HEAL Committee Meeting

STANDING COMMITTEE ON HEALTH

COMITÉ PERMANENT DE LA SANTÉ

EVIDENCE

[Recorded by Electronic Apparatus]

Thursday, October 25, 2001

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[English]

The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Ladies and gentlemen, it's my pleasure to call this meeting to order on our usual subject, which is stem cell research and assisted reproductive technology.

We have several groups here this morning. The first one is the Canadian Institute for Health Information and the speaker will be the person who is from the privacy secretariat of that institute. I would ask Joan Roch to begin, please.

Ms. Joan Roch (Privacy Secretariat, Canadian Institute for Health Information): We wish to thank the members of the Standing Committee on Health at the House of Commons for the opportunity to appear before you today with respect to the proposed legislation governing assisted human reproduction.

I'm Joan Roch, manager of the Privacy Secretariat at CIHI, and I'm joined by Dr. John Millar, who is our vice-president of research and population health, and Karen Weisbaum, who is a consultant with the privacy secretariat.

By way of background, the institute was incorporated in December 1993 as a federally charted, independent, not-for-profit organization, as agreed to by the federal, provincial, and territorial ministers of health. CIHI's mandate is set by the ministers of health. Accordingly, CIHI serves as the national mechanism to coordinate the development and maintenance of an integrated approach to Canada's health information system. It provides and coordinates accurate and timely information required for establishing sound health policy, managing the Canadian health system effectively, and generating public awareness about factors affecting good health.

Under this mandate, the institute collects abstracts of health information from health delivery organizations across the country. It conducts analysis with the data and issues health information and reports that serve the public interest. For example, under the discharge abstract database, we use coded summaries of hospital stay information to report on causes of hospitalization, procedures done, and lengths of stay.

Under the Canadian organ replacement registry we track trends in renal dialysis, organ transplantation, and patient survival rates.

Under the Ontario trauma registry, we produce statistics on the causes of hospitalization for trauma. This information is used for planning trauma services and for developing injury prevention programs.

It's from this perspective that we provide the following comments to the committee.

In terms of legislated authority, CIHI has commented on similar occasions that it would be very valuable to members of the public, administrators, and researchers to have clear statements in legislation that health data may be collected and used for specified purposes, including research and statistical analysis. We are pleased, therefore, that in this draft legislation the government has adopted this explicit approach for the collection of health reporting information. This means that only persons authorized under the act may collect these data, and their duties regarding the data are set out in the act.

Based on our experience in health information, the volume and the nature of health reporting information to be collected under the act is extensive and broad. It includes many directly identifiable data elements, such as identity and genetic information, as well as much potentially identifiable data, that is, medical history and personal characteristics. Personal characteristics, we expect, would conceivably include things such as racial heritage, disability, and sexual orientation.

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While disclosure of personal identifiers is the most obvious method of identifying an individual, data elements that on their own don't reveal the identity of an individual may in combination work to disclose identity. This may result in a breach of privacy through residual disclosure, even after aggregation of the data.

De-identifying data to the point that they can't lead to re-identification, yet remain valuable for research purposes, is one of the most difficult aspects of our work at CIHI. Given the nature of health reporting information, it may be a very challenging task to de-identify the data and maintain their value for research and statistical purposes.

In terms of operational matters, the act sets out some requirements related to notification to the donor. Designing procedures to support these requirements is going to be a demanding task. Well-crafted legislated protocols for collection and use of health reporting information will be a necessary condition for ensuring that consistent practices and procedures are in place regarding such things as obtaining informed consent, consistent practices for the standardized collection of the data, as well as for the safe transmission, storage, amendment, and later destruction of the data.

Consistency in application of procedures contributes to the fair treatment of individuals and respect for their privacy. Given the nature of health reporting information, we expect therefore that there's going to be substantial interest in addressing these operational matters before the registry is put into place.

At CIHI we understand the importance of respecting individual privacy when dealing with personal health information, as well as the benefits of reliable health information to all individuals, health professionals, and researchers. We take strong measures to protect the confidentiality and security of personal health information while fulfilling the information needs of the health research community. All personal health information requires a high degree of security, but some kinds of personal information require an even higher threshold.

Thank you.

The Chair: Thank you, Ms. Roch.

We'll now go to the organization called the Coalition for an Open Model of Assisted Reproduction. The first speaker will be Catherine Clute.

Ms. Catherine Clute (Coalition for an Open Model of Assisted Reproduction): My name is Catherine Clute. I'm a mother by adoption, co-president of the Adoptive Parents Association of Nova Scotia, and a board member of the Infertility Network. But I'm not wearing any of those hats here today.

[Translation]

Today, I am here representing a coalition of broad interests that came together to address certain aspects of this draft legislation.

[English]

I would like to thank you very much for the opportunity to be here. Our coalition is composed of people from a wide range of interests. We have parents, offspring, non-profit organizations, adoption reunion groups, adoptive parents, professors, and ethicists. Laura Shanner and Phyllis Creighton, who have both appeared before this committee, are members of our coalition.

These individuals and groups haven't traditionally held much common ground. In fact, we sometimes have even had opposing viewpoints on several issues in the past. But one aspect of our coalition, which we believe is unique, is we've gathered input and achieved consensus from all these people—people who used to be adversaries at different times. We've found a common area of concern, the need for information—specifically a request for access to identifying information—about gamete and embryo providers and surrogate mothers for all people born through third-party conception.

This morning when I was flying up from Nova Scotia, I was sitting beside a dairy farmer from Grafton, Ontario. I was explaining what I was doing here, and I started to talk about it a little bit. He said, “Good heavens, I have the data on where my cows come from, way back, generations and generations. If we can do it for cows, we can do it for people too.” He is also a senator, so he was not your average dairy farmer.

We feel strongly that there's much to learn from the experience of adoption. To the persons directly and intimately involved, the resulting person, there are many issues that are similar. Both the adopted person and the person conceived with donor assistance have gaps in their lives, gaps that can be met with an access to information.

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Adoption used to be unregulated. It used to be managed on an individual basis, at the discretion of local practitioners. Adoption was arranged in maternity homes, driven by profit motives.

I lived down the road from the site of the Ideal Maternity Home in Chester, which was the home of the infamous “butterbox babies”. The mandate was to serve the interests of adopting families, just like assisted reproduction is today. The whole adoption process was surrounded by shame and embarrassment. There was shame on behalf of the birth parents, embarrassment on behalf of the adoptive parents. As a result, secrecy was an overriding concern for all parties. When records were kept, they were locked away to protect birth mothers from the shame, from society, and so that adoptive families could be considered just the same as everyone else and be protected from future claims from birth parents.

We learned lessons from adoption the hard way. As more and more adopted persons came of age, and blatant abuses became public and adopted persons shared their experience, there was a shift in the way adoption is now practised.

Now, in all Canadian jurisdictions, adoption is highly regulated, and although things are still not perfect, there are limits about what can be done. Payments or contracts are not tolerated. There's a trend towards more openness. Records are available to an adopted person, and most importantly, adoptive families tell. If a prospective adoptive couple were to come forward in any part of Canada and tell their social worker that they're not going to tell their children about their adoption, they would be referred for more counselling. They wouldn't have their home study approved. Their adoption would not proceed.

The philosophy of adoption has shifted. It's no longer about rescuing unwed mothers from shame, or finding babies for infertile couples. It's about providing the best option for the child involved.

We believe this principle needs to be recognized with respect to assisted reproduction. An increasing number of parents who have used third-party conception recognize the importance of being honest with their children. But it can't just be up to the parents. Society must make it easy and acceptable for them to do so. Without centralized record keeping and a legal right of access to detailed information, you don't go anywhere.

Persons conceived with the assistance of third parties have a basic human right and many practical needs to know the truth about their biological origins. Some of those reasons are basic health reasons, some of them are social and psychological well-being. But on the whole issue of consanguinity—Senator Tunney found this really interesting, because it's important in the cow-breeding business that you keep separate lines and everything—basic human rights, laws that deny offspring access to their identifying information, would appear to violate the United Nations Convention on the Rights of the Child, equality and charter rights.

Our charter considers all Canadians equal; therefore all Canadians should have equal rights to an accurate birth certificate. Ethics—

The Chair: Are you almost finished?

Ms. Catherine Clute: I'm almost finished.

The Chair: You're a minute and a half over as it is.

Ms. Catherine Clute: I shouldn't have told you about Senator Tunney.

The Chair: Yes.

Ms. Catherine Clute: Sorry about that.

The ethics of procreation. It's not about solving a problem of treating infertility; it's building families.

Our recommendations are: required consent to release identifying information—if you don't want to release information, you're not accepted into the program; a composition of a national body made up of people who have a lived experience; birth certificates that list accurate information; a national registry of all gamete donations; we want to have records kept, mindful of the federal Privacy Act; and we would like to add some elements to the preamble that recognize that the children conceived have a direct interest that is stronger than that of the parents or the other people involved.

Thank you.

The Chair: The next speaker is from the New Reproductive Alternatives Society, a founding member whose name is Shirley Pratten.

Ms. Pratten.

Ms. Shirley Pratten (Founding Member, New Reproductive Alternatives Society): Good morning.

I want to say thank you for being here. We know you've had a really busy morning and have had to adjust your schedules. I also want to thank the committee for your work and commitment to this process. I would like to acknowledge Mr. Sokolyk for all his time and patience. Thank you for letting the New Reproductive Alternatives Society present here today.

To introduce myself, I am the mother through anonymous sperm donation of Olivia, who is now 19. She was conceived when I was married to her father, who had an infertility problem.

I am also media spokesperson for the New Reproductive Alternatives Society, which formed in 1987, 14 years ago. It's Canada's first support group for donor-inseminated families, and it advocates primarily for the rights and needs of the resulting offspring conceived this way, as well as reform for the sperm donation system in Canada.

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Professionally, I work as a nurse. I have a medical background in psychiatry, mostly psychiatry, mental health, for the last 12 years.

When I address some of the issues and concerns about the practice of donor insemination, I speak primarily from a very deeply felt personal experience, but I also speak from a professional perspective with an understanding of the physical and psychological health issues.

Donor insemination, incidentally, is the oldest of the technologies and is supposed to be one of the more simple ones, although it's still very complicated and we haven't got it right yet. The first one was recorded in the United States in 1884 in Philadelphia, and we believe it's been in Canada for more than 50 years.

We also believe the system can be reformed; it can be changed and turned around. We think that when this older one is dealt with first you'll see the path much more clearly for some of the more complex ones that have followed behind.

I want to say that the intention of our presentation today is to focus on the human face in assisted reproduction, and I thought if there was time to say only one thing to this committee it would be to stress the need for the human, ethical, psychosocial, and legal issues, because they directly impact on people's lives, to catch up to the medical, the scientific, and the academic aspects of the technologies. From our viewpoint, these are greatly out of balance.

The medical and scientific dimension has its very necessary and respected place, but if we spend too much time looking down microscopes and into Petri dishes, we lose sight of the real purpose and the most important reason behind the reproductive technologies, and that's the creation of real human life. I have two, one on either side of me, sitting right here in the flesh today, and this is what this is about.

In a few minutes I want to show two very short CBC news shorts on donor insemination, and that's the main part of our presentation. We've used these videos in the past as a very quick educational tool to clarify these issues, and they will bring out what we've written in our written brief. We used them for private hearings at the royal commission. We've used them for provincial and federal policy-makers, for government agents, and other agencies. It seems very relevant to show it to this committee also because we're moving further along in the legislative process but still nothing has happened yet. So these issues are still the same.

Before I do that, I want to refer to an article that appeared in the paper a couple of weeks ago to do with the technologies. In it a doctor was quoted as saying:

It's a mistake to mix politics with medical issues, they are trying to make political decisions for procedures that are medically oriented. These are not political decisions, these are medical decisions that need to be made by physicians and their patients—not by politicians.

We've heard similar things. We hear this kind of thing all the time. The members of our group have a very different perspective. We believe that the human and very painful problem of infertility is a medical issue and that considering alternate ways of reproducing can involve medicine and science. But once a child is born through assisted reproduction, the complex issues around genetic history and heritage, and the access to and safeguarding of that information, have absolutely nothing to do with medicine, nor do the issues that are of a psychosocial nature, and yet they all continue to remain under strict medical control. These issues have to do with human rights of the offspring, both as a child and an adult, social justice and identity issues for them and the emotional and social well-being of families.

It is, we believe, the blurring of these boundaries between what is medical and what is not medical that is at the root of many of the problems that exist in the practice of donor insemination.

To personalize this a bit more, it's been very distressing to us as parents with children conceived through sperm donations to learn that records of the other half of our children's precious heritage have either not been properly kept or recorded in the first place, lost, or just discarded after the normal six-year medical requirements of record maintenance, or, in one case, they became the property of the inseminating physician's wife after he died.

The College of Physicians and Surgeons made that declaration to one of the parents in our group. It is for these reasons that we not just ask but plead for the government to intervene in what to us is an abysmal state of affairs. We want the government to take firm and clear control over the non-medical aspects of the reproductive technologies, especially around the welfare of our children, and as well to set up a new registry or an open model. The parents of the children who are already here want action taken around the current records before they are also destroyed or misplaced.

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Many infertile people also build families through adoption, but adoption records are not found under the control of physicians or left lying on the shelves in sperm banks, and neither should the records of people conceived through assisted reproduction. It is because physicians believe, as was quoted in the news article, that these are all medical issues between a physician and his patient that our children's histories have been so poorly kept and safeguarded.

Let's move on to the videos. I'd like to point out to the committee some key things to make a note of.

In the first video you should take note of the psychosocial effects of secrecy on the couple and on their child. Although some think there's more awareness now, most people still do not receive the kind of professional non-medical counselling that these complex reproductive experiences require. You'll see Olivia's father and myself filmed in the darkness as we struggled with secrecy and openness, and you should note that this secrecy is all tied up with the anonymous system that's now in place.

And please take note of the donors who are on both videos. One is anonymous on one and one is open on the other. They highlight the need for registries and the need to limit sperm on donors.

Also, the other one highlights the need for law reform to protect donors, but it's also to clarify the legal status of the social father. As Olivia's father always said, he didn't feel like the law clarified him as the father because the law is only reformed in the Yukon, Newfoundland, and Quebec to protect donors from financial support. The physician on this tape also points out that the record keeping system is not adequate or appropriate.

These videos conclude our presentation. We remain committed to change and for national standards to be established for the sake of the safety and future well-being of these future offspring and their families.

Thank you for your presence and your attention.

You'll also see a younger version of Rona Achilles on these. It's from a few years ago, which shows you how long we've been working on this issue.

[Video presentation]

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The Chair: That was very interesting, particularly seeing Knowlton Nash again. He's someone who has disappeared from our lives.

I think Olivia has something to add to this.

Ms. Olivia Pratten (Member, New Reproductive Alternatives Society; and Member, Alliance of People Produced by Assisted Reproductive Technology (APPART)): That's right.

To begin, I want to say

[Translation]

thank you for inviting me today. I am very happy to be here.

[English]

I'd like to introduce myself, who I am, what it feels like to be conceived via anonymous sperm donation, and how my conception within this anonymous system continues to affect my life.

I'm Olivia Pratten. I'm 19, probably the same age as some of your children. I am a student at a university in Nanaimo in British Columbia.

Just as a note, when referring to donor insemination, I will use the abbreviation “DI”. It's easier.

Even though my testimony is about my own personal experience as someone conceived through this process, it should be observed that at the core, DI offspring may share many of the same issues about identity as those conceived through egg and embryo donation.

I won't be going into any great detail about the fact, as was indicated in the draft legislation, that all donor offspring, whether sperm, egg, or embryo, must have access to their regularly updated medical histories. I'm also sure there's no debate that the number of babies born through the same donor must be limited, and half-siblings must be accounted for and followed through to avoid any possibility of marrying each other. I also hope that the current medical regulation that the records can be destroyed after six years be changed to 100.

I'm a prime example of that fact. I have never had access to any of my medical or genealogical histories. I don't even know if I have any half-brothers or half-sisters. I'm quite doubtful my doctor ever maintained proper records, and even if he did, it's unlikely they still exist. The fact isn't whether they do or they don't; it's that they're not obligated to, the way I see it.

Currently, as I understand it, the only thing the medical profession is obligated to do is to test the semen for numerous types of diseases, and after that, their obligation ends and they are free to do what they like. I know there are some programs that offer many different things, but there is not that minimum requirement that everyone must follow. So that's something that I really want to see. Anyway, I'll talk more about that.

With the fact that I don't have my medical information, and it's very unlikely I ever will, I almost feel like I was created in a back alley. It's like I wasn't good enough or wasn't worth keeping the records for.

I found out I was conceived this way when I was 5 years old. My mother told me after I asked her where babies come from. As I've grown older and more mature and self-aware, I've often had more comments or questions that I've needed answered. At the same time, I've also had to come to terms with the fact that it's unlikely I'll ever know who my biological father was and that most of my questions about my origin and identity shall forever remain unknown and unanswered.

Based on my personal experience, I believe there is no ethical, moral, or legal justification for allowing an anonymous sperm system to operate, or any other gamete donation system. The most important thing I would like to see in this legislation is that anonymity be abolished in all areas of assisted reproduction.

A complete, open system and the illegality of anonymity has been successfully implemented in other countries around the world, such as Sweden and Australia. Canada has a golden opportunity to act now by making the rights of all donor offspring paramount and enshrined in law.

After all, an anonymous system violates our human rights, as stated in article 8 of the United Nations Convention on the Rights of the Child, to “undertake to respect the right of the child to preserve his or her identity”. Canada ratified this convention in 1991.

I'm a member of an organization called APPART, which Barry will speak on behalf of. It's a group of DI offspring. Some Canadian members of our group have talked about challenging this particular point in the courts. Hopefully a legal precedent would be set that an anonymous system, which originated as clinic policy, violates our human rights and has no legal right to exist.

Furthermore, quite often when we discuss the issue of anonymity, it becomes confused with privacy. Anonymity and privacy are two completely different things. Anonymity is a desire and privacy is a right.

As for myself, born of an anonymous system, I'm completely in the dark about my donor. I have no possible way to find him or find any information about him. It's like looking for a needle in a haystack. Actually, that's how I describe privacy, as the needle can be found; anonymity is more like looking for a particular piece of hay in a haystack—completely impossible.

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As I stated before, there is no legal justification or legal right to anonymity. Donors must be accountable and have to be able to be found, preferably through a third person. They cannot disappear out into the woods without their social insurance numbers. We have to be able to find them so that they can follow through on their ethical responsibility as donors to be available to the child to provide them with information they might need. To my knowledge, in no other aspect of Canadian life is anonymity so embedded into our relationships and decisions as it currently is in assisted reproductive technology.

In all the biological relationships in society, we do not tolerate either parent dropping off their gametes and then disappearing into the anonymous wilderness forever. So why should we with gamete donation?

To begin, the donor is not Dad to me. I have a Dad. However, the genetic tie that I share with my biological father cannot be minimized or made to disappear. I carry it with me. It is visible in who I am and what I will be. I have obviously inherited heavily from my mother's genes when it comes to colouring and appearance. Nonetheless, in terms of personality and interests, there is little I have in common with her and that side of the family—but I still love her.

For example, I've always had an uncanny sense of direction. No matter where I am, without a compass, I can always find where I want to go and I can point to where north is. Neither my mother nor anyone else in her family has this ability. It's little idiosyncrasies like these that are always on my mind.

Over the years, I've tried to create sort of a visual image of what the donor might look like. We come up with, well, she's tall and I'm short, so I think he must have been short. We also think he probably has big hands, because people tease me about having big man hands—and I have smelly feet.

It's things like these that I'm constantly thinking about, and I'm always left pondering, trying to put the pieces together of who this man was and how this relates to who I am today. If I could somehow know who he was, it would not alter the essence of who I am. I know that already, but it would alter the way that I look at myself. Everything I already know about myself would be put into a different context, and I believe my perception of things would be altered.

It's almost like putting on a pair of glasses because your vision is no longer 20/20. It's frustrating, because everyone else can see things in the real light, but those of us who were conceived through anonymous gametes are left trying to figure out what's going on. It's a continuing feeling of unfairness and exclusion.

As a bit of a personal story here, when I was in grade 5 we had to do a family tree and a report about where our ancestors came from. I remember the feeling of exclusion and sadness I felt when I watched my best friend, Skye, fill in her family tree all the way back to the 1600s, alongside the family story that her surname indicated they were merchants. When it came down to me to write out my family tree, I looked on in envy at hers. I couldn't bring myself to write down my Dad's family.

Little things like these throughout one's lifetime serve as a reminder of what I and other DI offspring don't have and probably never will have—for example, talking about genetics and heredity in a high school biology class, or walking by a genealogical section of a bookstore. Perhaps it's having a friend show you a piece of jewellery that has been passed down through her family for generations. It is these things that people who know their true genetic heritage take for granted and quite often don't even realize the significance of. DI offspring are left to ponder for themselves who these missing relatives are.

Sometimes when I'm in Vancouver I wonder whether I pass him on the street. When I meet someone who was a UBC student around the time I was conceived, I look him over and wonder, could he be my biological father? What I do know is that there is an undeniable piece missing that I'm always subconsciously trying to find. And why should I when other Canadian citizens do not think twice about their genetic puzzle? Most of them don't even realize or appreciate what they have.

To continue creating future offspring with an anonymous system, knowing these facts, is unacceptable and irresponsible. Moreover, to give offspring so-called euphemized non-identifying information feels like a slap in the face, and from my point of view, I'd call it taunting information. Basically the message is, we know who he is but we will not tell you. Imagine the humiliation of walking into a government office and having someone who does not know you tell you this. Many offspring feel that this information belongs to them, so why should they have to go to a complete stranger to justify, knowing that they have the key to the donor's identity? What a horrible feeling it would be knowing that you're close yet so far away from ever knowing who this man, your biological father, really was.

Non-identifying information, I believe, is a joke. It's like making a gourmet meal, then putting it in front of me, and then telling me I cannot eat it. Even if I had the opportunity to have non-identifying information, I can tell you that it would not be enough. It would be something, but the desire to know who this man was would still be there—and I still have no dignity, as I have no say in the matter. The control and decision-making is still in the hands of the infertile couple and the donor.

The most glaring example of this that I saw in the draft legislation was that the donor can consent to having the information destroyed. Personally, I find this quite disgusting. That information is not just his information, it's my information. I carry it with me. I carry it in my genes. It will affect my family. I believe giving him this power is not right; it's unacceptable.

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Another thing, while referring to the draft legislation, I came to conclude that Health Canada has been leaning towards the creation of a dual system. This is when couples can decide if they want an anonymous donor or not, and donors can decide whether or not they want to be identified when the child comes of age.

I feel that to create a system of anonymity alongside one of openness is unconscionable. A class of marginalized citizens will be deliberately created—DI children without knowing their genetic origins alongside other DI children who do and more Canadians conceived traditionally. What shame and isolation the child created in anonymity will feel. We have to ask ourselves, why are we even thinking this is acceptable?

The feelings of unfairness and exclusion will be even more compounded in a situation like this as the child realizes that their parents had the opportunity to choose an identifiable donor, but instead chose the path of secrecy, shame, and deception. I can only begin to imagine the distress I would feel towards my parents if I knew they could have chosen a different route than anonymity. I know, however, this was not the case.

I would like to see a system where donors cannot donate unless they are willing to be identified if the child requests this when he or she comes of age at 18. When the child, who is now an autonomous adult with rights equal to those of every other Canadian, feels ready, he or she can go through a bureau or something of this sort to make contact with the donor. The donor enters the program knowing this before donating. After all, he entered into this voluntarily; as offspring, we never asked to be put into this situation.

And from my many discussions with DI offspring over the years and with others who are adopted, I can tell you that at the core we share the same issues and desires of wanting to connect with that lost parent. In this day and age, we recognize the need of adoptees to know their genetic heritage. I wonder why, then, in light of all the research in the area of adoption, an anonymous gamete system in any form would even be considered. I've yet to meet an offspring conceived anonymously who says, “Gee, that's just wonderful. I'm so glad I'll never have the opportunity to know.”

On the contrary, these people are some of the most passionate advocates for openness. When talking about this issue, I often hear the debate of right to reproductive choice thrown in by the medical profession; however, I never made the choice not to know who my biological father is. I find it infuriating that my choice of whether I want to meet the donor has been taken away from me. The point is not whether I want to meet him, it's that I have the choice to do so in a dignified manner.

The way the draft legislation stands now, the power and choice remains in the donors' and the parents' hands; yet they all entered into this agreement willingly as consenting adults, and the resulting offspring did not.

There are two final issues I wish to address. They are common excuses given by the medical profession in opposition to an open system, and quite frankly, two myths I have heard over the years again and again that I'm very sick of hearing. The first is that we will all go knocking on our donor's doors demanding money for our college tuition. This is absolute nonsense. If somehow I could meet my donor, I would treat him and his privacy with the utmost respect. I would not go barging in on his life. As for the money issue, a simple law—as was evident in the video—clarifying the legal status of the donor to protect him from financial obligations would be necessary to dispel this.

The second excuse is that all donors will disappear if it is required that their identifying information be released to their offspring at 18. I believe Rona is going to comment more on this. Other countries that implemented an open system simply haven't had this happen. Anyway, even if it did, I argue it's better to have an accountable, slightly smaller system than a large, unregulated one—a system where the priority has been that the supply must meet the demand for the infertile couples at the cost of considering the needs of the resulting offspring, who have been treated like commodities in a baby factory.

As a society, I believe we must balance our compassion for the pain of the infertile with the consciousness of not manufacturing babies just to ease this pain without thinking of the effect on the lifespan of the resulting child.

I'm almost done.

Bill Cordray, an adult DI offspring and a personal friend, described the experience of genetic bewilderment in better words than I could and I quote him here:

Who am I? That is a basic question that everybody asks, and most people form their identities seeing their mirror images in their own family, as well as by environmental influences and social attachments to people. A major key to everyone's identity is their genetic blueprint, which most people can read in the faces of their family and can see in the photographs and stories of their ancestors.

As people conceived through assisted reproductive technology, we share the same struggle for full identity as adoptees. Medical professionals rarely look beyond the microscopic view of zygotes, gametes, blastocytes, embryos, or the ultrasonic images of the foetuses to see the human face of the people they create. Their primary focus has been the pain suffered by infertility patients. They've not considered the need of the children, who are the central reason for their profession.

That's the end of the quote. At the end of the day for the doctor, it's just the job. These issues are a mere professional debate. But for the other DI offspring and myself, it's our life; it is we who have to live with the decisions made for us before we were born.

You also are faced with a job to do. As members of the committee, you have the opportunity to decide what form and shape the identities of future Canadian offspring conceived through assisted reproduction will become. Perhaps before you decide, I can ask each of you to put yourself in my shoes. Could you honestly say you would be satisfied not ever knowing who contributed to half of your identity?

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That's it. I want to say thank you for having me here and for listening.

The Chair: Thank you very much, Olivia.

Ms. Olivia Pratten: You're welcome.

The Chair: The next speaker will be another one from the Coalition for an Open Model in Assisted Reproduction, and it is the already-referred-to Rona Achilles.

Ms. Rona Achilles (Coalition for an Open Model in Assisted Reproduction): I'd just like to say that Olivia was only three years old when I first met her mom, so this is quite an amazing moment for me. I have almost motherly feelings of pride.

I'm an assistant professor in the faculty of medicine at the University of Toronto and an independent health policy analyst. My doctoral thesis, begun in 1981, is a study of participants in donor insemination entitled “The Social Meanings of Biological Ties”. I argued for the rights of people conceived through DI to have access to identifying information about their biological father.

I was also the primary consultant for the Royal Commission on New Reproductive Technologies on donor insemination. In 1996, under commission by Health Canada, I designed an implementation plan for an open system of gamete donation.

I've had the chance to observe the developments in this field in the last 20 years. In 1981 there was little more than a handful of books and articles on the psychosocial aspects of DI. There is now a substantial body of research in this field, as well as an international network of researchers.

I've seen the growth of DI parent support and lobby groups in several countries, as well as the emergence of DI offspring organizations. I witnessed more and more prospective DI parents express concerns about their children's access to identifying information. In addition, a Toronto sperm bank recently reports a rapid increase in prospective parents bringing their own donors to circumvent the problem of anonymity.

During this period there's also been legislation passed in several countries around the world that ensures that the legal rights and responsibilities of a sperm donor are severed and that his offspring have a right of access to identifying information about him if they so choose. Sweden, Holland, Switzerland, Austria, and the state of Victoria in Australia have all passed such legislation. New Zealand and three other states in Australia have legislation pending.

All of these countries have thriving donor programs. Contrary to other evidence you might hear, it's entirely possible to implement an open donor system and retain a viable supply of donors. Experience in other jurisdictions suggests that a combination of legislation and education focused particularly on physicians is a strategy that is effective for implementing an open donor system while retaining a health supply of donors. Physicians need to understand that third-party reproduction is not just the solution to infertility, but involves the task of creating healthy families. Fertility specialists are brilliant at finding solutions to infertility, but they are not social scientists, and creating healthy families is a social, not a medical, project.

Sweden passed legislation in 1985. Physicians opposed it and there was a temporary drop in the supply of donors. This was actually due to a number of factors, including the introduction of HIV screening, the use of frozen sperm, and the closure of private clinics. This situation was temporary, and since the early 1990s there has actually been a greater supply of donors than there had been prior to the legislation. Data from the DI programs in hospitals from 1989 to 1993 indicates that the number of donors has increased by 65%.

New Zealand made the transition to an open donor system more smoothly. In 1987 they amended their family law act to clarify the legal rights and responsibilities of the sperm donor and the mother's husband. They worked with fertility clinics to shift their attitudes about an open donor system. Fertility clinics in New Zealand no longer accept gamete donors unwilling to provide identifying information to their offspring at the age of 18. New Zealand continues to have a sufficient supply of gamete donors.

Nor should we assume that even under conditions of anonymity, men who donate sperm have no interest in their DI offspring. There are several studies that have explored whether donors would be willing to consent to revealing their identify to their DI offspring at the age of majority. Results vary widely in these studies, which are from various countries and social contexts, with a range from 12% to 73% of donors saying they would be willing to consent.

These donors were recruited under conditions of anonymity, and therefore these results should not be seen as indicative of the potential for an open system. We should be surprised, in fact, that any donors recruited into an anonymous system would be willing to consent to revealing identifying information.

I have a friend who was at medical school in the 1970s who tells me that many of her male friends were unwilling to become donors because the system was based on anonymity. How do we know there isn't a pool of men who would be willing to be donors only under a system of identity release? In fact, we do have evidence that this is the case.

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In the U.S., the Sperm Bank of California has had an identity-release program for 18 years. Currently, they are finding 70% to 80% of parents choose the identity-release option, and 40% to 60% of donors are willing to be identified. This has recently increased to 75% of donors. An American sperm bank, Xytex, has established a Canadian franchise in Toronto. They began recruiting identity-release donors last fall, and have had no problems finding men who are willing to do this.

The preamble to the proposed legislation sets out admirable principles, including the paramount need for measures to protect the best interest of children. The best interests of offspring—and I would like to include families—are not protected by an optional system of consent by donors. Rather, it is the perceived interests of donors that are being protected here.

This is based on a misconception that no man who donates sperm could have an interest in his offspring and that the whole system would fall apart if an identity-release system were introduced. The assumption that donors would have no interest in the result of their donations has been challenged by several studies. A retrospective study, for example, found the interest of donors recruited under an anonymous system increased as their own children grew older. Two-thirds of the donors were strongly interested in meeting their donor-conceived offspring. Only one of the 39 donors surveyed had no interest in meeting their offspring through DI.

Over the past few decades society has progressed to a point where we believe barriers to information in many spheres of life should be altered to provide open access. The most striking example is in the field of adoption, where we've evolved from “Children should never be told”, to “Children should be told”, to the current situation where we generally endorse the view that adoptees should have access to identifying information about their birth parents.

We never used to tell terminally ill patients they were dying. What was the point? But we do tell them now. We now operate from the standpoint that honesty is the best policy.

Balancing the right to information with the right to privacy is a complex task, especially given that we are inundated with more information about everything than was ever before possible. This is true with assisted human reproduction as with other spheres of life.

The Privacy Commissioner of New Zealand offered his opinion on these issues in a 1999 report. He submitted that the anonymity of the donor is probably not legally enforceable under the New Zealand Privacy Act. He also suggested information about the donor, including his identity, is probably health information, and even donors who participated under conditions of anonymity may not be able to retain this status, since, and I quote, “the offspring's interest in knowing their genetic origins may be seen to outweigh the violation of the donor's privacy”.

We are not, however, asking for a retrospective identification. We are asking that all children born in the future have access to identifying information about their biological and genetic parents through third-party reproduction.

We don't know how many children are born in the country annually through donor insemination. This is a travesty in itself. A rough estimate would be approximately 1,000, and that does not include egg or embryo donation. If this is true, there are at least three children per day born in this country who won't have access to identifying information about their biological parentage. There is, to my mind, a sense of urgency here.

I also work in another field, that of complementary and alternative medicine. Two years ago there was a Standing Committee on Health on natural health products. Six months after their report was tabled, a federal Office of Natural Health Products was established. Two years later we have a regulatory framework that appears to satisfy all the major stakeholders. This was not an easy task, but it was accomplished by the work of the standing committee. We understand what we are asking here today is not an easy task either, but it is possible, and it is important.

The Chair: Thank you very much.

Our next speaker comes as an individual. I would ask Barry Stevens to talk to us.

• 1200

Mr. Barry Stevens (Alliance of People Produced by Assisted Reproductive Technology (APPART)): Thank you.

I'm also a member of the coalition, but I'm speaking today on behalf of APPART, the Alliance of People Produced by Assisted Reproductive Technology. APPART is the only organization that represents the offspring of assisted conception in Canada and internationally. Olivia is a member too.

I'm an offspring of artificial insemination by an anonymous donor. I was conceived in England, not Canada. It wasn't really being done in Canada at that point.

I'll try not to repeat what other people have said in my remarks, so I can make them a little more brief.

We appreciate the recognition in the legislation of the paramount need for measures to protect the best interests of children and the reference to promoting health, safety, dignity, and rights. We are discouraged that the act, after that, pretty much ignores them. As far as I can see in the act, we have no enforceable rights. Any rights that can be claimed at the discretion of others are really rights that aren't worth having.

Primarily, we feel the minister has taken a seriously wrong turn. He perpetuates the practice of allowing the deliberate production of people who can never know their biological and personal origins, as you've been hearing.

We propose an important change in the legislation. We want an end to the anonymity of sperm, egg, and embryo donors. Once again, I'm going to repeat the distinction you have already heard, but it is an important one because it's often confused. We're not talking about people who have donated under a contract of anonymity. It is not our position to retrospectively identify past donors against their will—we're not dragging anybody out of the closet.

What we do want is that the legislation be altered so the only people who are accepted in the future for egg, sperm, or embryo donation in Canada are those who agree to be identifiable to their offspring when those offspring reach the age of majority, or maturity—it's a debatable point, what age that is.

One often reads that what we want means an insoluble conflict of rights between those of gamete donors to remain anonymous and ours to know our genetic origins. Of course, if Parliament legislates a system where only those who are willing to be identified are accepted as providers, there will be no conflict of rights.

Anonymity is wrong for three reasons, primarily. It deprives us of essential medical information; it promotes a culture of deception and secrecy; and it leaves a gap in the formation of a person's identity.

First, on the medical aspect, anonymity has the potential to shorten our lives. This is an age of genetic medicine. Those who have no knowledge of half their origins are at a disadvantage. Insurers, public and private, will test someone for a disease only if there is a family history. No family history, no test. Ergo, unnecessarily early deaths for many offspring and their descendants. I recently had a hard time, actually, getting a colonoscopy for that same reason.

It is wrong to deprive us of this information. The best resolution, we feel, is to make the donor's medical information available to recipient families up until the offspring's age of majority or maturity, and the identity of the donor available after that.

Clause 18 of the legislation, as I understand it, refers to the collecting of health information from the gamete provider. A registry is to be kept that “might” be accessed by the offspring, apparently at the minister's discretion. This is not good enough.

For example, the minister himself has courageously spoken about being treated successfully for prostate cancer due to an early diagnosis, which was the result of a test he had because his father died of the disease. It's pretty obvious that if Minister Rock had been a sperm-donor offspring, he would never have known he had cancer until it was too late.

The majority of gamete providers donate when they are young men or women. Very often their parents and grandparents are still alive. The medical information taken once from a young person is completely inadequate. The information needs to be updated throughout the life of the gamete provider, and it needs to be available to offspring or their parents on request.

Frankly, I wouldn't bother even legislating this information if the donor has the right to just destroy it. It doesn't have much point. It needs to be available. This is essential, even with anonymous donors. The withholding of essential health information from us violates the principle of equality that our health care system and our society, our nation, are based on, and it contradicts the paramount need to protect the best interests of children.

On the second point, secrecy, families who have an important secret at the centre are families in which communication is constricted. It's difficult to talk about this. I have to speak a little personally here too. It's a difficult thing to explain.

Many doctors promote deception. They counsel recipient couples to forget. They say it doesn't matter; they don't need to tell their child. I think one of your doctors said something similar. The doctor who arranged for my conception told my parents they must lie.

The irony here is that if it does not matter, then why lie? The anonymity of the donor is key in this climate of deception. Many parents who'd like to tell their children about their origins don't, because they can't answer the inevitable question. So they choose to deceive. This endangers our health. It also isolates the family members from each other and creates anxiety and unnecessary hurt. You have to watch for certain subjects, my mother says, to make sure a conversation doesn't lead down that particular path. This creates barriers to communication within the family.

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Kids often sense a secret. They know how different they are from their non-biological parent, as Olivia was saying. They often suspect that they're adopted or that their mother had an affair.

Secrets sit in the family like a landmine. They have to be tiptoed around, and sometimes they go off. Studies show that most parents tell someone, so often the secrets come out, often during a family crisis, or they find out from someone else, all of which is pretty destructive.

Canada has long used a definition of health that includes psychological health. To continue to allow anonymity, we feel, compromises the psychological health of those of us conceived through gamete donation.

APPART argues that nobody should receive third-party gametes or embryos unless he or she agrees to tell the offspring of their origin. You will hear that this is a terrible intrusion into free choice, but it only brings ART to the standard of adoption services, as we've heard, where secrecy and shame are no longer the norms. No adoption service now would even approve prospective parents unless they had a plan to disclose, and we deserve no less.

The final item is reasons of identity, the most difficult to communicate. Almost every donor offspring we have ever communicated with has expressed anger over being deliberately deprived of the knowledge of his or her biological origin. It's like not having a mirror where you can see some part of yourself, or having the first chapter missing from the story of your life. The phrase that Olivia used, quoting Bill, was genealogical bewilderment.

It may seem old-fashioned to care about biological paternity, and it may make us sound as though the shadows of racism and Nazism hang over this whenever you talk about the importance of genetic bonds. It has been our view that the only thing that's important is nurture. But I don't think any reasonable person nowadays can argue that genetics are irrelevant to who we are. I don't think that makes you ignore social and nurturing aspects to personality.

Biology, history, and culture all show that knowledge of who you come from has always been important. One-celled organisms can distinguish between kin and stranger. Humans, as social animals, evolved great sensitivity to who is family and who is not. We feel this. Scientists have reasons for it, but we simply feel it. We express it in myths in literature: for example, Moses and Oedipus, King Arthur in Shakespeare, up to Luke Skywalker and Darth Vader, who turned out to be his dad. Stories of a hero finding resolution in the revelation of hidden paternity have captured our imagination for centuries. To dismiss the importance of the biological tie is to dismiss our culture, our history, and also most major religions.

But it's personal, and you have to hear it from personal stories. Some people talk about feeling incomplete. Others talk about trauma. Others speak only of a deep curiosity. But I want to say that it's not just that it hurts and we're traumatized and therefore you have to.... We feel we shouldn't have to beg or display a wound in order to get what is commonly the birthright of Canadians. It's simply wrong to deliberately deprive future ART offspring of the information of who our biological parents were, information that should be ours by right.

I'm going to outline very quickly a couple of arguments against it that I've heard. What if giving us our rights harms others? The two most commonly repeated arguments against identifiability are that there will be no more donors and that we'll sue our donors for support. These arguments are both false.

By the way, if anonymity is wrong, it's wrong, and the possibility that sperm providers will be reduced in number if they have to be identifiable doesn't mean we should shy away from it. Recently Health Canada determined that because of concerns about chlamydia the sperm supply needed further testing in this country. In effect this decision reduced the number of pregnancies through DI last year. Because the health of women is an absolute, and rightly so, Health Canada did it. If our health is also an absolute, then identifiability will be insisted upon. However, I think Dr. Rona Achilles has presented that case about donor drop-off. I won't repeat it.

In respect of the law regarding severing parental rights and responsibilities on the part of the donors, we really reject Health Canada's position that no progress can be made on identifiable providers until all provinces pass a law identifying the recipient parents as the legal parents and therefore protecting the donors from being sued. A sperm bank in Toronto has proceeded with offering identifiable donors in the absence of a law in Ontario. Their legal adviser said there's no legal exposure for the providers, just as there is no danger that birth parents are going to be chased for money by children they have placed for adoption. It's not something we fear in adoption. It's not something you need to fear here.

• 1210

You'll hear from doctors who are opposed to our position. Believe me, you will. Canadian doctors are brilliant at helping infertile people have babies, as Rona has said, but we really can't expect them to set social policy on these matters, any more than we would expect our auto mechanics to tell us where we should drive to on our vacation. I mean no disrespect with this analogy. My own father was a physician. When I say father I mean my real father, my parenting father, who for me is my father. Building families is not a doctor's area of expertise, and they should not be allowed to claim it as such.

With regard to specific arguments, I've heard it argued that lots of people are born not knowing their paternity, and you hear these absurd figures of 10% to 30%, which are actually wrong if you look at the studies. So it's implied, what's wrong with a few more mistaken fathers? What's the harm? Apart from the fact that would aim at adultery as a standard of care, it's a false argument. Every year around the world thousands of babies are born blind. That doesn't make it okay to deliberately put out babies' eyes at birth.

Some say that the parenting family is all that matters. There's a hypocrisy in this, apart from it being odd for people who base their craft on genetics to endorse its hypocrisy. After all, it is doctors who offer infertile couples children to whom they have some genetic connection. If this weren't important, then the parents could adopt. When parents return for a second child, they usually are offered the same sperm or egg provider so that the second child will be a full sibling of the first. My own sister is my full sibling. If the genetic connection is so important to the doctors and the parents, why wouldn't it be important to us as well?

A doctor I know, Dr. Art Leader, said to me that products of donor conception do not have the right to know their origins because fetuses have no rights. That seems a facile argument to me. I'm not a fetus. Maybe fetuses don't have rights. That's another debate. But we become babies, then we become children, and then we become adults. We have rights.

We've also been told that the adoption analogy, which you've heard from Catherine and others, is false. A baby is placed for adoption usually because of some traumatic disruption. We are the result of a generous gift. Therefore, our need to know our origins does not have the same legitimacy. This is an outsider's misunderstanding. Neither the adoptees' desire nor ours to know our origins derives necessarily from the circumstances of our conception. It derives from genealogical bewilderment, the lack of essential knowledge needed for the formation of our identities.

So why not just provide choice? This is a country based on freedom of choice. Why not just let those parents who want to have anonymous donors have anonymous donors and those who want to have identifiable donors have that? That would seem to be the best solution, and that's the solution that in fact Minister Rock has pursued.

So we're portrayed as opponents of complete free choice, and it's true. So often in this field the choices of the doctors, donors, and parents can leave the offspring with no choice at all. A dual system creates two classes of offspring, as Olivia has said. This is unequal and wrong. I would remind you also that choice is limited frequently in ART for the sake of the parents' health and the well-being of the child. People are not free to engage in commercial surrogacy, to select the sex of their child, to insert animal genes to make the child a better athlete, etc. As we saw, people are not even free to use sperm in tests for chlamydia. The limit of freedom that we ask for is essential for the psychological and physical health of future offspring. We know this better than anyone.

Sperm banks have said that identifiable donors are more expensive. I believe, by the way, that this is perhaps one of the more compelling reasons for the opposition of the medical profession. This is private medicine. It is less costly to handle anonymous tissue than it is to deal with relationships.

The Chair: Excuse me, Mr. Stevens, you're at the 14-and-a-half-minute mark.

Mr. Barry Stevens: Oh, I'm sorry. Can I précis the other points? I'll say what they are, and you can address them later on.

Anonymity is cheaper. Identifiability is more expensive. But if you create a level playing field, there'll be no competitive advantage to a clinic that's running a business offering anonymous donors. So it would in fact be to their advantage.

• 1215

The other reason I think many doctors actually oppose it is that the poor fellows were obliged to be sperm donors by the people who were teaching them fertility medicine. They weren't really doing it by choice. I know of a couple of instances where that was true. They have a vested interest.

There's a deeper root to anonymity, which is shame. My father, for instance, knew he might be mocked if people knew he was infertile. We would have been regarded as bastards. He therefore kept the secret. I also believe he feared that I, his son, might reject him if I knew the truth of my origins. I'm sorry he bore that secret. I wish I could have told him that for me he was very much my father. This is true for all of us, pretty much. We don't seek new fathers; we just want to know our origins.

You can't legislate away shame, but we can ask you to put a stop to its hurtful and dangerous expression in anonymity. To quote my newly found half-brother, “Shame is like a fungus, it grows best in the dark. Let in the light and it dies.”

For most of us offspring it's too late, but we insist that the practice of producing people who are deliberately prevented from knowing their origins be stopped. It's cruel, wrong, and, perhaps worst of all, unnecessary.

Thank you.

The Chair: Thank you, Mr. Stevens.

We're left with just about 45 minutes, so I think I'm going to have to restrict it to five minutes each.

We'll start with Dr. Lunney because he got cut off at the last meeting. He and Madam Thibeault are going to lead off this time.

Mr. James Lunney (Nanaimo—Alberni, Canadian Alliance): Thank you, Madam Chair.

I would like to thank all our witnesses for a very interesting presentation. It certainly highlights the importance of this issue—our human connectedness. It's certainly a huge problem in our society with children because of family breakdowns and shuffles. There are a lot of children out there who don't know where they belong.

With this issue we have a chance, perhaps, to rectify, with the developing technology, a very serious concern for those who would have the opportunity for information. So you've raised a very significant and important question for us today.

I have a particular interest in this. I appreciate the presentation of Shirley and Olivia Pratten. I see you're from Nanaimo. We haven't met. It depends on whether you're from north or south of Nanaimo whether I'm your member of Parliament or not.

Ms. Shirley Pratten: You're in Port Alberni, right?

Mr. James Lunney: Nanaimo-Alberni.

Ms. Olivia Pratten: I think you are our MP.

Mr. James Lunney: If you're in the north end, I am.

Ms. Olivia Pratten: We're in the south end.

Mr. James Lunney: You're in the south end, so Reed Elley is your MP. Having clarified that, we're still very interested in your case.

As a starter, I'd just like to know, you mentioned somewhere in this testimony...it came out there were about 1,000 a year, we guess, by donor.... Is that right?

Ms. Rona Achilles: I think it's more. It's probably an underestimate. Talking about problems with collecting health information, there are inadequate records; there's inadequate follow-up. We don't know.

Mr. James Lunney: That's interesting.

I just want to ask about organization within your own group, as a starter here. Is there a group of people on Vancouver Island, for instance, that you relate to, who were conceived by donor insemination?

Ms. Olivia Pratten: With my mom's group, initially it was support for our family. When I was younger there was always a barbecue in the summertime, so I kind of got to know other DI offspring as I was growing up. I know several who are located in Vancouver. They're close by.

Mr. James Lunney: Interesting.

Ms. Shirley Pratten: They're on the island, as well as Vancouver.

Mr. James Lunney: Mr. Stevens organized a national gathering of DI....

Mr. Barry Stevens: International.

Mr. James Lunney: Would you comment on that?

Mr. Barry Stevens: Yes, I think it was the first time any people made by science, not sex, had ever gotten together and spoken.

Ms. Catherine Clute: The Infertility Network was involved in organizing that as well.

Mr. Barry Stevens: Yes, that's right. The Infertility Network organized it in Toronto last August. Many of the things you're hearing now are what we were saying then.

Mr. James Lunney: Right, excellent.

In relation to that, coming back to Ms. Roch and perhaps Catherine Clute, the current legislation has the anonymity provisions in it and the disclosure of information. From the perspective of the Canadian Institute for Health Information, would you like to comment on your perceived problems with an open system?

Ms. Joan Roch: We're not commenting on the open system for this kind of information, as long as there are strict rules in place dealing with the collection, the allowed uses of that information, and the subsequent disclosure of it.

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We're responsible for creating a lot of national comparative reports for the purpose of assessing the effectiveness of treatments, and that sort of thing, so from that custodian's perspective, presumably you would not want to have identifiable data coming out in reports. It's very challenging to make the data identified enough that it can go into reports, but wouldn't identify somebody by accident. That's our perspective. It's not in relation to the role or purpose of this registry. They're quite different purposes.

Mr. James Lunney: On the openness concept, it certainly spells out accountability. With the international examples that have been given, I don't see why there shouldn't be a good reason to have adequate records and accountability, as has been spelled out for us here, for the information to be made available to the parents up to the age of maturity of the child, and then available, on request, to the child.

We said we'd surely hear doctors testifying against this, in favour of the need for anonymity. Maybe some others in the committee can correct me, or the chair could help me with this, but I don't know, to date, if we've had a lot of evidence supporting the necessity for privacy in these issues.

The Chair: When the medical associations were here, they had other agendas to pursue. They didn't really comment on this, as I recall. We're also not finished yet, but so far we haven't really had much commentary on that whole aspect of the proposed legislation. You are the first people to—

Mr. Barry Stevens: They, presumably, would be happy with the way the act is written at present.

The Chair: That's probably a conclusion one could draw, because they did comment on sections of the act they didn't like. So the fact that they didn't comment on that section would indicate their acquiescence.

Mr. James Lunney: I would just like to thank these witnesses for a very compelling argument that I think we'll want to consider seriously here.

I defer to other committee members, in the interest of time.

The Chair: Thank you very much. Maybe you can make your point after another question.

We're going to Madam Thibeault now.

[Translation]

Ms. Yolande Thibeault (Saint-Lambert, Lib.): Thank you, Madam Chair. Good morning everyone.

First of all, can someone tell me when the video we saw earlier was produced?

[English]

Ms. Shirley Pratten: The first one was in 1985 and the second one was in 1989.

[Translation]

Ms. Yolande Thibeault: Thank you very much, because it is important to know how long it takes to find out the important things.

[English]

Ms. Shirley Pratten: Yes. All those years.

[Translation]

Ms. Yolande Thibeault: I have so many things to ask you, I hardly know where to begin.

I would like to begin by addressing a subject you barely touched on—namely how much it costs a couple that goes to see a doctor to tell him they want a child; how much does it cost them to have that doctor help them have children?

[English]

Ms. Shirley Pratten: I missed the first part of your question.

[Translation]

Ms. Yolande Thibeault: How much did it cost you to produce a beautiful girl like Olivia?

[English]

Ms. Shirley Pratten: Okay, thank you.

When we did it, nearly 20 years ago, we paid $50 for each insemination. It took about seven months before Olivia was conceived, and we went two or three times a month. I don't know what the cost is right now for people. I think it's different in different provinces. It's higher.

[Translation]

Ms. Yolande Thibeault: That's what I've been hearing from people I've discussed it with; apparently the cost is much higher than that. I am hearing that it is in the tens of thousands of dollars.

[English]

Ms. Shirley Pratten: For donor insemination? I don't think so.

[Translation]

Ms. Yolande Thibeault: No. Excuse me. That is for in vitro. That was a mistake on my part.

In any case, my point is: do you think the costs of such procedures should be covered under medicare? Otherwise, only the rich can actually access them. If people are not so well off, then too bad for them; they won't have any children.

Go ahead.

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Ms. Catherine Clute: I would like to answer that, Madam Chair, if you don't mind.

The Chair: Yes, please do.

Ms. Catherine Clute: I am from Nova Scotia. A lawyer in Halifax by the name of Alex Cameron took the provincial government to court to have his infertility costs refunded. He lost his case before the Court of Appeal and applied for leave to appeal to the Supreme Court, but his application for leave was denied. This is a very troubling situation for people like us, who work with individuals experiencing infertility problems, because we end up creating two classes of persons.

I often see people who tell me their doctor told them they should do such and such, but since they can't afford to do that, they opt for a different procedure that may not be as effective but is more in keeping with their budget.

Since Olivia was conceived, the cost of sperm has risen to several hundred dollars for each treatment, if I am not mistaken. The rise in price has been phenomenal.

Ms. Yolande Thibeault: As you say, the danger is that we are creating two classes of persons and, from what I gather, that is already the case in terms of confidentiality of information.

Mrs. Pratten, when you went to your doctor with your husband, some 19 or 20 years ago, did the doctor advise you then to say nothing and keep the whole process secret?

[English]

Ms. Shirley Pratten: Yes, he did. I remember asking how we would tell our child. He said most people didn't say anything, and it was best that we didn't say anything either. So I'm not saying he told us we mustn't tell, but we had nobody else to turn to. We didn't know anybody, so we looked to him for advice. I think he was doing the best he could within the capacity of what he knew.

Again, as I stated in my testimony, these are not medical issues. Medical doctors are not qualified to deal with the counselling that's required for these complex reproductive processes. Sometimes you'll hear people say supportive counselling is what people need. As you saw on that tape, it's more like psychotherapy.

I speak from the perspective of a mental health professional, as well as from personal experience. This is not something that requires supportive counselling from a medical doctor; it requires more in-depth counselling from a trained counsellor, who knows what these issues are. It's a lifelong thing.

The Chair: Sorry, Madam Thibeault, there's no more time.

Ms. Yolande Thibeault: No more time?

The Chair: It's Mr. Merrifield's turn. I have to be really strict because I know how tired people are. We've already had an hour and a half and then started again. We have another hour and a half.

Mr. Rob Merrifield (Yellowhead, Canadian Alliance): You're saying we started early this morning.

The Chair: Yes.

Mr. Rob Merrifield: Yes, we did.

I find it very interesting and a little bit refreshing because you actually put a face behind what we've been talking about in this piece of legislation. I think we've failed, in this legislation, to really look beyond the Petri dish.

Scientists or legal people who have come to us on this legislation have led us away from the idea that there is a face behind every embryo. I'm quite fearful, when I look at this and try to discern how we're going to bring it into legislation, that we'll forget the faces of Olivia and Shirley, and so on. So I really thank you for coming. You have refreshed us as a committee, to show us that we are talking about human life.

When it comes to the idea of open information, you don't have to convince me on that one. On the testimony of the dairy farmer, I grew up as a dairy farmer, so I understand full well what happened. In fact, a little bit beyond that, I'm a certified artificial insemination technician, so I know what we're talking about when it comes to identification.

I don't want to make light of this, but I do think there's been some psychological fallout in my cattle. I don't think there's a smart one in the bunch. That has nothing to do with this, but it does point to something that happens in the cattle. You take the eight best in North America and you examine 70 different traits. You take the best female and the best male and you match them. Only one out of every eight of the very best males' semen ever gets into the semen tank.

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I would hate for that to happen, to look for Wayne Gretzkys and models and put them together as the way we're going to evolve the next generation in North America. It would eclipse what happened in Germany.

With respect to the idea of information following the child and having that as a right, you don't have to convince me on that one. I think we do have to look at something with regard to that.

Getting to a question, I do know that when it comes to sperm and the information—and we've had witnesses here—there's a significant amount of sperm that comes from the United States. What information comes with that sperm? Does anyone here know?

Ms. Catherine Clute: The clinic used by most of the patients who come to our support groups is the only clinic in Nova Scotia. They only deal with Xytex, the firm in Georgia that supposedly has videotapes, pictures, and all kinds of cool things. I haven't met a single person who's seen a videotape of their donor. In fact, I've met several people who have had other people choose a donor for them. The nurse says these are the people, and you might want to choose between these two. If there is information, it's not always getting to the patient. It isn't in Nova Scotia, anyway.

Mr. Rob Merrifield: The other thing is that this comes under provincial law somewhat and has to do with provincial clinics. I'm wrestling with this: should it be according to provincial or federal standards, or does it really matter as long as it's all open and we have the information? It's going to be international, the way we've talked about with other countries. I don't know if you have some comments on that.

The Chair: Ms. Roch.

Mr. Joan Roch: Speaking from a health information perspective, we certainly would support and strongly recommend nationally based standards, particularly for this kind of information. Otherwise, it's very difficult to control. It's very difficult to create valuable reports you can depend on, whose analysis you can rely on.

Mr. Rob Merrifield: Should that be paired with, say, a United States system if that's where we're getting donor sperm from?

Ms. Joan Roch: I know in some of our systems we strive to have parallel, or, if not parallel, similar, structures with regard to international coding systems—if that's what the question was.

Mr. Rob Merrifield: Thank you.

Ms. Joan Roch: At the same time, I do understand. This is a difficult issue because the health care delivery system is primarily provincially based.

The Chair: Thank you, Mr. Merrifield.

Mr. Alcock.

Mr. Reg Alcock (Winnipeg South, Lib.): Thank you very much. I'm delighted to be here, frankly.

I want to start by congratulating you, Shirley, and by thanking Barry, Olivia, and you, but particularly you.

Just to give you a bit of background, I was the director of child welfare in Manitoba back in the early 1980s and led the rewriting of the Child and Family Services Act, where we looked at this issue of open adoption. It's always the people who come forward first who take the biggest risk and provide the greatest leadership in trying to change societal values on these issues.

My personal position is that I have absolutely no opposition, nor can I see any valid opposition, to an open registry and an open flow of information. I think it should just be dead simple to do.

I want to raise a slightly broader issue, though, one that is likely going to come back before this committee many times over the next year or two. I would argue that the most important thing we could do to improve the quality of health care and health care management would be to build this national health records database. I think there is no other instrument we could create that will tell us more about how to manage health care and build understanding about our own health care. I think part of the problem with doing it is driven by two forces: ignorance and the inevitable fear of accountability that comes out of these systems when you start to collect data and organize it in some fashion.

The ignorance part relates to the kind of societal changes we've gone through repeatedly. In my lifetime—and I'm no longer young, unfortunately, as my daughter tells me, Olivia—when the young girl got pregnant, we sent her out of the community because of the shame of it. Our attitudes have changed radically just in my lifetime, and they will change even more radically as we become more and more aware of this. The issues of heritage, parenting, and all that are incredibly important.

Catherine, you also mentioned something we're going to have to get into in this committee, namely that it's not just about the act of creating a child, it's about all the other things that go into making the decisions. We're talking about things like surrogacy that, unless thought through and unless we're consulting and putting it in the hands of professionals who deal with this issue of attachment and parenting.... We've left it too long. We have lawyers in the country arranging private adoptions. They're not qualified to work with parents on issues like bonding with a child. There are some sorts of help and some knowledge we have created over the past decades as we've experienced the terrible problems that arise from bad decisions.

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I used to get confronted all the time by adoptive kids when they had genetically...or on simple things like marrow donations. We didn't know who the other parent was. I had the right at the time to open the files, but it was always a terrible process, in part because of the thing that raises, poor record keeping and poor tracking. We used to use bill-payment skip tracers to find parents because we had no other mechanism for doing it.

I think this committee could take some strong positions that would be very helpful both with regard to the need to build the information structures that answer Olivia's question about whether the data is going to be lost—which happens—and to having it available in some usable form. Also, let's be supportive of a policy structure that reverses the paradigm and says, open this. This is key, and let's not allow our discomfort with sexuality and all those residual feelings we have about newness and change to interfere with good practice.

Joan, if I may say so, at some point we have to challenge doctors about accountability and control. The world has changed in the same way the world is changing in every other facet.

I don't have a question. I am just really pleased to have been here.

I really want to thank you. It's important work.

Ms. Shirley Pratten: Thank you.

The Chair: Next we have

[Translation]

Ms. Picard.

Ms. Pauline Picard (Drummond, BQ):

I want to begin by saying, Olivia, that I found it hard to listen to your testimony. In any case, I want you to know I was very moved by what you said.

Mrs. Pratten, I would like to know what the procedure was when you met with your doctor in terms of... Were you allowed to make a choice? Did the doctor give you a choice as to the sperm donor? Did the doctor describe the donor or provide you with any information about him?

[English]

Ms. Shirley Pratten: No, he indicated that he would try to match the donor physically through Olivia's dad as much as he could. He didn't actually say not to ask any more questions, but we got a very distinct feeling of pressure not to push it any further: this was the way it was, and if we wanted it, this was the way it had to be, and that was that.

Ms. Olivia Pratten: I'm answering your question as well. When you got to talking about information.... Later, when I was about six or seven, my mom wrote to the doctor asking for information about the donor. He said that he'd have to ask his secretary, but he thought the donor was 5 feet 10 inches tall and had blond hair and blue eyes. Well, I don't really believe that.

I haven't seen this doctor. I have an appointment set up with him for when we go back to B.C. on Monday. I know he's not going to give me anything. Based on other offspring's experiences with this particular doctor, I don't think the information still exists. He says something like, “I always keep it for six years, so why would I still have it?” I'll go to him, and it'll be me facing this doctor and saying, “I want to hear out of your mouth that you don't have anything.” I suspect that already. He might say he can't find the file or something like that, but at least he'll be answering my questions. It's a continuing process, and I'll finally be able to close the door on that aspect and say, no, he doesn't have anything.

That's why I'm glad to be here, so we can help future Canadian offspring. I hope there won't be another offspring sitting here in the future saying, “I don't have anything.” This is a lesson.

Ms. Shirley Pratten: I heard one woman who called—several people do call our group—say that she came in from a remote town in B.C. and that she guessed the donor pool was smaller there. All the doctor really told her was that the donor was male, and she was lucky to know that. That was it.

That is the extent of the information some people have, which is not very much, or we've had to fight, fight, fight. Largely because there's been the publicity there has been, and because of work in trying to bring this issue forward, we know some places across the country are giving more and are showing more awareness about these issues—but as Barry and Olivia were saying, not to the extent we need. We need it gone.

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The Chair: If Madam Picard has another question, she should ask it now.

Do you have another one?

[Translation]

Ms. Pauline Picard: Yes, I have one other quick question.

Mr. Stevens, what are your views on identification? I am referring here to the possibility of a national registry. In terms of identifying donors, collecting data or analyzing their medical information, do you believe an independent national agency should be given this responsibility or should it fall to the federal government? Which would be preferable?

Also, have you thought about how that information should be kept, while at the same time abiding by privacy legislation, which contains certain standards and regulations? How do you see that working?

[English]

Mr. Barry Stevens: I can't comment on whether it should be at arm's length or whether it should be in the ministry or a separate organization. That's for wiser people than me to figure out. I don't know.

But I do believe the government should keep a national registry of all offspring produced by third-party gametes and a registry of the donors. I think their medical information should be solicited and updated regularly when the child is still a child and available to the parents. When the child is mature—and I don't know exactly when that is: in some jurisdictions, it's as young as 14; in Sweden, it's 16; in California, it's 18—the identifying information can be provided upon the request of the offspring. That is how I would like to see it.

Let me just say that the privacy issues are complicated. But to follow on what Olivia said earlier, privacy and anonymity are two different things. I don't think we have a right to have a relationship with a donor. He has every right—as any citizen does—just to say no and close the door. He's not my father. There is no obligation to a relationship. That is what I see as his right to privacy. It protects him in that respect. But I don't think that's the same as anonymity.

There's also, of course, the question of consanguinity. Their offspring need to be assured they're not marrying another of the donor's offspring—because, of course, there will be some families who still will lie to their children, even in a much more open climate.

One other thing is, I would suggest that what all Canadians deserve, as the first contract they have as individuals with the state, is their birth certificate. I believe it should be accurate and not a lie. That goes for adoptees and for us.

The Chair: Thank you.

Ms. Beaumier.

Ms. Colleen Beaumier (Brampton West—Mississauga, Lib.): Wow! I think we've received your message with a great deal of empathy. There are probably thousands of questions I would like to ask, probably in a more private setting to better understand.

However, I have two questions. One is, when you said the right to privacy would protect the donor from having to have a personal relationship with you if you were intent on harassing, I'm not sure.... Don't misunderstand. I believe everyone should be accountable and it should be an open system. But I want to know that.

The other is this. You were saying that a doctor is not in a position to counsel. Do you believe that, before having this procedure done, it should be mandatory to have professional counselling, the same as it would be for a family before being accepted for adoption?

Mr. Barry Stevens: Yes, I do agree with that.

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Ms. Shirley Pratten: Yes, I do too. I think the doctor should be part of a multidisciplinary team. His role around the medical aspects of the infertility problem are one piece of it, but there are all these other pieces where other professional people should be in play and haven't been, and it's been strictly in their domain.

Ms. Colleen Beaumier: And I wanted to know what you meant by the right to privacy.

Mr. Barry Stevens: Well, I have actually actively sought the identity of my donor and did in fact find one of the hundred or two hundred half-siblings I have genetically. I found one, and we're actually very close. But if David—his name is David—decided “Yes, okay, so we're genetic half siblings....” That's not the same case, because I don't think there should be a right for siblings.

But if I had found the donor, I don't think he would have any obligation, really, to me to exchange Hanukkah gifts—because it turns out that he was Jewish, I found out—or Christmas gifts, or anything else. I don't think he has any obligation to engage with me in any kind of relationship. I just want information about who I came from.

So I would distinguish his right to close his door from my right to know who the heck he was, if that's clear.

Ms. Colleen Beaumier: All right.

The Chair: Do you have any more questions?

Ms. Colleen Beaumier: Hundreds, but not....

The Chair: Mrs. Sgro.

Ms. Judy Sgro (York West, Lib.): This did it to me for the day.

The Chair: We have to go home to nap now.

Ms. Judy Sgro: I have to tell you—and I echo my colleague on the other side—we've been hearing from all the medical practitioners all the reasons why there should be as little control as possible, why we should open up the doors and just let science do whatever it does best, and so on. I thank you so much for coming and sharing with us today, because you really did put a face on this issue for us and made us fully aware just how important it is that we make the right decisions.

I wonder about whether science is going too fast and too far on some of these issues, as well as about these donors—what do we know about the donors? In the global sense, they talk about.... Are they getting paid to do this? Are they making these donations because they believe in sharing? What's behind the donors? I know there's not one answer for all of that, but....

Ms. Rona Achilles: The research is conflicting to some extent, actually. There are somewhat mixed motives. There are some donors who claim to donate for altruistic reasons. Most of them aren't willing to give up the fee, though, so that calls into question those statements.

Mr. Barry Stevens: In my day, when I was conceived, they weren't paid—

Ms. Rona Achilles: Oh, they weren't paid?

Mr. Barry Stevens: —so it was generally altruistic.

Ms. Rona Achilles: Yes, I think it is possible to recruit donors who are donating altruistically. Right now the donor pool in Toronto—it changes all the time—tends to be young students. There's no counselling.

In my doctoral research, I found the younger the donor was when he donated, the more likely he was to question what he had done later in life. I mean, you're asking an 18-year-old to understand what it means to have a child. How many of us could have understood until we actually had a child what the consequences were? You can't expect that. So we really do need counselling around long-term implications of this decision. This is not like an allergy shot. It's about bringing a child into the world.

Mr. Barry Stevens: There are also, if I can add, distinct issues regarding egg donation and embryo donation. For a man to masturbate is a fairly straightforward thing, but for a woman to produce an egg which is harvestable is a massive physical change, and there are issues around money and all that with respect to egg donors that are quite distinct.

Ms. Rona Achilles: Yes, and they get paid between $40 and $75, I think, per sample.

Mr. Barry Stevens: Sperm donors?

Ms. Rona Achilles: Sperm donors.

Mr. Barry Stevens: Egg donors get paid—

Ms. Rona Achilles: —lots more.

Mr. Barry Stevens: —thousands.

Ms. Judy Sgro: But should we be allowing that, period?

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Ms. Rona Achilles: Well, that's up for grabs in this legislation. Should we be allowing anything that could resemble payment or reimbursement—anything that would provide incentive is the best way of putting it—or should we just be reimbursing for expenses. Parking in Toronto can really add up.

Ms. Shirley Pratten: The donor who was on the tape, Wayne, the one who was open, he's in our group and he got into donating because he was living with some musicians who were donating. He quite openly said they were doing quite well, thank you. It was like a second job—the donating—and it helped them go on holidays and things like that.

Mr. Barry Stevens: And they wouldn't lie about medical—

Ms. Shirley Pratten: If they're poor students....

I personally don't have a problem with expenses being covered. But in my opinion, it doesn't cost $50 to park your car, even in Toronto. I don`t think people should be making money on it.

Mr. Barry Stevens: In the United States where there's more of an open market, the highest price I've ever seen asked for sperm is $15,000. The highest price I've seen asked for an egg is about $150,000, I think, but there are $50,000 contracts that have been signed.

Ms. Rona Achilles: Actually, one interesting point that I didn't mention was that in the open systems that have been established around the world, we find the donors who come forward are older, more reflective, and understand more fully this decision. Now the physicians will say the problem is that they're older and their sperm isn't as motile, but—

Ms. Catherine Clute: But we expect people to give blood and we only give them Oreo cookies and a cup of coffee. There's no expectation to have their expenses paid or anything else.

The Chair: I think one of the most profound things that has been said here today was said by Ms. Achilles. She points out that fertility specialists, while they're good at infertility, don't know much about creating healthy families. I'm wondering if this whole legislation is framed so it reflects the people who have been driving the agenda, mainly the scientists, the doctors, and the infertile couples.

Mr. Barry Stevens: Right. Absolutely.

Ms. Rona Achilles: You've got it.

The Chair: So every time we say anything critical to a doctor or a scientist, they say, “Oh, but the poor people who are so desperate to have these children by whatever means”. We're dealing mainly with in vitro.

Now I'm beginning to think that, as the government, our interest is in the building of healthy families. In order to keep this out of the contract law—which always comes into play once you start having money change hands for particular services rendered—and to keep it within the family law, I'm wondering if we shouldn't go back to the family law and talk about or think about what happens around adoption.

For example, never until today has the thought crossed my mind that a home visit should happen or a psychological assessment of those they're calling “the requisitioning parents”. In other words, we don't let people adopt babies unless they are deemed to be able to form a suitable home for them, yet we let people have in vitro fertilization when no one has ever seen inside their homes—not for how much furniture it has but for the atmosphere and for the psychological preparedness, etc.

As the expert in child welfare, don't we do that? Don't we do home visits for—

Mr. Reg Alcock: Absolutely. What is going through my mind, though, is that you control the things that are controllable. We used to try to control sexual activity in young girls by not giving them contraceptives until we realized that if you don't control the body, then you've got to try to manage the environment. This is an issue. It's not like an adoptive child where you have the child to give to them. It's people deciding to get pregnant in other ways.

The Chair: Yes, but that's the whole point. If we keep focusing on the pre-conception, which is what this bill focuses on, we keep forgetting that at the other end there's a baby.

Mr. Reg Alcock: I think your point is.... This legislation should almost be severed into two different parts: one around scientific research, on stem cells and those kinds of things, which has to deal with unused genetic material or whatever and a whole bunch of issues itself; and the other one around a consequential act that has an effect on the lives of a lot of people.

The Chair: Exactly.

Mr. Reg Alcock: Whether they can be encompassed in the same legislation, they both should be addressed. If this is the only vehicle that we have to do it federally, then I'm really—

The Chair: We have to think about both.

Mr. Reg Alcock: I think we may have an opportunity to do it. Could I—

The Chair: He asked for one little question quite a while ago.

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Mr. Reg Alcock: I just want to pony in one little thing. I was interested, Barry, in your comment about a private life and I wanted to make a point. We've been thinking a lot about this issue of privacy. I think the way we conceptualize and administer privacy in the government—particularly now since we've got a new commissioner—is shameful. I just think it's a stupid, foolish notion of what it is.

The concept of having a private life...I have the right to have a life separate from other things. I can practice my own religion; I can practice my own form of sexuality—I could be a homosexual. These are things that I couldn't do before. And the concept of privacy got confused with the concept of secrecy. Because I was at risk as a homosexual, then I didn't tell anybody about that, right? In a sense what you're saying is the same thing.

The one area where I think there is a substantive concern—it has little to do with altruism and has to do with the body of law in other areas—is whether I am taking on a legal obligation if I donate sperm. And there are certainly ways to deal with that in law to re-establish the right to have a private life.

Mr. Barry Stevens: Yes.

Mr. Reg Alcock: But that doesn't give me the right to hold secret information that may be beneficial to other people.

Mr. Barry Stevens: No, exactly. I mean, when you drive a car, you're entering into a contract or there are rules according to the state that you have to able to produce identification as a driver. It doesn't mean when you go home on the street you have to produce identification, but you do as a driver. And as a sperm donor, I feel you should have to produce identification.

Mr. Reg Alcock: Good. Interesting stuff.

The Chair: May I thank you profoundly, because we have been bombarded by people who want to talk about Petri dishes and all the wonderful things that can happen if they have totally open access to these Petri dishes and how they're going to help everybody who's sick and all this sort of thing.

It's all possible, but you have made us face what is real, what is really happening. At the other end of all this discussion there are children born and families formed. I think this has come at a very opportune moment for us because we have to continually strike a balance and keep our focus on the fact that this is about children and families. The other parts of this are accessories.

So thank you very much. You've been very, very clear in your presentation.

This meeting is now adjourned.