HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Thursday, November 8, 2001

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[English]

The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good morning, ladies and gentlemen.

I would like to call this meeting to order and welcome our witnesses this morning.

We have representatives from the Canadian Council of Professional Engineers, the London Health Sciences Centre, the Infertility Awareness Association, and the National Council of Women. I think we'll follow that order. We'll begin with the Council of Professional Engineers. I'm not sure which one of them is going to speak: Marie Lemay, the chief executive officer, or John Runciman, a professor in the Faculty of Engineering at the University of Guelph.

Ms. Marie Lemay (Chief Executive Officer, Canadian Council of Professional Engineers): I will start, Madam Chair, if you don't mind.

The Chair: Thank you. Go ahead.

Ms. Marie Lemay: Thank you very much, Madam Chair and committee members, for the opportunity to address you today.

Some of you—or maybe all of you—are probably thinking, what do engineers have to do with assisted human reproduction? Well, I'm hoping that after today you will have the answer to that question.

My name is Marie Lemay. I am chief executive officer of the CCPE, and I am an engineer myself.

With me is Dr. John Runciman, professional engineer. He's an assistant professor in bioengineering at the University of Guelph. Dr. Runciman is one of the many volunteers who work to advance the engineering profession in Canada. He has recently co-chaired the task force on bioengineering for the professional engineers of Ontario and was instrumental in reviewing the research for our brief.

We represent the Canadian Council of Professional Engineers. Our members are the twelve provincial regulatory bodies that license the profession of engineering in Canada. The council speaks for over 160,000 engineers in Canada.

[Translation]

Those engineers are responsible for the health and security of Canadians in all the fields involving engineering work.

Our associations and orders are required by law to protect the public health and safety. According to the law, we must ensure that only qualified individuals who received the necessary training and are licensed as professional engineers engage in the practice of engineering in Canada.

Madam Chair, assisted human reproduction is a bit of a double-edged sword. On the one hand, it gives hope to sterile couples and looks very promising for the treatment of diseases. On the other hand, however, there is the important risk of compromising human health and of allowing science to exceed limits, the limits of what is acceptable, at least from a moral point of view.

Engineers recognize that there must be a balance and we strongly support the need for the government of Canada to legislate in that field. I would add that we agree with the government decision to proceed with draft legislation instead of tabling a bill as such, giving themselves time to study, discuss and reflect upon this complex issue with the citizens of Canada.

We are here today to explain the role of engineers in assisted human reproduction and to make recommendations that, because of the existing regulatory framework in Canada in the field of engineering, we feel worth considering in any legislation regarding assisted human reproduction.

[English]

Engineers are highly involved in the research, development, and implementation of assisted human reproduction processes, systems, equipment, and instrumentation. They work in many different engineering disciplines: chemical engineering, electrical engineering, mechanical engineering, and material science, to name a few.

To give you some idea of the role that engineering plays in the medical processes of assisted human reproduction, I've asked Dr. Runciman to share some examples of biomedical engineering.

Dr. Runciman.

Dr. John Runciman (Associate Professor, Faculty of Engineering, University of Guelph): Thank you, Marie.

I am a bioengineer, and it's a strange thing about bioengineering that virtually anyone you ask will have a different impression about what we're supposed to be. I'm a biomedical engineer to some people, I'm an orthopedic engineer to others, and to a few others I might even be a mechanical engineer.

In reality, bioengineers work in fields as diverse as agriculture and aquaculture, forestry, food production, the beverage industry, medical equipment design and production, orthopedic devices, rehabilitation devices and techniques, ergonomics, and biochemistry. Essentially, bioengineers meld engineering practices with biological sciences.

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So how do engineers factor in the field of assisted human reproduction? Well, in general their contribution takes place in two areas. The first is in the development, optimization, and analysis of the processes used in assisted human reproduction, and the second is in the development of some of the specialized equipment that's used in assisted human reproduction. This also includes technical developments in the software and computing area that are used in some of these pieces of equipment.

I would now like to expand on these areas and give you a bit of additional background on what it is I'm trying to talk about. First of all, engineers play a central role when virtually any process is moved from the laboratory to a production scale. That holds true for areas as diverse as steel and the beverage industry. In any area where you find something being produced, you'll almost certainly find an engineer involved in the process of taking it from the laboratory scale to full-scale production.

Engineers are trained to overcome the challenges encountered in this type of move. Quality, safety, and efficiency are all of prime importance. Engineers are trained to work in multidisciplinary teams, which are so common, especially in the medical field. There you have scientists, physicians, equipment suppliers, and lab technologists all working together for a common goal. In this kind of environment the engineer usually acts as facilitator, project manager, and on some occasions technical expert.

On the devices side, we need to consider how the work of engineers intertwines with that of physicians, scientists, and technologists in the development of some of the specialized equipment and techniques that are used in assisted human reproduction. I wanted to give you an example of microtechnology. Assisted human reproduction techniques demand equipment that is extremely precise. It has to be biocompatible and oftentimes controllable by a physician or a technician.

A typical example of this is equipment that allows a technician to literally grab a spermatozoon by its tail prior to placing it into an ovum. Similarly, lasers, ultrasound machines, and other sorts of equipment are used, all of which are developed with the assistance of engineers.

Another specific example is the sorting of different types of sperm based on DNA content. The equipment designed to do this is all designed with the expertise of engineers involved. It's the devices and processes in assisted human reproduction and the technical demands that are placed on both those areas that bring to the forefront the skills of engineers who are involved in this profession. They only become a reality when microtechnology, engineering, and the biological sciences actually come together to allow them to do so.

[Translation]

Ms. Marie Lemay: Thank you. Our analysis of future trends shows that the willingness to increase the success rate in assisted human reproduction will undoubtedly encourage the thrust towards the development of new technologies, new systems and new materials.

None of us would be here today if the interest for biotechnology and bioengineering and their use was not growing so rapidly. Each new request for enhanced technology and new systems in assisted human reproduction only confirms the important role engineers play within the biomedical team.

As the industry moves ahead, the number of engineers evolving in that field will rise. Which brings us to the main reason of our presence here today, Madam Chair.

In Canada, engineering is a regulated profession. Only qualified individuals who have the required training and are licensed by a provincial regulator can legally engage in the practice of engineering in Canada.

As regulators, our provincial associations are obliged by law to determine the qualification requirements for licensing and to assess who is qualified, to establish and enforce standards of professional practice and ethics, to ensure that only qualified, licensed individuals engage in the practice of engineering and to impose disciplinary sanctions against engineers who contravene either the standards of practice, including competence, or ethics.

The Canadian Council of Professional Engineers is here to ensure that any regulatory regime, including that referenced in the draft legislation on AHR, respects the existing provincial legislation regarding the engineering professions and other self- regulated professions.

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[English]

On behalf of Canada's engineering profession, we would like to offer recommendations on the legislation in three areas. First, we support the position taken by the Canadian Medical Association, by members of the Canadian Health Coalition, and by others who have asked that legislation not contain sanctions against specific medical research or scientific activities. Instead, we recommend that legislation criminalize activities that are carried on without a licence or while defying licensing conditions established by the national regulatory body alluded to in the draft legislation.

Second, we strongly recommend that the draft legislation specify details of the national regulatory body set up to oversee assisted human reproduction. We feel that it's important to spell out its mandate, function, structure, composition, accountability, and reporting relationships. At the same time, however, we would advise that the legislation acknowledge the existing regulatory duties of Canada's self-regulating professions and incorporate their legislative authority into the federal legislative framework. We foresee a federal regulating body having jurisdiction only in areas not already covered by other regulatory authorities, such as the 12 provincial engineering licensing bodies or Canada's medical licensing bodies.

We also recommend that the federal body be legislated to include representation from the health profession, the engineering profession, the legal profession, the scientific community, infertile individuals, and other individuals from Canadian society. Because of obvious ethical factors in assisted human reproduction, we recommend that the legislation make specific provision to either create a new ethics body or mandate the use of existing ones. We urge that the engineering profession, as key members of the multidisciplinary team working in assisted human reproduction and as professionals bound by a code of ethics, have representation in any body governing ethical considerations.

Finally, Madam Chair, we turn to recommendations that deal specifically with engineering. I hope that through our brief today and today's presentation the committee members will appreciate just how involved engineers are in assisted human reproduction. Even though the field of bioengineering may be in its early stages, engineers already play a well-established role. Through our ongoing research and involvement with the profession across Canada, we are keenly aware of the increasing number of engineers moving into this area as advanced reproductive techniques see more widespread use. We need only look at the development of bioengineering in our universities as an indicator of growth. Engineers urge the federal government to recognize our role, our contribution, and our regulatory authority in engineering issues relating to assisted human reproduction.

Therefore, we recommend that the draft legislation and its regulations recognize that all engineering work related to assisted human reproduction must be carried out by licensed engineers. In this way, Canadians can be assured that engineering work is done by people with qualifications and experience, people who have made a commitment to standards of excellence and a code of ethics.

These recommendations are vital to protect public safety as assisted human reproduction practices continue to emerge. For that reason, we submit our final recommendation, namely that the engineering profession be specifically mentioned alongside the health profession in existing draft paragraph 17(c) and in any future amendments or references.

Madam Chair, we truly appreciate the significance of this first federal legislation on assisted human reproduction. We commend the committee members for their efforts to craft a law that will strike the right balance between the promise of assisted human reproduction technologies and the risk for human health, commercial exploitation, and unethical and unacceptable development. The Canadian Council of Professional Engineers thanks the Standing Committee on Health for allowing us to be a part of the consultation process on this groundbreaking draft legislation.

Thank you very much.

The Chair: Thank you, Ms. Lemay, and thank you, Dr. Runciman.

Our next witness will be Jean Haase, who is a social worker at the Infertility Clinic of the London Health Sciences Centre.

Ms. Haase.

Ms. Jean M. Haase (Social Worker, Infertility Clinic, London Health Sciences Centre): Thank you.

As a long-time advocate of legislation and regulation in this field, I would just like to say thank you to the committee for giving me the opportunity to make a presentation today.

For the past nine years I've been a social worker in a teaching hospital-based fertility clinic. This clinic is far from typical in that counselling and specialized support services in social work and psychology have been an integral part of service delivery for many years. I believe I am the only full-time social worker employed within such a clinic in Canada.

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I've had the opportunity to present and speak at many workshops and conferences on various aspects of infertility treatment, but primarily I've been focused on the ethical and psychosocial aspects of donor insemination. I've written on this subject and consulted with Health Canada and the advisory committee, as well as with fellow professionals at an international level.

Four years ago I founded a support network for those who have built their family this way. Some of the parents from that group have sent briefs to the committee that I know took a long time to think about and write. They would have very much welcomed the opportunity to come and talk in person, and I certainly hope their voices are not lost in this debate among professionals.

Today I've been asked specifically to present my thoughts and perspectives as a counsellor who works with those affected by reproductive technology: the recipients, the offspring, and the families. The following comments derive not only from my own professional experience, but that of other colleagues in this field, as well as from some of the research literature in this area.

In the medical setting, where most infertility treatment services are provided, the social, emotional, and ethical components of infertility receive comparatively little attention. The infertility consultation is often more about the achievement of a pregnancy than about the lifelong implications of family-building. Consequently, we have a situation in which many people faced with infertility problems lack much-needed emotional support, information, and therapeutic counselling.

The royal commission found that many recipients of infertility treatments would welcome greater access to specialized counselling services. Forums held in Toronto and elsewhere found that consumers of treatment often wished this kind of service was more readily available for them at all stages of their infertility experience.

Most often, we're dealing with people who have some form of fertility problem, but sometimes we see people who want to avoid passing on a genetic disease to their child, or in the case of single women and lesbian couples, people who have no male partner. Some people may be aware from the outset of their relationship that they're going to have trouble conceiving, but for most people it comes as a shock, and it really plunges them into a crisis.

The desire to have a child is a very significant and important goal, and for those who have been accustomed to planning other aspects of their lives with certainty and control, the loss of control over one's reproductive function is extremely difficult to come to terms with.

Even more difficult is the decision to enter into treatment—the invasiveness and discomfort of infertility treatment—which may be successful, but very often is not.

There's still a social stigma related to infertility. It often makes people feel out of step with the rest of society, as they look around and see everyone else having children with comparative ease.

When the recommended intervention involves the use of gametes from a third or fourth party, as in DI, a complexity of ethical and psychosocial issues are involved. Unlike IVF, where the physical aspects of treatment are often the greatest challenge, in DI the process may be technically simple, but the dynamics and issues arising from it are often profoundly complex and challenging.

Preparing any individual or couple for any form of assisted reproduction involves consideration of a most important third person, the child who is yet to be born, whose potential long-term interests must be considered, and who cannot speak for himself.

The term “counselling” is a rather generic term that is often misunderstood. I would guess most members of the medical team consider that they counsel patients at some point, whether it be the nurses discussing various aspects of the treatment process, or the doctors counselling patients about potential risks and benefits or side effects. However, the aspect of counselling that generally focuses on the providing of medical information should be clearly distinguished from that provided by a counselling professional like a social worker or psychologist, whose focus, training, and expertise is situated within the social and psychological domain, and who is the professional most likely to focus on the children to be born and the impact on the resulting family.

Counselling is often incorrectly seen as being necessary only for those with mental health problems or when they're in the midst of a crisis, but a counsellor can often help patients put their situation in perspective and help them deal with it more effectively.

There are so many issues that counsellors could be called on to address, for example, assisting with difficult decision-making, such as the disposition of frozen embryos; choosing between high-tech treatment like ICSI or DI; helping individuals manage their stress and manage the emotional impact better; providing marital counselling—infertility places tremendous stress on people's marital relationship; providing grief therapy—infertility is a huge loss on so many levels; providing education and preparation about donor conception issues, exploring ways with patients to discuss donor conception with their children and other family members; and perhaps making referrals to other resources in the community, such as for adoption and fostering, or those resources that specialize in helping people with multiple births. Most of all, we're often called upon to help patients to make those difficult decisions about ending their treatment and facing the rest of their life without children.

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Few clinics in Canada employ a full-time counsellor on staff, although some may be able to direct patients to a counsellor who has experience in infertility in private practice. In the latter situation, the patient would have to pay the counselling fees directly to the counsellor, but when the counselling is provided in the clinic setting, the cost of the service is usually included. When counselling is integrated into the clinic, it's perhaps easier to present it as a routine aspect of their preparation, and the message for the recipients in that situation is that infertility is more than a medical problem, and their emotional needs and psychosocial concerns are also important to the team.

The counsellor, as part of the team, can probably advocate for patients more easily and facilitate their communication with the medical staff. They can provide education and training to the staff regarding the psychosocial and emotional issues associated with the patients' care. The counsellor in the clinic is also more readily available if a patient encounters a crisis, such as no fetal heartbeat on an ultrasound, the failure of frozen embryos to survive thawing, or the diagnosis of a multiple pregnancy.

An argument against the counsellor being a member of the treatment team might be, however, that they may not be perceived as quite so independent.

Infertility counselling outside the clinic may support a perception that counselling is a service required only by those with some emotional weakness or extreme difficulties coping. And counsellors in independent practice, who must rely on the medical professionals for referrals, and, therefore, for their income, may find they are expected to tailor this counselling in a certain way in order to continue receiving those referrals.

There are pros and cons to the view that counselling should be mandated. In some jurisdictions where counselling is mandated, like the state of Victoria in Australia, it's sometimes seen as merely a rubber stamp, or one more hoop to jump through. Some counsellors there have complained that the counselling sessions are often scheduled on the same day treatment begins, which really limits their value.

I believe there's a strong argument, however, to be made that when the use of donor gametes is being contemplated, both donors and recipients should have preparatory counselling.

Adoption experiences have shown that raising a child genetically unrelated to the parents creates some different demands on the parents in addition to those associated with conventional parenting. There is a lack of long-term, follow-up studies on families created through donor conception, but evidence is now emerging from a number of sources that many of them endure quite a number of stresses. It has to be said that a major source of the stress has been the degree of secrecy that's been imposed or strongly encouraged by clinics, specifically the medical profession. The resulting social stigma associated with donor conception has been very unhelpful to the establishment of healthy families.

In terms of the legislation and regulation, I have already submitted a brief in which I've noted a number of comments about such aspects as commercialization and informed consent, but I just want to speak to one or two things here today.

In terms of the preamble, which speaks to the paramount need for measures to protect the best interests of children, as the parties most directly impacted by reproductive technology, those created by them must have their interests and rights protected. Up to the present time, however—and in keeping with the dominant medical model—it's been common practice for the interests and rights of the adults—in other words, the donors, the recipients, and the providers of services—to predominate. I anticipate there may be some difficulty in applying and interpreting the principle of best interests of children.

In settings where there is no counsellor and the determination of children's best interests rests with the professionals who are more accustomed to the medical side of things, how is an assessment of children's best interests to be made? Would it be appropriate to expect counsellors to be the sole gatekeepers when the suitability of applicants is being considered?

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Some may view infertility treatment as being a right regardless of the appropriateness of their request. The regulatory body, when established, will hopefully assist providers with guidelines for ensuring that the welfare of children is defined and given its rightful prominence.

In terms of the establishment of a birth register, I see that as essential and a very welcome aspect of regulation. It's very much a concern that at present the number of children born from each donor is not known. A register will enable this to be controlled. It will also ensure that in the future records are not destroyed. If a birth register is to be set up in the near future, it's important to note that this will quite possibly create some issues for those offspring who have no access to their records or fear that if there are any, they will ultimately be destroyed.

In the development of a birth registry, however, it is important for the legal status of all those who have their name in the register to be clarified under the law. Given the current legal vacuum regarding donor conception in most provinces, a requirement for donors to be listed in a register might be a deterrent if they have no legal protection.

Similarly, parents of donor-conceived children have expressed concern that their chosen method of building their family has no legal status. They believe that the sperm or egg donors should have neither legal entitlements nor responsibilities. They would like this issue to be addressed.

The aspect of regulation about which I'm most concerned relates to an apparent contradiction that I see inherent in placing the rights of children born from reproductive technology above all others and yet proposing the establishment of a system that is potentially discriminatory against them in terms of access to the identifying information about their gamete donors.

The proposal to allow donors who are making a free decision as adults to opt out of having their identities ultimately known is placing their rights above those of the offspring. Such a system would establish a form of discrimination, and I feel it would be potentially damaging to children and families in the future. It's quite possible that under that system, donor-conceived children within the same family would have different rights based on whether their parents had chosen or had access to an identifiable or non-identifiable donor.

I've seen a significant change in attitudes toward openness and information sharing. Many parents are now choosing to be open with their children and their family about having used a technology such as DI, and there's evidence that those who use egg donation are much less likely to be secretive about it. Yet having had little option but to use anonymous donors, some parents have expressed concerns that their children might grow up to be troubled or frustrated about not being able to know who the donor was, if that were their wish.

At our most recent group meeting, parents also expressed concerns about not being able to protect their children's future health because of a lack of up-to-date medical information.

An increasing number of adults are now learning about their donor conception, and many are voicing concerns about the loss of their genetic identity, which resonate very strongly with those of adoptees from closed adoption systems.

These issues are only going to become more prominent in years to come, and I think it's appropriate to expect that the government will take steps to protect the future rights of all of those born from reproductive technology, not just those who happen to have parents who chose a donor that was identifiable.

Much more effort needs to go into increasing awareness and providing education about these newer ways of forming families, because they're going to raise a lot of issues down the road. Those of us who work in this field are going to be asked to be accountable in the future and to explain why we never gave the people born from reproductive technology enough attention.

Counsellors are increasingly likely to come into contact with these families in the future, and some might be struggling to deal with the particular dynamics associated with them. So the role of the counsellor does not have to end when the infertility treatment ends. There is a lot of potential for counsellors to provide follow-up help to families.

Given the proposed establishment of a birth register, donor-conceived offspring and others will quite possibly have future needs associated with the sharing of this information. It's not clear under the draft regulations whether individuals will be able to ascertain if indeed their conception did result from donated gametes.

In conclusion, the provision of counselling facilitates a more holistic, psychosocial approach to fertility treatment. The need for medically oriented professionals has never been questioned, but there has been resistance so far in this field to the inclusion of counselling services. There's a lack of understanding about the contribution, knowledge base, skills, and values of such professionals.

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Not only is there a need for this counselling to be provided as a preparation or orientation to treatment, but there is considerable scope for follow-up support and assistance to the families.

There's undoubtedly a need for more counsellors to be trained and available to work in this field. The training and accreditation process for counsellors could draw on existing standards, such as those that have been developed in countries such as the U.K., Australia, and New Zealand. It could also look at the existing standards for regulated professions, such as social work and psychology.

Licensing for clinics should take into account both the accessibility and the quality of counselling services. Often counselling is seen as little more than the application of common sense, rather than as a specialized field, like the other disciplines on the health care team.

Finally, I'd very much like the regulatory body to include a counsellor who is familiar with these kinds of issues. We must not lose sight in the midst of all the scientific and technical wonders of assisted reproduction that at the end of the day it is about the creation of families, not just the achievement of pregnancies.

Thank you.

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

We'll move on to the Infertility Awareness Association of Canada, and we welcome Dr. Barwin, who welcomed us so generously to his clinic last week. With him is Justine Espenant, who is the former executive director of that association. I'm not sure which of you wants to lead off.

Dr. Norman B. Barwin (Director, Gynaecology and Infertility Clinic, Ottawa; Infertility Awareness Association of Canada, Inc.): Thank you very much for the opportunity to present before you today. I'm glad that Justine, who was very much involved in the legislation, is able to join me today.

My message is really going to be on just a number of issues rather than going to a whole dissertation on the total legislation.

I just want to draw to the attention of the committee that IAAC is a national charitable consumer organization offering support and education to individuals with fertility concerns. Therefore, we feel that representing the consumer, we are qualified to comment on this legislation.

One of our issues is that—

The Chair: Excuse me, Doctor Barwin, I don't know what you mean when you say you're representing the consumer.

Dr. Norman Barwin: IAAC is a consumer organization, and I work as a volunteer with that consumer organization.

The Chair: I don't understand. What are these people consuming?

Dr. Norman Barwin: Sorry. It's a patients organization.

The Chair: So it's patients.

Dr. Norman Barwin: Yes.

The Chair: Okay. Thank you.

Dr. Norman Barwin: We would like to emphasize that infertility is a medical condition with profound social and psychological implications that warrants access to safe and effective treatment and that the health and welfare of infertility patients and their children is the primary outcome by which relevant guidelines, regulations, and legislation should be measured.

The legislation and regulations must be evidence-based and must balance the benefits and risks of infertility treatments and adhere to principles of equity and fairness. We've seen that, unfortunately, across Canada infertility services are not accessible to all due to a lack of services in certain parts of the country and a lack of funding, and that we do indeed have this two-tier system, particularly with the assisted reproductive technologies.

Due to the profound consequences of infertility for many individuals, this area of medicine and science should be a high priority for clinical care, education, and research. Medical practice must be open and accountable while respecting the confidentiality and privacy of individuals and the doctor-patient relationship.

Any system of regulation must be able to respond with efficiency and effectiveness to the rapid changes that occur in the reproductive and genetic sciences in medicine.

We commend this bill in that it recognizes the importance of enhancing the safety and efficacy by licensing sperm banks. We see that part of the bill being put into effect with standards and quality of care in terms of sperm banks.

We also applaud the bill in its efforts to prevent infertility through education, bearing in mind that not all infertility is preventable, such as endometriosis.

In regard to the bill itself, there are just a few issues I want to draw the committee's attention to. One is that we feel very strongly that there should be compensation of legitimate expenses incurred to donate gametes. These expenses must be exclusive of any fees that would be considered by an impartial party to be payment for gametes; in other words, the payment of their expenses.

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On the question of shared gametes.... For example, with IVF, there's a system available in the United Kingdom where if a patient has in vitro fertilization, because in vitro fertilization is not covered, if a patient who is younger donates a gamete, her expenses can be covered by someone who is in a position to afford the IVF procedure. We believe that perhaps the sharing of gametes should be permitted under these circumstances because often those who can ill afford it may have problems in acquiring the new reproductive technologies. The possibility of having access to their treatment being funded and the sharing of gametes in that way may offer coverage to those who otherwise would not be able to afford this procedure.

We very heartily agree that a legal requirement for all fertility clinics to obtain a licence and accreditation be adopted in Canada. As you know, at the recent Canadian Fertility and Andrology Society meeting, the accreditation process was approved by that committee. Also, we believe that offspring resulting from assisted reproductive technologies should be given identifying access to all relevant medical information from their biological parents. We feel that the idea of a registry of donors, as was said so eloquently by Jean, is an important part of dealing with this particular branch of infertility.

As regards embryo research, this has been going on, as you know, for many years. There have been many advances made in medicine from the days when IVF was first created by Professor Edwards in Cambridge.

There is a conception that embryo research directly reflects that this is stem cell research and stem cell application. The majority of research that is done on embryos is not stem cell research. Just today I got a bulletin—it was probably the update—from the American National Institutes of Health in which, it was interesting to note, they said their registry lists the human embryonic stem cell lines at varying stages of development that meet eligibility criteria.

We feel this registry would at least get away with some of the issues around embryo research. Really, the purpose of stem cell research is to improve the quality of life and perhaps prevent diseases and reduce the incidence of the severity of certain diseases in people who are so afflicted.

With those few words, I would like to hand it over to Justine Espenant.

Ms. Justine Espenant (Spokesperson, Infertility Awareness Association of Canada): Thank you very much.

Good morning. Bonjour.

Madam Chair and members of the committee, I speak not from a prepared script but straight from my heart.

I have personally experienced difficulty getting pregnant—my husband and I. My background is in nursing. It was a terrible devastation for both my husband and me not to conceive, as we were prepared by society for it to happen naturally.

I thank you very much for the opportunity to speak with you this morning to enlighten some of my perspectives that come about from the legislative draft proposal. Having worked with the Infertility Awareness Association for two and half years as the executive director, I have gained incredible experience, not only from having personally experienced infertility but by being an active participant in helping patients better understand how to gain access to education, support, and awareness about their conditions.

I'm currently not working with the Infertility Awareness Association but have been asked to come here today as I was also very actively involved with the reproductive and genetic technologies working group with Health Canada last year and offered the patient perspective on many of the discussions that were included in the proposal with the discussion paper for that, which eventually led to the draft legislation.

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One of the concerns I have that's paramount to everything being done with regard to the legislation is that of understanding what difficulty getting pregnant really means. Without that difficulty, you don't have any of these reproductive technologies created. If everyone could get pregnant easily, none of this would exist.

So we need to have a basic understanding of what difficulty getting pregnant really means. Unfortunately, I shudder to hear words like “sterility” and even the word “infertility”, because those words do not exist in and of themselves. Within that, there's a subgroup call “sub-fertility”, and that is purely the difficulty to get pregnant. Currently, with the technologies available, 70% of all couples or individuals do build their families. That is a very positive outcome.

I cringe at the word “infertility” because it has that sterility, virility, sexual connotation, when all it is is that there are some obstacles that individuals are experiencing that are usually medically based and that need to be cured. As such, this is not just legislation regarding social aspects but very much medical aspects, and this cannot be forgotten, which is why the medical field is very much a part of this.

I very much enjoyed Jean's presentation this morning as she was incredibly eloquent in describing the needs for counselling, which is a huge part of it. What that really boils down to is having Canadians who are having difficulty getting pregnant better understand what is involved in their treatments. The counsellor really is that front-line person to help individuals understand what they're going through.

One of the concerns I have in looking at the legislation is how are Canadians going to interpret this. When I read cloning and the putting together of animal and human genes, that's not what this is about. This is about Mr. and Mrs. X trying to build a family. The majority of these individuals require very simple treatment. They do not require these high-level, high-tech treatments such as in vitro fertilization or perhaps intracytoplasmic sperm injection, or even using donor gametes. Most of them perhaps just require the clearing up of an infection.

But there is a whole spectrum of treatment required by all these individuals, and at the bottom line, I wouldn't want Canadians to lose the ability to have access to those treatments because the legislation perhaps makes it more difficult for clinics to offer their services. By that, I mean if the legislation is so complex and requires so much administration and paperwork, then what ends up potentially happening—and this has been discussed many times—is that the cost of treatment will go up. Who has $5,000 to spare? That is the cost of in vitro fertilization. Currently, it is only those individuals in society who have $5,000 to spare who can gain access to in vitro fertilization. So really it is a treatment for the rich. In effect, it is a type of discrimination. Currently, none of the provinces in Canada will ubiquitously cover IVF. In Ontario, there's some coverage for bilateral blocked Fallopian tubes, but that's still a very small aspect of what should be covered.

It becomes a joke because most Canadians do not have access to treatment and yet there's legislation out there wanting to cover it. I'm not sure if I'm conveying that discrepancy. It's not available to all Canadians, yet there is this select group who has access to it and then there is legislation that covers it.

As well, there's one point that I have said many times, and I would like to repeat: with a registry it was seen within the legislation as important to have success rates or clinical results listed across Canada. I would like to have the opportunity to formally define what a success rate is. Nature's naturally occurring success rate in the privacy of our private quarters is 25% per given cycle. When we look at clinics, I've heard professionals and lawyers state, when discussing reproductive technology, that clinics only have a 20% success rate. So how effective are they? If they're approximating nature and getting 20% to 25% success rates, then that is 100% success.

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I think it is so important to understand the definitions and the perspectives behind what we're talking about. The regulatory agency, which was not spoken about in the draft legislation and which I'm hoping will be included in any amendments, should have input from professionals, patient bodies, and councillors so that the definitions and perspectives can be clear to everybody. This is a very complex area, one that requires an incredible amount of expertise.

I have a nursing background, and I did two years of science. I personally went through infertility, and I still have trouble keeping up with the science coming through. In the two and a half years I worked as the executive director, I read research articles, I participated in professional meetings, I talked to patients on support lines as they were going through their crises, and I worked with clinics across the country. Even then, I still did not feel that my knowledge of the issues was 100%.

Yet we're asking members of this committee to review legislation when perhaps they have not themselves been brought up to speed per se on all the issues. The issues change rapidly, and two months from now there will be new ones. I guarantee it. There will be new issues you will be tempted to add and cover with this legislation, which is why this legislation could in reality take five years to finalize. This is why the addition of provisions giving the flexibility to amend the legislation in five years is so important; there will be changes that are needed.

On behalf of the Infertility Awareness Association, we do support a shared regulatory body outside Health Canada, at arm's length from Health Canada, so there can be a collaborative participation in the regulatory aspects of reproductive technologies.

Thank you very much for the opportunity to speak this morning. Should you have any questions, I would welcome them later.

The Chair: Thank you very much, Dr. Barwin and Ms. Espenant.

We'll now go the National Council of Women, and we have Ruth Brown here, who is a past president and is now the national health convener. Welcome, Ms. Brown.

Ms. Ruth Brown (National Health Convener and Past President, National Council of Women of Canada): Thank you very much, Madam Chairman and committee members.

Women are major stakeholders in the area of assisted human reproduction, so the National Council really welcomes the opportunity to present our views to this committee. I regret that we've had very short notice, and I don't feel we've been able to make as complete a response as we would have liked.

I'll just give a bit of information about the National Council. I'm not sure if you're all aware of it. It's a federation whose members include five provincial councils of women, 18 local councils of women, a couple of study groups, and 27 affiliated national organizations. It's been an advocate on women's issues since 1893, so it has a long history. Its advocacy is based on policies that are initiated at the local level, circulated to members, and discussed and voted on at annual meetings.

The policies developed represent the views of a large network of Canadian women, and reproductive technology is a subject that has been of interest to our members for some years. In 1988 local councils of women across the country organized educational programs to raise awareness among their members and the public about the new reproductive technologies and some of the social, ethical, and medical issues they raised. This was followed by a comprehensive questionnaire to all members in 1989. In 1991 we presented a brief to the royal commission. In 1994 we responded to their recommendations, and we made another submission in 1997 on Bill C-47.

We've continued to discuss this at annual meetings, so this submission is based on the policies that have been developed over those years.

Before addressing the specifics of the proposed legislation, I would like to point out one major recommendation we made to the royal commission in 1991. It was for the establishment of a national council on bioethics for ongoing study and evaluation of advances in biotechnology—which is such a changing field—a council that could offer advice to the government and develop national standards and guidelines for researchers and practitioners.

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We recommended at that time that such a body should be made up of medical personnel with research experience, representatives of other disciplines, such as law, philosophy, religion, nursing, and education—maybe engineers too—that there should be as well some lay representation, and that women should represent at least half the members of the committee.

We also recommended that there be an ethics committee in every institution where human research is undertaken, to approve and monitor the research. More recently, we urged the government to set up a parliamentary committee or task force to study the use of patents involving human biological material and the methods of ensuring that results of basic research in this field remain in the public domain. We continue to urge the government to give serious consideration to these recommendations.

Coming to the legislation itself, in the area of prohibited activities, our policies would strongly support prohibition in: cloning of human embryos for the purpose of creating another individual; fusion of a human cell or embryo with the cell or embryo of another species; trans-species fertilization involving human eggs and sperm; stem cell research, which involves the use of stem cells to create human embryos solely for the purpose of research; sex selection, except when related to health; and the selling or purchasing of in vitro embryos or sperm or ova.

As far as surrogacy is concerned, we strongly agree with the proposal to prohibit commercial arrangements for surrogate motherhood and to prohibit surrogate arrangements involving anyone under 18. We also believe counselling must be provided to both the commissioning couple and the surrogate mother before the completion of any surrogacy arrangements and that there should be a waiting period after the birth of the child before the recognition of the child's new status is final.

We recognize the intense desire to have children that motivates some infertile couples, but we believe that much caution is indicated in a process that will almost certainly involve some bonding between the surrogate mother and the child in her womb during the nine months she carries that child, with unpredictable consequences after the child is born.

As far as controlled activities are concerned, in 1999 the National Council urged the government to establish a regulatory body for reproductive and genetic technologies that would set standards of practice, license clinics to carry out procedures, and also monitor compliance with regulations and standards of quality.

The new legislation, it seems to me, begins to address these issues in terms of awarding licences and monitoring compliance with the terms of the licence, but does not set up a regulatory body outside the ministry of health, nor does it seem to address the question of standards. The National Council believes the interests of the child who is the product of the new reproductive technology must be taken into account, and indeed those interests are of the first importance.

This has implications in a lot of areas:

(1) donor screening: there should be comprehensive and nationally accepted standards of donor screening for artificial insemination procedures, including the keeping of comprehensive health records for each donor along with his genetic background, and regulations as to how often sperm from one donor may be used;

(2) the clients of assisted human reproduction programs should meet the criteria for eligibility to adopt a child under any current laws;

(3) provincial and territorial governments should adopt birth registration for children produced through assisted human reproduction that would ensure the integrity of birth records through maintaining a record of both the biological and the societal parents of the child;

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(4) provincial and territorial governments should enact legislation and maintain the necessary records so that the child/adult born of these procedures will be able to determine his or her biological origins under conditions established by the provincial or territorial guidelines, but with the stipulation that no legal claims would exist between the child or adult and the donor.

Concerning counselling, I couldn't agree with Jean more. We also want to stress the importance of counselling by professionally trained counsellors for everyone involved in the research and application of assisted human reproduction. Those undertaking it need to understand the procedure involved, the risks of the procedure—including the experimental aspects—the odds of success, and the legal implications. They will also need emotional counselling, and they'll need help in considering the possible psychological or genetic problems their child may face in the future.

We understand that some of the risks associated with in vitro fertilization are infection, vaginal bleeding, and/or multiple births. A woman undertaking assisted human reproduction should have a clear understanding of these risks, including the risks to her health and well-being, to the children's health, and to the family's ability to cope should the procedure result in multiple births.

On consent in general, National Council policy has stressed the importance of obtaining written consent before health information is shared. In the area of stem cell research using either human fetal tissue or human embryos left over from in vitro fertilization, we would want legislation to require that informed consent be obtained from the donor of tissue or embryo and that the consent be obtained under conditions where no pressure is involved.

Thank you very much.

The Chair: Thank you, Ms. Brown.

I think it's really interesting to us. We've been wrestling with a lot of this for months now, and pretty well every presenter this morning I have found affirming the way I feel the committee is going in making decisions on some of these major topics. So we thank you.

I thought it was also interesting that the difference in the description of counselling between Ms. Haase and Ms. Espenant made it clear to me there are two completely different kinds of counselling.

One is the medical side, which is to have a really clear understanding of what's going to happen to your body, etc.—those kinds of implications—which is what Ms. Espenant talked about.

What Ms. Haase is saying describes a much more profound kind of counselling around the building of family and around the long-term implications. I assume in there, Ms. Haase, you've also got to prepare people for the fact that it may not be successful for those who have a very complicated medical problem. There's always the possibility they come to you feeling they're not a success, and at the end of it all they might feel even worse. I would think that—

Ms. Jean Haase: Yes, absolutely. The whole process of repeated cycles of treatment and repeated failures has a devastating effect on people.

The Chair: Exactly.

Ms. Jean Haase: At the end of the process they're often feeling very emotionally battered.

I have quite a bit of liaison with colleagues who work in the adoption field, which is often the next step for those people. They're saying to me, “They're coming to us talking about adoption but they're not really ready, because they haven't really come to terms yet with the whole—”

The Chair: The loss.

Ms. Jean Haase: “—situation they went through.” In fact I have a graduate student working with me at the moment who is from the field of adoption, and she wants to learn more about the piece that happens to people before they get to the adoption agency.

The Chair: Thank you very much.

I just wanted to say to everybody thank you very much. We've all been nodding at each other through these presentations because we've had some of these conversations before.

We'll begin with Mr. Merrifield.

Mr. Rob Merrifield (Yellowhead, Canadian Alliance): I'd like to thank you very much for your presentations.

As Ms. Brown is saying, when it comes to the best interests of the children in this piece of legislation, I think we all would agree, and I think you do as well.

One of the things that concerns me just a little is the whole idea of counselling. I think we agree we should be counselling. I think it's an appropriate thing. I guess what I'm torn about is we also have counselling when we have adoption and adoption agencies.

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What seems to be missed so much is the face behind the Petri dish, if I can put it that way. Do we have the same concern of the best interests of the face behind the Petri dish as we do with a child in an adoption agency? Do we apply the same standards?

Maybe, Ms. Haase, you could comment on that when you're counselling, because I think it's the issue.

Ms. Jean Haase: The field of adoption has grown up within a very different environment. When one is looking at adoption, the child is usually in existence and the decisions are being made in their best interest. That's taken for granted. It's also taken for granted that there are different things to learn about adoption.

When people are going through a process where they're going to have their own biological child—I'm not talking about the use of donor gametes—many people feel it's very intrusive and not necessary to start screening them in the same way. It's a very controversial issue. Should we be screening prospective parents, or should we be educating them and orienting them to the process?

Requiring them to have something like a home study would be very invasive. On the other hand, they need a lot of education. When you're going to adopt a child, you go through a whole orientation process and that's expected, but I don't think it's really been done so far in the medical field. I think the focus has all been on medicine and less on the other issues. So we have the whole thing developing in a very different arena.

Mr. Rob Merrifield: I believe that's very true. I just want to make the point that it is a different arena because of the different development of the child. Yet we're dealing with a piece of legislation, and its preamble suggests “in the best interests of the children”. That gets back to what Ms. Espenant was suggesting.

You made a statement, and I agree with it fully, that this bill deals with reproductive technology. But then why are we talking about Primera, stem cell research, cloning, and many things that are very scientific on the research side under reproductive technologies, because they're so different? Nonetheless, we're dealing with them.

The part of reproductive technologies you've probably experienced is the embryos. Part of this legislation comes down to what to do with the extra embryos. Do you have a view? I notice you didn't comment on that at all. What do you feel should happen with those? Is that appropriate?

Ms. Justine Espenant: My philosophy is that making informed decisions needs to be paramount to everything we do with patients. If an individual or couples are going through treatment for in vitro fertilization whereby embryos are created, and they are not making informed decisions on what their options are with the embryos that are not used, that needs to be the number one priority. Or is the clinic making the decision on their behalf?

I would say several years ago perhaps that was the issue. Now I'm not sure if most clinics would give a couple the options of freezing their embryos, discarding them—correct me if I'm wrong—or using them for research. That's very much an informed decision for the couples to take.

It perhaps crosses the line into a very uncomfortable area when we get into the issue of right to life and how an embryo is considered a life form, but yet it is not a fetus. So that crosses into, as we know, a very uncomfortable territory of debate in other areas that have occurred, with regard to abortion.

It's very difficult for me to say, in talking with patients and in discussions we've had on our board with IAAC, what would be the best way to go. Ultimately there needs to be some direction. The principle that needs to be followed is for individuals who have created embryos to make an informed decision about what will happen to those embryos after treatment. It should not be taken into the hands of the professionals at the clinic without the consensus of those individuals who created the embryos.

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Mr. Rob Merrifield: Just one further thing with Dr. Barwin. I certainly appreciated the tour we had of your clinic the other day. I asked you a question at that time and you answered it very clearly. I wonder, for the record, if you would answer it again here.

This whole area of what to do with the embryo would be solved very easily if we could freeze ova. You suggested that is being done and research has been developing. Can you tell us how advanced that is and comment on that?

Dr. Norman Barwin: The situation is that if Bill C-47 had been approved, certain areas in that particular bill would not have come to pass. For example, I think I mentioned to you about in vitro maturation, where they can actually take an ovum and develop it in a Petri dish to a certain maturity, and subsequently of course fertilize it. That way the patient doesn't have to go through the risk of having medication and all the complications of medication.

They've really been able to extract ova eight days from the first day of menstruation and have been able to develop them in vitro, with a view to subsequently fertilizing them and implanting them.

As far as ovum freezing is concerned, which would really be a great advance, there has not been all that much success with it. In Melbourne, Australia, there's been tremendous success with ovum freezing, and we hope eventually the technology will reach to such a degree that we'll have that success in Canada.

Currently, for patients undergoing cancer therapy, we have been successful in taking part of the ovary and freezing it. After the patient has undergone treatment, that frozen section of the ovary is recovered and implanted into the patient. It can be put into her arm, where it undergoes the ovulation process and ova can be retrieved from that area.

Currently, because the ovary is such a dynamic organ, the recovery rate from ovum freezing has not been as successful as we would have liked it to be. No doubt with the advances in technology this will improve, and certainly from the Australian experience they seem to be on the road to finding some solutions.

Mr. Rob Merrifield: Thank you.

I have just one more quick one for Ms. Brown.

Your recommendation is that surrogacy should or could happen over the age of 18. Is an 18-year-old, in your estimation as a woman's advocate, of significant enough maturity and age to get into the realm of surrogacy? This is something that bothers me a little bit.

Ms. Ruth Brown: And 18-year-olds vary tremendously, of course. Some are mature and some aren't. If you have to draw some kind of line, that's an adult-child line in most....

Mr. Rob Merrifield: So that's why it's 18.

Ms. Ruth Brown: Yes.

Mr. Rob Merrifield: We had witnesses here last time suggesting that perhaps there should be another criteria rather than age—more maturity. Maybe that's where the counselling comes in.

Ms. Ruth Brown: That's very hard to establish criteria for.

Mr. Rob Merrifield: If we're going to err, should we not err more on the side of safety?

Ms. Ruth Brown: Well, of course.

Dr. Norman Barwin: I think there's general opposition to the idea of commercial surrogacy. There are still a lot of debates about commercial surrogacy, in other words, paying a surrogate rather than using a voluntary person with no money exchanged—that kind of inducement.

Mr. Rob Merrifield: You suggested that a younger gamete donor should donate to an older one. I didn't quite catch exactly what you were suggesting.

Dr. Norman Barwin: For example, it's been shown that after the age of 35 there's a tremendous decline in fertility rates, and after 40 even more so. It has been shown that for the success rate even with the IVF program, the younger the patient, the greater the success rate. For example, for a woman over 40, overall after three attempts there's a 13% success rate. For a woman under 35 the success rate is in the order of about 35%, depending on the clinic that is reporting the results. So there's a tremendous difference in the success rates. A woman over 40 carries some genetic risk as well since the quality of her eggs may not be as good. Eggs from a younger woman do have higher success rates than those of the—

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Mr. Rob Merrifield: I understand that part. What I'm trying to get a handle on, and what I'm a little uncomfortable with, is that you are suggesting we should be compensating for the donation and getting away from commodification and exploitation in that area. Your suggestion that we use the younger surrogate is something that makes me a little uncomfortable. Of course, you're from the scientific side of it, and you're saying the younger ones are the most productive. That's where you're coming from.

Dr. Norman Barwin: No, we're completely opposed to any commercialization. I'm going to say that loud and clear. The acceptable age is one of the great debates that goes on: is a person of 18 old enough—I suppose she's old enough to vote—to make that decision? As far as commercialization is concerned, we are strongly opposed to that.

Mr. Rob Merrifield: Thank you.

The Chair: Thank you, Mr. Merrifield.

We'll go to Madame Picard.

[Translation]

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

Thank you all for your testimony that I very much appreciated. I have a question for Ms. Espenant. Your comment concerning the feelings of the members of this committee toward the draft legislation are well-founded because we are legislators above all, not scientists. Now, the draft legislation more or less contains three sections. There is genetic engineering for the purposes of reproduction with all the acts that are prohibited. There is also a part dealing with research for therapeutical purposes and another one on assisted reproduction. It is very complicated for us at some point to sort all that out.

I was there when the Baird report was tabled. At the time, we were dealing with assisted reproduction and prohibited acts, like cloning for reproductive purposes, but there was no mention of therapeutic purposes. Now we are talking about research for therapeutic purposes. There was also mention in the Baird report of causes and treatment of infertility. There is no mention of it here and I am extremely concerned.

However I noticed that you are allergic to the words “sterility” and “infertility”. Which words could we use so they seem more acceptable to you? You also said that we need a regulatory body in Canada, but outside Health Canada. What do you mean? And how do you see this regulatory body?

Ms. Justine Espenant: Thank you. Can I answer in English?

Ms. Pauline Picard: Yes.

Ms. Justine Espenant: I understood everything in French but...

Ms. Pauline Picard: Go ahead.

Ms. Justine Espenant: I did not even notice that I was speaking in French. I am bilingual but I would not want to make mistakes.

[English]

If I could find a word for “infertility” other than “infertility”, I would create it. Perhaps this morning we could do that together as a group. “Sub-fertility” is an appropriate clinical way to say it, as is “difficulty getting pregnant”. “Infertility” gives the impression of sterility, barrenness, and inability to conceive, when in fact that is not the case. It is the difficulty to conceive or the difficulty to carry a child to term. The case of repeated miscarriages also falls into the category of infertility. It's not just the ability to create an embryo or to have fertilization; it's also the ability to have a child. Whether it is a difficulty on the male or female part, it's about difficulty conceiving or delivering a child.

I would love to have a new word in our English language, and I have said that for many years. “Sub-fertility” is the best I can come up with until an individual is proven to be completely infertile. Who knows when that point is?

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I recently attended an evening with some friends, and one friend's sister had conceived a beautiful baby after what might have been her 12th, even 16th IVF. I just about fainted because I cannot imagine going through that many. But IVF, if it is successful, will typically be successful by the third treatment. Being diagnosed as infertile is really a process rather than a concept.

With respect to the second question, a shared regulatory model as a sequela to the legislation would be a way of regulating and setting standards and codes of practice. For that to be done solely within the federal mandate of Health Canada would, I think, be too constraining. It needs to be a shared model. There needs to be input from professionals and from—we say “consumers”, which perhaps is a language that is internal and one we shouldn't use—clients. That might be a—

The Chair: It implies economics and the exchange of money, which you don't want to imply, I think.

Ms. Justine Espenant: “Clients” would be a more appropriate term because within the health care field the words “client” and “patient” are very often interchangeable. I'm comfortable saying that. The word “consumer” is an archaic word that has somehow continued in use.

There needs to be input from all these bodies, professional bodies and the public, so together with Health Canada there can be regulatory aspects applied to the field of assisted reproductive technologies. It has to be a working together because it's important that it be so. I cannot imagine regulating a field without having the input from those who understand it. That's really what is most important, and it makes good sense.

I hope I've answered your question. Merci.

[Translation]

Ms. Pauline Picard: Thank you.

[English]

The Chair: Thank you, Madame Picard.

Mr. Lunney.

Mr. James Lunney (Nanaimo—Alberni, Canadian Alliance): Thank you, Madam Chair. I too would like to thank the witnesses for their testimony today. It has been very helpful.

I would like to go back to something that's been mentioned briefly already, and it has to do with comments by Ms. Haase with regard to counselling. I was interested in the fact that you said, I believe, that you were the only known social worker in the country involved full-time with a focus on the family and the children who were going to be produced, hopefully, those who are going to be the outcomes of this procedure.

You talked about the psychosocial and emotional overtones that affect families. You also talked about many of the challenges that have been referred to and the disappointments that are sometimes associated with the technology.

I would just like to ask this for the record. I believe we've heard this before, but just bring me up to speed again. How many clinics are we dealing with in the country? Would you have anything further to contribute regarding social workers and this type of counselling with a family focus and as to why it isn't happening?

Ms. Jean Haase: I think those clinics that are situated within a hospital are more likely to have a social worker associated with them. Maybe that service has grown out of an obstetrical program in the hospital, and there's been a social worker associated with it. There are two clinics in Ontario besides the one I work at. They each have a part-time social worker; they also work in another area of the hospital, but they do have some social work coverage.

The reason there are not more counsellors is that most of these services have been developed in the private sector. Counselling is seen as a frill, as an extra, and only as something a few people might want or need. It hasn't been routinely there and incorporated into the whole service.

In terms of how many clinics there are overall, I would just be taking a guess. Of clinics that do high-tech treatment like in vitro, there are probably a couple of dozen at the most. But there are, remember, also a number of professionals who just do low-technology infertility treatment, who just provide maybe fertility drugs, or who do inseminations. DI is actually done in quite a lot of places, not necessarily in a big infertility clinic. But I don't actually have the numbers available about how many clinics there are across the country. I know that most of them are in Ontario.

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Mr. James Lunney: Does Dr. Barwin have anything to add to that?

Dr. Norman Barwin: Certainly with each of the teaching hospitals—there are 16 medical schools in Canada—there are IVF clinics. I think Toronto has an additional 8 to 10, haven't they? In Vancouver there's a private clinic, and in Winnipeg a private IVF clinic has just opened.

I know certainly the Vancouver clinic I visited just prior to the Canadian Fertility and Andrology Society meeting has a psychologist. Many have a psychologist on full-time staff. So I would agree with you. I think it's much more likely at a teaching institution, but I think most clinics do provide a counselling service, be it a psychologist.... I'm not aware of any social workers, which I think is a—

Ms. Jean Haase: Yes, there are. There are some in private practice.

Dr. Norman Barwin: Certainly most psychologists and most patients do go through psychological counselling. In fact, part of the cost of IVF is that counselling that patients have even before they see the physician.

Ms. Jean Haase: I would disagree, Dr. Barwin. Most of them don't go through psychological counselling. That's not the case.

Dr. Norman Barwin: Well, I can only talk about the Civic Hospital program, where they do have psychological—

Ms. Jean Haase: Yes, but we're talking about across the whole country. Are these services available to patients generally, and easily and accessibly? The answer is no.

Dr. Norman Barwin: I'm talking just for high-tech stuff, not for....

Ms. Jean Haase: The issues are just as important in low-technology.

Dr. Norman Barwin: Absolutely.

Ms. Jean Haase: The counselling would be just as important there.

Dr. Norman Barwin: I have a low-tech clinic and a psychologist on staff as part of that service.

Mr. James Lunney: Thank you.

I'd like to go another way now. Perhaps I'll just make a comment and then take it another way with a question. It has to do with the birth registry and protection of the rights of children. I think I heard a comment earlier that the current proposal, the draft legislation, would allow for anonymous donation, and I think I heard it said that, of course, this elevates the rights of the donor, in terms of privacy, over the rights of the child. We have heard witnesses here speak very eloquently to the concern that causes for children later on in knowing from whence they came—future health concerns, and so on. So I appreciate that comment, for the record.

I want to address a question here to Dr. Barwin, and perhaps others might wish to comment, on importing semen. I wonder if it might be suggested that until we be shown that we have a definite shortage in natural resources of this type in Canada, why should it be necessary to import sperm from the United States or anywhere else in the world? Is there a shortage of natural resources of this type in Canada?

Dr. Norman Barwin: I think one of the reasons is because in some cases there has been a fear of the identifiable aspects. I've certainly seen a decline in the fact that the donor may be identified at some later stage. Secondly, because of the attempt to try to restrict the number of times a donor can be used for particular patients, you have a smaller pool based on that aspect. That's why we favour the national registry, because at least it would keep a good handle on how many donors have been used for particularly the outcomes.

Certainly Health Canada and the IAAC have laid down very strict guidelines in terms of the testing of people who are donors. I think that has had very positive aspects in terms of quality control and maintaining good standards. At the same time, it has reduced the number of donors because of the time consumed, and so on. But I think, really, the whole question of anonymity seems to have had some impact on donors coming forth, certainly from Canada.

I don't know whether you agree, Jean.

Ms. Jean Haase: I think bone donation, in particular, has become a business. Some of the biggest businesses in this field exist in the United States. I think there are fewer and fewer clinics that are interested in recruiting sperm donors any more, and so they've just turned to the easiest source, which is a big commercial bank, without thinking that we're all using the same one. It's just the easier option.

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I know the regulations for screening have become much tighter, and that has impacted the willingness of some clinics to engage in recruiting donors. It just seems like too much work, and they hand it over to a business.

Mr. James Lunney: Thank you.

I think on the notion that we're receiving donations of this nature from prisoners in the United States, we could probably do a little better in that realm.

I'll just take it in another direction now. Dr. Barwin, you mention that not all infertility is preventable, and you used the example of endometriosis. Will all due respect, Ms. Espenant talked about sub-fertility. The big concern is, what is causing infertility?

We heard that delayed onset is a big factor. You mention that women over 35 have a problem, and over 40, even more so. As a specialist helping people with infertility, and that being a focus for your practice, I understand, would you suggest there is research that suggests that years of suppression of ovulation through chemical intervention is perhaps a major contributor to female infertility, and that therefore sets the stage for hyper-stimulation to kick-start ovaries that have stalled in terms of ovulation?

Dr. Norman Barwin: I had an opportunity to write the brief for the Baird commission on contraception and its relationship to subsequent infertility. All the research that has been done has shown that although ovulation suppression, such as with the birth control pill Depo-Provera, does cause some delay in fertility, it is not associated with infertility per se.

The difference in conception rate at the end of 18 months with the birth control pill was no different from those patients who had used the diaphragm. The problem is that many patients who have gone onto contraception or ovulation suppression have no idea of their potential for fertility prior to them going on the medication. In other words, they're not being exposed to the risk of pregnancy prior to getting onto the birth control pill or whatever method they select.

I think there's no evidence that ovulation suppression is associated with subsequent infertility. It has been shown that, at the end of three months, 7% of patients will have a return of fertility after having been on the birth control pill. At the end of six months, 2% will still be having irregular periods, and when we look at the incidence of people not ovulating in the population, that is about the incidence.

Mr. James Lunney: The whole aspect of suppression of or delayed procreation is certainly a contributing factor, and perhaps in terms of informed consent, that's a factor that should be discussed with young women going on these birth control procedures.

In terms of informed consent, perhaps it would be a good idea to advise women as well that, according to statistics, about 21 per million will die from thromboembolism from birth control medication. Perhaps there's an issue of informed consent that is not very widely used in this area. Would you agree?

Dr. Norman Barwin: I agree. I think birth control in particular requires in-depth counselling, and the contraindications and the long-term effects need to be appreciated.

I think it must also be pointed out that women who have been on the birth control pill have a reduced risk of ovarian cysts and ovarian cancer for every five years they've been on it. The incidence of anaemia is lower in women who have been on the birth control pill, as is the incidence of days off work from painful periods, and the incidence of cancer of the uterus. So there are non-contraceptive benefits that are derived from the birth control pill other than contraception.

But I absolutely agree with you, and we as a profession are also perhaps derelict in not talking about the long-term consequences. I think the birth control pill allows patients to delay the onset of their fertility, because of the fact that they have contraception, to pursue their careers. Having children younger, as was done in former days, is no longer part of the agenda. People are waiting to achieve their careers and to get the financial resources in place. Of course, also, the birth control pill doesn't protect against sexually transmitted diseases. So I think we need to emphasize that dimension as well.

Mr. James Lunney: Thank you.

My final question here has to do with, just to perhaps bring our engineering—

The Chair: You're into your twelfth minute, Mr. Lunney, so it has to be a quickie.

Mr. James Lunney: Okay, a brief one.

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The engineers, I noticed, joined the doctors and the lawyers in suggesting that really nothing should be prohibited by statute and everything should be controlled by regulation. It seems that those who are working with this technology and perhaps are in a position to benefit financially from it are keen to see that nothing is controlled by prohibition.

This was in contrast to groups we've had today such as the National Council of Women, whose representative, Ms. Brown, supported prohibition for a number of activities, including the age of women in donating gametes, and servicing, and so on. So I'll leave that as a comment. If anyone wishes to comment on it, fine.

The Chair: Thank you very much, Dr. Lunney.

Dr. Castonguay.

[Translation]

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

I greatly appreciated the testimonies we heard this morning particularly about the whole question of counselling. We had already talked about it in previous meetings. Now I realize that we must certainly distinguish between counselling and informed consent.

Based on your experience, has it ever happened as a result of counselling that people changed their mind because it was not the right thing for them? This is my first question. I have another one.

Do you think that there should be some clause in the bill requiring that there be counselling services in every infertility clinic, but provided outside the clinic, in order to avoid experts exerting pressure on counsellors and eventually influencing the decision-making process?

I have a third question that comes to my mind when I think of the children who will be born from these technologies. Is it possible that anonymous sperm donors just won`t be accepted in such programs?

[English]

Ms. Jean Haase: Thank you.

In terms of the first question, do people looking at pursuing treatment ever, as a result of counselling, turn away from treatment? Yes, that occasionally does happen. Sometimes people are sent to see me because they're struggling with the whole decision-making phase and they want to have some clarification to help them work through that decision of “Is this right for us or not”. Sometimes people will see me and say they want to move on and just go to adoption. They don't think the treatment process is for them.

So, yes, sometimes that is the outcome of counselling. It depends at what stage one sees the couple or the patient.

In terms of whether the counselling should be outside the clinic or within the clinic, I tried to address that in what I was saying. I think there are pros and cons. Obviously, I'm biased. I work within a clinic, and I think I can be very effective in terms of advocating for the patients within that clinic. I can interact with the health care team. I can be right there if they need me on a certain day or at a certain time.

I think counsellors who work in the community are more independent certainly, but they may not be as familiar with the day-to-day life of the clinic and what's happening, so they may not be very accessible to the other members of the clinic staff.

I think your last question was about whether anonymous donors will continue to be accepted. I certainly hope not. I would like to move away from that. If I were counselling a sperm or an egg donor, I would really be encouraging them to think about the lives that are going to be created down the road. I'd ask them, how would they feel if those people ever needed to know you or know something about you? How do you feel about that? I really think donation of sperm or eggs is a responsible act, and with that responsibility comes some interest and responsibility towards providing one's identity—not legal or financial responsibilities, but just a moral responsibility exists, I would say.

Ms. Marie Lemay: May I add a quick statement?

The Chair: This other lady is next.

Ms. Marie Lemay: I was trying to get back to the comment that was made, and I didn't get a chance to answer so I don't know when you want to bring me back in.

The Chair: We're on Mr. Castonguay's questions now.

Did someone else want to respond to Dr. Castonguay?

[Translation]

Ms. Justine Espenant: I would like to add a few words especially to underline the fact that the main purpose of the counselling provided to patients by the Infertility Awareness Association of Canada is

[English]

to add to the counselling that's been done with the clinics. So one of the things that I don't know has been appreciated is that when you have a national organization, a voluntary health organization, patients see it as a complement to the counselling that is being provided at the clinic, so they are getting unbiased support—unbiased education and information—that can then help to make their decisions and put it together.

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If you wonder why we are here as an organization, that is one of the main roles we fulfil, to support, recognize, increase awareness, and have education for patients. So it is absolutely very important to have unbiased information, because there is a dollar value, and every clinic has an exchange of money; hence it is in their best interest to have—

The Chair: To encourage people.

Ms. Justine Espenant: Right. So it is important to have sources of information that are outside the realm of the actual clinic that can be neutral, informed, and unbiased.

[Translation]

Mr. Jeannot Castonguay: To me counselling is important and I believe this is an aspect that must not be overlooked. I think it might be one of the most important aspects to consider from the start. I am very happy to know that some people after having met someone realize that it was not the right decision for them.

I think that counselling is extremely important given some experiences I have had where people who had made certain decisions came to regret those decisions following later events, despite all the efforts made to inform them. They told me five years later that they should have never made such decisions.

Do you think that the availability of counselling should be a requirement, that a clinic would just not be able to work if one did not make sure that it provides real and efficient counselling?

[English]

The Chair: Who are you asking, Dr. Castonguay?

Mr. Jeannot Castonguay: All of them.

Ms. Jean Haase: I'll take a shot at it. I think the availability of counselling should be a requirement of the licensing of the clinic. But in the case of where donated gametes are being used, I do think that should be mandatory.

[Translation]

Mr. Jeannot Castonguay: Thank you.

[English]

The Chair: Where donated gametes are being used, the donor should be counselled and the commissioning couple?

Ms. Jean Haase: Both, yes, absolutely.

The Chair: I see.

Can I get in now?

[Translation]

Mr. Jeannot Castonguay: Certainly. Thank you.

[English]

The Chair: I'm very interested in this money thing, because if you've read the draft legislation, you can see the intent is to eliminate commodification and commercialization. But to me, it's not going to accomplish it because it allows for these considerations.

I'm trying to understand how it is that some people pay and some people don't pay. Ms. Haase, take your clinic. It's in a hospital that is run by the state, essentially, and people present there to a medical doctor, who can charge OHIP for services. To a certain stage, I would think, the services provided in your clinic are free, and then there comes a point, supposing they have to go to in vitro, when the fee kicks in. Is that correct?

Ms. Jean Haase: Are you talking about the fee for the treatment or the fee for the counselling?

The Chair: I'm talking about the fee.... You have shown us that counselling should be part of the service. To me, a clinic provides a basket of services: information, education, referral to the association, which becomes like a support group, plus the medical professionals, and, hopefully, the social work professionals. To me, psychologists are not social worker professionals, not at all. There's a big difference there. And some people might need a referral to a psychologist to have some kind of psychological testing, but a social work professional, to me, is the person you want there.

So where do these fees start to kick in? And what could we do to have an understanding, based on what I call following the money, if we want to eliminate the money from it?

Ms. Jean Haase: Our clinic is situated within the hospital, so we don't have overheads, we don't pay for the light and the heat in the building. If you were in the community, as a private enterprise—

The Chair: The rent and all.

Ms. Jean Haase: —you'd have to pay for all of that. So that's one issue. And the position of the counsellor was incorporated into the clinic when the hospital—

The Chair: Set it up.

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Ms. Jean Haase: —set it up that way, yes.

Actually when patients come to what we call the assessment morning, the orientation morning, if they were going to do IVF, it lasts the whole morning and they see the nurse, the doctor, and the psychologist. They do pay for that. If their IVF in Ontario is not because of tubal blockage, then they pay $500 for that assessment morning. They don't know which piece goes to the counsellor, or the lab technician, or the doctor. So there are fees that are charged when the treatment is uninsured by OHIP.

The Chair: To your knowledge, is IVF insured anywhere in the country?

Ms. Jean Haase: My knowledge is that it's only insured in Ontario in the case of blocked tubes or if it's seen as medically necessary in the event that hyper-stimulation and insemination, if that was the plan, would result in a higher risk of multiple births. In Ontario, it's what we call a conversion to IVF. It's done at the last minute to avert a multiple birth and to eliminate or reduce the aspects of hyper-stimulation.

I understand that is covered in Ontario. But I don't think it's covered in any other province. I don't think IVF is.

The Chair: Can you give us any help as to how we might rid ourselves of the exchange of money? You gave us one hint, Ms. Haase, when you said if clinics had to recruit their own sperm donors, that might eliminate this buying and selling from banks, some of which take their sperm from prisons in the United States.

All this stuff just drives us crazy. You hate even talking about it. And you don't know how many donations some of those people made and therefore how many children might be running around sired by—

Ms. Jean Haase: And they could donate at many different places at the same time.

The Chair: Exactly.

In my view, the strictures we have in Canada at this point are just that one donation may go to Vancouver and the other one goes to Halifax, and the hope is those two kids don't grow up and marry. This is too vague. This is not good enough.

Ms. Jean Haase: I think we need to look at a different way of recruitment. And I think right now it's commercialized.

The Chair: It is.

Ms. Jean Haase: If money is the thing you are trying to encourage people to have when they're coming in to donate, then they'll take the money. But there is really interesting research that is being done on the motivations of donors elsewhere. I know Professor Ken Daniels has sent a very helpful submission to the committee, and he talks about this research. In countries like Australia and New Zealand, donors are not expecting money.

The Chair: And in Sweden now, I think.

Ms. Jean Haase: Yes. Absolutely.

So it can be done. And this brings us back to the issue of age, which we were discussing before. It has been shown that younger people are less likely to think about the long-term outcome of their donation. If a young university student of 21 is going to be offered $50 or whatever for his donation, he might be motivated in a different way entirely. The research that has been done on sperm donors in Britain has shown that men who are not interested or not requiring of being paid are often those who are a bit older, who have their own children, who understand the perspective of parenthood. They're coming to that with a different perspective altogether. They're not the 22-year-old student who wants $50.

I think we need to be more creative in terms of how we go about recruiting donors. I don't think it's impossible.

The Chair: We're talking about male sperm donors. It's an easier concept.

Ms. Jean Haase: Yes.

The Chair: But the actual money that changes hands to a female for eggs is much higher—

Ms. Jean Haase: Yes, it is.

The Chair: —and could be the result of fertility drugs as well. So you have a woman—

Ms. Jean Haase: I would say those are part of the egg donor's expenses, which she shouldn't be expected to pay for herself. So, yes, there are expenses. But I don't think sperm donors have many expenses generally.

I think what's really a concern is the way egg donation has become a huge business.

The Chair: This is what we're concerned about.

Ms. Jean Haase: The Internet and people looking for egg donors on the Internet is extremely worrying. It's a case of supply and demand, and that's where people go to look for things that are in short supply.

The Chair: Exactly.

The bill talks about altruistic donations, but all the evidence we have is that most of the donations spin on money. There might be the odd time when a relative does something for you. For example, we've heard, for surrogate mothers, the price quoted as, say, $36,000 for 12 months, and that's just for her expenses, because she had to stay home from work, or whatever the reasons. The bill is very loose on this consideration business. Would you all agree we should tighten that up?

• 1320

Ms. Jean Haase: I certainly would like to remove the commercialization that exists. It's just grown up, and nobody has questioned it very much. Of course, we're very close to the United States where that whole model is very prevalent. But I think because so much infertility treatment is provided outside of government health plans, it has really contributed to that.

The Chair: So if we could get it back in the health plans....

Ms. Jean Haase: I think that would certainly help a great deal.

The Chair: Of course, those are provincially oriented, but we could give leadership with the bully pulpit. For example, if we had the licensing we could issue licences to clinics that do not take any money from anybody, and the medical profession itself might further lobby the government to put it back in the health care—

Ms. Jean Haase: People are horrified when we think about offering money to organ donors or blood donors.

The Chair: Exactly.

Ms. Jean Haase: That's just not part of our culture. But for some reason, we've come to expect it's okay to do this in reproduction.

The Chair: Just before you speak, Dr. Lunney, the engineers wanted to respond to one comment you made earlier.

Could you do that now, Ms. Lemay?

Ms. Marie Lemay: Thank you, yes. I just wanted to make a clarification. Everyone says that science evolves really, really quickly, and to us it's extremely important that those skills be in the hands of people who are bound by a code of ethics, people who not only have the skills but have the ethics. Our professional system in Canada provides that through the professions.

Where we agree with the medical profession is we're saying keep that flexibility, and rely and build on what's there. Don't redo it. Include what we have in Canada in the regulatory body you'll need to put in place.

The Chair: You have a question, Dr. Lunney?

Mr. James Lunney: Thank you. I just thought of something coming out of this discussion that the committee hasn't really had a handle on, and that is it might be helpful to have an overview of the costs to patients currently accessing IVF or DI services, and who pays what. What's the province paying in some cases, and what are people actually paying for these services?

The Chair: I think it varies across the country. It depends.

Mr. James Lunney: It might be helpful to have a chart or an overview of that for committee purposes.

The Chair: It would be very helpful if somebody could do it, but in some cases this is not public knowledge.

Ms. Justine Espenant: I wrote an article a couple of years ago about the cost of pregnancy, and that's something that could most definitely be sent to you to read. It's a perspective on the costs that you cannot actually put on paper; for example, the cost to the individual to travel from northern Saskatchewan to their clinic in Saskatoon, which requires three hours of travel by car or small plane, which they have to do every two or three days for blood work and ultrasound. There's the cost of loss of employment time. There's the cost of misunderstanding on the part of neighbours, friends, and family.

So there are associated costs that cannot be quantified and should be included as part of that cost, as I discussed in the article I wrote.

In terms of cost, it is proven that if IVF is going to work, it will typically work by the third cycle, so I cannot understand why it is not insured by provincial health care plans. It just totally boggles my mind. If it's going to work, it typically will work by the third cycle, and that to me seems like a reasonable coverage to be standardized across the country.

I think you would be appalled to know that in Ontario, when families appeal the system—there is an appeal board within Ontario, if they want to appeal this not being covered by the health plan—they will send them all the paperwork, have them go with their lawyer through the whole process, knowing they will actually say clause X states they cannot cover this. They allow the couple to have the impression they will be heard at a board of appeal, when it can never be overturned. It can never be covered. If you were to access the files within Toronto for all those couples or individuals who wanted to appeal this cost, you would be surprised at the amount of work and effort they put into this, and not one of them was covered.

The Chair: You should be writing to the Law Society of Upper Canada about that because lawyers are agreeing to take those cases to appeal, and now that the record shows no one has ever won, the Law Society should be instructing its members not to play the game.

• 1325

Does your association lobby the provincial government? That's where the action is.

Ms. Justine Espenant: That was one of the things on a list of things that need to be done. That was one, including working with an ombudsman and the Minister of Health in Ontario to communicate that there is a process beyond...that it could be overtaken.

But bottom line is, as an association, we had a tremendous lack of funds to pursue the avenues that were required. There were too many higher priorities to address. By not having enough funds to outsource this type of research, it wasn't being done.

The Chair: Okay. Thank you very much.

Thanks to all the witnesses for your patience in waiting for us to arrive—we were half an hour late—and for your patience in giving this extra half hour of your day at the other end. It's really been helpful. We may need to phone one or two of you again for further guidance on the themes you've opened up for us. We're very grateful. Thank you very much.

To members, just for a second, we have this problem in that our travel was interrupted. We figure there are about 40 groups and witnesses hoping to present to us, and because we didn't go for four all-day sessions in those other locations, they're now bothering the clerk about wanting to come.

The question is, do you think you need to hear 40 more witnesses, or even 10 more? There will be other witnesses after this, of course, who we already have booked.

But of those we were supposed to hear on the road, do you feel you want to hear 10 of them out of the 40? The only date available at present is November 26, which is the second Monday we're back. But the clerk has to give these people notice if they're going to travel from far away to Ottawa.

Mr. James Lunney: Is Dr. Miller in there?

The Chair: Yes, she was one of them.

Mr. James Lunney: When is she coming?

The Chair: Well, she's not coming. See, that's the thing. We were to see her when the group was in Montreal. There are all kinds of people out there in the regions that were booked.

Mr. James Lunney: She's one I think is a must, if we can possibly get her.

The Chair: It's not a question of who. We can get her, because we know you're very keen on her, and I'd like to hear her too. It's not that. It's whether you're willing to give an all-day Monday session to this committee, to come in on a Sunday night and to sit all day Monday to hear 10 of the 40 we had originally booked, of whom Dr. Miller is one.

Mr. James Lunney: When did you plan on doing that, Bonnie?

The Chair: Monday, November 26.

Mr. James Lunney: Oh, shoot. I'm travelling that day. The Sunday flight for some reason is really booked. I'll get back Sunday, if I need to, for that meeting.

The Chair: Okay.

How about you, Dr. Castonguay?

Mr. Jeannot Castonguay: I won't be around that week. I'll be away. The week of November 26?

The Chair: Yes.

Mr. Jeannot Castonguay: I'll be away from November 23, I believe.

The Chair: Are you travelling for the minister?

Mr. Jeannot Castonguay: Yes.

Mr. Rob Merrifield: How does he get to do that?

Mr. Jeannot Castonguay: Comment? Sir, if you'd like to come along, I don't mind. You're a nice gentleman, so that's okay.

Mr. Rob Merrifield: That'll give us lots of questioning time, you know, because there's only you there.

The Chair: Even if there are three of us, I think we should have that one-day session. We've already booked another one in December. I think it's December 3. So we have the two Mondays in a row.

Mr. James Lunney: So that's November 25 I'd have to fly on.

The Chair: Yes, you'd have to fly on November 25.

This meeting is adjourned.