see whether the human sperm could penetrate the ovum. You don't need to get to syngamy, to the joining of the chromosomes for that. All they need to do is to make their way through the cytoplasmic membrane and then you can kibosh thing. You don't need two weeks to do this in.

My suggestion would be, therefore, that the wording be made more precise. You could say ``for the purpose of producing a zygote which has undergone syngamy'', which is the joining, or you could use words like ``capable of replication'', or something like that. Whatever wording you use, if it stops it before syngamy, then you're at what I think you really want.

Paragraph 4(1)(j) states that no person shall knowingly ``maintain an embryo outside the human body''. This was probably intended to stop ectogenesis, artificial wombs. The difficulty is maintaining an embryo. Yes, the definitions say a zygote is up to 14 days and an embryo is after that. But everybody knows most people use the word ``embryo'' pretty well for everything, including the zygote stage. My fear would be that this could then be interpreted by some as getting in the way of cryopreservation of embryos, freezing. It could get in the way of normal maintenance that goes on in in vitro fertilizations. You could get the whole thing struck down by a court to protect those two things, which society is probably going to continue doing, and then you'd lose the protection against ectogenesis.

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Making the word again more explicit, you could say ``maintain a developing embryo or fetus outside the human body for the purpose of ectogenesis or any other form of gestation outside the human uterus''. Hone it so that it hits the target you really want.

Sublause 6.(1) states that

No person shall sell, purchase, barter or exchange, or offer to sell, purchase, barter or exchange, any ovum, sperm, zygote, embryo or foetus.

I'd like to see you add fetal tissue to that, because some court might think a fetus meant the whole fetus, whereas a lot of the questions around treatment, around experimentation and so on, have to do with fetal tissue. I'd like to see you add fetal tissue to that. I'm respectfully suggesting this.

In the discussion paper New Reproductive and Genetic Technologies: Setting Boundaries, Enhancing Health, it stated that the legislation prohibits ``research on human embryos later than fourteen days after conception''. I can't find any place where the legislation says that. How about saying it in words of one syllable?

The only thing I'd like to add is to please add no commercialization of cell lines. We have lines of cells descended from the full human genome that are then used to produce drugs or hormones and things like that. They are the full human genome. Right now, they can be bought and sold. It would be great if you would say that those could not be commercialized either.

The Chair: Dr. Read.

Dr. James Read (Evangelical Fellowship of Canada): I thank you for this opportunity.

I was trained in philosophy. I work mostly now in ethics and applied ethics. I am also executive director of the Salvation Army ethics centre. You have a complete submission by us, and I'll try to have some comments that perhaps highlight parts of it.

The Evangelical Fellowship of Canada is a national association of Protestant Christians with a membership of 28 denominations in addition to local churches, para-church organizations, and individuals. Part of our mandate is to represent the concerns of this constituency on the legislative issues that affect evangelicals and also affect the common good of Canadian society. We have not only submitted our report on this particular bill, but also a brief to the Royal Commission on New Reproductive Technologies back in 1992.

We applaud the intentions of Bill C-47 to prohibit technologies that undermine or deny respect for human beings. The Evangelical Fellowship affirms the prohibition of certain genetic technologies as well as the prohibition against commercialization of reproductive technologies in the bill. However, while we agree that this bill is necessary and we affirm its preamble and intent, we have some specific suggestions for improvement of what is a justified piece of legislation.

Every perspective is based on certain guiding principles that shape the approach to the issue. Three principles that are echoed in Canadian law and on which we base our assessment of this bill would be respect for human dignity, compassion for human life, and family responsibility.

As a faith community, our belief that human beings are created in the image of God and have inherent dignity and worth is our foundation for the principle of human dignity. We believe that human life must be valued, respected, and protected throughout all its stages. This, we believe, is not only an affirmation of those who hold and share our faith in Christian convictions, but it is an affirmation of something that is close to the heart of all Canadians and is reflected in our laws.

It's essential that we consider this principle of respect for human dignity in evaluating the processes that directly affect the beginnings of life and must encompass the ways we think about, talk about, and relate to the women and men who desire to be parents, those who would help them in this desire, and, most particularly, the voiceless and powerless children, who, if we are not careful, could become the technologically crafted products of conception rather than cherished members of the human community.

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A second principle, the principle of compassion for life, flows from our belief that all human life is of value in the sight of God and to be cared for and nurtured physically, emotionally, and spiritually. We are to love others as we love ourselves. But this is not only a principle of individual action, it is also a principle of social solidarity and is reflected in our society in concern for the poor and the vulnerable. So also a framework of compassion for life is needed when considering reproductive and genetic technologies, which do have the potential to help and heal, but also to exploit and exclude members of society.

The third principle of family integrity is rooted in the fact that we are born of parents, man and woman, and we're dependent upon others from birth. The family is to provide physical, emotional, and spiritual care for its members. The responsibility in family relationships is recognized in our law already by requiring parents to care for their children, and so on. Reproductive technologies are intrinsically tied to the issue of family integrity because their truest intention is to assist in the formation of families.

We have compassion for those who are infertile and believe that some of these measures of assistance can help. We concur with the legislation in its recognition that while these reproductive technologies can offer hope, they also have the capability of hurting, of exploiting, of excluding.

We would say that this is a fine piece of legislation, and all the procedures that the bill prohibits, we in the Evangelical Fellowship of Canada would agree should be prohibited.

There is, as the legislation says, the danger that infertile couples will be taken advantage of, either by clinics or commercial parenthood contracts with surrogate mothers. Surrogate mothers may, as the legislation says, be exploited by an appeal of financial stability or gain. This much the bill already says. We would recommend going further, to prohibit non-commercial surrogate relationships. As we see it, the financial inducement exacerbates something that is already wrong with surrogacy.

As the bill says, zygotes and embryos may not be accorded the respect that is their due and may be experimented on in ways that we would not countenance if used on other human beings. Again, we would recommend, and give you some precise suggestions here, that the bill go further than it presently does and prohibit all non-therapeutic experimentation on fetuses, embryos, and zygotes, whether or not they were created for that purpose and irrespective of whether the parents are consenting to that.

A third area we have some question about is that of sperm donation, particularly anonymous sperm donation, which breaks, as the term indicates, the social, but not the biological, ties and denies children the answers to basic questions of identity. This would be -

The Chair: Dr. Read, I'm sorry, but your time has gone way over. I think I forgot to look at the clock there for a minute, so I will apologize for taking somebody else's time.

Ms Jeffs, would you begin, please?

Ms Jakki Jeffs (Executive Director, Alliance for Life Ontario): Yes.

Good evening. I'm Jakki Jeffs. I'm executive director for Alliance for Life Ontario. Our national board has asked me to present this evening. I came this evening thinking I had fifteen minutes. I've never done anything in five minutes in my life, so we'll see how it goes.

The Chair: Here's your big chance.

Ms Jeffs: You have our brief, which I'm hopeful the clerk has given you.

Alliance for Life is the national coordinating body for 240 affiliated and associated educational pro-life groups in Canada. We have worked for 28 years on issues relating to life and we have watched very closely the new reproductive technology as it has progressed over the last seven years with the legislation.

We welcome the action of the government in introducing this legislation to govern the use of a number of reproductive technologies. We're glad because legislation, in contrast to a voluntary moratorium, indicated to us that the government recognizes the serious effect these technologies and transactions can have on the individuals involved and on society in general.

We're pleased with the preamble, especially where it notes the need to protect and promote the best interests of children, and also the prevention of exploitation of women and children. But we're concerned that nowhere in the preamble or the objects is there a statement that, at least to us, shows the government's intent to protect the developing human being, whose life begins at conception.

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There's compelling evidence that human life begins at conception, and that's our position. We would really ask that as we recognize that there is another human being there, she or he is a member of our species and should rightfully be the objective of society's protection and care.

Just running through some of our recommendations, recommendation one is that the preamble have an addition so it would read:

WHEREAS the Parliament of Canada is gravely concerned about the significant threat to human life and human dignity,

In defining human development, albeit that we understand the terms zygote, embryo, and fetus, we're concerned about the distinctions, especially when we look at the discussion paper, which says ``research up to 14 days''. This technically means the human being defined as zygote may be researched upon. We believe this 14-day provision sets an arbitrary mark, which we don't believe we should be doing.

Given the continuity of human life from conception to natural death, we would prefer to have the definition discussing the pre-born human being to just say ``fetus''. The Law Reform Commission in their working paper 58 have used the term ``conception until birth'' to include the fetus, and we would prefer that it be used all the way through the language of this bill.

Again, some of the language used, such as ``the use of human organisms'', we find a little dismaying. They are human beings if we're talking about conception and afterward. Recommendation three is that the clarity of thought around the humanity of the fetus at all its stages be more clearly reflected in the objects and the language of Bill C-47.

Recommendation four would be that paragraph 4(1)(b) be amended to forbid the conception of animal-human hybrids. We note that when checking whether the sperm can fertilize properly the ovum, they do check sperm with a hamster ovum, and at that point you have a human-animal hybrid. We would absolutely ask for forbidding the conception of any animal-human hybrid at all.

We believe paragraph 4(1)(h) reflects a commendable attempt to forbid prenatal discrimination on the basis of gender and sex, but we're still a little concerned that discrimination may still be present because of health or physical or mental disability. Our hearts aren't settled with that yet. Recommendation number five is that no medical or diagnostic procedure be allowed which leads to the destruction of a human zygote, embryo, or fetus on the basis of its health or physical or mental disability. Again, our preference would be that the term ``fetus'' include the whole of the life inside the womb.

Recommendation six is that paragraph 4(1)(j) be amended to read ``maintain a zygote, embryo or fetus outside the human body''. That's an addition of the zygote, and we feel that would more aptly recognize our connection with the pre-born human being.

We would like paragraph 4(1)(k) to be reviewed. While it's commendable to prohibit the fertilization of the ovum outside of the body for the purpose of research, we fear that once the zygote has been produced outside of the body for any other purpose it may then be used for research. We believe the government's valid objective may be circumvented that way.

Subclause 5(4) to define surrogate mothers had us not quite understanding, quite honestly. As for subclause 6(1), we totally agree that fetal tissue should be added, and we would like subclause 5(3) to be amended with the removal of the words ``other than the surrogate mother''. We do not believe surrogacy should be legal in our country.

The Chair: Thank you. You did something great today, because you did it in less than15 minutes. You were wonderful.

Ms Jeffs: I haven't finished, though.

The Chair: So you can do something in less than 15 minutes.

Ms Jeffs: I can.

The Chair: Thank you.

Monseigneur.

[Translation]

His Excellency Monsignor Bertrand Blanchet (Canadian Conference of Catholic Bishops): My name is Bertrand Blanchet and I am speaking on behalf of the Canadian Conference of Catholic Bishops. My background is in biology and in order to make the most of my time, I will read a summary of the brief that you have already received.

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The Canadian Conference of Catholic Bishops is pleased to have the opportunity to review Bill C-47 and to comment on it. The bill raises fundamental issues that are of great concern to Canadians, because they relate to the origin of life and respect for life, to human dignity and to the protection of vulnerable individuals.

The Conference would like to congratulate the government on tabling a bill which not only replaces the voluntary moratorium with mandatory legislation, but also prohibits an increasing number of reproductive techniques. Banning dehumanizing practices - I think there are 13 in the bill - shows that there is true respect for life and human dignity, especially that of women, as well as of the values of the Canadian public.

Even though we support the ban on the uses of those technologies described in the bill, the CCCB asked that the ban be amended to prohibit any attack on the integrity or dignity of human life at any stage of prenatal development.

As for the bill, our major concern is practices that could represent an attack on the dignity or integrity of human life, be it on zygotes, embryos or fetuses. Most experts in law, health and ethics agree that human life starts at the time of conception. The Catholic Church believes life is a gift from God, who created us in his image, and that human life and dignity must therefore be protected and respected right from the beginning. This fundamental principle of respect and promotion of human life from its very beginning obviously has some ramifications in certain parts of the bill.

Here, I'm raising a few specific concerns. We would hope that in the clause of the bill containing definitions, the expression "human being" would replace the term "human organism" to define "embryo, fetus or zygote". Secondly, the preamble and the objectives should mention the Parliament of Canada's interest in protecting human life at all stages of its existence.

In clause 4(1)(b), it has been pointed out to us that the expression "capable of differentiation" may be too broad in scope. This is what Ms Scorsone stated earlier and I will not repeat what she said.

The explanatory notes accompanying the bill indicate that it would prohibit research on human embryos 14 days after conception. The bill does not seem to explicitly confirm that intent. Regardless, the CCCB strongly recommends that Parliament amend the bill so that all research or experimentation on zygotes, embryos or fetuses be prohibited, unless expressly therapeutic and on condition that no other form of therapy is possible. Non- therapeutic intervention does not respect the dignity of unborn human beings and endangers their life.

The government deserves our praise for clause 4(1)(k) which prohibits the fertilization of the ovum outside the human body for research purposes. But what would prevent a zygote produced for in vitro fertilization from becoming an object of research?

In the practice of in vitro fertilization, the number of embryos is often larger than what is required for implantation in the womb. Although we do not condone in vitro fertilization in any way, we do hope to limit the harmful effects on zygotes thus produced, and therefore request that the bill be amended in order to prohibit the creation and freezing of surplus embryos. Let us recall what happened in England on August, 1996, when over 3,300 frozen embryos were destroyed. Doesn't the British experience teach us that we should immediately suspend the production and freezing of surplus embryos?

Shouldn't advocates of in vitro fertilization emphasize research into methods of freezing ova or other techniques that would avoid the use of drugs that overstimulate the ovaries? The notion that the process of in vitro fertilization makes the destruction of human embryos tolerable must be eradicated.

Clause 4(1)(h) should be amended so as to mention the fetus.

We have noted with satisfaction that clause 6 prohibits the purchase and sale of an ovum, sperm, zygote, embryo or fetus. However, fetal tissue should be added to this list.

We are surprised to note that clause 11 stipulates that no prosecution for an offence under this Act may be instituted unless it is consented to by the Attorney General of Canada or his or her representative. This provision, which opens the door to political interference and discrepancies in the application of the law, sheds doubt on the government's commitment to prohibit these dehumanizing reproductive techniques.

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Our participation in this public debate does not mean that we approve of all the artificial reproductive techniques authorized by law, but we do know that the Church's viewpoint is not universally shared, and we hope that our participation here will contribute to making this bill more genuinely acceptable to all and also to enhance the value of human life.

In addition, there is an inconsistency we wish to point out. The government is proposing to protect the zygote and the embryo, but at the present time there's absolutely no protection given to the fetus. I recently attended the symposium on bioethics of the Council of Europe and we were confronted with the same inconsistency. We said that even if most countries in the Council of Europe accepted abortion, it was still necessary to affirm the need to protect the zygote and the embryo, which this bill seeks to do, and we are pleased with that. Thank you.

[English]

The Chair: Thank you very much. Madame Picard.

[Translation]

Ms Pauline Picard: I'd like to thank our last witnesses. Their presentation was extremely interesting and I have taken note of it. I found the ethical values they presented were very encouraging. It is always highly reassuring to hear about respect and human dignity. Since everything was clear, I'm perfectly satisfied and I have no questions to ask.

[English]

The Chair: Thank you very much. I appreciate that.

Mr. Epp, do you have any questions for our witnesses?

Mr. Ken Epp (Elk Island, Ref.): I think I would like to also underline our gratitude to these people for bringing forward their views.

I have one question. You seem to come from a more moral or spiritual approach. I didn't hear all of your statement, Madam Rozell Scorsone, and I don't have a copy of your presentation.

Dr. Rozell Scorsone: Will this be made available?

The Chair: Yes.

Dr. Rozell Scorsone: I was pretty technical, actually.

Mr. Ken Epp: From the part I heard, you were indeed.

I wonder whether any of you would want to comment on the validity of including that as part of our decision-making process here in the House of Commons with respect to how this affects Canadians?

Ms Jeffs: I'm sorry. Could you just tell me the first bit you said about -

Mr. Ken Epp: My summary question is simply this: is it valid to include a spiritual dimension in our decision-making when we are discussing these things?

Ms Jeffs: Would you like to answer that?

I didn't think mine was spiritual, but I will certainly answer it on ethical and other levels.

Mr. Ken Epp: Well, ethical and spiritual.

Dr. Rozell Scorsone: How can the House of Commons proceed without ethics? One doesn't have to share precisely the same cosmology or view of all details of a religious system or even a spirituality to have ethical views that necessarily are brought to bear in all legislation.

Everything the House of Commons does has an ethical and moral substrate to it. When you decide what you're going to do about foreign aid or when a municipality decides what it's going to do about stop signs, there are certain things that are being assumed there about the value of human life and human dignity, and about how you value certain things. Ultimately, those things go back to some set of moral assumptions, and even though we come from different places perhaps, the purpose of the House of Commons is to come together to represent the population to decide how to balance those things to reach the most authentic consensus.

Mr. Ken Epp: Thank you for answering the question that I wish I would have asked. You made it more fit.

Ms Jeffs: May I comment? I hope I answer your question. I say this with respect to the work I do with our educational pro-life movement. We consider ourselves a human rights association, but I often find that if somebody doesn't agree with our position, they tend to tell us we're spiritual or religious, which sort of puts us in our place, or it's supposed to do that.

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I apologize for that, and I'm sure that wasn't what you were trying to do. We have come here looking at this in the sense that the right to life and respect for human life... ``Right to life'' are words right out of our charter. I think our laws reflect our charter and our ethics around how we respect each human life. That is the whole sense that our presentation, at least, has given.

Obviously, our society is spiritual too. We can't have any of these issues, however 1997 they are, without looking across the whole of our country. Ethnics, morality, spirituality, biology and science, the whole lot is all part of it, I believe.

[Translation]

Monsignor Blanchet: I would like to add another point to that response. For comparison purposes, it is interesting to consider, for instance, the United Nation's Charter of Rights. If people had tried to reach an agreement on the various concepts of the human being which underly these rights, I think that they would never have succeeded. Moreover, everyone brings their own perspective, their own anthropology, if I can put it that way, and yet they did arrive at specific points that, on the whole, respect the underlying visions of a human being.

Obviously, in a pluralistic society, we have to present legislation that will be acceptable to the majority of the population. If a bill were passed despite provisions that are unacceptable to a portion of the public, that law could never be enforced, of course.

Moreover, in terms of spiritualization, what does the Gospel do? To my mind, it seeks to humanize life, to humanize human beings. Saint Irenaeus once said that the glory of God is the living human being. Therefore, all we're asking is that whatever affects human reproduction be properly human. In this regard, there is a cultural dimension, a symbolic dimension that expresses itself differently according to religious creeds, but is still important to maintain.

[English]

Dr. Read: I think I might just add to that. Perhaps why I was a little stuck for words at first is that it seems to me what largely I find admirable in this piece of legislation, in the preamble, is that it is not trying to treat this merely as a technical or a financial issue, that it emanates from a deep sense of what it is to be human and what it is for us to live in relationship, in community, together. So I see it as deeply morally centered in just the way the other people have said.

The other note I might say is that I had some discussion with colleagues about the extent to which we could come clean or something and state what, from my standpoint, is the deep conviction myself of the grounding of, for instance, the dignity of human life, and that is grounded in the theological way.

I take it as a great privilege that we're able to speak from that spiritual and theological centre without thinking that's taboo, but I'd understand the responsibility of legislators to be able to see where there's a kind of intersection of these moral views, which I truly believe there is.

Mr. Ken Epp: Now I'll can give you the reason for my trick question. I believe profoundly that the moral and the spiritual part of us is as important as the physical. That's why I just gave you a platform to express what I believe in profoundly.

How much time do I have?

The Chair: None.

Mr. Ken Epp: Okay, I'll defer.

The Chair: Mrs. Parrish.

Mrs. Carolyn Parrish: I would like to thank Dr. Rozell Scorsone for a very articulate, very snappy presentation. I want to take you home with me. You can clarify a lot of the reports I'm writing right now. I would also like to thank you for the years you've put into the commission.

I think people like you are what made something that's acceptable to all of you and I think the three of you, with Mr. Epp's prompting, really portrayed the difficulty we have in this legislative body, which is not only to have the science that works but also to have morals and a good reflection of the Canadian public. It's a relief to me because the first couple of groups we had were pure scientists and they were just like - anything goes.

There was one gentleman from a hospital in Quebec, a monsignor. I kept trying to press him by asking whether they had any priests on their board of directors because they just thought everything was terrific, and he said no. The thought of taking a 16-day zygote - you did everything you could with it and then you just stick your thumb on it and squash it; that really offended me.

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Regardless of all that, because my own personal morals shouldn't come into this, I think what you've pointed out is how important it is for us, in legislation, to reflect what people want. The parents who were here earlier, the scientists to a certain extent, your input, all of it has been quite an experience. But the bottom line is that it's nice to end off with people like this, because it answers the question the rest gave us: whose values are we reflecting? I think we're reflecting your values and I thank you very much.

The Chair: Thank you very much, Mrs. Parrish.

Anyone else? Mr. Volpe.

[Translation]

Mr. Joseph Volpe (Eglinton - Lawrence, Lib.): Thank you for your presentation, Monsignor. Ms Picard has already asked all the questions I had. I would therefore like to make a comment and perhaps you could comment in response.

[English]

Given some of the reservations all of you have raised, because you have raised some reservations with respect to the legislation, you've gone so far as, Madam, to be very specific. If the committee were not able to address all of your issues, is your final recommendation that we proceed with the legislation?

A voice: Yes, everything you can.

Archbishop Blanchet: As for myself, I would strongly recommend that you proceed.

[Translation]

Monsignor Blanchet: Personally, if I had to choose one recommendation as a priority among all the ones I made, it would be the one concerning the freezing of embryos. Once again, I raise the fact that I had the opportunity to attend a symposium on bioethics at the Council of Europe. After lengthy discussions that lasted over three days, we arrived at a kind of consensus that could be summarized as follows: we must find techniques that would stimulate women much less to produce ova, to produce fewer embryos so that fewer need to be implanted and therefore none have to be frozen and destroyed. There really is consensus about that. If I had one wish, it would be that by restricting some of these practices in law, we would encourage better research so that things can be done in a way that is less harmful to embryos and women.

[English]

Dr. Read: For us, I believe this would be an admirable piece of legislation to have even if there could not be the changes we might think good. What I wanted to say when I ran out of time is that it would also be our view that this is one piece in a larger picture. We do look forward to those other kinds of regulatory mechanisms in the area in which there are technologies that would be permissible. Those need to be guided by a similar kind of humane concern, as I say.

Ms Jeffs: I wonder if I might comment. Subclause 7(3) is of particular concern to us too, where it says ``No person shall use a zygote or embryo for the purpose of research''. Our recommendation was that ``purpose of research'' be pulled totally out of there.

When we are dealing with consent, right back from the Nuremberg Code now, across the world - the horrors of those times have made us so aware of research and experimentation on human beings. We're very concerned about subclause 7(3), which says ``for the purpose of research or implantation in a woman unless the donors of the ovum and sperm that produced it have consented to its use for that purpose''.

How do they consent to experimentation on a human being? I'm really concerned with that. How do we serve justice and beneficence by not protecting that very early human life? So our recommendation would be to amend it by removing ``purpose of research'' from there.

Mr. Joseph Volpe: This is an unfair question on my part, and I ask forgiveness.

Ms Jeffs: I've had my five minutes.

[Translation]

Mr. Joseph Volpe: Is there any merit in the position that the scientific community has presented on many occasions, and will undoubtedly present again, to the effect that there are occasions when it is justified to experiment on humans?

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[English]

Dr. Rozell Scorsone: I think there are many other ways of dealing with the valid scientific questions that are raised. For example, if you are looking at muscular dystrophy, you can proliferate muscle cells. If you're looking at cystic fibrosis, you can work with cells from the lungs. You can proliferate these living cells in the lab and you can do a great deal with that. You're not replicating the entire human genome.

I was most disturbed when I heard people saying that the cloning of human beings, making a human Dolly, would be okay. I have no problem with sheep, frankly, but I have a real problem with human beings. I heard people on television saying we need to do this because we will be able to find cures for diseases. I can't think of any purpose. I think rather people who want to do these things for their own research purposes use this as a way of getting people not to stop them, if that makes any sense. They hold up these wonderful end points but they don't tell you how this would actually help you get there.

You can work with cell lines, you can work with proliferated tissues, you can work with animal models. There could conceivably be at some point something you might possibly not learn by not cloning human beings. There are lots of things we could learn by doing double blind experimentation on human beings like we do with rats and sacrifice them. We do that with sheep, we do it even with monkeys, but we don't do it with humans. And we know there are certain things we will never know, because the end does not justify the means. This is one of those cases.

When you're talking about the complete human genome, which means a human individual, even at a very rudimentary level, you're talking about an individual human. If we're going to treat it with respect, if we are going to deal with this as a human entity, then we can't just say we will agonize and say appropriate dignified things over it and then do whatever we want. We have to say certain things are possible and certain other things we simply will not do. If we work at it, we can find other ways of doing it. I don't think there is anything they will be truly unable to find out about some other way.

Mr. Joseph Volpe: So the answer to my question is no.

The Chair: Thank you all very much. Like Mrs. Parrish, my colleague, I too am very pleased to end off this session today. It has been a long day. It was a fine group with a sense of humour.

Mr. Epp, I'm sorry I didn't recognize you when you came in. You came in in the middle of a very interesting discussion.

Mr. Ken Epp: I'm just a little guy. I sneak in and no one ever notices me.

The Chair: That's right; he sneaks in and sneaks out.

Thank you all very much. We really appreciate it.

This meeting is adjourned.

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