HEAL Committee Meeting

Notices of Meeting include information about the subject matter to be examined by the committee and date, time and place of the meeting, as well as a list of any witnesses scheduled to appear. The Evidence is the edited and revised transcript of what is said before a committee. The Minutes of Proceedings are the official record of the business conducted by the committee at a sitting.

For an advanced search, use Publication Search tool.

If you have any questions or comments regarding the accessibility of this publication, please contact us at accessible@parl.gc.ca.

Previous day publication Next day publication

37th PARLIAMENT, 2nd SESSION

Standing Committee on Health

EVIDENCE

CONTENTS

Wednesday, November 20, 2002

1540

The Chair (Ms. Bonnie Brown (Oakville, Lib.))

Dr. Arthur Leader (Chief, Division of Reproductive Endocrinology and Infertility, Ottawa Civic Hospital)

1545

The Chair

Ms. Cathy Ruberto (Assistant Clinical Director, Repromed Limited)

1550

1555

The Chair

Dr. Eugene Bereza (Chair, Committee on Ethics, Canadian Medical Association)

1600

1605

The Chair

Mr. Rob Merrifield (Yellowhead, Canadian Alliance)

Dr. Eugene Bereza

Mr. Rob Merrifield

Dr. Eugene Bereza

Mr. Rob Merrifield

Dr. Eugene Bereza

Mr. Rob Merrifield

1610

Dr. Eugene Bereza

Mr. Rob Merrifield

Dr. Eugene Bereza

Mr. Rob Merrifield

Dr. Eugene Bereza

Mr. Rob Merrifield

Dr. Eugene Bereza

Mr. Rob Merrifield

Ms. Cathy Ruberto

1615

Mr. Rob Merrifield

Ms. Cathy Ruberto

Mr. Rob Merrifield

Ms. Cathy Ruberto

Mr. Rob Merrifield

Ms. Cathy Ruberto

Mr. Rob Merrifield

Ms. Cathy Ruberto

Mr. Rob Merrifield

Ms. Cathy Ruberto

Mr. Rob Merrifield

The Chair

Mr. Réal Ménard (Hochelaga—Maisonneuve, BQ)

Dr. Arthur Leader

Mr. Réal Ménard

1620

Dr. Arthur Leader

Mr. Réal Ménard

Ms. Cathy Ruberto

Mr. Réal Ménard

Ms. Cathy Ruberto

1625

Mr. Réal Ménard

Dr. Eugene Bereza

Mr. Réal Ménard

The Chair

Ms. Carolyn Bennett (St. Paul's, Lib.)

1630

Ms. Cathy Ruberto

Ms. Carolyn Bennett

Ms. Cathy Ruberto

Ms. Carolyn Bennett

Dr. Arthur Leader

Ms. Carolyn Bennett

Dr. Arthur Leader

Ms. Carolyn Bennett

The Chair

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

Ms. Cathy Ruberto

1635

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

1640

Dr. Arthur Leader

The Chair

Dr. Arthur Leader

The Chair

Dr. Arthur Leader

The Chair

Dr. Arthur Leader

The Chair

Dr. Arthur Leader

1645

The Chair

Dr. Arthur Leader

The Chair

Mr. Jeannot Castonguay (Madawaska—Restigouche, Lib.)

Ms. Cathy Ruberto

Mr. Jeannot Castonguay

Dr. Arthur Leader

1650

Mr. Jeannot Castonguay

The Chair

Mr. Paul Szabo (Mississauga South, Lib.)

Dr. Arthur Leader

Mr. Paul Szabo

Dr. Arthur Leader

Mr. Paul Szabo

1655

Dr. Arthur Leader

Mr. Paul Szabo

Ms. Cathy Ruberto

1700

Dr. Arthur Leader

The Chair

Mr. James Lunney

Mr. Paul Szabo

Dr. Arthur Leader

Mr. Paul Szabo

The Chair

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

Ms. Cathy Ruberto

Mr. James Lunney

1705

The Chair

Mr. James Lunney

The Chair

Dr. Arthur Leader

The Chair

Dr. Arthur Leader

The Chair

Dr. Arthur Leader

The Chair

Dr. Arthur Leader

The Chair

Dr. Arthur Leader

Ms. Cathy Ruberto

The Chair

Ms. Cathy Ruberto

The Chair

1710

Ms. Cathy Ruberto

The Chair

Ms. Cathy Ruberto

The Chair

CANADA

Standing Committee on Health

NUMBER 003

2nd SESSION

37th PARLIAMENT

EVIDENCE

Wednesday, November 20, 2002

[Recorded by Electronic Apparatus]

¹ (1540)

[English]

The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Ladies and gentlemen, it's my pleasure to call this meeting to order.

I would like to alert my colleagues on the committee that we have one small piece of committee business to take care of at the end. Please try to stay until the end. I think we can probably do it in about five minutes.

For this afternoon, we have witnesses I would like to welcome to our premises. The first witness will be Dr. Arthur Leader of the Ottawa Civil Hospital.

Please go ahead, Dr. Leader.

Dr. Arthur Leader (Chief, Division of Reproductive Endocrinology and Infertility, Ottawa Civic Hospital): Madam Chairperson, honourable members of the committee, I am chief of reproductive medicine at the Ottawa Hospital and the University of Ottawa. For over twenty years, I've looked after infertile men and women as they struggle with the medical condition of infertility. I've done it in Toronto, northern Ontario, Calgary, and now Ottawa.

I appeared before this committee with my colleagues in October 2001 to discuss the draft bill.

I thank you, Madam Chair, for inviting me back to comment on Bill C-13.

As I read Bill C-13, I'm proud of how far Parliament has travelled from the royal commission report in 1993 to the present legislative proposal. There are a few small but important changes that are needed to get the best possible legal framework. To me, Bill C-13 has many positive features. At the same time, there are some important changes that need to be made.

First of all, the bill recognizes the benefits of assisted human conception. It recognizes that certain activities must be controlled. It protects the anonymity of sperm, egg, and embryo donors, and recognizes the need to reimburse gamete donors for expenses.

It establishes the Assisted Human Reproduction Agency, with the authority to regulate assisted human conception and related research in Canada. It also establishes the agency as a forum for the ongoing debate on these important policy matters.

On the minus side, there is no obligation in the bill to initiate a strategy to prevent infertility. There's no obligation to make infertility treatments medically necessary under the Canada Health Act. The bill, to my way of reading it, does not fully protect the privacy of individuals who use the therapies.

In particular, in clause 3, lines 9 to 15, at the beginning the words “the identity” should be removed, and the clause should be revised to read:

“'health reporting information' means information provided under this Act respecting the personal characteristics, genetic information and medical history of donors of human reproductive material and in vitro embryos...”

Identifying information should not form part of the public health reporting information. Patient privacy must be protected. There are many patients who are uncomfortable with the thought that someone other than their physician and their immediate family knows they have undergone the treatments.

Clinics, on the other hand, as part of the regulations of the agency should be required to be able to link non-identifying information, such as a patient or donor number, with the person's identity. With this minor change, clauses 14 to 18 would serve the purpose of the act and protect patient confidentiality, while giving the agency the information it needs to carry out its duty.

While it is assumed that the cost of regulating assisted conception will be borne by the agency, the significant cost of complying with the regulations will be borne by the clinics and transferred to infertile patients. The bill should state in clause 19 that an impact analysis on the cost of regulations must be calculated and subject to public review.

The bill in clauses 50 to 56 ignores the medical model of care. Sperm, egg, and embryos are owned by those who provided the gametes and are held in trust by the clinics. They are not owned by the clinics. Seizure by inspectors, as outlined in clauses 50 to 56, affects the rights of those who created and owned the reproductive cells, and not only the rights of the clinic and the staff.

Finally, other than the courts, there is no mechanism in this bill for dispute resolution among the agency, the gamete donors, and the licensee. The process surrounding the issuance, amendment, renewal, and suspension of licences is outlined in the bill, but in a just and fair society the processes for appeal should also be outlined in equal detail.

¹ (1545)

This summer Statistics Canada reported that Canadian fertility rates hit a record low of 1.52 children per woman. Migration has become the major contributor to population and economic growth in Canada. The study reported that more women in Canada in their most fertile years, which is 20 to 29, were delaying pregnancy until their early thirties. Young women are contemplating pregnancy now when a woman's natural fertility is already on the decline. This will increase the demand for infertility services in Canada in the very near future.

I would ask, Madame Chairman and honourable members of the committee, that as you reflect on Bill C-13 you keep in mind the hundreds of thousands of infertile Canadians who will live with the consequences of this bill. They look to you for compassion, support, and encouragement. These infertile Canadians could be family, friends, neighbours, or colleagues. I ask that you support those initiatives that create opportunities for your fellow Canadians to build or start families, rather than limit their choices.

Thank you very much. A copy of the text in English is on the table, Madame Chairman, if members wish that.

The Chair: Thank you, Dr. Leader.

Now, from Repromed Limited, Cathy Ruberto, assistant clinical director.

Ms. Cathy Ruberto (Assistant Clinical Director, Repromed Limited): My name is Cathy Ruberto, and I am the assistant clinical director of Repromed. Repromed is a Canadian facility that is recognized nationally and internationally as a leading facility that provides its services to a large number of sperm and egg donor recipients, both through their physicians and clinics across Canada. The services provided by Repromed and other like facilities are necessary in this country.

We and like facilities provide our services to each one of your constituencies, and I speak on behalf of your constituents who, if this bill passes as is, will no longer have access to the services that assist them in building their families. I not only speak as a director of a fertility clinic, but also as a nurse who has dedicated my career to helping those one in ten couples in their child-bearing years who, through no fault of their own, have had to resort to using assisted reproductive technologies in order to build their families, and as a Canadian woman who believes in reproductive choice for all people.

As of June 1, 1996, Health Canada's Bureau of Biologics regulated sperm banking and assisted-conception facilities. Repromed had a major and pivotal role in the establishment of these regulations and worked very closely with Health Canada. We've continued to work closely with the Canadian Standards Association, which is currently updating these regulations to ensure they're kept current, up to date, and in keeping with current standards of practice in gamete donation.

The new regulations developed by the CSA will now incorporate sperm, egg, and embryo donation. We feel that this is an excellent step in regulating gamete donation, which will eventually be incorporated into the regulatory body created as a result of this piece of legislation that I speak of today--specifically, the removal of reimbursement for donated gametes and surrogacy as a prohibition, and a move to controlled activities, which will be regulated by a regulatory body.

Through ongoing consultation, 71% of our donors have stated that they will not continue to participate in our program without appropriate reimbursement. With their inconvenience in providing their medical records, blood draws every 30 days, or the invasive treatment of undergoing in vitro fertilization for egg donation, no doubt, as we've already determined, many of our donors will not afford the inconvenience.

The Red Cross has publicly admitted that since all potential blood donors must now complete a one-hour detailed questionnaire, the number of persons donating blood has dropped dramatically, to the point where our blood supply is in a critical state of emergency.

The ability to recover accurate and detailed medical information on a donor is not dependent on whether someone is compensated or not, because one would never want to rely on someone's memory to provide such information that's critical to the lives of others. We rely on the cross-referencing and obtaining of a donor's three-generation medical history from their physician's medical records.

Health Canada and certain committee members have expressed a concern that a donor would not provide truthful and accurate information regarding their health if their motivation were financial and not altruistic. This concern was dealt with seven years ago with the semen regulations. The average age of Repromed's semen donors is not 23, as you may assume, but 33, and primarily a professional man who is gainfully employed. The average age of our egg donors is 27. Of our donors, 65% are married with children of their own, feel fortunate in building their own families without difficulty, and have a strong desire to help others; and 88% of them have a post-graduate education.

In comparing the Canadian and U.S. egg donor programs, 65% of Canadian donors are married, whereas only 10% of U.S. donors are married; 65% of Canadian donors are parents, whereas only 5% of U.S. donors are parents. Only 20% of our donors are students, whereas 85% of U.S. donors are students. Up to 71% of Canadian donors will not participate without reimbursement, whereas 90% of U.S. donors are financially motivated. I collected this data in comparison to Repromed data and Columbia University, NYU.

We conducted a worldwide study of legislation and regulations pertaining to gamete donations, the trends that are being set, and the perceptions of these regulations and their impact on the providing of donated gametes. Our government has modelled Bill C-13 very closely after the U.K.'s Human Fertilisation and Embryology Authority. In a letter to clinics from Ruth Deech, the chairman, dated June 28, 2000, she states: “While payments of expenses should not act as an incentive to donate, donors should not be left out of pocket as a result of their donation.”

I've attached in my handout on the table, if you'd like to read it, annex G of the HFEA Code of Practice 2001, fifth edition, which pertains specifically to how they regulate direct and indirect donor compensation.

¹ (1550)

As demonstrated in Sweden and the U.K., special directives are required for the importation of semen specimens from other countries, which must abide strictly to the legislation established. However, this issue is not addressed in Bill C-13. This bill allows for the direct importation of compensated, anonymous donors from the U.S. and elsewhere, which defeats the purpose of this type of legislation in Canada. Canadians will be forced to either travel to the U.S. or rely on U.S. donors for donor insemination. This will set our country back 20 years.

We're not opposed to legislation. However, we stand in alliance with the position of the CFAS, SOGC, and the CMA. We feel that donors and gestational carriers should be reasonably reimbursed for direct and indirect costs, and those indirect costs should be capped at an amount determined by the regulatory body.

We have grave concerns that our government wishes to criminalize a field of medicine they don't understand, out of a fear of anxiety and the unknown. I credit some members of this committee for attempting to understand some of the issues before you; however, it's clear that some members don't have a good grasp of the issues, by the inflammatory statements that have been documented in previous transcripts.

Dr. Chris Barratt has experience in the U.K. with the HFEA. He counsels other countries attempting legislation with this piece of advice:

“The most important factor in developing rational and effective legislation is to open the dialogue between the experts in reproductive medicine and the government advisors prior to the formation of legislation.”

Thank you.

¹ (1555)

The Chair: Thank you.

We'll move on to Eugene Bereza, the chair of the committee on ethics of the Canadian Medical Association.

Dr. Eugene Bereza (Chair, Committee on Ethics, Canadian Medical Association): Thank you, Madam Chair and honourable members of the committee.

My name is Dr. Eugene Bereza. I'm a physician and clinical ethicist at the McGill University Health Centre in Montreal, where I've consulted on well over a thousdand different cases spanning all types of medicine, from home care to ICUs, including quite a few cases in reproductive medicine. These are cases that have really brought up all the ethical challenges facing modern new technologies.

However, I'm here today as the chair of the Canadian Medical Association's committee on ethics. I'm also representing our members, who include more than 54,000 physicians from across Canada. Most importantly, I also wish to speak as an advocate primarily for our patients, especially those affected by infertility, and those who are suffering and will suffer from diseases for which medical science is searching for cures.

I am accompanied today by Dr. John Williams, our director of ethics.

[Translation]

You will recall that we appeared before this committee on October 23, 2001, in the company of representatives from eight other national health providers and scientific organizations to present our views on draft legislation on assisted human reproduction.

Although we were pleased that your December 2001 report recommended the establishment of an assisted reproduction regulatory body outside the Department of Health, we were disappointed that you did not favour other recommendations we put forward.

[English]

The government responded to your report with Bill C-56, now Bill C-13, and it is this bill that we are here to address today.

Although there are many details in the bill on which we would like either clarification or changes, we intend to focus our remarks today on the issue that we consider of greatest importance, first of all for our patients' welfare, and also for the practice of medicine. That issue is the use of criminal power to deal with medical and scientific activities. I think it's hard to impress enough, as a physician or as a patient--and I happen to be both--the sense of that incredible juxtaposition when you say in the same breath, “medical, scientific, and criminal”.

Let me say at the outset, as the CMA has stated repeatedly, that we are not opposed to prohibition of certain assisted human reproductive activities. But what is the best way to implement prohibition, so it takes into consideration the best interests of our patients, the nature of the doctor-patient relationship, and Canadians as a whole?

In your December 2001 report you acknowledged that position on this issue:

“Some witnesses recommended the elimination of the prohibited activities category altogether. Citing the benefits of regulatory flexibility, they felt that all activities should come under the controlled activity category, including the more reprehensible activities like reproductive cloning for which licences, arguably, would never be allowed under the regulations.”

However, on page nine you rejected this view on the grounds that:

“...a licence-related prohibition of this sort would not carry the same weight or degree of social censure as the statutory prohibition. ... An outright statutory ban signals more clearly that certain activities are either unsafe or socially unacceptable. The use of the statutory ban also signals that these activities are of such concern to Canadians that their status as a prohibited activity may not be altered except with the approval of Parliament.”

I believe that Bill C-13 reflects your views on this matter. The CMA recognizes your good faith in proposing and defending this position. But we are convinced of its potential for significant harm, and believe that such harm outweighs any potential benefits. So we acknowledge that there will be benefits; we just see the ratio differently.

We're pleased to have this opportunity to reiterate the reason why the CMA believes that Bill C-13 will adversely affect the physician-patient relationship and the advance of medical science.

º (1600)

[Translation]

As you know, our position on this matter is supported by legal scholars such as Patrick Healy, of the McGill University Faculty of Law, Tim Caulfield, Director of the University of Alberta Health Law Institute, and Bartha Knoppers, Université de Montréal, Centre de recherche en droit public. In essence, our position is that the criminal law is a blunt instrument and very difficult to change and is therefore appropriate for activities whose status is unlikely to change over time, such as murder and theft, rather than medical and scientific activities that are constantly developing. The latter are better left to a representative regulatory body, charged with determining if and when changes in health and safety considerations and public attitudes and values might justify allowing certain formerly prohibited activities to take place under specific conditions.

[English]

Bill C-13 begins with the statement, and I quote: “This enactment prohibits assisted reproduction procedures that are considered to be ethically unacceptable.” And I believe this echos the conclusions in your report. With apologies, I cannot help but challenge the confidence that underlines what I believe to be this categorical conclusion.

As the transcripts of your hearings demonstrate, many Canadians--especially those who are infertile, but not limited to them alone--do not consider some of these procedures to be ethically unacceptable. As a matter of public policy, should Canadians who hold this view be denied access to medical treatment for infertility because others consider such treatments to be ethically unacceptable? Should patients who suffer from conditions for which research that is forbidden in Bill C-13 might lead to a cure be denied that opportunity? We question whether criminal prohibitions are appropriate for dealing with activities on which we believe there is considerable ethical disagreement among Canadians today.

In Canada, legislators have been justifiably reluctant to use the criminal law to deal with medical and scientific issues such as abortion, withdrawal of life sustaining treatment, and the conduct of medical research. Why is an exception being made for assisted reproduction? What sort of precedent will this set for other controversial bioethical issues?

We're also concerned about the bill's penalties for infraction--jail terms of up to ten years and fines of up to half a million dollars. These, we believe, are disproportionate to the penalties for crimes that injure persons or property and as such will create a climate of undue fear and excessive caution for physicians and scientists working in this area, such that they will avoid any activity that's potentially covered by the bill, even to the detriment of patient care.

Given the rapid advance of science and medical practice and the difficulty of anticipating new developments, it will be difficult to adjust the law to deal with new applications of prohibited activities that may become perceived as ethically acceptable in the future.

The CMA has stated repeatedly that we are not opposed to prohibition of certain activities. Instead of instituting criminal prohibitions, we remain convinced that an independent body on an ongoing basis should determine the activities that are permissible or prohibited on the basis of up-to-date scientific research, up-to-date public input, and up-to-date ethical review. And we believe this could be easily accomplished in Bill C-13 by moving the procedures listed under prohibited activities--sections 5 through 9--to controlled activities and adding the words “except in accordance with the regulations and a licence” to each of the provisions in sections 5 through 9.

To summarize, we strongly support government efforts to regulate assisted human reproduction and related activities, including the prohibition of certain activities. However, we do not believe that criminalizing the medical and scientific activities named in this bill is an appropriate way to achieve these results. We consider that the objectives could be as well achieved by far less dramatic means than criminalization, and moreover that criminalization would create major obstacles to legitimate medical and scientific progress in the treatment of infertility.

We recommend that the proposed agency be empowered to regulate these practices and that the criminal power be invoked when controlled activities are performed without authority of a licence from the agency or in defiance of the licensing conditions established by the agency.

º (1605)

[Translation]

Thank you, Madam Chair and members of the committee. We will be pleased to answer your questions.

[English]

The Chair: Thank you, Dr. Bereza.

We'll move now to the question and answer period, and we'll begin with Mr. Merrifield.

Mr. Rob Merrifield (Yellowhead, Canadian Alliance): Well, I'm just going to pick up where the last presenter left off and ask you specifically which ethical procedures you are talking about. Do you think that the strong arm or the blunt instrument of the criminal law would be too agressive a penalty? If I'm getting what you said, you're thinking that some place in the future some other prohibited activities would be perhaps ethically acceptable. Can you spell out to me which ones you're talking about and explain that to us?

Dr. Eugene Bereza: I would prefer to answer the question in the following way. The CMA has not proclaimed itself on the specific activities because that's the whole point we're trying to make. We believe that if we look at history, even in the short history of Canada, there are examples--clear examples--where what was once considered totally inappropriate in terms of the social norms at the time, in a relatively short space of time has become ethically appropriate. Perhaps I can give you two examples of that.

If you think back to I guess even before the sixties, possession of birth control was illegal. Canada is a large country, and I have no doubt that there are many people who still have strong differing views on the ethics of that, but I think it's generally seen that it would be inappropriate to put that under a criminal act today. That wasn't so long ago.

The second one is, for example, the withdrawal of life support issues. When I started in medicine, which hopefully wasn't that long ago, some of the things we were considering doing people reacted to as grossly unethical, and yet today this is considered as standard care that is advisable under ethical norms.

So those are two very clear examples.

Mr. Rob Merrifield: When it comes to very difficult ethical issues that would not be in a prohibited area, don't you feel that if we're going to change on that—let's say 20 or 50 years from now, as per your point—we may see some of the procedures somewhat differently then as a nation? Before the people of Canada feel comfortable moving to whatever yardstick they feel we should move to, do you not feel that it's appropriate to bring this into the House of Commons—to the lawmakers of the land—to debate it, rather than to a regulatory agency?

Dr. Eugene Bereza: With respect, I guess we do see it differently. It's not that we question the value of a debate in Parliament. What we're suggesting is that this would be—at least from our perspective—relatively unprecedented, because we're talking about debating in Parliament issues that normally fall in a category of medical acts in the context of relationship between a physician and patient.

Mr. Rob Merrifield: Not if we're talking of these prohibited activities. These are ethically charged issues that are prohibited now not by accident, because they—

Dr. Eugene Bereza: Again, if you'd permit me, I would risk turning the question around, saying that in the spirit of cooperation, we believe there should be prohibitions, but in an area that is still ethically charged and where there is not clarity, I don't think anybody can say they have a clear view of what all Canadians think on this issue.

Where is the convincing argument that we need to bring in the power of the criminal law to regulate this, when the activities we have used to regulate medical acts and other ethically charged activities have worked well in the past? Where is the justification to break precedent?

Mr. Rob Merrifield: Well, there are two issues here. One is whether we break the spirit or actual detail of the law in a prohibited activity. Let's say we allow reproductive cloning, or somebody provides that, and you feel that the criminal law is too harsh a penalty for that. If it's inappropriate and we find it repugnant to do as a nation, then why would we want to soften the penalty for that, or eliminate that just to be a regulatory body? That's the one issue, the penalty.

The other issue is whether we're going to move it from a prohibited activity to a regulated activity, because the values of Canadians change, or whatever. There's provision under the act to review this every three years at the present time.

Dr. Eugene Bereza: Yes.

Mr. Rob Merrifield: So isn't it a more appropriate way to deal with it to bring it back to the lawmakers of the land to reflect the values of Canadians when we're moving on these kinds of issues?

º (1610)

Dr. Eugene Bereza: Again, I accept the spirit of what you're suggesting. I think the notion of having a three-year periodic review is conceptually right. But with respect, we see it differently in the following way: we think we're dealing with technologies where the turnover is more rapid than perhaps many of us in this room, including myself, can grasp. The changes in the last five months that you're trying to keep up to date with...it's an exponential rise in technology. I believe the rate of change that we can reasonably anticipate in terms of evolving social norms—once people truly understand what it is we're talking about—will be changing faster than once every ten years, or even, for that matter, once every three years.

I don't have proof or evidence for this. I guess the fear we have is that, left to the three-year review and the criminal arm of the law, this would be not the most subtle or flexible way of prohibiting an activity that we could, and would, prohibit anyway. But we'd do it in a way that was far more responsive to the situation at hand.

Mr. Rob Merrifield: I would suggest to you that you've just made my argument. Because this whole area is so flexible and is changing so rapidly, we're in a legislative vacuum. We need to put some breaks and parameters around the whole area. This is why we feel that it's an appropriate way to do it. To bring in a piece of legislation that puts parameters on it but then leave loopholes to be able to work around those parameters would be irresponsible.

Dr. Eugene Bereza: I guess we don't see them as loopholes.

Mr. Rob Merrifield: That, I think, is the nub of the difference between our opinions.

Dr. Eugene Bereza: Perhaps, and with respect, we will have to choose to disagree. But I think we share the same concerns. We feel that we have no intention of advocating for loopoles; what we're saying is we want to accomplish....

I think we share the same goal. We think there are charged ethical issues that warrant careful scrutiny. They ought to be considered, ought to reflect Canadian values, and this ought to be done carefully. I'm not for loopholes, but we feel that the best way to avoid them in a way that would protect everybody's best interests is not through the arm of the criminal law. We can do it as well or better without going that route. It's a difference of opinion of what would work best.

Mr. Rob Merrifield: I guess if you don't break the law, you're not worried about the power of the law.

Dr. Eugene Bereza: Well, in fairness, physicians are very concerned. When we get disciplined by our internal authorities or when we break with regular practices, the consequences are significant.

Mr. Rob Merrifield: Let me shift gears on this next question. I would ask Cathy about the issue of donation. Obviously, you're feeling the compensation should be there or we'll run out of material to perform reproduction in Canada. This is something we'd looked at pretty extensively. We talked to other countries that had gone this way. They said that in essence you're right, they did have a shortage for a short period of time and the donors then after a quick period of education--period of time--changed and became a little more mature and a little more altruistic in their motive behind it. They felt that was not a significant problem.

You obviously don't share that view. Do you think the experience that other countries such as Australia has had is not going to last? Or do you feel that cannot be achieved in Canada?

Ms. Cathy Ruberto: I do feel it can't be achieved in Canada. First of all, Australia's a very small country in terms of population. They have very few programs there and they do have limited access in terms of accessing donor insemination. I think if you speak to the people who are waiting for treatment rather than people who have already had their treatment, you'll hear a different story.

In the U.K., for example, with the HFEA, they attempted to remove donor compensation altogether. I mentioned during my presentation that what they found works much better for them is to have a cap on indirect reimbursement. I have a copy of the actual appendix from the HFEA that says they do believe--

º (1615)

Mr. Rob Merrifield: What would you suggest the cap would be?

Ms. Cathy Ruberto: Personally, I feel the cap should be no more than $50 for a sperm donor.

Mr. Rob Merrifield: And for an ovum--

Ms. Cathy Ruberto: And for an oocyte donor, $4,500 at the very maximum, although I do feel that is high.

Mr. Rob Merrifield: Is that per--

Ms. Cathy Ruberto: Per donation--no, per cycle.

Mr. Rob Merrifield: Per cycle, $4,500.

Ms. Cathy Ruberto: Yes. I personally don't compensate our donors that much.

Mr. Rob Merrifield: The other thing you're saying is you feel the medical history becomes a deterrent as well.

Ms. Cathy Ruberto: No, I don't feel the medical history becomes a deterrent. It has been mentioned in the past. People feel perhaps that donors will not be honest in providing medical information if they are motivated financially. But that issue has already been dealt with in the semen regulations, for example, through Health Canada. It's mandatory for us to obtain the donor's medical records from his or her physician.

Mr. Rob Merrifield: My time is gone, or I'd like to pursue that a little further.

The Chair: Thank you, Mr. Merrifield.

Mr. Ménard.

[Translation]

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

I have a question for each of the witnesses. I will start with Mr. Leader. Perhaps you know that tomorrow we will be hearing from the Privacy Commissioner. So the concerns that you raised here might be reflected in the form of questions to him. You seem to be saying that some personal information is not given adequate protection under this bill. I would like you to be more explicit and tell us what you would like to see, so that we can validate it when the Privacy Commissioner is here. That is my first question.

My second question is for Ms. Ruberto. I would like to have a clearer understanding of the difference between what you would like to see reimbursed and what the bill will allow for, from the standpoint of trying to provide as much incentive as possible to donors.

My third question is as follows. Last summer, an Italian gynecologist said on television that he wanted to do cloning. What can we do as legislators if there are things being done in private or public laboratories that are against the law? If criminal law cannot be used in these cases, what do we need?

Those are my three questions, Madam Chair.

[English]

Dr. Arthur Leader: As I said, the issue is that the current bill in clause 3 says that health reporting information shall include the identity. I would ask that this be removed, because the identity speaks to a person's name, phone number, date of birth, etc.

If you look at clauses 14 to 18, that identity is not protected, because under the regulations, health reporting information can be disclosed under a number of circumstances. If the identity of the person is part of that health reporting information, then the privacy of person that individual has could be violated.

There are many patients who are concerned, for example in Ontario, that if they use a service that's insured, OHIP will know their identity, so they will actually pay for it to protect their identity from the public record.

[Translation]

Mr. Réal Ménard: As the bill stands, does it seem to you that there are urgent situations? From what I understood, there are two types of situation. There are cases, of course, where donors give their consent for the disclosure of information, but where information is more likely to be disclosed is an emergency where a child born as a result of these donations ends up in hospital and the donor has to be identified because a blood transfusion is needed, for example.

In your opinion, are there other situations, not of an urgent nature, that would result in the donor's identity being disclosed?

º (1620)

[English]

Dr. Arthur Leader: The issue is twofold. There are many donors in this situation. In other words, a husband and wife give their sperm and egg and donate them for the purpose of having a child. Those persons are not protected. Their identity is also part of the health reporting information. There is no value in knowing the identity of Mr. and Mrs. Smith, who might be your neighbours, your friends, your family, colleagues here in the House--anybody.

I chair the expert working group for Health Canada for sperm, egg, and embryo donors. Under the system that currently exists in Canada for sperm donors, that information is kept in the facility where those gametes have been obtained. We're talking about two different things. One is the donor of a gamete, and one is the husband and wife--man and woman, partners, however you want to word it--who give their gametes to create an embryo.

There is a linkage and a number for sperm donors that goes back to the identity. But what is reported to this agency and what is subject to the rules of the court and the health ministries in the various provinces should not be the identities of the people who go through this treatment. It's that issue of privacy that I am concerned about. I have discussed that with my patients, and they have also expressed concern.

The issue of donor identity is a separate one, which I can discuss, if the committee so wishes. But I'm talking now about the people who actually go through the treatment.

[Translation]

Mr. Réal Ménard: Fine.

My second question was for Ms. Ruberto.

[English]

Ms. Cathy Ruberto: Are you asking me what would I suggest, in terms of how we would deal with--

[Translation]

Mr. Réal Ménard: What costs are reimbursed right now? What would no longer be reimbursed under the provisions of this bill, thereby creating a disincentive for future donations?

[English]

Ms. Cathy Ruberto: Currently, we compensate our donors for indirect costs. They don't receive compensation or reimbursement for receiptable expenses, at the moment. They get a flat sort of indirect fee for providing their services to us.

Clearly, the committee does not desire the status quo to continue, so we propose perhaps lowering the indirect reimbursement and adding a fee for direct costs the person may incur. Let's say, for example, someone wants to use her sister as an egg donor. The sister lives in Vancouver and the recipient lives in Toronto. Someone would have to pay for that flight from Vancouver, hotel accommodations, and whatever out-of-pocket expenses she may incur, even if it were altruistic.

I had a situation where an anonymous egg donor moved to the United Kingdom. The recipient couple had a beautiful, healthy child with that donor, and desired to have a second baby. Because the donor no longer lived in Canada, arrangements needed to be made to fly her here to undergo treatment so they could have a second child. It's really as simple as that.

Certainly if we didn't have to compensate our donors that would be wonderful, but unfortunately we already have a 95% rejection rate, with compensation. We have to screen a hundred sperm donors to get five, under the current system.

We have grave concerns about the number of pregnancies we can have with a particular donor, as it is. The new standards that are going to be released propose allowing three live births per 100,000 geographic population, to a maximum of 25 families per donor. That's totally acceptable. However, in a city like Ottawa, which isn't really that much bigger than 100,000, we're restricted from using one donor who achieves three pregnancies in a family, and that happens very quickly.

We have a population of 25 million people. A lot of people who use our services live in small towns. In a town of 25,000 people, therefore, anyone else is restricted. Where are the donors supposed to come from?

We already have mature donors, as I was trying to stress in my talk. We don't use students. These are professional older men in their mid-thirties, and I don't know how much older they can be. Scientifically, it's unacceptable for a man to be over the age of 40 or 45 to be a sperm donor, because of the possibility of an increased risk of Down's syndrome, or any other possible chromosomal anomalies. Those are world-recognized age cut-offs.

I've been doing this for 13 years. Believe me, if there were a pilot study we could do, we would do it gladly.

º (1625)

[Translation]

Mr. Réal Ménard: What is the answer to my third question?

Dr. Eugene Bereza: Thank you for your question, because I believe it raises exactly the situation that we would like to propose a better way to resolve. You talked about the gynecologist in Italy who said that he was going to use human cloning technology, and you asked what would be done about such a situation in Canada.

I am giving you my personal opinion here. Obviously, I cannot speak on behalf of the CMA, since the association has no reason to take a position on human cloning.

I cannot imagine how today, in 2002, a regulatory body would be able to find such a practice acceptable from an ethical standpoint. I cannot imagine it. After all, the regulatory body is made up of doctors and scientists, people from everywhere, citizens, legislators, all sorts of people. All these people want to sit down together and discuss proposed new initiatives, and they are going to wonder whether this is something that Canadian citizens feel is acceptable today. I imagine that the answer today would be: absolutely not.

It would be placed in the regulations. I do not see how a doctor could carry out treatment like that: he would not have permission to do it in Canada outside the framework of the medical regulatory body, and it...

Mr. Réal Ménard: But if he went ahead anyway?

[English]

The Chair: Thank you, Doctor.

Thank you, Mr. Ménard. Your time is up.

Dr. Bennett.

Ms. Carolyn Bennett (St. Paul's, Lib.): Thank you, Madam Chair.

As a family physician, I'm interested in family history as it concerns people who come from donor situations or even adoption. Sometimes our family history changes--your mother gets breast cancer, your father gets colon cancer--and that changes the screening you would have as an individual.

Do you think there should be a provision that donors have to report to the registry any change in their family history? And if that were done properly, would we need to have the infertile couple in the registry as long as there was a way of getting that information to them? I'm still not quite sure why the couples have to be registered. I think the donors need to be registered. Could somebody help me with my little problem in terms of how we would transmit information about changing family history and who needs to be in the registry?

º (1630)

Ms. Cathy Ruberto: As Dr. Leader said earlier, we already have a mechanism for tracking. That's part of the legislation that's currently in place and has been since 1996.

As a facility, as a distributor, we must be able to track where our specimens have been used. As a clinic, if I contact them with an adverse outcome, they need to be able to go into their files and have a cross-referencing mechanism. It's already a part of the legislation. I don't feel that having our recipients or patients in the registry would do anything more than violate their privacy. We already have those mechanisms in place.

In terms of collecting future information, we have that in our donor contract--that should the medical history change, the donor needs to report back to us, and they have. We also are doing DNA....

Ms. Carolyn Bennett: Is that the provincial licence for your clinic?

Ms. Cathy Ruberto: There is no licensing provincially. Currently we are inspected annually by Health Canada inspectors under the Food and Drugs Act. When they come in and review our donor records, for example, they go through our medical records. It's the law that we have to update the donor's medical records, while they are currently a donor, every six months. We have to update their exclusion criteria on a monthly basis.

It doesn't address your question for the future, though, 25 years from now. However, we have it in our contract that the donor signs. It's explained to him very carefully that should he have a major medical disorder occur in his family, he needs to be in touch with us. Is he going to do that? It's happened in the past. Will he do it any better with the facility that he or she dealt with, as opposed to the federal government? Perhaps. I don't know.

Ms. Carolyn Bennett: Like every five years or something?

Dr. Leader.

Dr. Arthur Leader: The other thing is that the regulations that have been drawn up now require that a blood sample be taken and stored on each donor, and that in the event that something occurs in the future and with the availability, as you allude to, of genetic testing, we now have the sample to see whether or not the donor in fact carries that particular genetic trait. So you have that genetic information, plus the family history information, as part of the current regulations regarding donor semen. What has been expanded is that when you get to donor eggs and embryos, those same requirements will be there.

In terms of tracking people, what happens is, if there is a birth defect that occurs as a result of donor sperm, for example, the bank is contacted, and the bank will then look at its records and will contact the donor, because many of them have children, to get a geneticist's opinion as to whether or not that particular abnormality is a one-off occurrence or in fact is a genetic problem.

The issue of tracking is an issue for all of us. It's not just an issue for assisted conception. It's an issue for keeping track of people for other activities as well. You try your best to track them, and most of the time you're successful.

Ms. Carolyn Bennett: The suggestion is that infertile couples be registered. Do we need that? I know that a lot of infertile couples have said they don't want to be registered. They want to have the information eventually, but they don't want to be in some big infertile registry.

Dr. Arthur Leader: That's what I've heard from my patients. They don't mind the information being there that they had this problem and went through this treatment, but they don't want, as the bill is currently drafted, the words “identifying information” to be part of the act. I think there's an obligation to know what happened to people who had treatment, but the identification violates their privacy. It makes it very difficult for people to come forward and say they have a problem and they need this treatment. I think it does a disservice to the infertile.

Ms. Carolyn Bennett: Thank you.

The Chair: Mr. Lunney.

Mr. James Lunney (Nanaimo—Alberni, Canadian Alliance): To Cathy Ruberto, I'd like to pick up on something you mentioned earlier about there being a 95% rejection rate for sperm donors. Can you explain why that is? Is it age, as you mentioned, or the quality of the sperm?

Ms. Cathy Ruberto: When we do our donor screening, initially we do a telephone consultation to rule out anyone right off the bat. So I'm only going to include people who have passed an initial interview and have met the initial exclusion criteria.

First, the vast majority, unfortunately, are due to the fact that sperm counts are dropping dramatically. This information has been published in the medical journals and the popular press for several years now. The second reason is the three-generation medical history. If a donor has a major medical disorder or genetic illness in his or her family history, he or she is going to be rejected.

The main reasons have to do with health. That's the first priority when doing any kind of donor screening. Those are the majority of reasons. Second would be the quality of the actual specimens. If they don't meet certain criteria, they don't freeze well. If they don't freeze well, they die in the freezer, and there isn't anything to inseminate. So maybe we need to talk about changing the environment or diet. As it is, the donors don't smoke, drink, or do drugs. They're married, they have kids, 65% of them. These are healthy people.

º (1635)

Mr. James Lunney: You said you pay $50 for a donation. Presumably you get multiple samples. There are millions of sperm in a donation. How would you process that?

Ms. Cathy Ruberto: We have to prepare it to be cryo-preserved. We don't just freeze an ejaculate as is. It has to be prepared.

How do we allocate what the--

Mr. James Lunney: Would you get 10 or 20 or 30 or--

Ms. Cathy Ruberto: Quite honestly, we can perhaps make two or three vials from one ejaculate.

Mr. James Lunney: And that would be used for one or two or three procedures.

Ms. Cathy Ruberto: Each insemination unit is used for one insemination.

Mr. James Lunney: So from one you would only get--

Ms. Cathy Ruberto: For what we call a specimen that's prepared directly for an intrauterine insemination before it's frozen, we're quite happy if we are able to get more than two vials from one ejaculate. We're only dealing with a small volume. This is two cc's. It's not a gallon, like a bull.

Mr. James Lunney: Admittedly, there are millions of sperm in there, and it doesn't take millions to accomplish--

Ms. Cathy Ruberto: The normal sperm cryo-preservation survival rate is 50%. We're already dealing with a declining sperm count. A sperm donor needs to have a minimum of about 60 million sperm. Half of them are dead as soon as we plunge them into the nitrogen. There still has to be a certain quality in order for someone to get pregnant, or what's the point of freezing it?

Mr. James Lunney: So 30 million is kind of lean. We lose--

Ms. Cathy Ruberto: That's just to start with.

Mr. James Lunney: Apparently, your standards are a little lower in your production. We've had other witnesses in a similar situation to yours claim that they get 300 samples out of one sperm--

Ms. Cathy Ruberto: Not out of one ejaculate. I think somebody must have misunderstood that, because that would be in cattle, not in humans.

Mr. James Lunney: Is there a limit on the number of times a sperm donor can donate, or should there be?

Ms. Cathy Ruberto: The limitation really needs to be on the number of live births that are achieved. That's very important. We do track that very carefully. The new standards that will be coming out, from what I've seen as an independent reviewer, say three live births per 100,000 geographic location to a maximum of 25 families and the donor is retired. That could take 100 units or 40. It depends on the people who are inseminated and how quickly they become pregnant.

Mr. James Lunney: You might foresee some problems managing that if you don't know where they've.... You would know presumably what's being done or what stage they're at and that they're being used where you've sent them.

Ms. Cathy Ruberto: We do. We survey the physicians and we ask them to report back to us on exactly which units were used, how many times.

Mr. James Lunney: Let me take it another way. If there's no donor ID and no ID of the participants, how can we track outcomes? We're in a day of evidence-based procedures. And outcome-based procedures are a big thing in medicine today, as I'm sure you'll all recognize, certainly our friends from CMA.

If we're not tracking this, in the ten years, roughly, that we've been doing IVF we have yet to come up with a national registry for a comprehensive collection of data on IVF outcomes. For example, we'd like to know how many frozen embryos there are in Canada.

So could somebody explain why the medical profession has been unable to generate support for the comprehensive collection of data on outcomes at this point?

Secondly, given that other large countries have already moved to collect such data, what are the particular problems in Canada, where the number of professionals involved in the procedure is actually quite small?

Ms. Cathy Ruberto: Perhaps I can talk about the sperm collection, because I know Dr. Leader will definitely talk about the in vitro data collection.

Part of the regulations that were instituted in June 1996 require us federally, by law, to track the specimens that are shipped. That's the only way we can collect our data. We send out a survey to the clinic listing the patient ID. We do have to collect an identification number on the recipient, and all the donors have an identifying code, as does the actual insemination unit, as you would get in any drug that has a lot number. The donor has his own unique identifier, and the actual ejaculate collected on that particular day from that particular person has a unique identifier. When a clinic places an order they must give us a unique patient identifier, not necessarily the patient's identifying information, but a file number so that they and we can cross-reference that information for the future.

º (1640)

Dr. Arthur Leader: With regard to the IVF, there is a registry in Canada that uses the same patient-specific computer software as is used in the United States. Each clinic has a number and each patient is given a number and that number is cross-referenced within the clinic to the actual identifying information, that is, the name, age, address, and so on of the patient.

The information then goes to a collection or a data processing unit in Hamilton and the information is cycle-specific, which means every time a woman is treated, that information is submitted electronically, and it uses the same database that they use in the United States. So that information has been collected now.

We're in the third year of using that system so that, in effect, each clinic knows what's happened to each of its patients, and nationally we know what's happened to all of the patients who have had treatment. The issue of elaborating that to what's perceived in the legislation is a question of dollars. Right now, that registry is supported out of each of the clinics. There is a charge to be a member of that, plus there is a charge for every record that's submitted, but those costs really cover the minimal data processing that we publish on an annual basis. But there is record linkage using the same system for IVF.

The Chair: Thank you, Dr. Lunney.

I want to pick up on that. There was a group here last year, but they had been assigned to collect all this information and they had never been able to do it. What was it called? The CFAS. Did you not come with them?

Dr. Arthur Leader: Yes.

The Chair: And they denied being able to get that information. They were still doing it.

And you are telling me this data bank has been in place for three years?

Dr. Arthur Leader: I don't recall what the question was. I think the issue at that time that people were asking for was the pregnancy rates.

The problem with pregnancy rates is that there's usually a two-year lag because your last treatment is at the end of December, your first births are in September or October, and then by the time you collect the data, it's about three more months.

So at the time you asked the question, we didn't have the live birth rates available.

The Chair: Are the maintainers of that data bank putting out an annual report? We couldn't even find out exactly how many fertility clinics there were in Canada.

Dr. Arthur Leader: Madame Chair, I can certainly ensure that you get that.

We issued a press release in September that outlined the number of clinics that participated. We outlined the outcomes both in terms of people pregnant as well as live birth rates. It's the second press release that's come out on this.

Again, there are time delays in collecting the data. It's like the United States, where they're just getting the data now from 1999. So there is a lag period. But I'll undertake to have the CFAS send that to you.

The Chair: Do they report back to the fertility clinics—which indeed fund them—in any kind of an annual report format, or do they just issue press releases?

Dr. Arthur Leader: No. What happens is that each of the centres that provided the data will get the national statistics in a number of areas, and will get their own statistics as a comparator. This information is then provided by each clinic to its patients. So if the patient wants to know how her clinic compares to the national average, they can have that information.

º (1645)

The Chair: Would you undertake to provide it to us?

Dr. Arthur Leader: Yes.

The Chair: Thank you very much.

Dr. Castonguay is next.

[Translation]

Mr. Jeannot Castonguay (Madawaska—Restigouche, Lib.): Thank you, Madam Chair. I want to come back to the issue of donor anonymity. We tend to think, of course, of donors who want to remain anonymous. We have also had witnesses tell the committee that it is important to remember the children who are born as a result of these donations, since they too, I believe, have rights. We know that a time will come in their life when they might want to try to find out who their parents are. That is akin to the approach taken in the bill: the donor's identity will be part of the medical information, but that identity cannot be revealed to the recipients or biological children without the donor's consent.

I would like to hear your opinion on that. From the point of view of the children... I have to tell you that if I had been born as a result of these techniques, I would certainly like to know who my parents were. I would at least like to know that the information existed somewhere, and if my parents agreed, I would at least like to be able to ask for it.

I would ask you to comment on this.

[English]

Ms. Cathy Ruberto: I'm aware of the vast majority of the people who have spoken here at the committee who are adult offspring. The situation is very different today from what it was when many of those people were conceived. It was common practice for a physician to do donor selection for their patient in those days. It's very unfortunate for these people, because they really don't know anything. They have had a hard time getting any kind of medical information.

In this day and age, in the 21st century, we collect extensive non-identifying information on our donors, including—as I mentioned earlier—the three-generation medical history. Should they desire it, this information is available to any recipient and any offspring at any time. Of course, people are more aware that they can have access to that information, and they should ask for it.

In terms of the future, we've always had a privacy policy in place that said that whenever an offspring reached the age of majority they could contact us. We would contact the donor at that time and advise them that there's an offspring who is interested in some disclosure. If the donor agreed at that point, we would facilitate the donors and the offspring meeting by mutual consent. We haven't been open for 18 years yet; we're just going into our 13th year now. But I do have a list of patients already who propose that their children seek them out in the next five years or so. I quite look forward to that.

In terms of establishing a piece of legislation that says there can only be openness, quite honestly—with the compensation issue—in a perfect world, it would be wonderful if people would just give of themselves and be open. That would be wonderful. But the reality is that they don't.

If we did a pilot study to try to do donor recruitment without compensation and without anonymity, I'd be happy to participate in it.

[Translation]

Mr. Jeannot Castonguay: Yes, but clause 18 of the bill stipulates that the information and the identity could not be disclosed unless both parties gave their consent. What is being proposed is basically that the information should be recorded so that if an offspring wanted at some point to know the identity of his or her parents—and I personally believe that it would be quite legitimate—and if both parties agreed... But it would take the consent of both parties.

Do you not find that a reasonable approach?

[English]

Dr. Arthur Leader: If I may, Madam, I'll respond.

I think there are three rights that are here: the right of autonomy and privacy of the parents, the right of privacy of the donor, and the right of the child to know his or her origins. Those rights cannot be dealt with in one fashion.

The idea of having a donor's identity available, I agree with. It's on the identity of people going through the treatment that I have a problem with. As the honourable member, Mr. Lunney, mentioned, there's evidence in the literature that can speak to the questions that have been raised by others.

There is a study, which was published in 2001 out of the Netherlands, of lesbian parents. In that situation it's clear, there's no man hiding behind the sperm bank. In this study that was published they looked at the attitudes of who wants to know, and these children are now over ten years old. All of them have been in fact told that they were conceived with donor sperm.

Only 19% of the parents wanted to know the identity--these are female couples--and 27% of the children wanted to know the identity. The overwhelming majority of children, and this was a very detailed study--and I can leave this with the committee--where they surveyed and spoke to the children independent of speaking to their parents, and it's well documented.... The need to know the identity exists, but for the overwhelming percentage of children and their parents it doesn't exist.

In Sweden, where they have the open law, 89% of people who would participate in this said they weren't going to tell their children that they were conceived with donor sperm. In order to achieve what some would wish, you have to mandate that somebody--i.e., the government--will come into a family and tell that family they have a child who was conceived with donor sperm, if they want to basically deal with only the child's need to know.

In fact, what the study showed and what other studies have shown is that children don't need to know the identity of their parents. There isn't that overwhelming desire. It is a small minority of people in the studies and in the public who have made that request. So the need to know I think has been exaggerated.

º (1650)

[Translation]

Mr. Jeannot Castonguay: I can understand your point of view, but there are still 27% of the offspring who do want to know. I am making a sort of parallel with the situation that used to exist where adopted children did not ask the question. The attitudes of adopted children—and there are adopted children in my own family, Madam Chair—are changing more and more. Unfortunately, in many cases, the information is not available, and I must tell you that this can be dramatic from a human point of view. I think that this explains why having information and sharing that information, assuming, of course, that both parties give their consent... That is still my opinion. I respect your opinion and appreciate your comments.

Thank you.

[English]

The Chair: Thank you very much.

Mr. Szabo.

Mr. Paul Szabo (Mississauga South, Lib.): Thank you.

I wonder if, Dr. Leader, maybe you can tell us what percentage of patients who are in fertility treatment require IVF treatment.

Dr. Arthur Leader: There are no good figures, but in terms of our own clinic we have, on an annual basis, 22,000 patient visits for infertility. We have about 10%, about 2,200 who are IVF.

Mr. Paul Szabo: With regard to the IVFs, can you characterize the backgrounds, or what might be some of the root causes or problems that would maybe give a profile of that 10%?

Dr. Arthur Leader: Probably, and it's increasing, close to half is that there's what's called “male factor”, or teratospermia, or the men have abnormal sperm that are less fertile.

The second would be tubal disease, either secondary to sexually transmitted infections, or to endometriosis, which is a condition that's not related to sexual transmission.

What we're seeing also is an increasing number, and I alluded to it in my opening statement, of women who are older. The age of women who come forward is increasing, and we know that women's fertility starts to decrease significantly at ages 25 to 27. As people defer that....

So we see those are the major reasons that people come forward.

Mr. Paul Szabo: I think that's actually a little worse than I thought. The first time I asked the question of someone, the answer was 20% were IVF. It appears that we're in the range now of maybe 10% to 20%. That's your clinic.

It's interesting, because this idea of infertility and whether or not it's at fault or no fault, and your issue, as you commented, about whether or not IVF should be considered as a medically necessary matter, is something we will want to talk about with others. But we have your view on the table.

Dr. Françoise Baylis, who is with Dalhousie--I think you probably know who she is--drafted the CIHR guidelines for embryonic stem cells, etc. She was with us yesterday. She has made a comment on the public record that women today are already being drugged up to the max in terms of being able to harvest eggs to the point where we are putting their health at risk and we can't drug them up any more. She went on to say that the situation of the shortage of the ova is going to get exacerbated simply by virtue of the fact that the demand for ova is going up. More people are waiting longer, etc. The problem is, as you get older, the chances are that no matter how many you harvest, you can't get over your problem.

Are we drugging women up to the max now? Would you like to comment on Dr. Baylis' point?

º (1655)

Dr. Arthur Leader: I would. I wasn't here for her statement, but I respect what she portrays, what she said. In fact in our clinic we're using less medication than we did. I've been doing this now for twenty years. I've been involved in this from the beginning, in the early eighties. Our treatments are much more precise, so the amount of medication we're using is less thanit was. The number of eggs we're harvesting is intentionally less, because we've developed the science in the laboratory, so that we can use what we get more effectively despite the fact that the women's ages are increasing.

I think that comment of drugging to the max may have been true at the time I was doing this ten years ago, when the drugs were relatively ineffective by today's standards and you needed to use a lot more.

The other side of it is that there are very good studies now out of Australia and Sweden and the U.K. that show there is no increased risk of ovarian, breast, or uterine cancer associated with this drug use. And there are large epidemiologic studies that have been done. If anything, in our treatments we're putting in fewer embryos, because we can be more efficient with what we have, and therefore the requirements are very different.

I think she's speaking of a different time and certainly not the time here. We track our month-to-month use of medications, and they have been going down.

Mr. Paul Szabo: Okay, we're certainly going to want to get more.

On this last area, I'm not sure whether any of you will be able to answer the question, but I'm going to try to find out. With regard to those who are in the businesses of collecting gametes, for whatever reason, those gametes may ultimately go down the line for a research purpose. It might produce embryos that might be used for embryonic stem cell harvesting or something like that. I am wondering if somebody can tell me what is the relationship, or the line of relationship, between gamete collectors such as a fertility clinic, for instance, and the research community. Presumably the fertility clinic has forms where they try to get consent. We get sign-offs. The CIHR has some unbelievably specific and detailed sign-offs, right down to the researcher having to disclose his financial interest and having to sign off no future participation in commercial uses, etc. This is a big deal for the fertility clinic to do, or other gamete collectors.

When it is determined that there is a surplus embryo available for research, and appropriate consent has been achieved, how does that get into the hands of a researcher? Given all the activity and the work and the legal risk and the storage and all the other things the clinic has done, is there any compensation or cost recovery by the fertility clinic from the researcher who's getting the use of this embryo?

Ms. Cathy Ruberto: I'll speak only about sperm.

» (1700)

Dr. Arthur Leader: I think Dr. Baylis, in the article she wrote for the Journal of the Society of Obstetricians and Gynaecologists of Canada, used the data from Ottawa because we have very precise data. If you look in the decade from 1991 to 2001, there were 3,252 embryos frozen, of which all but 228 were donated. Of those 228, 159 were donated for research. That's over a decade.

To answer your question, the CIHR guidelines say very specifically that the people who get the consent can have no interest in the care of the patient, so that there must be a separation between the person who counsels the woman and her partner to undergo treatment and the research facility. The CIHR guidelines are very clear to make that separation. Couples are given the choice in our clinic before they ever start treatment as to how they want to use these embryos, which are surplus to their reproductive needs. They're not creating embryos for research. These are embryos that are abandoned, and the majority of those that are abandoned are discarded. That's their wish: Throw them away.

A small percentage, less than 1%, are donated to be adopted to another couple, and the remainder, which is probably about 5%, are then available for research. The majority of research, the only research that's done--there's no stem cell research being done now on human embryos that are derived in Canada because of the moratorium the CIHR has proposed--is to improve, as the bill states quite correctly, the quality of care. We've arrived at this area because we've been able to use embryos that have been donated for research to test and to improve the quality of our laboratory methods for patient care.

In the event that the CIHR guidelines are approved and this bill is improved, then there is a very clear process that's outlined, as you've pointed out, in those guidelines that we'll follow. There is no financial interest in it. The embryos are donated for research. The process says that if you ask a couple to do that you have to have them come back and sign specific consents for stem cell research.

The Chair: Mr. Szabo, you have had ten minutes. Dr. Lunney wanted back in for a minute.

Mr. James Lunney: I offer my first minute for a response to Mr. Szabo's question.

Mr. Paul Szabo: I'd like to follow up on my question.

If the 24 fertility clinics across Canada are all doing this work, there will be surplus embryos. There are surplus embryos, surplus to the needs of IVF for reproductive purposes. If they are now going to be available and funded publicly to go to researchers, help me over this barrier about why would a fertility clinic go to all the problem, all the legal care, all the other stuff to just hand over the embryos to some researcher who's going to use it and potentially get commercial benefit from it?

Dr. Arthur Leader: The researchers we work with are in universities and it's part of our academic tradition that we work as colleagues. We aren't selling them. We would hand them over as part of the collegial relationship to improve the science. That's the structure we've set here in Ottawa.

Mr. Paul Szabo: Thank you.

The Chair: Mr. Lunney.

Mr. James Lunney: I have a question here for Cathy Ruberto. Does Repromed import sperm?

Ms. Cathy Ruberto: No, it does not. We are a processor and we are a distributor.

Mr. James Lunney: Are you aware of sperm being imported or exported?

Ms. Cathy Ruberto: Yes, there are sperm banking facilities that do import their specimens into Canada that have been approved by Health Canada.

Mr. James Lunney: We have three doctors here actually. Where did that question go? My head's gone in three different directions.

» (1705)

The Chair: I have a question.

Mr. James Lunney: Go for it.

The Chair: I want to ask the medical doctors here if I'm correct in suggesting that a woman who is to become an egg donor--or an egg seller, I think is a more precise term for it--undergoes a certain amount of drug therapy, possibly less than ten years ago, according to Dr. Leader.... In any case, she ingests drugs that she would not otherwise be taking and then there is a medical procedure during which a part of her inner body is perforated in order to harvest those eggs. I would assume that perforation has to heal. If those eggs are retrieved and are viable, I understand she is paid money for her trouble. Is that generally correct? It may be a crude description, but is it correct?

Dr. Arthur Leader: Not always, because there are egg donors we use, for example, who are known, who are paid nothing, who go through the process for a friend or family without any compensation.

The Chair: Yes, but when we suggested that, the suggestion back to us from the field was the donors would dry up. So I have to assume that group you're talking about is a very small percentage of the donors.

I'm getting a nod from Cathy.

The vast majority then take drugs they wouldn't otherwise take, have their bodies perforated to harvest eggs, and then are paid.

My question to you is this. Is there any other medical procedure that you know where either males or females ingest drugs for the purpose of preparing them for an invasive procedure during which something is removed from their body for which they are paid money? Is there any other procedure during which that happens?

Dr. Arthur Leader: In Ontario, if you are a bone marrow donor and your bone marrow is required, if you happen to live in Sault Ste. Marie, then your costs are covered by the system. In this case you have to come and you have to have someone take a much bigger needle than is used for IVF--the IVF needle is the same size as you take blood with--and--

The Chair: But that's for expenses, is it not? Is there any other cash payment, such as $4,500 as suggested by Mrs. Ruberto?

Dr. Arthur Leader: Well, the issue is they also receive for expenses and lost time. In the U.K., for example, for sperm donors--I visited with HEFA this September--they pay the equivalent of jury duty, which is $50 for their sperm donors.

The Chair: But they're not taking extra drugs and they're not having any body parts perforated. It's not the same comparison.

Dr. Arthur Leader: No, but what they did as part of a consultation in 1998 is they said that egg sharing, where a woman who is already going through this for her own purposes can share the eggs--which is prohibited, by the way, under the current bill--is a far better way than having people go through this in the way you described. But under the current legislation, the egg-sharing process, which after consultation was felt to be superior, is prohibited and is criminal.

The Chair: But that's also a sidebar--a small group out of a larger group. I'm talking about the normal situation where a couple who come to you for treatment do not have viable eggs and another party is recruited, who mistakenly is called an egg donor, when in fact she's an egg seller, and she goes through all these procedures, has something removed from her body, and is paid.

The only example that you can come up with for me is the removal of bone marrow from someone to share with someone who probably has leukemia, or something like that, for a bone marrow transplant. Is that correct?

Dr. Arthur Leader: That's one example.

Cathy, do you want to speak to it?

Ms. Cathy Ruberto: What we are really trying to address is the fact that there are direct and indirect costs that a person who provides--I prefer it to seller--their gametes to another person who's anonymous or unknown to them should not have to incur out of their pocket. In particular, as I mentioned, 65% of our donors--for the lack of a better word, since it's the universally accepted word--are married women who have completed their children and they fortunately are under the age of 32, and are willing to do this.

The Chair: I'm not asking about the characteristics of your women who come in to have this done. The only question I had was is there any other medical procedure that has those various components I described--the taking of extra drugs, the perforation of some inner part of the body, the extrusion of something that's inside there, and the payment for that afterwards.

As to the $4,500 you mentioned earlier, if the person lived around the corner from the clinic where it was going to all happen, there wouldn't be a lot of built-in expenses. Of course, if we're supplying somebody over from Indonesia, or something like that, that's different, but that person would get extra money even today.

Ms. Cathy Ruberto: How's that? Because their direct expenses would be--

The Chair: Because they would have direct expenses, exactly. I'm talking about the approximate $4,500. We had heard $1,500 last year. Let's just say somewhere between $1,500 and $5,000.

» (1710)

Ms. Cathy Ruberto: I'll be very honest with you. The issues in this country are starting to snowball in terms of donor compensation, as they did in the United States. What I stress very highly is that we need a cap on indirect costs.

I'll explain to you why I suggested $4,500. First of all, we do not compensate our donors that much money. In our personal clinic we feel that's excessive. However, in Canada the range is between $2,500 and $5,000. There's a price war. You can stop having a price war without limiting, and I say that just as if we're selling gasoline, because unfortunately that's what happens.

The Chair: You're admitting it's a commodity.

Ms. Cathy Ruberto: It is.

You can prevent this from continuing to happen, yet not restrict the service, by putting in a reasonable cap. I've provided you with the HFEA outlines on exactly what they will compensate someone for how many miles or kilometres, and so forth. I think that's appropriate.

The Chair: I read that. Thank you.

Are there any other questions?

An hon. member: No.

The Chair: Seeing none, I would thank the witnesses for coming and sharing their material with us. We've read some of it as you've talked, and others we have to investigate. If we have further questions, I hope we could phone you for clarification. Thank you very much.

I would ask the committee members to stay for five minutes. We have a budgetary problem. The clerk has been investigating a solution to it. I need to present it to you, because we won't have anything to do next week if we don't address it.

I'm going to take a 30-second break, because budgetary matters are in camera. I would ask that the room be cleared as quickly as possible, please.

[Editor's Note: Proceedings continue in camera]