HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Tuesday, November 20, 2001

• 1106

[English]

The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good morning, ladies and gentlemen. I'd like to call this meeting to order.

We have two items of committee business before we get into our main study. The first one is the fact that Mr. Merrifield has just given me a notice of motion, which we will deal with at the Thursday meeting, because we have to have 48 hours. By then you should all have a copy of it.

Are you faxing it, Rob?

Mr. Rob Merrifield (Yellowhead, Canadian Alliance): I don't think we can.

The Chair: Or e-mail it, or something.

There will be a motion arriving in your offices from Mr. Merrifield, but the gist of it is that the committee hold meetings—he has this plural—to consider and report on the supplementary estimates; that the committee invite the minister and senior officials to appear before the committee no later than December 1; and that the committee consider and report recommendations on the supplementary estimates no later than three sitting days prior to the final allotted day in the current supply period.

What is that final date?

The Clerk of the Committee: I believe it is March 23.

The Chair: Okay, so we could do the part III when we come back after Christmas. That date is in March. Anyway, you'll be asked to consider, debate, and vote on this as the first item of business on Thursday.

The Clerk: Yes, it's March 23, because the last week of March we recess.

The Chair: Thank you.

The second item of committee business is a budget that the clerk predicts will carry us through until the end of the fiscal year. It will include the witnesses we're having now and those we'll be having in February and March. It also includes the cost of the printing of our report, which I'm hoping we'll have finished before Christmas.

I will accept a motion to approve this budget, and then I can take it to the—

[Translation]

Mr. Réal Ménard (Hochelaga—Maisonneuve, BQ): May we ask a question?

[English]

The Chair: Yes, go ahead, Mr. Ménard.

[Translation]

Mr. Réal Ménard: Is that a budget that will lead us to travel across Canada? Is this a budget that will enable us to travel? No? It's just to pay the witnesses.

[English]

The Clerk: No.

The Chair: If we were going to travel, we'd have to have a separate budget approved.

[Translation]

Mr. Réal Ménard: I understand that the idea of going to the major cities will ultimately not be realized. Instead we're going to proceed by video conferences.

[English]

The Chair: The plan to go to the major cities was rejected by the people who control the purse strings, so we're trying to recruit a few of those witnesses. Well, we're not trying to—they're insisting on coming. That is why we have this meeting scheduled for Monday, to try to accommodate some of them, the ones we missed because we didn't travel.

If we were going to travel in the new year on the GMO issue, we would have to submit a travel budget. This is a stay-at-home budget.

[Translation]

Mr. Réal Ménard: I move it.

[English]

The Chair: You move the motion?

[Translation]

Mr. Réal Ménard: Yes.

[English]

The Chair: Mr. Ménard moves that this budget be approved. Does anyone wish to speak to it?

Do you need a seconder?

The Clerk: No.

(Motion agreed to)

The Chair: Thank you, and thank you to our witnesses for being patient with us while we did the two things we had to do this morning.

It's my pleasure this morning to welcome several witnesses from four institutions: two from McMaster—one from the university and one from the medical centre; someone from the Infertility Network; and someone from the Infertility Connection.

• 1110

Has Mr. Collins' brief arrived, translated, I wonder.

The Clerk: Yes.

The Chair: It did. All right, we'll follow the order on the paper then, ladies and gentlemen. We'll start with Dr. John Collins.

Dr. John Collins (Professor Emeritus (McMaster) and Adjunct Professor (Dalhousie), Departments of Obstetrics and Gynaecology, McMaster and Dalhousie Universities): Thank you.

The Chair: Go ahead.

Dr. John Collins: I am actually retired from McMaster University. I am a long-time obstetrician-gynecologist who specialized in reproductive medicine. The last IVF procedure that I did was in June 1998, and I remember it very well. So does the patient, I'm sure.

Research on outcomes, including costs, has been my area of extra-clinical work and that's what I have been publishing on in the last few years. Most of that has been Canadian, of course, but during the last several years I have also been involved with the American Society for Reproductive Medicine as a consultant to their practice committee, and the European Society for Human Reproduction and Embryology as a consultant to their annual guidelines, and also as an editor on those annual guidelines.

During the last few years I've also worked at WHO for six months in the reproductive epidemiology department, and last winter I was lucky enough to spend six months at the Free University of Brussels teaching a course in medical care research methods.

I'm not sure that these are sufficient credentials to speak about international guidelines. I'm not sure that anyone has made a formal study of this area.

What I'd like to do, if it's all right with the committee, is to provide you with a little bit of background first to put Canada into an international perspective with respect to the effectiveness, the availability of IVF, and the cost of IVF, and then perhaps go into guidelines. Is that satisfactory?

The Chair: Fine.

Dr. John Collins: First, on how Canada rates, Canada, beginning with the background page here, on page 2, is one of 45 WHO member states where IVF is reported to be available. And those 45 states comprise 24% of the WHO member states, so about one quarter of the states report on doing IVF. They account for almost 80% of the world's population but they account for over 90% of the world's gross domestic product. So it is obviously something that is done in countries that are reasonably well off.

Among health indicators that are also published, and this comes from the WHO report of 2001, the only one of those health indicators—infant mortality, fertility rate, health budget as a percentage of the GDP, and the public sector portion of that health budget—that is significantly different in the IVF-reporting countries from the other countries is infant mortality rate. And infant mortality is, as probably everyone here knows better than I do, a good indicator of a country's organization of health services. Better health services mean lower infant mortality, and the IVF countries have lower infant mortality.

The next section talks about those 45 countries. And it tries to give you a picture of IVF availability, first, in the number of IVF centres in the country, and second, in the number of IVF cycles—IVF and ICSI together here. There are more IVF and ICSI centres in countries with higher-quality national health programs—that is, those that have a lower infant mortality rate. So that is one of the key issues.

An issue I'd like to spend a little bit more time on is the next one, the number of IVF and ICSI cycles. Approximately 30% of the variability in the number of cycles that are provided in a country is related to public spending on health. So the more public spending there is in the nation's overall health spending, the more IVF and ICSI cycles there are available in that country.

• 1115

The European Society—and it's called ESHRE for short, so if you don't mind I'll just say ESHRE—estimates that a minimum of 1,500 IVF and ICSI cycles would be needed per million population per annum to meet the needs of the people with infertility in that country. In the 45 countries that we've just mentioned, the average is 350, not 1,500. Twenty-two countries had fewer than 150 cycles. Canada and the U.S. are in that group. Only nine countries had more than 750, and only one country, Israel, had more than 1,500.

So the availability of IVF in any part of the world is not up to what might be needed, and Canada and the United States fall well behind many countries in western Europe.

As to effectiveness, we know from the press releases of the Canadian Fertility and Andrology Society on IVF in Canada that there have been over 4,000 IVF cycles, probably on average about 5,000 to 6,000 IVF cycles per annum in 1999 and 2000. The most important way of measuring effectiveness is the live birth rate per cycle initiated, and in Canada that is approximately 20% to 21%, in both 1999 and 2000.

A little table at the bottom of page 3 shows you how Canada compares with the United States. If you look to the right-hand side of that table, you can see from 1998 through 2000 that the United States is around 30%, the United Kingdom is around 20%, and I just told you that Canada is also around 20%.

One good reason why the United States seems to have a much higher live birth rate per cycle is that they are more liberal in their approach to the transfer of embryos. By transferring more embryos you have a greater chance of pregnancy, but you also have a greater chance of multiple pregnancy. In the United States, the high order—triplets and higher—multiple pregnancy rate is 6% in the last year that we know about, 1998, whereas in the United Kingdom it was just over 2%, and in Canada it's 3.6%. So that's one of the reasons why Canada does not seem to have the same effectiveness as the United States. Canadian physicians and clinics appear to be more conservative in their transfer policies.

The costs of IVF and ICSI in Canada—and I think I'll go quickly through this, because I would like to spend more time on the important part to come—are more like European costs than American costs. It's about $7,000 per cycle per year in Canadian terms, and that works out to about $4,600 in American. So that background shows that Canada is more similar to the Europeans in their clinical approaches and their costs than to the United States, but similar to the United States in the availability of IVF to the population.

So what about regulation? Not many of those 45 countries that report on doing IVF have reported formally with respect to what regulation is available. Most of the information about regulation comes to us, as observers in other countries, in the form of tick-off surveys that have been done and published. So a lot in-depth material is not available, although we do have in-depth material from a couple of countries, from Australia and the U.K., and I'm sure that has been made available to the standing committee.

I thought I'd just answer some questions. Which countries have regulations on reproductive technologies? There are 11 countries; you can see the list of those 11 countries there. And outstanding among those, from our point of view, are Australia, the United Kingdom, and the Netherlands in terms of how the regulations work. They have legislation. And one of the countries with legislation, Germany, does not have a national register.

In other countries there is a national register of IVF and ICSI data but no legislation. The other ten countries there do have a national register, as do a further nine countries. So there is a total of 19 countries that have a national registry of IVF and ICSI data. But 23 countries altogether have some type of regulation that we can understand. Most of those countries are North American, European, and Australian, but are not in eastern Europe and not in Asia.

• 1120

So the second question is, who regulates reproductive technologies? You can see that there are ten countries in which the regulation is done directly by a government body, usually the national ministry of health. The best example there is the United Kingdom, where the Human Fertilization and Embryology Authority has a very detailed and comprehensive body of responsibility and accountability.

That's regulations. With respect to licensing, it's either the national ministry of health—and there are seven countries where that is done—or a medical college. Four countries have a medical college. In Belgium, for example, the ministry of health appointed a medical college, which is composed mainly of people involved in IVF who are now the regulators for IVF.

What is regulated? This is not an easy thing to do. Since this was prepared, another report has come out from the American Society for Reproductive Medicine with further information from what I have given you here on nuclear transfer.

I'll go to the beginning, on page 6, section 3, to what is regulated.

First is inspection. In eight countries there are inspections either by peers, IVF people, or by government inspectors. Standards of care: this is mainly in the U.K., but Australia also regulates standards of care. Eligibility for IVF and ICSI cycles is regulated in some countries. Treatment is not available, for example, to single women in four countries in Europe. The number of embryos transferred is regulated in the United Kingdom—three is the maximum there—and in the Netherlands. In Belgium, for example, there is no regulation, but by peer pressure the number of embryos transferred is pretty close to, almost uniformly, two embryos now.

Donor insemination also comes under regulations in some countries. And as I just mentioned, nuclear cytoplasmic transfers are outlawed in most of the countries that have brought some thought to bear on the issue.

Finally, I would like to say something about regulation and reimbursement. There's a link in most countries between regulation and reimbursement: the stick, if you like, is regulation, and the carrot is reimbursement. Seventeen countries have some degree of regulation and public funding for a majority of IVF and ICSI treatments. Nineteen countries have no regulations and no funding—these are of the 45 IVF countries; six countries have regulations but no funding; and three countries have no regulations but they do fund. One of these countries is China, where they only have one cycle per million per annum, so it's not very effective. And in Finland I think the lack of legislation is just a matter of timing; I think it will come.

I don't know whether I have another minute to say something about the unexpected effects of regulation. Reproductive emigration or reproductive tourism is something that has happened. There are older women, for example, going to Dr. Antinori in Rome or to Rick Paulsen in Los Angeles for embryo donation or egg donation.

What was quite clear in Brussels last year was that the regulations in Germany have had an unexpected effect, because women in Germany go to other countries in order to be able to choose the number of embryos they wished to have returned. German regulations say that every single embryo must be replaced in the uterus, so in order to avoid excess embryos having to be replaced, German IVF people have to refrain from trying to fertilize more than one or two or three embryos. But they may not be lucky enough to get one out of three, or two out of three, or three out of three. So women go elsewhere. Also, because they must replace embryos, they cannot do a diagnostic test on an embryo in order to get pre-implantation guidance as to whether that's a healthy embryo. So they have to go to Brussels, for example, to have that done. That's one example.

• 1125

The other unexpected example of the effects of regulations is relatively minor, but still affects us as we think about what is the current information. You can only get 1998 information from the United States now, in the fall of 2001, and 1998 information in the fall of 2001 from the U.K. And a couple of other countries are also slow, including Denmark.

Just to summarize what I've said about international regulations, the majority of western countries have some type of regulation governing reproductive technology. It's interesting that no single regulation seems to be common to all countries. Each country chooses from the range of many regulations that might be applied. And while it is possible that cloning an embryo development beyond 14 days may be banned in all countries, it was impossible to find any evidence of that. Finally, 36 of 45 countries link regulation and reimbursement for reproductive technology treatments.

Thank you very much for the opportunity to speak to the committee.

The Chair: Thank you, Dr. Collins.

We'll go on to Valerie Fines, a social worker at the fertility clinic at McMaster Medical Centre.

Ms. Valerie Fines (Social Worker, Fertility Clinic, McMaster University Medical Centre): I would like to thank the committee for inviting me to speak today on informed consent.

I've been a social worker in a hospital-based fertility clinic for the past seven years. This clinic has always had a multi-disciplinary focus, and supportive counselling by a social worker has been a valued dimension to patient treatment. As you know, social workers as an integral part of fertility clinics are a rare breed.

I've had the opportunity to speak at a national conference on donor conception, facilitated round tables at professional meetings on various psycho-social aspects of assisted human reproduction, consulted with Health Canada and the advisory committee, and had discussions with fellow international professionals. Most importantly, I've had the privilege to work with patients planning IVF treatments, donor conception, and sperm donors—all of which have helped me form my view on informed consent.

To prepare for today I've consulted with other professionals in the field, reviewed the research in this area, and provide my professional comments. I will confine my comments to the psychological aspect of informed consent, as this is my expertise.

Assisted human reproduction is complex, both medically and psychologically. These are important and basic tenets when considering the requirements of informed consent. I've been following much of the discussion made available, and this premise has been addressed at length. However, if these tenets are accepted, it means a massive change in the way we work in the fertility field. It means taking a different, more encompassing, and long-range view of our responsibility to ensure all individual needs are respected.

In many ways the psychological considerations have been ignored, or even in the multi-disciplinary setting seen as a small part of the work with couples. The real point is that all professionals involved must agree that both the medical and the psychological components are part of an informed consent. No one individual is able to provide all the education, and a trained fertility counsellor addresses the psychological part. Dr. Laura Shanner and Dr. Françoise Baylis have spoken eloquently on this topic recently—views I support and will expand on.

There's not one checklist or set of information that addresses all the psychological aspects of assisted human reproduction. Each treatment modality—IVF, third party conception, or donor gametes—is unique and has different psychological topics to discuss and understand. For the purpose of this presentation, individual means couple, not just the recipient of treatments or the gamete donor. The medical and psychological counselling must include both partners. In fact, no treatment should proceed unless both partners are ready and have signed an informed consent.

The big question for patients is, what am I getting into? Individuals must understand and be aware of the situation they face in every respect. Previous life experiences can impact on the woman's ability to cope physically and psychologically with the treatment plan. Many of the investigations and treatments for women are invasive and painful. They may be traumatizing and leave a woman feeling very vulnerable if she is not well prepared.

One researcher found evidence, although mild, of post-traumatic stress in women who underwent IVF treatment. Preparation and validation of the components of treatment is a very large part of being informed. I believe we must look further than the medical model. This model falls far short of advising and preparing individuals for the potential lifelong implications of their decision.

• 1130

Obviously, assisted human reproduction is about family-building. Whether the individual is involved with a clinic in an IVF program, third party conceptioners, or gamete donors, there are possible psychological implications. Conception is the end of the relationship for individuals with a fertility specialist, but is not the end. No one has amnesia. It is wrong to let individuals proceed with treatment without exploring the impact of infertility on them—personally and as a couple—and how that may impact on the relationship with their offspring at various points in their life. This is the time to review the individual's capacity to make a free and voluntary consent.

Another question for patients is what is the science involved. I'll start with a rather obvious statement. What is ordinary for the fertility team is extraordinary for the individual. The science of reproduction is changing at such a speed that regular people cannot keep up. The choices and options presented can be quite taxing to understand. What is possible scientifically is not always good science psychologically. For instance, it might seem like good science to offer IVF treatment with donor sperm backup, so that if the sperm quality is not appropriate on the day of the egg retrieval, the cycle is not wasted.

If the fertility specialist suggests this plan, it may seem to the individuals very appealing. However, there are very different psychological tasks in preparing to parent using a couple's gamete as opposed to using donor gametes. How can any individual make an informed decision when asked to hope for one scenario and be prepared for another?

Individuals consenting to treatment are in a vulnerable position. Conceiving offspring is everyone's goal; however, the psychological aspects cannot be lost in the science. Please, do not get me wrong. I know lots of happy families whose children have been conceived through third party conception. The point is they were informed and were prepared for the psychological aspects before family-building started.

Understanding the ethical and religious beliefs is important for an informed consent. We live in a multicultural society. At times, the individual's quest for a child puts them at odds with their beliefs. Without the benefit of supportive counselling, a decision may be made that is difficult to live with.

What does this mean personally? All assisted human reproduction is bigger than the individual consenting to treatment. A third voice, which is present only in the mind, also needs their rights protected. I'm talking about the offspring—but more about this in a moment.

Informed consent is not about one discussion and let's go. We need to provide education and supportive counselling to individuals over time and as their situation changes and evolves. Understanding what a particular treatment means to the individual means how the decision is going to affect the individual, the couple, the family relationships, and the relationships with offspring.

Many couples describe infertility as a crisis. For many it is the first crisis in their marriage. It changes everything. Women and men do things differently. We cope differently. We think differently. Often in my practice men have said to me, “I just want my partner to be happy; I'll do whatever she wants.” If we did not explore the potential implications of the treatment plan, he could be starting his parental role with his fingers crossed and absolutely no idea what he's getting into.

I had a couple come to see me who were planning to have another baby through donor insemination. The male partner told a story I will never forget, and I'll briefly tell you here. When their first baby was born, he said he was very surprised that he found himself standing against the walls of the delivery room door. He was surprised because he and his wife had talked extensively and read about donor insemination and felt well prepared and excited. He found himself wondering if he was standing there because the baby was conceived through donor insemination. Well, the real reason he was standing there was because the delivery had become complicated, and he needed to be out of the way. But at the time he was unable to understand the delivery situation. He felt guilty that he was thinking about himself and not his partner and his baby. Fortunately, they were able to talk about this, and he realized that this did not make him less than a loving father.

I tell you this because an informed consent requires discussion of the potential lifelong implications. For everyone they're different, but they're unpredictable. As stated earlier, there's a different set of implications for each. For IVF patients the procedure is complicated and often painful, and the implications are more with managing the invasive nature of the treatment than the psychological issues. However, as science changes, that is not entirely true.

Patients using donor gametes have generally less invasive treatment and a more complicated psycho-social situation. The balance in the relationship may change. It is what I call the power issues. Does the genetic parent have more say in decisions with offspring? What does one do if feeling vulnerable and left out? How and when do parents disclose information to offspring about their conception? What is the implication of maintaining a family secret on the relationship?

• 1135

In my professional experience, more harm is done with lies than honesty. How do parents answer offspring's questions when information is so limited? Offspring have their own set of concerns, and their questions change with each development and stage throughout their life.

Gamete donors have a different set of implications to consider. Does the donor have children already? What is the motivation to be a gamete donor? What is the donor's life plan, and where do children fit? Sometimes gamete donors regret their decision, and other times they want to know whether children exist from their gametes.

What if they have fertility difficulties in the future? Are gamete donors prepared to be identified in the future and accept a lifelong responsibility to provide health information? Particular care must be taken when ovum or embryos are shared to reduce the cost of treatment. Is this a coercive practice? Individuals cannot adopt a child without a home study, but they're able to become parents through embryo donation with little or no preparation.

Informed consent means exploring all these issues and more. The individual must have a sense of what they're getting into. The question still remains, do patients know what they're consenting to? Too often the health care team moves faster than the individual who's consenting. I do not think one discussion is enough. Individuals must have the opportunity to privately reflect and review information prior to signing informed consent.

I have four very brief points in conclusion. First, the medical premise of informed consent does not fit with the human aspects of assisted human reproduction. Second, part of an informed consent speaks to lifelong issues. Third, sometimes after counselling individuals choose not to proceed with either treatment or gamete donation, and that is acceptable. And fourth, it is absolutely essential individuals understand their options and what they mean. I thank you.

The Chair: Thank you, Ms. Fines.

Next, Ms. Allen.

Ms. Diane Allen (Executive Director, The Infertility Network (Toronto, Ontario)): Thank you very much for asking me to speak to you today on behalf of the Infertility Network.

We are a registered charity and are totally independent of any clinic, doctor, pharmaceutical, professional, or community organization, although we try to work cooperatively with all of them. Our members and our board of directors include representation from across Canada: patients, families, offspring, and professionals.

Many of our board members have a personal connection with infertility. None is employed in the field on a fee-for-service basis, and neither our board members nor our organization has anything to gain financially from any legislation passed. Our goal has always been to provide the information and support people need to make informed choices about their lives.

We are here before you simply out of concern for patients and for the children they hope to have. We have a unique perspective to offer because of our extensive experience over the past 11 years working at the grassroots level. During that time, we have organized 65 educational seminars and more than 150 support groups. We've provided information kits, audio and video tape seminars, newsletters, and telephone support and referral to thousands of people.

We've consulted on several occasions with Health Canada regarding the need for legislation and regulation and have developed an extensive network of contacts with other support groups, professionals, agencies, etc., in both Canada and abroad. All of this has been accomplished by the goodwill and intentions of a handful of committed volunteers operating on a shoestring budget.

We've never been able to secure government funding nor much in the way of financial contributions from the medical community—just $800 in 1999 and slightly more in the last two years. We've come under pressure from some quarters because of our support for legislation and regulation and for reform of the donor system. Unfortunately, this chronic lack of funds severely limits the help we are able to offer people, and much remains to be done—or is not done—in the thorough and timely way we would prefer, which is exactly why the presentation I am making here today is not nearly as complete or as well organized as I would have liked.

Fortunately, though, you have had the chance to hear from many experts and individuals whose opinions we value and who have spoken to you about why sperm and egg donors must be identifiable, as well as recruited on an altruistic basis instead of under the current system of anonymous, paid donors; and why it would not be acceptable to have parallel systems—one anonymous, the other identifiable—thereby creating two classes of people: those who have access to their genetic origins and the others who do not.

• 1140

They have given you very good reasons why surrogacy should be banned and why human eggs, sperm, and embryos should not be bought and sold. They have talked to you about the need for counselling and informed consent, along with many other crucial and sometimes contentious issues.

I have brought you a copy of the video and the detailed report from the first-ever international conference of donor offspring. This was arranged by our organization in August 2000. I am sure you will find the personal stories fascinating and deeply moving. I hope you will give serious consideration to the recommendations put forth by the offspring.

More than anything, we need to honour the direct, lived experience of those who are conceived through assisted human reproduction and make sure the system works for them. Where there is a real or possible conflict of interest, it is essential that the adult interests are not allowed to take precedence over the needs and rights of the child.

Just yesterday I spoke to a former patient about the seven long years she has spent trying to find out the reference number for the donor of her daughter, now nine. It took hiring a lawyer and filing a complaint with the College of Physicians and Surgeons to force her doctor to release that reference number. She has now been able to contact the sperm bank and get at least basic non-identifying information on the donor's medical and social background that had previously been denied her.

The doctor had said he could not give out the reference number because of the sperm bank's policy; however, this was not true. In fact, this particular sperm bank has been willing to pass on information and even to facilitate contact with donors for offspring who have requested it.

Payment for donors—who should more properly be called vendors, or at the very least providers, since they are selling, not giving—is deeply troubling to many offspring, for they feel it devalues human life: their lives. One of them, Suzanne Ariel, has written:

How do I reconcile my sense of integrity with knowing that my father sold what was the essence of my life for $25 to a total stranger and then walked away without a second look back? What kind of a man sells himself and his child so cheaply, and so easily?

Infertility is a deeply personal, painful issue, estimated to affect one in six Canadian couples of childbearing age, causing them to have difficulty conceiving or carrying a pregnancy to term. But it is essential that we recognize what we are talking about is much more than medical technology; it is first and foremost about building families.

Any socially responsible legislation must accomplish a number of things. It must establish the best interests of the child as paramount. I use the word child for lack of a better term, for it really is inadequate and infantilizing. When you consider that the baby people yearn for today will be an adult before long, and that the decisions being made by others—the would-be parents, doctors, counsellors, etc.—will affect the life of that child the most and for the longest time, and yet that child is not able to give consent to any of those decisions, it is essential to note that the interests of those other parties, including the parents, are separate from, and may in fact conflict with, those of the child.

Legislation must validate infertility as a medical condition deserving of appropriate medical care, as does any other medical condition. It must ensure access for all Canadians to appropriate and consistent medical care funded by medicare in all provinces and territories. Canada must also develop a national policy on the prevention of infertility.

Canadians want and believe they have equal access to health care, but they're in for a rude shock if they find they are unable to have children in the natural way. Much of the treatment is not covered under medicare, and private insurance usually excludes fertility drugs, or severely limits the amounts reimbursed.

• 1145

Ontario is the only province to fund any IVF, and it only covers it for women when both Fallopian tubes are blocked, and even then for only three cycles. This means that all other patients have to pay between $6,000 and $15,000 for each treatment cycle out of their own pockets.

We say we don't want two-tiered health care in Canada, but clearly we already have it. Only people with a lot of disposable income or access to family help can afford this. It is not at all unusual for couples to spend $40,000 or more, exhaust their savings, or take out second mortgages on their homes. By contrast, in many other developed countries infertility is covered by health insurance, either public, private, or a combination of both.

Naturally, people faced with such high costs want to know how to maximize their chances of success. The questions I'm asked most often are “Which clinic has the best success rate?” and “Where should I go?”. I can't answer because unlike the U.K. and the U.S., this information is not available here.

Instead, a patient must figure out what questions to ask, which is not an easy task. Then they must contact each clinic individually, pay for a consultation, take time off work, often incur travel expenses, and endure long waiting lists. They need access to statistics that are easy to interpret and have been verified independently, to ensure their accuracy and completeness.

Unfortunately, the statistics released by the Canadian Fertility and Andrology Society in October were aggregate data. This does not help patients trying to choose a clinic. Moreover, only 19 of the 24 IVF centres submitted data, and it was not verified by an independent authority.

Sometimes the only way people can afford treatment is for the woman to give up half her eggs in an egg-sharing arrangement, whereby the other couple pays the cost of treatment in return. Is this really free will? Can the donating couple really give informed consent under such pressured circumstances, when this is their only hope to have a family?

What are the implications of egg sharing for the woman, the recipient, their partners, and any children born? It decreases the donor's own chance of conceiving, and it's also a decision she may regret if she is unable to get pregnant and spends the rest of her life wondering whether someone else is raising her biological child.

If she does conceive, she realizes her child may have half-siblings they will never likely know, and she may have another biological child or even children out there somewhere.

Clinics offer egg sharing in the best interests of their patients, who would not otherwise be able to afford treatment. The solution is not simply banning this practise. Provincial medicare plans must be made to cover IVF and afford equal access to all, not just the well-off.

I'm not suggesting that Canada's health care system, already under strain, can afford to cover endless rounds of IVF. There should be explicit and transparent criteria based on factors such as the likelihood of success, the existing number of children, and the number of previous treatments, just as there should be criteria for all medical procedures, so the infertile are no longer unfairly discriminated against.

Canadians say they don't want private for-profit medicine, yet we have an increasing number of private fertility clinics. This has very serious implications, as the clinics compete with each other to attract patients, rather than collaborate and share information that would benefit everyone.

Moreover, it is common for private clinics to sell fertility medications directly to patients. This can end up costing a lot more money than if the patient shopped around for the pharmacy offering the best price. One in the Toronto area, run by a woman who was herself a patient, charges cost plus 2%, saving patients hundreds of dollars in any one IVF cycle. Yet some private clinics don't tell their patients about this option, some are reluctant to write prescriptions, and I've even heard of one saying their drugs were better than what patients could get from a pharmacy.

• 1150

There are many reasons why the royal commission recommended these technologies should be delivered only in a non-profit setting.

Legislation must ensure patients and donors are in a position to give informed consent, by requiring disclosure of the risks and success rates of any procedure proposed. Counselling must be available for anyone pursuing treatment, and mandatory for all parties involved in third-party reproduction.

Donors and surrogates must be older and preferably have had children themselves, so they are truly able to appreciate that they are contributing to someone else's life. There is something profoundly disturbing about young men and women being recruited on a cash basis, perhaps to finance their education. I get calls all the time from people wanting to know how much money they can make by selling their eggs or sperm, or becoming a surrogate.

Studies show that when the method of donor recruitment changes to an altruistic one, a different pool of donors comes forward. They are people who have had families themselves, want to help others experience the joys of parenthood, and recognize that children may well have a need to trace their origins.

Legislation must ensure national standards for psychological counselling, such as in the U.K. and Australia. We have a wide variety of people offering counselling. Some are governed by a licensing professional body and others are not. Either way, there is no training program or standards in place for counselling about infertility or donor conception, as there is for social workers in the adoption field.

The result is a wide range of skills, attitude, experience, and approaches. Some see their responsibility as supporting the patient in whatever decision they make, for example, keeping donor conception a secret from the child. Others see their role as ensuring the well-being of the future family, and so actively encourage disclosure.

By contrast, in adoption today it is recognized that secrecy is not in the best interest of the child or the family in the long term. Social workers will not approve a home study of a couple who say, as people used to years ago, it is their business and they don't plan to tell the child. Canada should follow what is being proposed in Australia, where clinics require would-be parents to give an undertaking that they will tell the child about their origins.

Doctors are the medical experts, but counsellors need to be on an equal footing on the treatment team so their judgments, based on psychosocial factors about whether or not treatment should proceed, are respected.

Legislation must establish a national regulatory body to bring together a multi-disciplinary group of experts, medical specialists, patient organizations, counsellors, ethicists, lawyers, policy analysts, the disabled, church, women's groups, etc. from across the country, to discuss, license, and regulate.

Legislation must establish and maintain information registries, surveillance systems, and research studies. These registries must be administered by the government or its agency and include mandatory clinic-by-clinic reporting of outcomes and success rates; the short-term and long-term medical and psychosocial effects on patients, children, and families; procedures and medications; and a national registry to store identifying information on donors, recipients, and offspring. It is urgent that all information currently in clinics and doctors' offices be added to this registry before these physicians retire or die, or do as a few have threatened and destroy their records.

Legislation must establish a voluntary registry for past donors and families, to increase the chance that all individuals can enjoy the rights ensured by legislation for tracing their origins. You will be interested to know that donors have come forward who want to make their information available to offspring, but there is currently no mechanism in place to enable this. We need a sibling registry to allow offspring born of donated gametes and the donor's own children to know details of their siblings and half-siblings.

• 1155

We must legally clarify the rights and responsibilities of donors and non-biological parents. We must limit the number of families created from the gametes of any one donor, with a recommended limit of five families or fewer if the donor so requests. In the past it was common for donors to have dozens of offspring, perhaps even hundreds.

When it comes to surrogacy and embryo donation, it's really hard to see how either of these are in the best interests of a child. There's no indication that they're acceptable to Canadian society, yet these practices are proliferating without any of the safeguards in place to protect the interests of the child there are in adoption. There is also a lot of money changing hands.

To those who say it is better to legalize and regulate because otherwise it will just go underground and those who have money will travel to the U.S., I answer that Canada is a sovereign nation and has the right and the responsibility to define for itself what is acceptable. Countries in Europe have done this even though travel between them is easy.

Surrogacy and embryo donation, whether altruistic or commercial, violate a child's fundamental human rights because they involve the deliberate conception of a child with the intention that he will be separated from the woman who gave birth to him in the case of surrogacy or from his genetic parents and siblings in the case of embryo donation. This contrasts with the adoption of a child, which is a compassionate response to an existing social tragedy, that is, a child without parents to care for him. In adoption, all the adults are trying to make the best of a difficult situation for the child's sake whereas in surrogacy and embryo donation they set out to create a difficult scenario for the child.

Surrogacy and embryo donation fragment parenthood into its component parts, which are normally safeguarded for the well-being of the child; this includes his sense of identity. We urge you to follow the example of other countries in which procuring a surrogate in a for-profit situation by a third party, a broker, is illegal. A contract directly between a surrogate and would-be parents is unenforceable by law and requires a case-by-case evaluation by professional counsellors to determine the well-being of the surrogate and the child she will carry. Similarly, we urge you to ban embryo donation, as many other countries have done, or at least to have it handled as a proper adoption rather than simply as a medical procedure.

I think I'll stop. Thank you very much.

The Chair: Thank you, Ms. Allen.

Now Ms. Ryll.

Ms. Irene Ryll (Support Group Coordinator, The Infertility Connection, Edmonton): Thank you very much for this opportunity to speak to the committee on the draft assisted human reproduction proposals.

I am the coordinator for the Infertility Connection of Edmonton support group and have been involved in providing peer support for the past five years. I'm also a member of Health Canada's expert working group on the safety of reproductive tissues for assisted human reproduction. However, my most important role is that of a parent to three young children conceived through sperm donation.

Most families are not comfortable speaking out publicly on many of these very personal issues—and I just wanted to share that with you, although this is not an easy decision for myself as well—because our children are very young. We're not able to ask their consent for us to be able to discuss some of this personal family story with you. However, we feel strongly about it, and I'm speaking for my husband and myself and for many others who are not able to come to speak with you on these issues. We feel strongly that our voices need to be heard. We hope our children will one day understand the importance of why we have shared this information, and we hope it will help to reform the present system into one that is more accountable to families and in particular to the children.

Sperm donation has been practised in North America for over a hundred years. It has a long history of secrecy and social stigma attached to it. Even today physicians still suggest to parents that they not tell their children the truth of their conception. That is what we were told when we asked what we should tell our child. We knew that we would be sharing this information with our child, so this advice was not helpful to us. It's taken a great deal of effort to find information and others to whom we could talk about our family and the unique issues we face.

• 1200

It is through organizations such as the Infertility Network and donor support groups such as the New Reproductive Alternatives Society that we have found a support network and a connection with others who are advocating a more responsible system of gamete donation in Canada.

I would like to share with you a few comments our children have made in regard to their donor origins. This will relate to the issue of informed consent I hope to illustrate in my presentation. We told our children about their donor origins. It is important to realize that the telling is not a one-time event. It's an ongoing story. It's our lives and their lives forever.

We give them opportunities to discuss our family story and to ask questions. Given that they are seven, six, and three years of age, our conversations haven't been numerous at this point. But they have certainly been positive, and they have given us comfort and reassurance that we're building a strong family. When we talk to our kids about their donor, we use that term to describe him: a man, a donor, who gave us his sperm to help us have a family.

Recently I asked our seven-year-old if he could tell me his story. He said, “My Dad's sperm couldn't make a baby with my mom's egg, so we used the sperm from another man who wanted to help us.” I asked him what he called the other man, and he replied, “A friend.” I said, “A friend? Why would you call him that?” He replied, “Because he helped us, and that's what friends do.” I told him that because we didn't know him and never would, we couldn't really call him a friend, and that was why we called him a donor. Then I asked him if it was okay to call him that. He said, “I know that we don't know him, but if someone was in a building, that building was burning, and someone from another floor came down and helped him, he would still be a friend, even if he didn't know him and even if he never saw him again, because he helped him. That's what friends do, they help people.”

I have to tell you, that just blew me away, and my husband as well when I told him the story. Unfortunately, he wasn't there at the moment, but my son recounted it to him afterward.

Our six-year-old daughter asks more questions about her donor specifically. She's quite an amazing child as well. We have several children's books on donor insemination we have used, and we used those in the beginning to tell the story to our children. We were reading one of them one day when she was four years old, and she asked a very profound question. We were at a page with a picture of three donors sitting on chairs. She looked at me and she said, Mommy, I have a question. Why do the sperm donors give away their sperm to make a baby? Don't they want to keep it to make children with their own wives if they have them? This is a four-year-old. I answered the question as best I could, given that we do not know why our donor chose to provide his sperm to others.

Last week I told her I was coming to Ottawa to this meeting to speak with all of you about families like ours who have used donors and about other families who want to have children. I asked her if there was something she wanted me to say. She replied that she would like to know why her donor gave away sperm to make a baby. I asked her why it was important for her to know this. She looked at me with those big brown eyes and said, well, it's important because then she would be able to tell her children, and then they could tell their children, and everybody would know.

Our children's understanding of their origins, at these young ages, is quite incredible to us. They seem to grasp so much already, so much more than many adults when you try to have these discussions with them. We're very proud of them, and we definitely feel we're on the right track.

It would be extremely helpful to have information written from your donor to help answer their questions as they grow, but unfortunately we don't have anything. Up until four years ago, we knew absolutely nothing about our donor—nothing. We were told we could have no information.

At one point we were given a blank donor-intake form when we asked about our donor's medical history. We both remember—and this was my husband and I—our physician telling us we could have our donor's medical history when we were expecting our first child. When we asked for this later on, we were told the clinic had a policy of not supplying any information on their anonymous donors. We persisted in asking and were given a few physical characteristics of our donor, such as height, weight, hair colour, and eye colour, when we became pregnant with our youngest. So we had six pieces of physical information about him.

Two years ago we wrote our physician a letter requesting non-identifying information and a medical history on our donor. That's probably the most important thing for us as parents, to have something about the medical history. We were given a few more physical characteristics and a response to a question we had as to how many other families have used this donor and how many other children were out there, because that's something else that.... Sometimes you don't think about things necessarily, but once those kids are here, you start to think about them, and they're very important. I know they're going to be important to our children. I suspect they'll be important. So I want to try to find that information for them now, while it's still there.

• 1205

I would like to clarify a statement that was made. I'm sorry, I just want to go back. I'm getting off topic here.

We were told we could not have anything further on our donor without his consent. Unfortunately, there's no process in place to facilitate this exchange, and this is probably all we'll ever know about our donor. I would like to clarify a statement made by a recent witness, Dr. Art Leader, in regard to information people can obtain from sperm banks. He stated that currently, patients can obtain a full medical genetic history by going to a sperm bank. He stated this at a meeting.

This describes the best-case scenario and it is not reflective of every situation. I think it's really important that you know across this country, depending on where you are, where you access treatment, which sperm bank you use, and the philosophy of the physicians who are running that clinic, you may get information or you may not. I think it's important you know that.

As a nurse, I question the full medical genetic history that patients can currently get from sperm banks. Under the heading of “health”, a one-word answer of “good” is not, to me, a full medical genetic history.

When I looked at the online catalogue for the month last posted for a major U.S. sperm bank that is currently supplying much of the sperm to Canadians, there were only three donors out of 28 who had a childhood picture. So that is something else that's not necessarily available on all the donors.

Right now, because of the semen detention issue in Canada, people have to apply for special access for donor semen that was processed under old standards in order to use the same donor for siblings. Depending on where the donor was recruited, if it was a private bank in a fertility clinic such as where I come from, they will get nothing. So even nine months from now, if there's legislation in place saying there should be non-identifying and medical information, those people will not be able to access that.

Medical information given by physicians and other medical staff must be clearly stated or written in a language that can be easily understood for patients. If statistics are quoted, the criteria and how they were compiled should be explained to patients.

It can be very misleading when they hear a 50% pregnancy rate or live-birth rate, because that may be for the best-case scenario as well. It's difficult sometimes when you're in that room with a physician and you're hearing all this information, you don't remember everything at that time. So it's really important to have things clear and in writing, if possible.

Counselling should be available to all people undergoing fertility procedures as it's very stressful and can bring out many issues that can be difficult for couples and individuals to overcome and resolve. Counsellors should be mental health professionals, such as social workers and psychologists, who have experience with infertility and birth origins counselling. I feel very strongly that counselling should be mandatory for all persons and their spouses if they're undergoing gamete donation or surrogacy. It should also be followed up with a second session, if possible, after the couple have had an opportunity to reflect on what this decision may mean for them. Building a family through gamete donation can be a very positive experience, and I want it to be available for people. But at the same time it can bring out many complicated issues that can be identified and explored with the couple.

Sometimes the pain of infertility is so great that it's hard to see beyond having a baby. Using donor gametes means the story really begins with the birth of the baby. Issues such as sharing donor origins with the child, when to tell, how to tell, are often very difficult for people to talk about. One partner may not want to disclose this and fear rejection from the child, while the other may feel it's important for the child to know. Secrets can be detrimental to building a healthy family and have a way of becoming known, usually in a crisis situation.

I was contacted by a woman about four years ago who was in a crisis situation because she was pregnant through donor sperm. She went through the insemination physically, but mentally she was not prepared for this. In the end, she chose to abort the pregnancy. She told me that had she had counselling prior to becoming pregnant, she would not have gone through with this. This was an educated, intelligent woman who was totally unprepared for the psychological issues that donor insemination created for her and her family.

• 1210

I was shocked and saddened by this situation, and it cemented in my mind right then and there that all patients require implications counselling when using donor gametes. For this to have happened to one person is one person too many.

Counselling by a mental health professional should also be mandatory for donors and their spouses, I believe, because this may create issues for them, especially if they have children or if they choose to have children down the road. They need to understand the implications of their donation and the moral responsibility to the children they help create. Donors should not be motivated by money. An altruistic donation is the ideal.

We have the current situation in Canada with the semen problem in which many donors have refused to have retesting done when they were contacted, and parents cannot use their donor's frozen sperm to have a sibling unless that is done. If donors received appropriate counselling at the time they became donors, and they understood what the implications were, the needs of the families and the needs of the offspring, I believe they may have understood the importance of having this done. It's a lot more than dropping off a sample at a clinic.

An accurate and honest health history is essential, along with the importance of updating information as it arises. Donors typically are healthy and young, and have not yet developed health issues or may not be aware of family health issues. Donors, and this includes parents as well, need to know what the current parentage laws are across the country. We need the provinces and territories in Canada to implement appropriate donor family-law legislation protecting, clarifying, and legitimizing everybody's roles. We need to protect families, children, and donors who are now in the 21st century. Currently, there are only two provinces and one territory in Canada that have any type of legislation. My husband and I will be meeting with the Alberta justice minister in two weeks to further discuss this issue.

Donors also need to know that children may have questions they need answered, and donors should try to answer them. They also should be agreeable to having their identity known to their offspring when they reach the age of majority. If they are not comfortable with this, then they should not become donors.

Sharing of eggs retrieved through an IVF cycle to decrease the cost of treatment is coercive, in my belief. I also think that for families and offspring who will never benefit from any changes in information sharing, it's important for the government to implement a voluntary retroactive register, as is done in other countries, for example in the state of Victoria in Australia, so there may be the hope of information sharing in the future for medical and social information. At the very least, we need to secure records that are now held in clinics and doctors' offices so that any information, however minimal, is not lost forever.

We ask that all non-identifying information on donors, including any medical history, be made available to all offspring and their families prior to any future legislation so at least they can get something on the donor.

As a last point, I would like to see the inclusion of gamete donation in Health Canada's recently announced national organ and tissue donation plan to help educate and increase awareness in regard to reproductive tissues. Health Canada is currently implementing national standards for organs and tissues for transplantation and reproductive tissues. These types of donations are obviously not of the same urgency as organs and other tissues to sustain lives, but they're still important, they do enhance, and they provide assistance to those who are in need.

We need a system of responsible gamete-donation recruitment in Canada and public awareness of it, where people, in particular those who may already know what it is like to be a parent, can come forward with the desire to help those who are unable to have children. We need to take gamete donation, in particular sperm donation, out of the closet and into the public arena as a respectable and responsible type of donation. We need to acknowledge and legitimize this type of donation as a helpful way of building families, and we also need to move toward an altruistic system of reproductive donations.

Thank you very much.

The Chair: Thank you, Ms. Ryll.

We'll begin the questioning with Preston Manning.

Mr. Preston Manning (Calgary Southwest, Canadian Alliance): I'd like to thank you all for coming. We really covered a range of things this morning, all the way from cost, which is very important, but pretty inhuman, to the very sensitive and human side, and we appreciate your willingness to share, particularly on that end.

Given what all of you have said about the need for sensitivity to the psychological aspects, the human aspects, and the interest of the children, I'd be interested in how you feel we get that into the system. How can you legislate it into the system? Can you actually legislate psychological sensitivity, for example, or achieve it by regulation? Is that in fact the way you can get the sensitivity you've talked about? Or do we have to go down a different track? Is it more a matter of accreditation and licensing of the right people? If you had sensitive people in the whole system, would that bring the sensitivity you're talking about more than trying to regulate at each stage the sensitivities you describe?

• 1215

I know it's a general question, but how do you feel we get the sensitivity to the human aspects that all of you have talked about into this regulatory system? Do you do it by the legislation—the regulation—or is there some other way you get those characteristics?

Ms. Diane Allen: I think you're going to need to do both. Physicians have really not shown any willingness around donor identifiability. They have really fought it. They have fought the idea of donors being altruistic as well. They are invited to the seminars we hold and rarely come. And it's such a good opportunity to hear about the lived experience.

I've even had one physician in particular—I'm sure there are sensitive ones, but it's the ones who aren't who call me up and yell at me—who suggested that these offspring are psychiatric cases and the parents are just trying to use their children. There's a resistance there to really understanding that what we're talking about is, as I said, building families. It's not simply medical technology.

Ms. Irene Ryll: I think both are important as well. To me, a way of getting sensitivity is being able to talk about this and increase awareness. I think what's really important, too, is recognizing that families are using these technologies, and it's not something we don't talk about.

When you mention the topic of sperm donation, people will snicker and make jokes and say, “Oh, yeah, the donors make money to go to school.” I think this is a very important way of legitimizing it and bringing it up to the same level as people who want to help others whether by giving blood or organs or bone marrow.

We need to understand what kind of donors we want. Are we wanting donors to come forward and to give them money because that's the only kind of donor we're going to get? How do we know that, if we don't try to change the mentality or improve the awareness?

Mr. Preston Manning: Okay.

Ms. Valerie Fines: Certainly education is a part of it, but I think an informed consent needs to address, within the consent the couple or those seeking treatments sign, that they have had opportunity to discuss and understand the implications of their plan. What I often find as a counsellor is that the patient is so focused on having a positive pregnancy test it is very hard for them themselves to think about the long-term effects.

If they have the support of counselling and have some of the issues addressed for them and then.... I, in my practice, give patients things to take away to read, because I am under no illusion that they're going to remember everything we talked about in an hour and a half session. I think when they come to sign their consent, it has to address that they've had the opportunity to have some education and discussion around the psychological aspects of their plan.

The Chair: Mr. Manning, I'm wondering, were you at the meeting where we investigated this subject—the different types of counselling?

Mr. Preston Manning: Yes—at least I was at one meeting. Yes.

Ms. Diane Allen: Most fertility clinics don't have counsellors on staff, and for most of the donor insemination done in Canada the patients never see a counsellor to explore the issues.

• 1220

Mr. Preston Manning: Can I just ask two more quick questions here? Have you seen an informed consent form or procedure you consider superior to all the rest—one that has the sensitivities you're talking about? Is there a model of informed consent, both for interviewing and for the actual forms you would recommend?

Ms. Valerie Fines: I know the London Health Sciences Corporation took the consent pack and reframed their donor consent to include the psychological risks and benefits as well when they said “risks and benefits”; they looked at it, and it was spelled out in the consent patients sign. That's the only one I've seen that's done it in a specific way.

Mr. Preston Manning: Okay.

Ms. Irene Ryll: I'll just mention that I have brought some packages of consent forms. I have the London Health Sciences one for you if you want to look at it after—or I'll leave it with you.

Mr. Preston Manning: Getting away from the humane to the dollar end of it—and Dr. Collins, I know you're sensitive to both sides, but I'd like to ask you a little bit about this—are there figures on what the total spending is on assisted human reproduction in Canada? A number of you have mentioned that maybe this should be included.

I think you've actually recommended it should be under medicare, but you can't get anywhere close to a positive answer to that question until somebody can say what it costs. It's really not the federal government asking that so much as it will be the provinces, if it were being included under medicare.

Are there some definitive figures on what assisted human reproduction services are costing now across the country and perhaps what they should be if some of the recommendations were put forward?

Dr. John Collins: It's a very good question. The term “definitive figures” is the difficult part of the question, because there are no definitive figures. About 1997 an estimate was published for Canada in a European journal, Human Reproduction, which put the estimate for total cost of infertility treatment around $420 million. Of that, approximately $50 million was for IVF. ICSI was not in the picture at the time; it would have increased it just a little bit. The total amount of spending was estimated at that time to work out to about a dollar and a half per person in Canada, for IVF.

Mr. Preston Manning: In your brief you talk about the linkage between reproductive regulation and reimbursement. Of course in this country, as you know, if this legislation goes ahead a lot of the regulation is going to be in the federal jurisdiction and the reimbursement—if, say, medicare were expanded in a particular province to include these services—would be handled at the provincial level. How do you see in this country—given our peculiarities constitutionally—those two things meshing together? Do you see the federal government getting into the funding, or do you see the provinces being involved in the regulation, or do you see it being done in some overall way that involves them both?

Dr. John Collins: That's also a difficult question because I don't have a view of the future, but let me tell you what happened at a meeting in April in Belgium, where IVF and ICSI are only partially funded. The college was told by the ministry to try to bring together a meeting where they would talk about the number of embryos that would be transferred.

Now, as I mentioned earlier, there is no legislation in Belgium, but the number of embryos transferred is usually around two rather than three, whereas in Canada it's usually three. The meeting was about bringing the number of embryos transferred down to one, through peer pressure and some possibility of compensation from the Belgian federal government to increase the amount of funding for IVF cycles, expanding it beyond just the procedures in the hospitals to include the drugs as well.

That very direct connection between the carrot and the stick, if you like, would be ideal. Your view of what we have in Canada is far clearer than mine, but it seems to me we don't have that direct connection in Canada.

Mr. Preston Manning: Yes, okay, thanks.

The Chair: Mr. Merrifield.

• 1225

Mr. Rob Merrifield: Thank you very much.

I just wanted to get clarification on what Mr. Manning has asked in this regard. For the sake of getting it straight, are you saying that in Europe and Britain two to three embryos per person are taken for in vitro fertilization?

Dr. John Collins: I was saying that in the United Kingdom and the Netherlands a maximum of three embryos can be transferred. In Germany all embryos fertilized must be transferred. There's a big difference between those two.

Mr. Rob Merrifield: Right. It has nothing to do with the number of actual ova taken in in vitro cycles—well, in a way it does, because they can be taken but not fertilized.

Dr. John Collins: That's right. If there are excess embryos they can be frozen and used in subsequent cycles.

Mr. Rob Merrifield: Is all your data from 1998?

Dr. John Collins: All of the data for the U.K. and the United States is from 1998. Anything that I've shown you for 1999 and 2000 is projected from the last four years before 1998.

Mr. Rob Merrifield: Could you give me your best estimate of what's happened in the last three years?

Dr. John Collins: Do you mean in terms of the number of embryos allowed to be transferred?

Mr. Rob Merrifield: I mean in terms of the trends in this whole field. You've been working in this field, and there are obviously some trends. Can you give me your best estimate?

Dr. John Collins: From speaking to other members of the practice committee of the American Society for Reproductive Medicine, there probably hasn't been any downward trend in the number of triplet and higher-order births. In the United Kingdom there is a downward trend because it's part of the European Community, and the whole European community has seen a trend downward toward two and in some countries quite a few single embryo transfers.

Trying to look forward is a difficult thing, but I see improvements taking place in techniques that may allow us to have good pregnancy rates with single embryo transfers within the next two or three years.

Mr. Rob Merrifield: Thank you.

Ms. Diane Allen: May I add something on this about the cost factor?

Because people have to pay for this and because it's so expensive for them—and you're really talking about this—they want to maximize their chances for success by having more embryos transferred. But there's a cost there. Multiple births are incredibly expensive in the short term and in the long term, for the mother, for the children, long-term increased risk of disabilities—all sorts of costs.

The other cost factor you may not be considering is that people will keep doing other forms of treatment because IVF isn't funded. So a lot of people will keep doing other forms of treatment that are funded under provincial medicare but that don't have a very good chance of success for them. If they've gone through three or six cycles of insemination, the likelihood that they're going to get pregnant on the seventh, the eighth, or the fifteenth is very low. They'd do far better to go to IVF. In fact in some countries IVF is used as a diagnostic tool. So there are hidden costs; it's not only the cost of IVF itself.

Mr. Rob Merrifield: Okay. I appreciate that. It's something we have to wrestle with.

Getting into costs but in a different vein, I think it was Ms. Fines who was suggesting that we should have compulsory counselling. That's fine, I suppose. I understand some clinics do have counsellors on staff; most do not.

This leads me to the cost of counselling. Do you feel this is something that should be picked up? Who should pick those costs up? Is it part of doing business as a clinic, or should it be totally publicly funded or totally participant-user funded?

Ms. Valerie Fines: It should be publicly funded. When they have health teaching by nurses, it's a part of the cost of doing business that's publicly funded, and I think education by a counsellor should be publicly funded.

Dr. John Collins: As it is in adoption.

Let me support what Ms. Fines has said. When we worked together, her work as a counsellor was absolutely essential to the work we did as IVF people, and it was much better than we could have done had we tried to do similar work.

• 1230

Mr. Rob Merrifield: That's interesting.

It sort of twigged for me that you have said all couples should be counselled and it should be mandatory. We talked about adoption and counselling for it, and I was wondering if you refuse anyone. Are there clinics that refuse patients, as we do with adoption, for whatever reason? Perhaps their home life is not stable, perhaps their psychology...they're under some sort of distress, or for many other reasons. Can you tell me if you do refuse them?

Ms. Valerie Fines: There have been times when I would recommend to the team that a couple is not ready for treatment. If it's a psychiatric issue then I suggest we deal with the psychiatric issue. It may be something that with treatment the couple will be ready. If there are marital issues, sometimes there's a progression of counselling. I don't think it's a yes or no situation where I get to meet you one day and you don't seem to be ready, so you're done.

Life is a continuum. Just because a couple comes to us with an infertility problem and they have a plan, it doesn't mean they're at the same place psychologically. Sometimes one individual in the partnership is ready for treatment and the other one is not ready. My job as a counsellor is to help them to see that, and to ask them what kind of work will be involved for them to proceed. There will be very few times when my answer will be that it is never going to work for them and they can't do it. Very occasionally this will be so, but most people—with education and counselling, and sometimes, with time—can be treatment-ready.

If a patient had a cardiac problem, you wouldn't proceed with IVF without consulting with the cardiologist. If they have some psychological issues, you shouldn't proceed until you've dealt with the psychological issues. This is why it's not a one-discussion model where you have an hour and a half and then you're done.

Mr. Rob Merrifield: I understand this line of thinking on it. The piece of legislation we have in front of us suggests in its preamble that it's in the best interests of the child. What the best interests of the child in the counselling may be is something of concern to me.

We have parents who are all excited about the new child in their life—and sometimes they're not parents, they're singles. Perhaps there are some other double standards we have for individuals who want to adopt and we will not allow certain individuals to adopt, saying it would not be in the best interests of the child.

Do we have a double standard? And as a counsellor, do you look at this as well? Or are we merely consumed with the idea of pregnancy?

Ms. Valerie Fines: Is your question whether there are times when we should absolutely say we cannot proceed with treatment? Is that it?

As a counsellor, I don't work autonomously. I work as part of a multi-disciplinary team. If I go to the team and say I have concerns about this and this, the nursing staff and the physicians are not saying “Oh, we never saw that”. They also have concerns.

“Do no harm” is something we have to be aware of. If a couple are very compromised and unable to take on the tasks of parenting, then we do have to go back to that premise of “do no harm”. I don't think it is common, but sometimes we have to be prepared to say this.

Mr. Rob Merrifield: Thank you.

The Chair: Dr. Dromisky.

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

Some of the questions I wished to direct to Dr. Collins have already been answered. I know you're deeply immersed in this area and you have been for quite some time.

We have a two-pronged task here before the committee. We're dealing with assisted reproductive technologies and then the whole area of research. Do you have any information to give us pertaining to the number of centres involved in research? Could you share this information? You have given us some facts already pertaining to reproductive technology centres. Are there some that are doing a dual role, such as universities? Are they doing research as well as having on-campus clinics or something of that nature? Do you have any information like that you could share with us?

• 1235

Dr. John Collins: Yes, I'd be glad to share the information to the extent it's available and I've been able to access it.

There are 23 clinics currently and approximately half of those are in academic centres, which means they would be presumably directed and run by people who are interested not only in clinical care but in teaching and research.

The extent to which they are supported by research is very limited. Reproductive medicine has not been an area which has been generously supported, or maybe it hasn't earned generous support, by funding agencies, and there are no foundations, at least no large ones, that are specifically directed to reproductive medicine research.

I think the amount of funding available—and the best source for this is the CIHR website—for research that might come under the regulations if they were to come forward from the proposed legislation would be on the order of $1 million to $2 million, perhaps as high as $3 million per annum. And the amount of support—just from knowledge of my peers in the area—outside the Canadian Institutes of Health Research funding would be something on the order of less than $100,000 or $200,000.

Is that the sort of information you were looking for?

Mr. Stan Dromisky: Yes, that's good. You've given us a source already where we can get more information, and I'm hoping we'll follow through with that.

I have another question. You've been so deeply involved, as I indicated, and there's no doubt as you've gathered your data and visited different countries, meeting on a regular basis with all kinds of experts from all over the world, there have been certain observations, certain bits of knowledge, that have stirred your emotions. In other words, you don't just look at hard cold facts. You make judgments, there's no doubt about it.

And never mind the 1998 report; I'm talking about today. In light of the knowledge you possess today, can you give this committee some guidance pertaining to where we should go to look at the areas of reproductive technologies, regulations, and research? Which countries are the best, in your mind? Not the overall picture, just those three particular areas.

Dr. John Collins: Well, I just heard from my friend in Italy, and unfortunately, there's nothing to say about Italy—despite the wonders of going there. I would say the United Kingdom—HFEA—and I think Australia, although my experience in Australia predated the regulations there. I worked there in 1985.

The Netherlands, I think, is an excellent source for cooperation between ministry and IVF centres. As the man from the Netherlands said, “We have no strict rules, but everyone behaves. Social control is quite powerful if there are 16 million of you on only 150,000 square kilometres”.

And Belgium is so close. I think you can see what's happening in Belgium. It's a completely different model, which is very voluntary, yet they're achieving almost the same things. If anyone is looking at IVF for the future, what they have to be hoping is that because this is an effective treatment, it will become cheaper and reach more people. The efforts toward single-embryo transfer are some of the main areas there.

So that's about clinical care.

• 1240

About legislation, I don't know enough about the actual legislation to be able to say this is a good place to go. But I can say I have read the committee reports to the Ministry of Health in the Netherlands, and they were extremely well informed. And I've heard a lot from HFEA members and also people who work in the United Kingdom that it has been a very good overall approach, but it's become a bureaucracy that has its own delays.

I don't think I can answer your third question about research. I'm sorry.

Mr. Stan Dromisky: Thank you very, very much.

The Chair: Madame Picard.

[Translation]

Ms. Pauline Picard (Drummond, BQ): Thank you, Madam Chair.

I would like to come back to the number of transplanted embryos, Mr. Collins. I believe this is regulated provincially. I don't know whether I am mistaken, but have you nevertheless conducted studies in the provinces to determine whether the embryos that can be implanted, the number of embryos implanted in women, is regulated? Have you researched that?

[English]

Dr. John Collins: The translator used the word “provinces”, so it sounds like your question was about Canada.

[Translation]

Ms. Pauline Picard: Yes. I believe the number of embryos implanted in women for reproductive purposes is regulated provincially. So I was wondering whether, in Canada as a whole, you had done any research in the provinces to determine whether this is regulated by them? Are you aware of this regulation? For example, how many embryos are you entitled to implant in Quebec in each cycle?

[English]

Dr. John Collins: The answer to the question is not one I can give to you from the point of view of knowing about the legislation or the regulations, but from the point of view of understanding what is happening in the clinics. That appears to be very local—within the hospital, or within the community if the clinic is not part of a hospital. It evolved at McMaster years ago, just through discussion—this was when five embryos was the standard—that it would be cut down to three embryos. I think most of the centres are working on the same sort of voluntary, peer-regulated guidelines, rather than specific legislation or regulations.

[Translation]

Ms. Pauline Picard: That means that it depends on each clinic. At present, each clinic appears to have its own code of ethics and way of administering implantation, and the fate of surplus embryos cannot be known either. So it is left to the discretion of each clinic. That is what you're telling me.

[English]

Dr. John Collins: That is just what I'm saying, that it is left to the discretion of each clinic how many embryos to transfer and what happens to the excess embryos. Each of them works, for the most part, with a local microenvironment of regulation that is either the clinic, with all its staff, including counsellors, or the hospital with all of its staff, including its committees.

[Translation]

Ms. Pauline Picard: I have another question. I would like to know whether you are aware of the use of fertility drugs and of all the risks related to their use. In your view, are these treatments subject to clinical trials that are well designed and approved by Health Canada and by professional organizations? In your opinion, which body should be responsible for monitoring fertility drugs and following up their use? We know that these drugs, ovarian hyperstimulation and all infertility treatments can cause risks for the mother, for the fetus and for the children born as a result.

• 1245

Is an agency or Health Canada, through its laboratories, working on these treatments at this time? Do you know whether this is being done right now?

[English]

Dr. John Collins: That's a good question about gonadotrophin stimulation treatments. We heard a little while ago it would be better if in vitro fertilization replaced all gonadotrophin stimulation treatments, because at least you could control the number of embryos that were transferred.

The adverse events that come from gonadotrophin stimulation definitely are multiple births. Approximately 40% or more of triplets in the United States in the last year they have information for, which is 1997, came from gonadotrophin cycles that were not IVF; 40% of the triplets or more came from IVF; and the remaining 20% were natural. So gonadotrophin cycles without IVF make a big contribution to multiple births.

Another definite side effect that goes along with multiple births is a condition called ovarian hyperstimulation syndrome. A small percentage of patients can become seriously ill with that.

I'm unaware of any problems for the offspring, but there's a third problem for the mother, which has been published. The current view is there's a possibility that gonadotrophin stimulation might later cause ovarian cancer in the woman who received the stimulation. That is now being discounted quite a bit. It's not something to discard yet. The idea hasn't gone, but it seems to be due to bias rather than true association.

Ms. Diane Allen: It's also true that nobody's following those of us who've taken drugs. Nobody's following us or our children to see what the long-term outcome is.

[Translation]

Ms. Pauline Picard: Madam Chair, I have a quick question.

[English]

The Chair: One quick one—say it as quickly as you can.

[Translation]

Ms. Pauline Picard: Do you know whether certain laboratories or professional organizations are working on this right now to cure or prevent or find another way...? As you said, IVF might be one way to address this problem. Is anyone working on this?

[English]

Dr. John Collins: That's a good question. Are there any approaches being taken? The American Society for Reproductive Medicine has tried to give advice about how to control multiple births from gonadotrophin cycles. It has been unable to find any good clinical predictors from which you could make guidelines. Money for follow-up is needed.

The Chair: Thank you, Madam Picard.

Ms. Sgro.

Ms. Judy Sgro (York West, Lib.): Thank you all very much. It was again very informative, as we try to deal with a very difficult subject. All of you offered us again the realization of just how important this issue is for us to deal with.

To Diane or Irene, in particular, are you comfortable that we are at least heading in the right direction with this legislation?

Ms. Diane Allen: I will be very happy to see legislation, period. Just to exist in the void we're in is really stressful. It doesn't protect patients or their children. Although a lot of people had criticisms of Bill C-47, I would have been happy to have.... Whatever legislation we get is not going to be perfect. It's going to be an evolving thing, as medicine and society evolve. So I think it's really important to have legislation.

I'm encouraged by what I've read in the transcripts from people who've come before you to talk about the issues, in particular on offspring. They've come away feeling you've really heard them. So I'm encouraged by that.

• 1250

Ms. Irene Ryll: I would agree with Diane, as well. But something else I would hope to see in any future legislation is a really careful consultation process—and I'm sure there will be—once the legislation's been written, so we don't have another situation, as what happened with the semen issue. There was legislation on semen, and then we had this terrible situation where people were not able to access the donors who were previously recruited, and their semen was processed under the old testing. That has been horrific for people.

We need to have a process in place where we can really look at it carefully and be able to amend things if needed, instead of being stuck with what we have, if we recognize there are issues afterwards.

Ms. Judy Sgro: On the issue of the embryos and using them for research purposes, what are your thoughts on that, in the way we're heading in our legislation?

Dr. John Collins: To the extent that some degree of research is necessary to improve the success of IVF, it's a very delicate area for regulation, because there's also the other end. You don't want uncontrolled research going on, with embryos being kept for longer and longer periods. But if we didn't have some research on embryos, we would not be able to make any assessment on the best conditions for the development of embryos. We wouldn't be able to make assessments on whether it's better to have embryo transfer at day two, day three, or day five.

Until recently, they did not have the correct kind of media to keep an embryo alive for five days. At present, there is a process called in vitro maturation, which gives promise of being able to achieve that element we were talking about earlier—the ability to have carefully planned single embryo transfers, with only one not necessarily highly stimulated cycle, giving rise to all the oocytes. If you couldn't carry on that research, it would also limit the development of better techniques for IVF.

Ms. Judy Sgro: Thank you.

The Chair: I have a couple of questions. Just from what you said this morning, I'm wondering if we should put something in the law that forbids the destruction of records. Somebody mentioned a doctor who was threatening to destroy records. I see heads nodding.

What if we put in the legislation that a licensed clinic must have a full-time social worker?

Ms. Irene Ryll: That would be wonderful.

The Chair: Okay. Now I'll ask you a trickier one. You have lots of experience among you. What would you think about a ban on surrogacy altogether?

Ms. Valerie Fines: I could support that.

The Chair: Ms. Ryll.

Ms. Irene Ryll: I don't know if I agree with a ban on it altogether. On commercial surrogacy, I would say yes.

The Chair: But where no money changes hands—

Ms. Irene Ryll: Oh, definitely.

The Chair: —in the odd situation, you think it's okay.

Ms. Irene Ryll: Well, I think it needs to be carefully....

The Chair: You realize, in this surrogacy situation, we've had it described to us that there can be five adults involved before this child emerges.

Ms. Irene Ryll: Yes.

The Chair: You're talking to us about the donation from a third adult and all the complications it makes. But what about five adults?

Ms. Irene Ryll: I would not go there. If there were really good review and counselling, I think it would be acceptable if a sister carried the genetic child of her sister and her husband, if for some reason she was not able to carry a child. Do you know what I mean?

The Chair: We've had described to us that if the woman can't carry the child, sometimes it's because she doesn't have eggs or doesn't have good eggs or something—I don't understand the science of it—and her husband maybe has a low sperm count. So they get an egg donor, a sperm donor, and then a person to carry the baby. That's why I say five people.

• 1255

Ms. Irene Ryll: And I would support a situation where you had a sister who lost her uterus for whatever reason, but still had her eggs, if a sister offered to carry the child of the sister and her husband.

The Chair: Okay. What does the doctor think about the ban on surrogacy?

Dr. John Collins: Thanks for asking. Surrogacy very rarely involves doctors. The situation you just described with five would of course have to involve doctors, to get the eggs and the sperm and to provide them, but in general it's not a medical event. If you're asking for my opinion—

The Chair: That's ridiculous, because the doctors are running the fertility clinics where these people present themselves.

Dr. John Collins: Yes, but I believe—and I may be wrong—it's not ridiculous, because that's an extremely unusual type of surrogacy. Most surrogacy does not have to involve donated embryos or donated eggs or donated sperm through the clinic. It can be done outside of medical care entirely.

Ms. Diane Allen: Most of the surrogacy we're seeing done is IVF surrogacy.

The Chair: Yes, that's what we're hearing.

Dr. John Collins: Most of the surrogacy we know about is being done as IVF surrogacy.

The Chair: Well, those are the ones we're concerned about—the IVF surrogacy, which to me is definitely a medically run procedure.

Dr. John Collins: I'm not in favour of continuing that, even for non-commercial purposes, but that's just one physician's view on the matter. Other physicians would differ from it.

The Chair: I think you would be surprised how many might agree with you. I think people are afraid to say out loud what they really think about this; this is what I'm finding. People are dancing around some of the trickier areas, but somewhere inside them they're showing their lack of enthusiasm—let's put it that way—for these very complicated arrangements to create new children. People like Ms. Allen, Ms. Fines, Ms. Ryll, and another social worker we had have been quite frank about the complications for the children that result from these things—and that people aren't thinking about it.

Ms. Diane Allen: They're thinking about getting a baby—

The Chair: That's right.

Ms. Diane Allen: —and they're not thinking beyond that. I could imagine a scenario such as Irene described where it might work within a family but, boy, I'd want to see that go through some really thorough evaluation because of the coercion that can exist within families.

The Chair: That's right. That's what we heard.

Ms. Diane Allen: There can be tremendous pressure to be an egg donor, to be a surrogate. I've seen it. I don't know if anybody has referred you to any of the online bulletin boards on surrogacy, but you'll see that the conversations there, among the people who are surrogates or are looking for surrogates, etc., focus on money. They focus on how to get around any legislation that's passed, about how to.... I think Phyllis Creighton used the words “weasel word” when she appeared before you, about “compensating expenses”, about how to manage it and how to avoid getting it taxed as income by Revenue Canada. There's a lot of money there.

The Chair: We're thinking about.... Well, we haven't drawn any conclusions, because we haven't really debated this, but some of us have been talking and thinking about banning the exchange of money of any kind—for gametes or surrogacy or anything. I think we're on the same wavelength. We've leaned fairly heavily on the royal commission on the surrogacy issue, and I thought their treatment of it—I forget which chapter number it is—was excellent.

Ms. Diane Allen: The things that happen in surrogacy would never happen in adoption. They just would never happen. You could probably induce some birth mothers to give up their children for adoption by paying them, and yet we would be horrified by that as a society. Prospective adoptive parents are told: “Don't even buy the birth mother a coffee. Don't do anything that could be conceived as a financial inducement, because it can invalidate the adoption.” And yet the surrogacy is just...“scary” is the word that comes to mind.

• 1300

Ms. Irene Ryll: If there were any type of condition on surrogacy, it would have to be through a case-by-case, careful review—definitely.

The Chair: I just want to say one thing to you, because you're among many others who have come and said it should be funded. It is the one area we don't have control over. We can say what should be allowed under a licence and what can't be done in Canada—otherwise they don't get a licence—or that kind of thing, but we can't insist, I don't think.

We're still investigating this. We transfer blocks of money to the provinces and they decide how to spend it on health care. It may be we can do a framework that would make most of the knowledgeable people in the country happy, but it does not mean the result will be well-funded clinics.

We might be able to pay for something around the record-keeping that you're all saying is so needed: the data collection, the follow-up on people who have participated, and all that sort of thing. But as far as the actual practice of a clinic is concerned—the payment of the social worker's salary, for example—we can't send money for that.

Ms. Valerie Fines: I think the reason it's important that a social worker be publicly funded is that these are life-long issues. I certainly see couples who come back whom I may never have met. They met the social worker before me, nine years ago, but they have things they need to talk about. And when I try to find other counsellors in areas they live in, they don't understand the part of fertility. So I can't refer them to an EAP practice because they don't get it.

The Chair: Exactly.

Ms. Valerie Fines: I also brought for the committee a package of information we give our patients from McMaster Hospital and that I thought might be interesting for the committee.

The Chair: Thank you very much.

Thanks, everybody, for being so cooperative.

This meeting is now adjourned.