HEAL Committee Meeting

37th PARLIAMENT, 2nd SESSION

Standing Committee on Health

EVIDENCE

CONTENTS

Monday, December 2, 2002

¹

1535

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

Mr. Rob Merrifield (Yellowhead, Canadian Alliance)

The Chair

Mr. Rob Merrifield

The Chair

Mr. Rob Merrifield

The Chair

¹

1540

Ms. Olivia Pratten (Individual Presentation)

The Chair

Ms. Olivia Pratten

¹

1545

The Chair

Mr. Barry Stevens (Individual Presentation)

The Chair

Mr. Barry Stevens

The Chair

Mr. Rob Merrifield

The Chair

The Chair

Mr. Barry Stevens

¹

1550

¹

1555

The Chair

Ms. Catherine Clute (Spokesperson, Coalition for an Open Model in Assisted Reproduction)

º

1600

º

1605

The Chair

Ms. Irene Ryll ( Spokesperson, The Infertility Connection (Edmonton, Alberta))

º

1610

The Chair

Mr. Rob Merrifield

º

1615

Ms. Catherine Clute

Mr. Rob Merrifield

Ms. Olivia Pratten

Mr. Barry Stevens

º

1620

Ms. Catherine Clute

Mr. Rob Merrifield

Ms. Catherine Clute

Mr. Rob Merrifield

Ms. Catherine Clute

Mr. Rob Merrifield

Ms. Catherine Clute

Mr. Rob Merrifield

Ms. Catherine Clute

Mr. Barry Stevens

Ms. Catherine Clute

Mr. Barry Stevens

Ms. Olivia Pratten

Mr. Rob Merrifield

The Chair

Mr. Paul Szabo (Mississauga South, Lib.)

Ms. Irene Ryll

º

1625

The Chair

Ms. Catherine Clute

Mr. Paul Szabo

Ms. Catherine Clute

Mr. Paul Szabo

Ms. Catherine Clute

Mr. Paul Szabo

º

1630

Ms. Catherine Clute

Mr. Paul Szabo

Ms. Catherine Clute

Ms. Irene Ryll

Ms. Olivia Pratten

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

Ms. Irene Ryll

Mr. Paul Szabo

Ms. Catherine Clute

Mr. Paul Szabo

Ms. Catherine Clute

Mr. Paul Szabo

Ms. Catherine Clute

The Chair

Mrs. Carol Skelton (Saskatoon—Rosetown—Biggar, Canadian Alliance)

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1635

Ms. Olivia Pratten

Mrs. Carol Skelton

Mr. Barry Stevens

Mrs. Carol Skelton

Mr. Barry Stevens

Mrs. Carol Skelton

The Chair

Ms. Catherine Clute

Mr. Barry Stevens

The Chair

Mr. Stan Dromisky (Thunder Bay—Atikokan, Lib.)

º

1640

Ms. Irene Ryll

Mr. Stan Dromisky

Ms. Irene Ryll

Mr. Stan Dromisky

Ms. Irene Ryll

Mr. Stan Dromisky

Ms. Irene Ryll

Mr. Stan Dromisky

Ms. Irene Ryll

The Chair

Ms. Irene Ryll

Mr. Stan Dromisky

Ms. Irene Ryll

Mr. Stan Dromisky

The Chair

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

º

1645

Ms. Olivia Pratten

Mr. Barry Stevens

Ms. Irene Ryll

Mr. Barry Stevens

Ms. Irene Ryll

Mr. Barry Stevens

The Chair

Mr. Barry Stevens

The Chair

Ms. Irene Ryll

Mr. James Lunney

º

1650

Ms. Catherine Clute

Mr. James Lunney

Ms. Catherine Clute

The Chair

Ms. Judy Sgro (York West, Lib.)

Mr. Barry Stevens

Ms. Judy Sgro

Mr. Barry Stevens

Ms. Judy Sgro

º

1655

Mr. Barry Stevens

Ms. Irene Ryll

Mr. Barry Stevens

Ms. Judy Sgro

The Chair

»

1700

Mr. Barry Stevens

Ms. Irene Ryll

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

The Chair

Mr. Barry Stevens

»

1705

The Chair

Mr. Barry Stevens

The Chair

Ms. Irene Ryll

The Chair

Mr. Barry Stevens

Ms. Irene Ryll

Mr. Barry Stevens

Ms. Irene Ryll

The Chair

Mr. Barry Stevens

Ms. Irene Ryll

The Chair

Mr. Barry Stevens

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

Mr. Barry Stevens

The Chair

Mr. Barry Stevens

The Chair

Mr. Barry Stevens

The Chair

Mr. Barry Stevens

The Chair

Mr. Barry Stevens

The Chair

Mr. Barry Stevens

Ms. Catherine Clute

Mr. Barry Stevens

The Chair

Ms. Catherine Clute

»

1710

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

The Chair

Ms. Irene Ryll

The Chair

Ms. Catherine Clute

The Chair

Mr. James Lunney

»

1715

Ms. Catherine Clute

The Chair

Mr. James Lunney

Ms. Catherine Clute

Mr. James Lunney

Ms. Olivia Pratten

Mr. Barry Stevens

The Chair

Mr. James Lunney

Mr. Barry Stevens

Mr. James Lunney

Ms. Irene Ryll

Ms. Olivia Pratten

Mr. James Lunney

Mr. Barry Stevens

Ms. Olivia Pratten

Mr. Barry Stevens

Mr. James Lunney

»

1720

Mr. Barry Stevens

Mr. James Lunney

Ms. Olivia Pratten

Mr. James Lunney

Mr. Barry Stevens

Ms. Catherine Clute

Mr. Barry Stevens

Ms. Irene Ryll

Ms. Catherine Clute

Mr. Barry Stevens

Ms. Catherine Clute

Mr. James Lunney

The Chair

Ms. Irene Ryll

Ms. Catherine Clute

The Chair

Ms. Catherine Clute

Ms. Olivia Pratten

Ms. Catherine Clute

The Chair

---

CANADA

Standing Committee on Health

---

NUMBER 009

l

2nd SESSION

l

37th PARLIAMENT

---

EVIDENCE

Monday, December 2, 2002

[Recorded by Electronic Apparatus]

¹  (1535)  

[English]

    The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good afternoon, ladies and gentlemen. It's my pleasure to call this meeting of the Standing Committee on Health to order and to welcome our witnesses.

    This is our last hearing of witnesses before we begin the clause-by-clause tomorrow, but the clerk informs me that the legislative clerks have only received 28 amendments.

    Mr. Rob Merrifield (Yellowhead, Canadian Alliance): We can't start the clause-by-clause if we don't have the amendments.

    The Chair: Well, we're starting with whatever is done, and there are 28 ready to go.

    I want you to check in your offices, because the implication from the clerk is that the legislative counsels have written them and they just require your approval.

    What happens is, you send in instructions, maybe some wording. They may reword it slightly or try to make it blend with the bill better without changing the intent. Then they send them back to you and you have to approve them. You went through this with pesticides, I'm sure. Then after you approve them, you send them to our clerk.

    Mr. Rob Merrifield: Nothing has been received in my office yet.

    The Chair: Anybody who sent in amendments, please check with your staff last thing before they go home to see whether those things have come back from the legislative counsel. All you have to do is initial them and fax them through to José, and he will get them into the package for tomorrow.

    Apparently they worked all weekend, but did they work on our bill or somebody else's? So phone them and tell them hurry up.

    Mr. Rob Merrifield: But won't it be ridiculous for us to go ahead without all the amendments?

    The Chair: No. We'll try, because there will be certain items of substantive debate, I'm sure. If we can resolve even one and have a vote on it, then that will cast the pattern for the rest.

    I'm sorry, witnesses. I want to thank you very much for coming, and we look forward to your presentations.

    The first name on our list is Olivia Pratten. Olivia, you have the floor.

¹  (1540)  

    Ms. Olivia Pratten (Individual Presentation): I just want to start off by thanking the committee for inviting me back and for their continuing work.

    For those of you who don't know me, my name is Olivia Pratten, and I'm a university student who was conceived with anonymous donor sperm.

    Despite the fact that there is a growing movement worldwide to follow countries such as Australia, New Zealand, and Austria, which already have successful open donor systems, it is extremely disappointing and frustrating that as it stands, Bill C-13 is moving towards legalizing anonymity.

    Because there are several new committee members this time around, I want to explain why I, like every other person I've ever met who was conceived with donated gametes, strongly oppose anonymity.

    First and foremost, anonymity denies us the dignity of choice to decide for ourselves if we wish to meet the person who helped create us. As Bill C-13 currently stands, that choice is placed in the hands of the donor, who becomes a donor as a fully consenting adult. Decisions that will affect our lives forever have been made before we were even born. If a donor cannot put the potential needs of the child he is helping to create before his own, then he absolutely should not be accepted as a suitable donor in the first place.

    To me personally, the donor is not my dad, but he is biologically related to me. Therefore, how I experience the importance of him is extremely personal. Nobody else has the right to decide or judge how I should or should not feel about him. I remember that since I was a child, I've always had the desire to know who he was. I used to think of it as a puzzle. I knew who I was at the centre, but I needed the extra pieces that would help me see the whole picture clearly.

    To say that having a desire to know where you come from is abnormal, as had been said before, or that some of us who are speaking out for change are in the minority defies reason. If knowing where you come from didn't matter, then genealogy wouldn't exist and changes in adoption practices would never have happened. Historians are well known for saying that we don't know where we're going unless we know where we have come from.

    We must ask ourselves what message is being sent to those conceived through gamete donation when the donors who helped create them are allowed to walk away without a second look back. Will they think that their biological father or mother is ashamed of their donation and what it helped create? I've wondered whether my biological father was a good man who wasn't fully informed about what he did or an irresponsible person who has never given it another thought. Treating gamete donations as an anonymous monetary gift that is given to charities at Christmastime is not acceptable.

    The Chair: Please, Ms. Pratten, could you slow down? The interpreters could be having trouble.

    Ms. Olivia Pratten: Okay. I'll slow down.

    Sperm doesn't save sperm. Sperm helps create life. Although my biological father does not have a financial or legal responsibility towards me in the same way a parent does, he does have a moral and ethical responsibility to answer any questions I might have. Only donors who are willing to be identifiable to the child upon reaching their age of majority should be accepted as donors. Responsible, accountable, and fully consenting donors are the standard that needs to be set by the medical establishment and the government, which should be regulating them.

    I find it offensive that some people think that because a number of children are conceived as a result of affairs, adulterous behaviour is an acceptable framework to justify the continuation of an anonymous gamete system. What other depths will we grovel to in order to excuse irresponsible behaviour?

    I have been speaking out at donor conferences since I was 15, and I can tell you that the number of people coming out of the woodwork, not only in this country but globally, is growing. I am part of an international offspring organization that feels a responsibility to speak out on behalf of the next generation, who otherwise will continue to be in the same position that we are in now--without information and without a voice in this process.

    Like many adoptees, many of us have been told that we should just be grateful that we have been born. If that is the case, then why deny me the chance to acknowledge the donor the gift of my life? My biological father could be approximately any of the 30 million Caucasian men with A-positive blood who walk the planet. I love the father who raised me, but that doesn't erase the fact that sometimes I feel like nobody's child. Simply put, the loss of never being able to see or know who this nameless, faceless person was, in my future children and in myself, is something that lasts a lifetime.

    I think when examining the issue of openness in gamete donation it is easy to draw the conclusion that this is an offspring-versus-infertile argument, which is definitely not the case. I am fully aware of the pain and the heartache my parents went through with their infertility. The decision to build a family through donor insemination, also known as DI, as an alternative solution brought them great joy--which I guess was me--and also many complexities that were compounded by isolation and lack of any counselling for the things they might face.

    An open system not only gives the child acknowledgment and respect; it also has a positive effect for all parties involved, as well as the overall societal impression of donor insemination. Maintaining an anonymous system implies that there is something shameful about this practice. How can we believe that emotionally healthy families can be created in such an environment?

    Secondly, I would like to address the fact that Bill C-13, as it currently stands, does not address the protection of past and present records that are sitting in donors' offices and sperm banks.

    I recently found out that the doctor who engineered my conception will be retiring in the next few months. I went to see him to try to obtain my health history and any other information on my donor. I have photocopied for the committee what he scribbled out for me on a piece of paper, which I have here. This is not detailed health information. There was minimal information, such as hair and eye colour and blood type, and there was absolutely no health information. When I asked him where my health history was, he said--and I quote--“Don't worry, dear, I did a verbal check of that, and the donor was healthy”. I don't know what that is supposed to mean. I felt like it was 1882 instead of 2002 and wondered at the irony of his colleagues studying advanced genetics while I got questionable information scrawled out on a grubby piece of paper. Despite this, I know the physician is a good man with very misplaced intentions.

    When I inquired what would be happening to my records and any other pertinent information, he told me that they would be kept at the College of Physicians and Surgeons for two years and then destroyed, as would any other inactive files. As you can see, I'm not inactive but very much alive.

    Contrary to what you might have been told about people currently presenting--they might say there's more information on the donors--there's representation here today of three generations of DI offspring. Nothing has changed. There is a very urgent need for Bill C-13 to rectify this.

    And finally, the health minister is on record as saying:

    “The proposed bill seeks to safeguard Canadians by giving children born through donated reproductive material access to medical information about the donors. The identification of a donor would be treated in a similar fashion to the manner in which provinces deal with adoption, i.e., the release of donor identification is an option with donor consent.”

    Firstly, comparing gamete donation with adoption from a legal point of view is debatable, as anonymous gamete donation is a deliberate creation of someone who will never be able to know their biological heritage, while adoption is an alternative to an unplanned, unintentional situation.

    The minister and the government are wrong when they say Bill C-13 will not treat donor offspring the same as adoptees. In B.C., where I live, adoptees have open access to their records. They can find out who their birth parents are. Therefore Bill C-13, as it stands, will discriminate against those conceived via donated gametes by depriving them of their fundamental rights to be treated equally before the law as guaranteed by the Canadian Charter of Human Rights and Freedoms.

¹  (1545)  

    If this is passed as it stands right now, it is possible that several of us in B.C., along with a lawyer, are prepared to make a legal challenge.

    I'd like to say thank you again for recognizing that offspring voices need to be heard.

    The Chair: Thank you, Ms. Pratten.

    We'll now go to Mr. Barry Stevens. Mr. Stevens, you have the floor.

    Mr. Barry Stevens (Individual Presentation): Thank you.

    Is there a time limit of five minutes, Ms Brown?

    The Chair: Yes.

    Mr. Barry Stevens: Okay.

    The Chair: We're not too rigid. In fact, we're not rigid at all.

    Mr. Rob Merrifield: Yes, we are. It depends on the day.

    The Chair: It depends on the mood.

    A voice: It depends on the hormones.

    The Chair: Oh, there's a little male chauvinist comment.

    Some hon. members: Oh, oh!

    Mr. Barry Stevens: Well, I have plenty of hormones, and I'll get going.

    I'm a filmmaker and a writer. I also was conceived, like Olivia, by anonymous donor insemination. I'm one of the earlier ones. I made a film called Offspring about my search for my donor's identity, which has been seen here and around the world. It has won some awards. I believe Monsieur Cadorette has some copies available, if you would like to see it.

    You've heard from Olivia the reasons we want to know the identity of our donors. Knowledge of one's genetic origin is an important part of human identity, and not knowing who we come from can seriously compromise our health. In addition, the secrecy and deception associated with an anonymous system are damaging to families. Therefore, I want to ask the committee to alter subclause 18(3) so that the words “but the identity of the donor...shall not be disclosed without the donor's written consent” are struck out. The wording in this clause should also be changed so that identifying information cannot be disclosed until the child is 18. What it comes down to for us is simply telling the truth.

    A number of false arguments have been made against openness. These arguments are rarely supported by scientific evidence. They've been made increasingly in the last year, since the last committee's unanimous recommendation to open up the system, which we found to be a very gratifying decision.

    I'd like to present some of the reasons the opponents of truth and openness in AHR are wrong. I list some references at the end of my paper. You can look at the relevant journal articles, if you wish.

    It's claimed that offspring who object to donor anonymity are a small minority and that the vast majority are happy with their lot. This is not so. The majority of DI offspring are not yet adults. They are therefore unlikely to speak out. A lot of them, of course, don't even know. In the last few years, however, the attitudes of offspring have been properly researched for the first time. There are four studies listed here. It's clear that the great majority of the offspring, between 79% and 83%, thought that they should be able to know the identity of their donors and wished to very much. The major concerns cited by Amanda Turner of the University of Surrey in the U.K. were “lack of genetic continuity, frustration in being thwarted in the search for their biological fathers”. It's a feeling I share.

    It's claimed that donors will disappear if they are identifiable and that when Sweden changed its system in 1985 the number of donors plummeted. This is a common thing that's repeated a great deal. This is simply not true, if you look at the research. Researchers who examined the Swedish experience found an initial drop in DI births, partly due to factors such as the closure of private clinics under the law and doctor opposition to the new law. But the number of donors pre- and immediately post-legislation remained static. From 1992 there has been a considerable increase in the number of available donors, coinciding with recruitment programs. The number of donors climbed eventually to 65% higher than they were before the law.

    The Sperm Bank of California, another example, pioneered something called identity release. It's self-evident what that means. When they started, about half their donors chose to be identifiable. I communicated yesterday with the chief researcher attached to the clinic, and she told me that ID release donors outnumber anonymous donors. Now 81.4% of donors choose to be identifiable to their offspring.

    The State of Victoria in Australia switched to an open system. In the most recent year examined in their study, the number of donors had begun to rise.

    New Zealand, where every donor is identifiable, has an adequate number of donors and healthy DI programs. I don't have figures on that, but I do know that to be true. Donors tend to be older and differently motivated under an open system. They don't tend to be college kids.

    Incidentally, it's a false assumption that even anonymous donors want to preserve perpetual anonymity. In one study 97% of donors who donated under the old system were willing to be identifiable and a certain number would have contact.

    Considering how central the issue of donor drop-off is to this debate, I personally find it amazing how little the actual research has been examined or seems to be quoted by our opponents. Half-truths and falsehoods are repeated and by repetition seem to have become accepted. I find this regrettable.

    It's claimed that there is no legal framework in most provinces to establish recipient parents as parents in law and to sever the familial and financial responsibilities of the donors toward their offspring. Until there is, the status quo must remain. In other words, the provinces haven't done anything about family law, so you can't do anything. This is a typical Canadian catch-22, from the point of view of an offspring. I don't want to be a victim of that. I don't know enough about federal-provincial relations, but I do think that if the federal government is hampered by what the provinces haven't done, it is a very regrettable situation.

¹  (1550)  

    Even in the absence of a law, in my province of Ontario the sperm bank Xytex has received legal advice that there is no real danger to donors, who are identifiable in Ontario, of being sued for child support or anything.

    But the main point is that such laws have to be passed anyway, because anonymity is going to be harder and harder to maintain. This is very often overlooked. Anonymity is a very weak protection. You can't rely on that to prevent this fiction of them being sued for child support.

    DNA tests are very sophisticated, and they're getting better. Information on donors that is now routinely provided will make it quite possible to identify them retrospectively. If I'd had the information families now get routinely, I am quite sure I would know my donor's identity by now. There's much greater security and safety in being open from the start, in my view.

    It is claimed--it's a silly thing, but it keeps coming up--that a huge number of people are mistaken as to the identity of their biological fathers anyway, maybe 30%, so it doesn't matter if DI kids are misled about theirs. This is another falsehood. The Lancet, the British medical journal, examined the slim literature on this question and noted:

    “High rates of non-paternity have been quoted, but are often unsupported by any published evidence.... Rates of non-paternity have taken on the character of urban folk tales--pieces of conventional wisdom which are widely believed but have little basis in fact.”

    They found that the 30% figure was fiction, and in many populations figures as low as 1% to 3% of non-paternity were common. It's not that it matters, as Olivia pointed out. Even if it were 30%, so what? The argument is tantamount to saying that adultery should be the standard of medical care. It's analogous to arguing that because some babies are tragically born blind, it's okay to deliberately blind babies at birth. It's a foolish argument, but it keeps coming up.

    It's claimed that while there is a legitimate need for us to know our inherited medical background, giving us access to a medical history taken from the donor takes care of that problem. Most of them, as you know, are young and healthy. You know the extent to which genetic disease is emerging in every area of our health care, and how often these things emerge late in life. Anonymous donors can more easily lie about their medical records than identifiable ones, by the way. I think that point is fairly clear and has been made.

    It is claimed that even if it is better to tell children, for medical reasons, we can't force parents to do so. Most of them refuse to disclose the truth, so we may as well leave it anonymous. It's true many parents do not disclose. In one well-publicized study, 90% of parents had not disclosed, although if you actually read the study, 60% were intending to, but their kids were very young.

    Other studies have also suggested half or more of parents have told or will tell, and it appears to be growing. That's a little bit colloquial; I don't have evidence on that. If it is the minority, however, it is not true there's nothing the licensees and the agency can do to encourage disclosure. Adoption has moved from a state of secrecy and shame to openness. Most parents now tell their children. I'll leave the details of that to Catherine, who I think is going to talk on that matter.

    Many parents, by the way, have told me they do not want to tell their children because the donors will be forever anonymous. In an identifiable system, I don't think that would be the case.

    Consanguinity is a much greater problem than I think the medical profession and the fertility industry lead one to believe. Half-siblings becoming involved sexually with one another is far from impossible--or even a donor becoming involved sexually with his or her offspring. Many of us in the field know of cases where it's happened, anecdotally. Anonymity makes this probable; openness makes it more or less impossible.

    A touchy point is that some of the passion and heavy feelings on this issue are due to the fact that some physicians--some people in the medical profession--who argue against identifiability may themselves have been donors. This is kind of the elephant in the room that we don't talk about, but in the very early days, often in their own practices, more recently when doctors were studying reproductive medicine, they may have donated sperm for a senior physician's practice. They may also have solicited sperm from friends, colleagues, or their own students. They're naturally nervous about this past. I believe--I have no proof--that many doctors who oppose identifiability do so based on this fear. It is irrational, because we do not support retrospective identification against anyone's will.

    On a final point, as you know, a recent case was successfully won in the U.K.'s high court for disclosure of a donor's identity. This case was argued on the basis of the European human rights code. The HFEA, the British agency that is in many ways a model for the proposed Canadian agency, has now advised moving toward an end to anonymity.

¹  (1555)  

    I don't know if you spoke to Suzi Leather about this, but if the U.K. is a guide, it appears that's the direction. So there's an irony, I find, in this legislation, Bill C-13, in codifying anonymity when the British agency, which is the model, has moved in the opposite direction, as so many jurisdictions are doing. I ask that the committee recommend that Canada follow this progressive trend and not codify and forever preserve anonymity.

    Thanks a lot.

    The Chair: Thank you, Mr. Stevens.

    From the Coalition for an Open Model in Assisted Reproduction, we have Catherine Clute.

    Ms. Clute, you have the floor.

    Ms. Catherine Clute (Spokesperson, Coalition for an Open Model in Assisted Reproduction): Thank you.

    COMAR--who is COMAR? We are parents by assisted reproduction, by adoption, and by birth. We are offspring of donor conception. We are adopted persons, researchers, and ethicists. We have an academic and a direct-lived experience.

[Translation]

    I am a mother thanks to adoption.

[English]

This is a picture of my son. This is my son with his birth sister. His birth sister does not live with us. We have a very open adoption. He knows that this is his birth sister. He loves her very much, but they live in separate families.

When I was first considering building a family, I would have chopped off my right arm and learned how to write with my left if someone had said this will get you pregnant, allow you to sustain a pregnancy, and allow you to give birth.

    When we formed our family by adoption, and when our son arrived in our life, our focus changed. Now, I would gladly give up both my arms for the welfare of my son. That is why I'm here today, and I thank you very much for the opportunity to be here.

    We feel in the adoption community that we have a lot to offer with respect to this legislation. We urge the committee not to allow the mistakes of adoption to be repeated using donor sperm, donor eggs, donor gametes. There are books and books that have been written about the damage done in adoption by secrecy, sealed records, market-driven practices, the shame, the loss of contact with birth families, the lack of access to pertinent medical records, and an incomplete sense of identity for adopted persons.

    These mistakes were horribly painful. There's a monument less than five kilometres from my home that is dedicated to the memory of the “butterbox babies”. These were babies from the Ideal Maternity Home in Chester, Nova Scotia, who died because they were not able to be sold. We owe it to them and to the adoption professionals and parents of the past not to get into a market-driven method of dealing with donor-embryo, vendor-embryo, vendor-sperm, or vendor-eggs. The current treatment of donor information in the legislation suggests that these mistakes are going to happen again.

    In adoption, openness and honesty are now the norm. They need to be in donor conception as well. In adoption, the mandate of all professionals is the welfare of the child. The wishes of the doctors, the birth parents, the parents never outweigh the needs of the children.

    My son needs to be in contact with his family. We will facilitate that. We will do that. It only makes sense. The child can never have too many people to love. In donor conception, whatever the offspring feel that they need or do need, that's what we should be honouring.

    It seems that in writing the legislation, somewhere, somehow we bought into the myth that the supply of donors would dry up if we didn't pay them or identification wasn't required. In adoption, I'm sure you could increase the number of babies available if we paid birth parents or if we allowed them to do it in various ways. But we don't do that. That's a disgusting process. We wouldn't even conceive that.

    Societal changes have decreased the number of children that are available for adoption, as has the way that adoption is now practised. Yet there are currently thousands of children waiting for permanent families in Canada. In my little small part of Nova Scotia, there are 65 children in permanent care who are waiting for forever families.

    In donor conception, other countries have already shown that identification of donors doesn't lead to a decrease, and Barry talked about that quite eloquently and quite completely earlier. Canada needs to establish a committed recruitment and educational program based on altruistic donors who agree to have their identity known, and then we get around the supply problem.

    Bill C-13 offers only a snapshot of the donor's medical history taken at the time of donation. That's not enough. It's not enough in adoption. We have contact with our son's birth mother. When he developed eczema, when he developed asthma, I was able to phone her and ask if Bronwyn, his older sister, had problems when she started school. And I get an immediate answer.

    Now, I'm not suggesting that should be how donor conception happens, but on the forms she filled out, she didn't write out that Bronwyn had asthma because Bronwyn was five. Her asthma only developed when she was nine. Information changes, and I think Irene's going to talk about the need for updated medical information. There are 3,000 medical conditions and diseases that are inheritable. The donor's medical information needs to be updated. I've said that.

    The minister also has suggested that identification of the donor should be treated in a manner similar to how the provinces deal with adoption. Well, she's wrong. This legislation sets up two tracks--donors who choose to be identified and donors who don't. She's also wrong because the provinces are much more progressive than this legislation proposes to be.

º  (1600)  

    In British Columbia, children who are being adopted have a right to their birth certificate--their original real true birth certificate. Similar legislation is in the works in Ontario, Newfoundland, and Labrador, and it's already an established practice in the U.K. and several American states, New Zealand and Australia.

    If the legislation proceeds as it is now, I suspect that you're setting yourself up for challenges under the Charter of Rights and Freedoms where you're discriminating against those conceived through donor conception by not giving them the same rights as adopted persons.

    Adopted persons used to be told not to tell. Today, with DI, doctors have told their patients not to disclose any information about their family creation to anyone, including their child. Parents weren't counselled as to the long-term ramifications of their decisions or given tools or advice on how to talk to their children, and Irene's going to talk about that too.

    In adoption today, if I were to show up at a social worker's house and tell the social worker, we're not going to tell, we're not going to talk about adoption, you'd be thrown out the door and your adoption would not proceed. But this is still the standard for those who access embryos or sperm or eggs, and overtly and tacitly they're being encouraged to base their whole relationship with their child on a lie. How can that be considered sound medical advice or even ethical, and how on earth does the legislation talk about informed consent when it encourages that type of anonymity and secrecy? It doesn't do it directly, but it does it by implying that we're going to have this anonymous stuff.

    Beyond the medical history, there's also a case to be made for cultural identity. Those who have adopted internationally, from other countries, have recognized this already. We just have to look at those who have adopted from China and how well they've embraced the Chinese cultural heritage. They realize it's important not just to their children but to their whole family. You're bringing in other parts. Children have their whole sense of themselves.

    The whole procedure of donor insemination has been wrapped in secrets for too long. The trend of denial has started with egg donation, and it would appear to be entrenched in the proposed legislation.

    Anonymous gamete donation is a throwback and a travesty. And as we've seen in adoption, secrets and lies provide no foundation for a family or a life.

º  (1605)  

[Translation]

    Thank you very much for inviting us to appear before you.

    Yesterday, when I was leaving for the airport, I told my son that I hoped I would not have to come back here again.

[English]

Daniel was very unhappy that I was leaving, because there are lots of things happening at school. I said “Daniel, this is it. This time the legislation is for real. It's going to go through and I don't plan on coming back.”

    Thank you.

    The Chair: Thank you, Ms Clute.

    We'll now move to Ms Ryll, who is representing the Infertility Connection, based in Edmonton, Alberta.

    Ms. Ryll.

    Ms. Irene Ryll ( Spokesperson, The Infertility Connection (Edmonton, Alberta)): Thank you for inviting me back to comment on this bill, particularly in relation to donor issues.

    Our family was built through anonymous sperm donation and we have three young children, eight, seven, and four years of age. We were very pleased with the committee's report tabled last year calling for an open donor system, and the recommendations that were provided. It was wonderful to have our concerns with the present system acknowledged and acted upon by this committee. So I thank you.

    Our reaction was one of great disappointment, though, when the bill itself did not act on those recommendations, because anonymous gamete donation is clearly not in the best interests of offspring or families produced by reproductive technologies.

    We remember the pain of infertility. And we feel immense gratitude to the donor for helping us build our family. However, after becoming parents, becoming educated as to the issues our children and our family may face, and most importantly, by listening to the voices of the adult offspring, we recognized that someone becoming a donor has a responsibility beyond simply providing the sperm or egg--a moral responsibility to the children.

    If donors are not comfortable with having their identities known, then they should not be accepted as donors. We are also starting to hear our own children's voices. As our seven-year-old recently said to me, “Why are they hiding these people from us? Did they do something bad?” And another comment was if you don't know who your sperm donor is, how can you thank him for making you?

    We ask that subclause 18(3) be amended so that all gamete donors are required to have their identities known to offspring at the age of majority upon request. The argument commonly heard is that by doing so it will discourage donors from coming forward and that donors do not want their identities known. We do not believe that this is the case, and in looking towards other countries--this has already been mentioned by other presenters--that already have an open donor system, they are still able to recruit donors. And they usually have someone who is older and who may already be a parent and know what it means to have a child.

    This would also prevent the formation of a two-track system of donor-conceived offspring, where donors would be identifiable in one track and anonymous in the other. The Human Fertilisation and Embryology Authority in the U.K., which has been the regulatory body since this legislation was enacted over ten years ago, has recently recommended against this system on the basis of ethical grounds.

    After we were interviewed in the Maclean's magazine earlier this year, we were contacted by a former sperm donor from our clinic. He thought he might have been the donor of our children and he was willing to share information with us. He also told us that he was willing to be part of a voluntary registry that we want the federal government to establish so that offspring families and donors from the current anonymous system can make contact if they so choose with each other and update and pass along information.

    We shared this with Minister McLellan when my husband and I met with her this past summer. We have no health medical information in regard to our children's donor. And we are not alone. This has always been a great concern to us as parents, and it's sure to be a concern to our children and their own children in the future.

    We have strongly advocated for changes to the present system of gamete donation to ensure that medical information be given to parents and offspring. And we're pleased to see this included in subclause 18(3) for future families. However, we ask for an amendment to this clause to include that all non-identifying health information be given to families and offspring retrospectively upon request.

    Our oldest child has recently--and this is within the last two weeks--been diagnosed with a genetic disorder not carried on my side of the family. It would be extremely helpful to have the medical history of our donor for our children for this important reason and for the future. There is no place for people in our situation to go.

    We have been told by our physician that any disclosure of medical non-identifying information must come with the donor's consent. There is no process in place to even begin to try to obtain his consent. Our clinic says they cannot locate the donor. All we were given was--and I have another piece of paper--this piece of paper with six physical characteristics on our donor. And then there are some scraps on the other side.

    Anyway, this genetic condition has implications for our children's children, the donor's own children, as well as other families who have children by this donor. And yet we have no way of sharing this information with the donor or these families.

º  (1610)  

    To avoid other families facing this situation in the future, we ask that all records presently in doctors' offices sperm banks be put in a central registry so they cannot be destroyed or lost. Such a registry is invaluable, in our opinion. Our government should be encouraging openness so that parents can feel positive and supported about sharing donor origins with their child.

    As a parent and a health professional, I know that having a complete and accurate health history is essential in making appropriate health and lifestyle decisions. For this one reason alone, one cannot possibly argue that an anonymous gamete donation system is in the child's best interest. By encouraging parents to be truthful about their children's donor conception and medical health history, our government will be showing leadership that is essential in order to help create a change in the societal views and the acceptance of donor conception in Canada.

    Our government has an opportunity to end the current system of anonymous gamete donation and to be true to the stated principle in paragraph 2(b) that the health and well-being of children be given priority in all decisions affecting their use. And this will support and encourage the development of healthy and strong families, as this is what the goal of assisted human reproduction should be.

    I made a scrapbook for the kids on how we became a family and I talked in here about how we used a sperm donor to help us have children. In the very back I have some stories, and I have a little note that my daughter, who is seven, wrote to her sperm donor.

Dear Sperm Donor:

Thank you for giving my mom the sperm so I could have a family. You should be proud of yourself, because you did the right thing. God is happy with you. You're a good man. Keep doing good things. I wish I could see you.

Love,

    and she signed her name.

    Thank you very much.

    The Chair: Thank you, Ms. Ryll.

    We'll move now to the question and answer portion of our meeting, and we'll begin with Mr. Merrifield.

    Mr. Rob Merrifield: Thank you for being here. I can actually remember full well when you were here last time. I think it actually became a pivotal point in our committee's work, where we put some faces behind the work we were doing. I think most people around this table had another sober look at this piece of legislation. In fact, we were so impacted by it that we changed the name of the report. We called it “Building Families”, because that's really what we were all about.

    I don't think there are many arguments around this table as to the right to know where you come from and donor anonymity. There are those voices out there saying that if we disclose this information it will dry up the donors and they won't be coming forward. As I think Mr. Stevens had suggested in his dialogue, that has not been the practice in other countries. I guess if it's not the practice, then it's not the issue. We have had witnesses telling us that would happen, and that it's very important they not be inhibited in having gamete donations so that they could conceive a child.

    I guess the battle comes down to this. Would it be better to allow anonymity and not have the donation to allow the children, or to allow it and have the donors protected? Is it better to have the child in that form, or is it better not to, if they don't have the donations?

º  (1615)  

    Ms. Catherine Clute: Under the Universal Declaration of Human Rights, everyone has the right to marry and found a family. It doesn't say to give birth. It's a beautiful privilege to be a parent.

    The people who use, as a red herring, the fact that if you do this the supply will dry up are uninformed. They haven't done the research; they haven't looked at the situation in other countries. The supply does not dry up, first of all. Even if it were to dry up, there would be alternate ways of family building. If their real goal is to found a family, there are children available to adopt in Canada. Our son Daniel was adopted in Nova Scotia. He came home with me at 17 days old.

    Some of the other hats I wear.... I'm the president of the Adoptive Parents Association of Nova Scotia. There are people in our organization who adopt full siblings through social services. One parent adopted a child at a month old, another one 17 days after she was born. Her eldest is three. Adoptions happen. That is one venue available for people who wish to build a family. For those who are very concerned about the whole experience of pregnancy and whatever, that smaller pool will be able to use the supposedly decreased supply of donors.

    Mr. Rob Merrifield: I have one other question. If we fail to be able to put into this piece of legislation some amendments that will reflect your wishes and donor anonymity, will you collectively be challenging this decision in court?

    Ms. Olivia Pratten: I can answer to that. There are several of us in British Columbia, because B.C. is one of the provinces with open adoptive records, who have spoken to a lawyer, and we are prepared to take some sort of legal recourse if the bill does go through as passed, to make a challenge under section 15.

    Mr. Barry Stevens: May I just respond to your first point again? I directed my remarks around that very issue because I've heard the testimony of Dr. Leader and other people on that point, and what I'm always struck by is that they say this will happen but they don't actually present evidence for it. So I was seeking to present evidence. This is only a small part of it. I'll be glad to furnish the academic work on this, and you can actually see what happened in those countries.

    It's not that there is no issue or there's no problem. It involves a matter of education and recruitment. It also involves some expense. When I asked the Sperm Bank of California why they stick to it so hard and why they really care that much--because the motivation of anonymity seems to come more from the clinics and the doctors than it does from the donors--the director of that clinic said, “Well, it's damned expensive. We run two tracks”--as I was explaining, the identifiable track has grown much larger--“and to track a donor, to keep them in our sights for 18 years and the offspring and take extensive histories, to get counsellors in, to bring to management, all this is adding input costs to a business.”

    So there's no way around it that anonymity is cheaper than identifiability, and that is frankly a motivator for somebody running a private medical business. There's nothing wrong with them having costs and profits. It's just that it has to be considered.

    I was seeking to put it this way because it's often presented as a conflict of our rights versus a donor's rights. I was seeking to present this evidence to say that it needn't be. We can all have what we want.

º  (1620)  

    Ms. Catherine Clute: Do we remember when we all used to smoke and drive drunk in cars without seat belts? We used to do that. People used to go to dinner parties and drink and get in the car. We don't do that any more because---

    Mr. Rob Merrifield: Some still do.

    Ms. Catherine Clute: Some still do, but it's a very small amount. We were able to change a major societal attitude by education.

    Mr. Rob Merrifield: It leads me to the other question. That is the idea of commodification in this whole area. The bill does allow expenses to be picked up, but it doesn't define the expenses very well. Perhaps that's something that will be left to the regulations. But when it comes to that side of it, do you have some opinions as to what would be the appropriate amount of compensation, or should there be any at all? This is besides the idea of anonymity. Now, this goes to--

    Ms. Catherine Clute: I think I said this last time, but I give blood for a cup of coffee and two Oreo cookies. We heard this summer at the donor conception conference in Toronto from a lot of Australians that donors in Australia who've been offered recompense for their parking are offended because they're doing this totally altruistically.

    Mr. Rob Merrifield: Okay, so you'd change both parts of the bill.

    Ms. Catherine Clute: Yes, but we're not here really to talk about that today. I have strongly held--

    Mr. Rob Merrifield: We're here to talk about it. Believe me.

    Ms. Catherine Clute: We don't buy and sell kidneys. We don't buy and sell anything else. Why would we buy sperm? It's a--

    Mr. Barry Stevens: Expenses, though, may be a little... It's a different category, right?

    Ms. Catherine Clute: Yes, but it's when they talk about...$100 is not parking in Toronto.

    Mr. Barry Stevens: Right.

    Ms. Olivia Pratten: I think you also need to look at the larger picture of what that message is sending to the child. I know for myself personally I have wondered, and I think I've said it too, did he donate because he really thought about what he was doing, or was he thinking to himself, oh, great, $50, that will help me with my books this semester.

    I think what it creates for the child is doubt about what their conception was and whether part of what contributed to their conception was a genuinely good act, or was some of it commodified and was some of it not thought through?

    It's not compensation; it's incentive. I oppose any kind of payment whatsoever for this. It's not acceptable.

    Mr. Rob Merrifield: Okay, thank you.

    The Chair: Mr. Szabo.

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

    I caught most of Irene's remarks, and I think I've heard enough from others or sensed from the responses already that the altruistic element must override the rights of a donor to be anonymous. I personally would like to see full disclosure. There are obviously clear examples, in Irene's case for one, where full knowledge is really important to the family.

    Since I agree with you, and since you probably have some first-hand knowledge about the fertility industry and how it operates, could I ask you about what it doesn't do well, rather than what good it does? Could you give us an idea of your first-hand experience with things like the consent issue—prior consent, or consent prior to donation—and the explanation of all the details, and whether you feel what is happening now in the fertility industry would comply with the requirements of this act, which will be buried in the regulations? While we haven't seen the regulations yet, the Canadian Institutes of Health Research laid out very extensively the pre-disclosure requirements, etc.

    So I wonder if you have any input for us, with regard to the fertility industry and your experience, as to how we could make sure that the licensing of fertility clinics would cover the issues or concerns you have today.

    Ms. Irene Ryll: I can speak to you quite clearly about my experience with donor conception. We had no counselling whatsoever in terms of psycho-social needs, or in terms of what this would mean down the road, the kinds of things our family should be prepared for, and what to tell the child. We had no counselling whatsoever. No counsellor was associated with the clinic we went to, and there still isn't.

    So when you talk about fertility clinics, I think it depends on where you access treatment and what kinds of services they provide. From my understanding, there's such a patchwork as to the kinds of support and information you may be given. This is something I feel very strongly about. Any time you deal with donated gametes, there should be mandatory counselling to the recipients—which is in the legislation, I think—and obviously to donors as well, so they know exactly what they are getting into.

    When we went through this, I am glad that my husband and I both knew we were going to be open with our kids, because this is usually a really big issue for people. Do you tell, or do you not tell? They really need to understand all the issues down the road. When you're desperately wanting to have that child, the focus is totally on the child. I can understand this, because I have been there as well. But you have to look beyond this.

    I don't know if I'm answering your question. I'm sorry. But I feel very strongly that this should be available in counselling.

º  (1625)  

    The Chair: Catherine, would you like to comment?

    Ms. Catherine Clute: In Nova Scotia, right now, patients are still being told not to disclose when they use donor insemination or donor eggs.

    I have also provided infertility support in Nova Scotia for the past ten years. I have heard of them still mixing sperm from the donor with the husband's, so that nobody knows whose child this really is. I have heard of a woman treated at an assisted reproductive clinic in Halifax who did not tell her partner they were using donor sperm. There are all kinds of very strange, scary stuff happening in clinics all over this country.

    Mr. Paul Szabo: Could I ask one other question that you might have some knowledge about?

    There has been some testimony from various witnesses with regard to harvesting of eggs, about its invasiveness, about the drugs, and the number of eggs being harvested. Based on your knowledge or experience, I'm wondering if you could advise us whether women's health issues are being disclosed to people who participate in reproductive technology procedures, whether what's happening to their bodies with the drugs and what's going to happen to the embryos is being disclosed.

    Ms. Catherine Clute: No. They get that at our support group meetings. Most of the people who are saying they're getting lots of information and everything say “Gee, I didn't know that study was out there. What does it really mean that they took out 22 eggs, and what's happening to them anyway?” It doesn't register. Maybe they're being told, but it isn't sinking in while they're going through treatment.

    As to what happened to my two other embryos--because I produced seven when I went through my first in vitro cycle--they were used for research purposes, and I was sent a consent form after the fact saying “Oops, we forgot to tell you that this was what was going to happen. You have to sign this; please backdate it by two years.”

    Mr. Paul Szabo: Oh dear.

    Ms. Catherine Clute: It's a zoo.

    Mr. Paul Szabo: Can you give us an idea of... We know the Ottawa fertility clinic is associated with the Ottawa Hospital. You can see this, and they told us that if there are surplus embryos and consent has been received, and so on, they're simply transferred to researchers.

º  (1630)  

    Ms. Catherine Clute: Yes.

    Mr. Paul Szabo: But regarding the other fertility clinics--and I'm not sure, of the 24 that are in Canada, what their corporate linkages are--are you aware of any that are maybe for profit, or not associated with a hospital or something like that, that we might want to inquire about, how they operate? Because this non-commercialization and non-commodification issue continues to come up.

    I don't know why they would possibly participate in producing or having surplus embryos and getting all the consents if there was no possibility for them to be compensated for all their work and getting the consents and the legal stuff, and so on. So it seems to me that if there are structures of fertility clinics that are not directly linked into the health delivery system and research system, there must be some commercialization activity going on.

    Ms. Catherine Clute: Nova Scotia's clinic is affiliated with the hospital, and it's the only place that really does IVF. But Toronto has a whole parcel of independent private clinics.

    I have a girlfriend who lived in Nova Scotia, who had her treatment at IVF Canada, who has 16 frozen embryos they have adopted. They haven't a clue what they are going to do with those 16 frozen embryos, and I don't know that IVF Canada has a research facility.

    Regarding Dr. Virro's clinic in Markham, I don't know that he does a whole lot of research. He does a lot of donor egg. Well, it's easy to do donor egg and donor embryo if you have the embryos already sitting there and you have a market that's available for it. The Toronto area seems to have the greater concentration of private clinics.

    You have one.

    Ms. Irene Ryll: There's one in Calgary; there's one in Alberta. That's an IVF clinic.

    Ms. Olivia Pratten: There's one in Vancouver as well.

    Ms. Catherine Clute: Genesis.

    Ms. Olivia Pratten: Yes.

    The Chair: But in his question Mr. Szabo is posing a suggestion that these clinics that have extra embryos for which permission has been granted for their use in research might be able to have a commercial transaction to a research facility. I think he's saying to you, do you have any proof that this exists? I think I'm hearing that the answer is no.

    Ms. Catherine Clute: No.

    Ms. Irene Ryll: No. The goal of an infertility treatment, when you're going through IVF, is that you're stimulating the woman to produce as many embryos as possible so that there are embryos left to be frozen for subsequent children or tries if that treatment fails. Some women produce twenty or thirty embryos, and some ten; it just depends.

    But I would think some research is being done to decrease the number of embryos or the eggs that they harvest so that there are better chances for those embryos and not so many in storage, because you have couples that are wondering what to do with these embryos.

    Mr. Paul Szabo: Just very quickly, finally, are you opposed to or do you have an opinion on the adoption of embryos by a couple?

    Ms. Catherine Clute: I have lots of opinions on adoption, but I would take up too much time.

    I think if you're going to do any kind of adoption of an embryo, you have to look really closely at the adoption model. You have to make darn sure that everyone is counselled on what the heck is happening.

    Embryos that exist in storage were created because the couple went through infertility treatment, and they really wanted a genetic connection with their child. So this is not quite like a scenario where someone is facing an unwanted pregnancy. This is a scenario where someone has a very wanted baby out there that is surplus to their requirements. You're setting up a really--

    Mr. Paul Szabo: It's no different from an adoption of a born child.

    Ms. Catherine Clute: Yes, it is.

    Mr. Paul Szabo: Adopting an embryo versus adopting a born child?

    Ms. Catherine Clute: It's a lot easier to fake it.

    Mr. Paul Szabo: They're both human beings.

    Ms. Catherine Clute: Oh yes, they both are, but it's a lot different in terms of it being easier for the receiving couple to pretend that nothing strange happened. It's much easier for it to happen in a commercial setting rather than a social framework. You do it in a clinic, and you pay money for it.

    You don't necessarily have to have any kind of home study, any kind of social worker involvement. You cannot disclose. So it's different in that way. But yes, we're still talking about people.

    So I think it could happen, but it needs to be really closely looked at, and I would take too long to....

    The Chair: Ms. Skelton.

    Mrs. Carol Skelton (Saskatoon—Rosetown—Biggar, Canadian Alliance): I would like to talk to Olivia.

    It really concerns me that you have not had counselling. That just makes me cringe. You also mentioned in your presentation that your parents hadn't received counselling.

    Can you tell me, step by step, what kind of process you and your parents went through?

º  (1635)  

    Ms. Olivia Pratten: I'll tell you the story I know. It's the truth.

    My dad couldn't have his own children, so they went to a urologist, and the urologist said to them, “You know, this isn't going to work out here, so why don't you go up to Dr. X's office and use the donor sperm?” It was like there was no difference between donor sperm and my dad's sperm.

    So they went up there and had the inseminations, but they had no counselling. The doctor counselled them not to tell me. My mom asked him what they should tell me, and he told them most people didn't tell their children.

    I know they felt extremely isolated. My mom has spoken to me about this--and my dad, to a lesser extent. They wanted some sort of communication with the community out there, to know they weren't the only ones going through that, because it was such a tremendous process to go through. They asked him if there were any other couples they could speak to, and he told them they couldn't do that, for privacy reasons.

    I know things have changed since then. It's come more out of the closet, so to speak, and my parents did end up forming their own support network. But they were very much alone and isolated.

    I went back and visited his office, and the attitude I received was very much “What are you doing here?” I talked to the secretary, and she said “Do you need treatment?” I said “No, I'm the result of the treatment.” They didn't seem to understand I had a need to visit their office. I disagree strongly with the physician, but he's a very elderly man, very paternal. He's been very kind to me, but he just kind of says “You're a good girl, just go away”, in a really nice way. He doesn't want me there, and it frustrates me, because I was literally conceived in his office. He has information in there about me in my files. It's my health history, whether it's big or whether it's small. I deserve some respect when I go in there, and I don't get it.

    Mrs. Carol Skelton: Barry, I'm sorry to say I haven't seen your movie, but I intend to get it.

    Did your parents have any counselling?

    Mr. Barry Stevens: Oh no. That was a long time ago, in 1947, and then later for me in 1952. It was extremely secret. There was one clinician at that time in England, and the sperm would be left in a secret place behind a flower pot, and be taken by an intermediary to the office. There were all these interesting code names. The doctor would lock them in a safe every night, and when she retired she burned all the records. There was this absolute devotion to secrecy, to an incredible level. We would have been bastards under British law, illegitimate, and that actually meant something in those days.

    So on the question of counselling, there was nothing open. There was no group or anything like that. They were told legally not to tell anybody. So there was an even tighter atmosphere there.

    Mrs. Carol Skelton: It would be a huge thing for your mother--

    Mr. Barry Stevens: It was. I just want to say two things about that. First of all, it's based partly on men's shame about their infertility, and that's worth saying. On this whole business of anonymity and secrecy, it's partly financial, but it's also based on a sense of shame, because men feel that they're somehow less if they're.... Women have this problem less.

    The second thing about the shame and the secrecy is that when you have a secret like that in a family, in the centre of things, it actually kind of constricts communication. I've talked about this with my mother, and it's like any conversation can lead to the forbidden topic. So you have to monitor what the child says and what you tell the child.

    There's this thing in the middle of the room that nobody ever speaks about. It's easy to sort of isolate these problems, but anonymity is connected to shame and secrecy, and it all affects the building of a family.

    Mrs. Carol Skelton: Thank you.

    The Chair: Did you have a comment, Ms. Clute?

    Ms. Catherine Clute: I have to interject a little tiny plug. Barry is too modest. He won a Gemini for his film.

    Mr. Barry Stevens: What's a Gemini?

    The Chair: Dr. Dromisky.

    Mr. Stan Dromisky (Thunder Bay—Atikokan, Lib.): Thank you very much. My question pertains to the area we were just discussing in the last ten, fifteen minutes.

    I look at you people and I listen to you. You're very articulate, very bright, and intelligent in the way you're handling this whole issue. I really feel that a lot is being wasted in the sense that you belong to organizations and you communicate with each other. It's the blind leading the blind idea.

    You talked about secrecy. That still prevails. I know that. I know in my family clan, we didn't find out until years later that somebody went through a process much like what you went through. You're talking about it being kept secret.

    I agree with you, it has something to do with the person's ego. It's an indication of failure and no one knows who to blame. It could be her, it could be him. You know what I mean? All of a sudden she's pregnant. However, that's beside the point.

    The point I'm trying to drive at is this. There is still a desire to keep it a secret for most people. They're not open. And the reason is because we don't know how easy it is to be open. I think that's the main problem.

    I would like to indicate something here. I just read your book, every word, and looked at the pictures. And I was really greatly moved. You have something there that's worth its weight in diamonds. That kind of thing should be published. That should be on the market. That should be there for people who are interested. That should be part of a program for educating the general public, but not about the scientific. No. Stay away from all of these terms and everything else. The public doesn't understand all that. But the way you have expressed it in that book is priceless. I've never seen it done that way before. Congratulations.

º  (1640)  

    Ms. Irene Ryll: Thank you very much.

    Mr. Stan Dromisky: Your children are very fortunate, absolutely blessed.

    Ms. Irene Ryll: We feel the same way. So thank you so much. Thank you very much.

    Mr. Stan Dromisky: Is there any move to break that mould and use a different approach for educating the general public? Most doctors will say “I'm going to refer you to this person and this person, and you're going to go and...”. Do you know what I mean? And everything's kept secret. Even most of the people who are involved don't know much about what's happening to them.

    Ms. Irene Ryll: I know what I do with my husband is that we're involved with an infertility support group in Edmonton. So oftentimes we'll get a name of a couple. They'll call us and they'll want to talk. So we'll go over with our kid books and we'll talk to them individually. But of course that only reaches a very small number of people.

    Mr. Stan Dromisky: Yes, that's right.

    Ms. Irene Ryll: And I have been talking with someone who is involved with infertility counselling and we've been talking about trying to get together maybe some kind of a national site--even if it's just a website--with some information and contact numbers so people can contact us and we can just tell them or link them up to somebody. But that hasn't got off the ground yet.

    I'm also hoping that with the agency, the agency will--and God, I hope this legislation goes through--have some kind of a simple brochure, which we need, that has similar points as to what's in the book as to how to tell, why to tell, and it's wonderful to do this, and these are the reasons why. And that kind of a thing could maybe be given out to people when they go in for treatment or they think about it. And they go: Gee, there's nothing really wrong with this. There's no secret. It's printed in a book. It must be okay. Or it's printed on a brochure. And there's really not that much out there for people.

    Mr. Stan Dromisky: I know couples in Thunder Bay, where I'm from, who have no children and they get to the point--they're in their late forties and their fifties--that they rationalize. They say they never wanted children, and I think they really wanted them. You see the signs if you know them well, the way they behave when other children are around, and other couples with their children, and when other couples talk about what their children are doing, what they're accomplishing in school and everything else. You see the body language is there.

    I think there are a lot of people out there who are going through these kinds of experiences where they just don't know what to do. They don't have that.... They have to, all of a sudden, take that one step to get across the threshold to be able to help themselves.

    Ms. Irene Ryll: And I think it's important to have peer support when you're dealing with assisted reproduction, because it's not just about getting pregnant, it's also about what happens after.

    People wonder, how do I tell? When do I tell? They want to tell but they don't know how, and then time goes by.

    I was contacted by a woman not that long ago and she has an adolescent now. They never told her and they don't know how to tell her. They wonder whether adolescence isn't the best time to tell anybody anything.

    The Chair: They don't listen anyway.

    Ms. Irene Ryll: Now they know that they should tell and they wonder how to do it. We're encouraging her to read and research and connect with a counsellor and perhaps--

    Mr. Stan Dromisky: Or read your book....

    Ms. Irene Ryll: Well, I never tried that.

    At 13 years of age I don't know if she'll quite...it's a little simply written.

    Mr. Stan Dromisky: Thank you.

    The Chair: Mr. Lunney.

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

    I'd like to thank all of our witnesses for coming again on short notice and changing their schedules to be here to help us with these issues.

    We've heard some strong comments about the question of incentive and gamete donations.

    The current bill will allow the import and export of gamete. We've had testimony here that clinics in the Toronto area collecting semen pay $50 a sample. The donors are only allowed to donate three times a week for safety purposes and they also get a compensation for recruiting. So a university student who brings in a buddy, if he qualifies, gets a finder's fee.

    The question that I really have is on the import and export. We had testimony here on the fact that we actually have a clinic that imports semen from prisons in the United States. It's true.

    You're involved in the industry. You've had involvement in this very difficult thing about having difficulty creating children, and you have a completely different perspective on it from some of our recent witnesses. On the question of a shortage of biological material in Canada, do you feel that with 33 million of us Canadians here we should be able to solve this as a family, together, without having to import and export?

º  (1645)  

    Ms. Olivia Pratten: Yes, I feel that very strongly. I feel there's inadequate public education, funding, awareness about these issues. If you look at the other countries, when they've had large-scale awareness about the issues, people have come forward. They've had no problem recruiting anonymous donors in the past, and that's one segment of the population. I don't think there would be any problem recruiting open donors. I think it's very much possible and I think it has to be a priority too.

    Saying it's easier for me to import it from Sweden or from the prisons or whatever is really lazy. It's the financial concerns coming in again that it's more economical. But I think we owe the children better than that.

    Mr. Barry Stevens: I think distance facilitates anonymity. If we're in favour of openness, anything that facilitates the re-personalization of the process is good. I think that shipping in quantities of sperm from Denmark--which is the site of the largest sperm bank in the world, and it ships all over the world--becomes a problem.

    I know quite well how the Sperm Bank of California does things and I know they have identifiable donors and they have very good contact and so forth. I'm not quite so certain that it would be a complete ban on that. But I agree with you that it would be surprising if you couldn't find sperm donors in this country if it were done properly and altruistically.

    Ms. Irene Ryll: And I agree with that too. For instance, our clinic had a private sperm bank, and they closed it down when the sperm crisis happened in 1999 and they did not start it up again.

    I've talked to several fertility specialists who told me that doctors were not interested in starting up their sperm banks again. I think that's really sad, because if they want to help the infertile population that needs the sperm, yes, it's going to take some work, yes, it may be against what they're personally used to, but if we want to have access for patients then we have to work at recruiting the donors. And I do believe that this can be done.

    There's a clinic in London, Ontario, that's interested at this time to pilot or start recruiting identifiable donors. So the interest is there, and that's something that people want and need.

    Mr. Barry Stevens: They were able to close those sperm banks because of the imported sperm.

    Ms. Irene Ryll: It's easier for them. And the cost is quite expensive for patients as well to get access to sperm from American banks because of the shipping charges, etc.

    Mr. Barry Stevens: I suppose restricting it would open it to a NAFTA challenge, though, wouldn't it?

    The Chair: We should point out that people would be forbidden from using sperm that has been paid for. So from that perspective, if it's been paid for in the States--

    Mr. Barry Stevens: They're going to shut it down.

    The Chair: --it will be illegal for Canadian doctors or clinics to buy it across the border. There are some who believe that the piece of the legislation that is in there will at least shrink the amount that's coming across the border, but Dr. Lunney isn't quite so optimistic.

    Ms. Irene Ryll: The question is why are they starting up their sperm banks again to have a supply of sperm for Canadians. Because they know this is coming--an open ID system. If it doesn't get passed this time around, it will come. That's my comment.

    Mr. James Lunney: In the same vein, really, we've had people argue rather passionately that women who are gestational carriers, who are surrogacy, should under the bill be allowed to recoup loosely defined expenses and loss of income. Now, with the U.K., as I understand from what we heard this morning, that includes loss of income. So if they were earning $150,000 as a lawyer or something, I suppose they could be compensated equally to the task, or whatever their income was.

    How do you people feel about compensation?

    Catherine.

º  (1650)  

    Ms. Catherine Clute: I've just handed a letter to Ms. Brown that contains my views on surrogacy. I go on for two pages about the problems I have with compensation for surrogacy.

    My son's birth mother was a friend of mine before she got pregnant with Daniel. I was not allowed to buy her flowers, because that would have been seen as being an inducement to relinquish this child to us. I don't see how gestational carriers who are carrying babies shouldn't be treated any differently than in adoption, because surely if you're going to pay me $100,000 to sit at home, that's an inducement to do something. That's not a reasonable expense.

    Mr. James Lunney: In fairness, that's probably stretching it a bit. I think that the testimony we had here was what it averages currently in the unregulated state is about $18,000 to $20,000.

    Ms. Catherine Clute: I'm with Olivia when she talks about an incentive versus reimbursement. Anything that is even vaguely an incentive is not something I would personally support.

    The Chair: Thank you, Dr. Lunney.

    Mrs. Sgro.

    Ms. Judy Sgro (York West, Lib.): Thank you very much.

    Thank you all very much for coming and sharing your feelings on this legislation. Certainly Barry and Olivia were instrumental in affecting our thoughts as we went through this one when you spoke before.

    Barry, could you go over those numbers you quoted again about the percentages...?

    Mr. Barry Stevens: Of offspring?

    Ms. Judy Sgro: Yes. If we get rid of the anonymity situation here, we're not going to have sufficient donors. And you said that in the other countries it had already gone that way and they had eliminated the anonymous donors.

    Mr. Barry Stevens: In Sweden they passed a law in 1985. There was a drop in DI births. This was due to a number of factors, including closure of private clinics, doctor opposition to the new law. There were some laws passed that eased adoption during that period too. So there were a number of reasons why there was a drop in DI births.

    The number of donors in one report remains static and in another they drop slightly. Part of the problem here is that there wasn't a really accurate countrywide registry. Just like in Canada, the stats were hard to get.

    But in Sweden, I'm quoting now, “From 1992 there has been definitely a considerable increase in the number of available donors, coinciding with recruitment programmes.” The number of donors climbed eventually by 65%. This was in 1994. So that's 65% over what they were in 1985. Now, these figures are eight years old, but they're nevertheless post-legislation. They come from Ken Daniels and Othon Lalos, who's a Swedish researcher. I actually brought the paper, which you can get hold of.

    The Sperm Bank of California are the people in the States that first did identity release donors. By the way, 80% of all recipient couples there choose identity release. This is both single women and heterosexual couples and lesbian couples as well. But there's no difference between those groups, by the way. It used to be about fifty-fifty, I can't remember the figure. But now the most recent figure is that 81% of donors choose to be identifiable. Incidentally, the first organized meetings are going to take place this year--well, maybe early next year--between an offspring and a donor.

    As to Victoria, I don't have exact figures with me--well, I do actually--but there was a drop in donors when ICSI came in, new fertilization, new infertility treatments came in and reduced the need. There was a drop then. But since the legislation the number of donors has gone up slightly. For New Zealand, I don't know the figures, but I do know from talking to a researcher there that they have an adequate supply of donors.

    Ms. Judy Sgro: And you think that part of the issue here in Canada with some of our clinics and so on that are very much resistant to the issue of anonymous donors, of us eliminating that, is the fact that they'd be responsible for the tracking of where these people are and the fact that it's more money and all the rest of it?

    That's not the message they certainly gave to me, but we're always looking for the guy in the corner with the different messages.

º  (1655)  

    Mr. Barry Stevens: Yes, I don't know what motivates them, of course, but I think it's that they don't know how. One of the big differences between adoption and assisted human reproduction is where they come from. Adoption comes from originally the churches, and then social workers, and psychologists. That's a very different tradition about building families. And doctors come from a technical background. They're not accustomed to having to deal with human interaction. They're not comfortable with it. Plus, they have grown up in a system appropriately of patient confidentiality and medical records being secret. They're very accustomed to this. They're also accustomed to dealing with cellular microbiology. They're comfortable with that stuff, and they're not actually, I don't think, very comfortable with human interaction.

    I don't think they'd know how to go and recruit it. That being said, it's frustrating that when expertise is offered to them in these areas they're not particularly interested, and I think that's annoying.

    That being said, there are some doctors who've shown an interest. Alfonso Del Valle in Toronto has worked with us around these questions.

    I know Xytex, which is an American bank opening in Toronto, now is working with identifiable donors, and the University Health Sciences Centre in London, Ontario is. I don't know about other provinces, but that's....

    But I think there's a habit of secrecy in the medical profession.

    Ms. Irene Ryll: I know that the donor I spoke with said that he was a blood donor, and he also had some knowledge of someone in the family who was a doctor who worked with infertility patients. So he had a knowledge of it, and he also was a blood donor and felt it's just something else he could do.

    Mr. Barry Stevens: Something anecdotal. Somebody I know, Rona Achilles, who testified here last time, said that she met somebody once, and he was a physician himself, who said “Yes, I was asked to be a donor back in the seventies, and I was going to do it and they said it's anonymous, and I thought, I don't think I want to do that.”

    I don't know this to be true--in statistics there's no evidence of this--but is it not possible there may be people who actually refuse to donate because it's anonymous?

    We have these assumptions, but I'm not sure they're true. Anyway, the evidence suggests that it is possible to find identifiable donors in countries that are more or less similar to Canada in other ways.

    Ms. Judy Sgro: Thank you very much.

    The Chair: Thank you, Ms. Sgro.

    I want to go forward with sort of the same theme. We are caught in this dilemma. Your testimony, the first time around, and again today, of course, is very compelling.

    We had another panel--I don't know if you've read their testimony; I think it was last week. They are mostly of the ilk of people who were trying to use assisted human reproduction to build their families, and in summary, their opinion is that the couples who go to a fertility clinic should be able to remain anonymous, like any other patient who goes to the doctor for any procedure. They don't want to be part of any registry.

    They want their physician to be able to buy sperm and buy eggs, and they essentially want a supply around them of as many embryos as possible, because it takes so many to have around in order to implant enough to get a live birth.

    They want all the donations to be anonymous. They want to be able to reimburse surrogates to quite a high order of...they call it “reimbursement of expenses”, but they want to include wages lost, which could be a whole year.

    They want everything. They're not worried about commercialization. They compared a surrogate mother being essentially paid to nurture their baby to a person in a nursing home caring for their aging mother, another loved one in their family, as if it was a job. Anyway, those were their attitudes.

    They are highly supported by family doctors or doctors who refer patients to these fertility clinics, and of course they're extremely highly supported by the doctors in the fertility clinics.

    I think, Barry, perhaps you've put an understanding on this. I don't understand the doctors who support that position--I'm just giving you a personal opinion now. I think you may be right that it has to do with people who are sociologists, social workers, psychologists...think about society as sort of a whole; and maybe scientists, researchers, and medical doctors somehow rather relate to that one couple and that potential baby, as opposed to the whole system.

    Maybe it's a science route as opposed to a social science route, but we somehow have to blend the needs of these people, or somehow or other get up above these two visions and create a framework that is acceptable to the population of Canada, because there are a lot of people who aren't involved in this in any way. They're not involved in adoption; they're not involved in infertility. But as legislators, we cannot have a law that they find terribly uncomfortable, because it will be some of their tax dollars that will go in to form this agency and the administration of all this.

    We also have on our committee two new members who are medical doctors.

»  (1700)  

    Mr. Barry Stevens: They're not here.

    Ms. Irene Ryll: They're not here.

    The Chair: Well, to be honest, one of them missed her flight this morning from B.C., and the other one is making a presentation currently. I really think they couldn't be here. But the problem is, everybody was here for that other panel.

    So I don't quite know what to do to make sure, somehow or other--maybe the parliamentary secretary can think about this a bit--we get these two visions of building families together, because the other group, for example, told me over the phone, after we published our report, that it was an absolute joke that we called our report, last year at this time, Building Families, because we were actually eradicating the possibilities of them building families. They hated our report. They hated everything about it.

    Ms. Catherine Clute: May I please talk with you, Ms. Brown, on this? There were a lot of us who thought this is marvellous; this is beautiful--

    The Chair: Yes.

    Ms. Catherine Clute: --but we didn't phone.

    The Chair: No, I was aware. I knew you'd be happy.

    Ms. Catherine Clute: Yes, and not just me, all kinds of people. My mother is here, and she thought it was a good thing too.

    But we aren't opposing their views; it's on the same spectrum. If you were to look at reforming heart surgery, the Heart and Stroke Foundation and the people who are waiting for heart transplants are going to feel a certain way. The people further along the spectrum are going to feel a little bit differently.

    I was in the very same place as those people in that boardroom last Tuesday in Toronto, and so was Irene. I have cried in my doctor's office. I have done all kinds of things. While you're going through infertility, it's about you.

    The Chair: Yes.

    Ms. Catherine Clute: When your family is formed it is no longer about you.

    The Chair: It's about the children.

    Ms. Catherine Clute: For anything, you can't just pay attention to the people in crisis. You need to look at the whole spectrum of emotions and the whole spectrum of reactions.

    And another reason, beyond the philosophical difference in doctors' thinking, is that the doctor sees the fertility issue as a crisis, and darn it, we're doctors, we're going to fix it. They fix it and the person goes away. They never see the people who come to our support groups, who decide right up front, I'm not doing any of that high-tech stuff because that is not what is good for us and for our family. I'm going to look at different ways of living my life.

    My fertility doctor doesn't see me now when I'm dealing with my son. I'm not going to go back to them. They only see one snapshot in time. So really we're not opposing views; it's just further along the spectrum.

    The Chair: Well, you are as far as the legislation is concerned. You're completely opposed.

    Ms. Catherine Clute: Oh, yes. In terms of a societal thing, we are there; we have the T-shirt. I still have my laparoscopy scar.

    The Chair: Mr. Stevens, do you want to comment?

    Mr. Barry Stevens: I really don't envy you. I think you're going to have a big picture of King Solomon behind you. I think Catherine made a really good point about that.

    If those folks are saying “We want a baby really desperately and you're depriving us and we want to be able to purchase babies from Guatemala, we regard that just like paying for our mother in a nursing home”, I'm trying to say that there are obviously those limits that we would place on certain kinds of behaviours and certain kinds of commercialization in these areas.

»  (1705)  

    The Chair: But even their definition--

    Mr. Barry Stevens: And I would say that respecting the principle in paragraph 2(b) that “the health and well-being of children born through the application of these technologies must be given priority in all decisions respecting their use”, what I think they can forget in that situation is the children born from these technologies. And they should be a priority, and their health and well-being should be a priority.

    The Chair: I think they claimed, and I believed them, that should they have these children through these technologies, nothing would be more important to them in their lives than these children they are so desirous of. And I think we could count on that.

    But somehow or other there's this view that it's us and our doctor and the children we're going to get through this process, so leave us alone; don't put any restrictions around us; we will take excellent care of these children and love them to death. And I believe them when they say that.

    It's the larger societal view, or further along the spectrum, as Catherine has pointed out, but it's hard to get that across.

    Ms. Irene Ryll: And I remember when the royal commission was starting up and we were just in our infertility crisis. You could probably look in the transcripts. I remember writing letters, so upset with the government that they were going to possibly take away my chance of IVF, because that's the place I was in at the time.

    It's the pain and the grief and the sorrow of wanting to have that child. And that is all-consuming and I understand that. And I want donor conception to be there for people, but it has to be responsible to the families that are built.

    Those children are cute little babies. They grow up and they start looking at you. When we tell them the story of how this nice man did this, and he did it because we paid him $50, otherwise he wouldn't have done it, is that the kind of story you want to tell your child? I wish I didn't have to tell that, because I know some day we'll have to talk about it.

    The Chair: Not all of them, but a couple of these people say they have no intention of telling their children, so we are getting into that whole secrecy thing that we know builds neurotic families.

    Mr. Barry Stevens: Also, it possibly can result in the early death of the children.

    Ms. Irene Ryll: It's such a tragedy.

    Mr. Barry Stevens: Not having genetic information that could save their lives could kill them.

    Ms. Irene Ryll: This is a health issue. And if we can't promote and--

    The Chair: Well, the bill provides for that. The bill says there must be health information. I don't know if the regulations will be tight enough to keep that updated all the time.

    Mr. Barry Stevens: They could all disclose--

    Ms. Irene Ryll: But then you need society's support for that. And I think that has to stop and start the clock.

    The Chair: Yes, if they don't disclose, what good is it?

    Mr. Barry Stevens: I didn't address it in the brief. I actually do believe that in the regulations, at any rate, I would hope that any couple undergoing fertility treatment would make an undertaking to talk to their children about where they came from. And that is what we do with adoption, as Catherine points out.

    I would also eventually--and it's radical and not everybody agrees with me--love to see birth certificates that are available at least upon the adulthood of the offspring that tell the truth. In other words, you circumvent the whole question of parents disclosing or not disclosing.

    The Chair: You say “that are available”, so suppose the parents don't tell the child how he or she was conceived. Once that child turns 18, are you suggesting the government would have to keep track of that child and mail him a letter saying--

    Ms. Catherine Clute: No.

    The Chair: But if the child doesn't know, the child won't ask.

    Ms. Catherine Clute: You don't let those people proceed through the process until they've had full implications counselling. If after all that they choose not to disclose, they can go somewhere else for treatment, or whatever.

    Mr. Barry Stevens: I would suggest that at age 18, any person could apply to the HFEA and ask, “Was I DI-conceived? What's on my original birth certificate?”

    Of course, you'd have to suspect it if your parents didn't tell you.

    The Chair: That's a long way from what we heard the other day and from some of the opinions being expressed around this table. They made a joke about whether the government should have to tell every child who was conceived this way, and everybody laughed.

    You're saying that for that child to have equal rights to other children, maybe there should be some kind of record kept.

    Mr. Barry Stevens: It's the direction adoption is going, and I think it's the direction we'll want to take.

    I feel we are standing on the threshold of a time when a lot of new technologies are coming out, and people may not be quite the same a hundred years from now as they are right now. The human connections, where we came from, our ancestry are important. It's the web of life to which we all belong. I don't want to sound to mushy here, but I really believe that.

    The Chair: I like it when you do that. It gives me a line for tomorrow.

    Mr. Barry Stevens: We're all connected, and we're connected to our past, to our bodies.

    The Chair: I agree with that.

    Mr. Barry Stevens: It's important for health reasons, but it was very important to me to discover... I don't know the identity of my donor, but I do know he was Jewish and came roughly from the Pale settlement in western Russia a long time ago, because I've had my Y chromosome analyzed.

    It's a powerful experience for me. I can't tell you exactly why, but I believe it's very important to affirm those connections, as we move forward in the 21st century and the brave new world.

    The Chair: As if the world isn't depersonalized enough, the whole technological revolution, it seems to me, separates people. There's the cocooning phenomenon, where people spend a lot of time at home with no one else. And how many people now live alone? There's a rising number with every census.

    It just seems like anything that connects us to our tribe, our background, our history---

    Mr. Barry Stevens: Dr. Daniels in New Zealand, who I quoted in one of the studies, opened up the system in New Zealand, actually without legislation, and then legislation followed. He was inspired by the Maori, the native people of New Zealand. They have this concept called “fuckapapa”--I know, it's an unfortunate word. It's actually “whakapapa, but I wasn't.... They have the idea you can't speak in your community unless you can say where you came from and who you came from. They talk about this concept of walking into the future backwards, looking back into your ancestry.

    The Maori people are kind of horrified by anonymous donation. Dr. Daniels was very influenced by that, and New Zealand was quite influenced by that.

    The Chair: How interesting.

    Mr. Barry Stevens: I have just one small point about those folks a few days ago. I think they're motivated a lot by fear of terrible things that could happen: they won't get a family; the donors will disappear.

    Ms. Catherine Clute: That's what they're being told.

    Mr. Barry Stevens: They're being told that, and they're being driven by that. I understand that motivation. There's the secrecy, “We won't tell our children.” All those responses sound to me like there's fear at the core of it, and a shame about it. I hope the legislation doesn't become motivated by those same feelings.

    The Chair: It hadn't struck me, but it's possible they have been told, by the people who own the fertility clinic, about all the dire consequences. The only dire consequences are the fertility clinic will have to do more work, be more responsible, and have less profit maybe.

    Ms. Catherine Clute: In an adoption, a social worker can counsel the birth parents, but cannot counsel the adoptive parents in the same adoption.

    In the clinics that have social workers, they are talking to the person who's selling her eggs and the person who's receiving the egg. The social worker's job description includes making sure everybody gets along, and they're not necessarily the best people to provide--

»  (1710)  

    The Chair: We found out that a lot of the clinics don't have real social workers, but have people with psychology degrees. Some of those psychology degrees are fairly science-based, as opposed to the other side of psychology.

    Ms. Catherine Clute: Yes, so that's the message—

    The Chair: Yes. It's interesting to me that you have raised the University of Western Ontario two or three times for a variety of good reasons. In our witness list, we had a social worker from there who was absolutely excellent.

    Some hon. members: Yes.

    Ms. Catherine Clute: Jean Haase.

    The Chair: Yes. She was absolutely excellent. She set the bar up here, which is what we tried to do in our report. But it seems to me that these dispassionate counsellors may not be on the payroll of the fertility clinics—

    Ms. Catherine Clute: Because if it works, you are turning people away.

    The Chair: Well, she said she did turn people away.

    Ms. Catherine Clute: Yes.

    The Chair: She didn't turn them away, but through her counselling they came to the conclusion that either they weren't ready or the whole business wasn't for them.

    Ms. Irene Ryll: Sometimes she sees them more than once.

    The Chair: Oh, many times, because they have to get her okay. Therefore, she might need to see them six or ten times before they understand they're not ready—without her really telling them this.

    Ms. Catherine Clute: The clinic in Halifax has a psychiatrist they refer you to if you cry in their office. But you have to break down before you get to see the psychiatrist.

    The Chair: Yes.

    Dr. Lunney wants to get in here.

    Mr. James Lunney: I just have a short intervention, because I understand that some are pressed for time here.

    I think the whole sense of belonging and personal identification is really important. As a society I think we're hurting because of divorce and separations, where kids are separated from their families and grandparents, and so on. There used to be a sense of accountability to the extended family, which a lot of children suffer from not having today. But to complicate this with not knowing where one comes from is certainly a very important issue.

    The question I wanted to get back to is that of health information and updating of records. With an anonymous donation or just the examples you've brought today—the little piece of scrap of paper with the health records or information on it—

»  (1715)  

    Ms. Catherine Clute: Excuse me. I know I'm way out of line here, but it's not health information. Have you seen what Irene has? This is what Irene has.

    The Chair: Read it out.

    Mr. James Lunney: Well, it's pretty comprehensive. It gives the height as six feet, and then adds that the donor was 175 pounds, had light brown hair, hazel eyes, a fair complexion, and was an A plus, which is presumably the blood type.

    Ms. Catherine Clute: And this is Olivia's.

    Mr. James Lunney: This is another scrap of paper, but for Olivia now. It is entitled “Information re: donor”. It then goes on to refer to a medical student who donated several times and had only one positive result. Therefore, there are no other siblings in our program. Caucasian, light brown hair, blue eyes, five foot ten, sturdily built, blood group A positive. So the only health information was really the blood type.

    Ms. Olivia Pratten: We know someone from that particular clinic. For his health history, he was simply asked, “Are you healthy?” This was 15 years ago.

    Mr. James Lunney: Yes.

    Ms. Olivia Pratten: But from what we understand, that clinic still does not have any counselling whatsoever. There are no referrals. Nothing. If patients want counselling, they have to pay for it themselves. They're just referred by their family doctor.

    I didn't say everything I wanted to say today. I personally don't believe that he has anything beyond that. But even what he has given me, I can say—through simple genetics—that the hair colour and eye colour are not accurate. They are not accurate. So this leads me to think that I don't even want to ask him anything else. I ask, “Well, what are you going to tell me? Is it going to be more lies, just because you want me to go away?” So I don't believe what he says, though genetics could indicate that the blood type could be positive.

    But I don't think he knows the name. I don't think he took any detailed information. I don't think he knows. And the only way for me to find out is if something happens when I'm older. My frustration with this physician is that while I can accept the limitation that I might never meet him, I can't accept that there's no middleman. There's no way to acquire that information or even to inquire by sending him a letter. On anything, the response is “Absolutely no. Sorry, that's not my job here.”

    It's frustrating. It's incredible frustration.

    Mr. Barry Stevens: The former Minister of Health, Mr. Rock, went public with his successful treatment for prostate cancer a couple of years ago. He got treatment early, which was successful because he got an early diagnosis. He got an early diagnosis because his father tragically died of the disease. Had Allan Rock's father been his sperm donor, I assume that Allan Rock would probably be diagnosed too late for treatment.

    There are lots of these anecdotes. I'm sure you get the point.

    The Chair: Dr. Lunney

    Mr. James Lunney: Well, as to the auto-diagnosis situation that you went through in the days when you started, of course, the requirements for health reporting are going to be tighter here now. In terms of auto-diagnosis--how you are feeling--that's obviously not acceptable today.

    Mr. Barry Stevens: Right.

    Mr. James Lunney: But if you're asking a prisoner about his health records, again, there's the question of whether he is going to give you an honest history or does he even know or care. With somebody that's locked up, you might wonder whether they're even able to give you reliable information.

    Ms. Irene Ryll: And is he being paid for that?

    Ms. Olivia Pratten: Exactly. If someone's being paid, they're more likely to--

    Mr. James Lunney: Well, only for his expenses.

    Mr. Barry Stevens: It's a highly controversial area about genetic involvement in criminal behaviour. But one of the ironies of this business is that doctors whose entire training is based on genetics and in the science turn around and say that doesn't matter at all, it's the social family that means everything.

    Ms. Olivia Pratten: Yes, it is. It's extremely ironic.

    Mr. Barry Stevens: But it's ironic that people who are trained in genetics don't mind getting sperm from people who have some behavioural problems.

    Mr. James Lunney: This is the last question I have. Part of the bill actually would allow for posthumous extraction of gametes, and I just wondered--

»  (1720)  

    Mr. Barry Stevens: Post...

    Mr. James Lunney: Posthumous, after death. I just wondered if you had any comment about how you feel about that.

    Ms. Olivia Pratten: Actually, that was something else I noticed. I'm opposed to that. Again what you have to come down to is what the child is going to experience, and what the child is going to experience is a father who died before they were even born. I'm opposed to it.

    I've heard women explain that they've lost their mates, but he was going through cancer treatment so his sperm was preserved. She really wants to feel this connection with him again and wants to have her family. I have the utmost empathy for her, but I ultimately see it through the child's eyes. I feel it's tragic when somebody's parent dies after they're born, in their youth, so why would we create someone whose parent is never going to be there to begin with?

    It's very complex, but ultimately I don't think it's a good thing to have in the bill.

    Mr. James Lunney: Anybody else?

    Mr. Barry Stevens: There's a medical emphasis in the States that used to talk about the “yuck factor” in all these areas. I can't remember--

    Ms. Catherine Clute: I was going to say “yick”.

    Mr. Barry Stevens: I don't know. That's my response. On the other hand, I guess I would say... I'd pass. It doesn't feel very good, but I don't know.

    Ms. Irene Ryll: I don't know either, especially if they were in treatment and they had a frozen embryo and then the husband dies.

    Ms. Catherine Clute: I like the set-up they have in England for this kind of thing where it's looked at on a case-by-case basis.

    Mr. Barry Stevens: Diane Blood.

    Ms. Catherine Clute: Yes.

    My husband has had cancer, so that scenario rings true with us. Usually, you know in advance that this is going.... You just don't get struck dead or whatever. The guys who died in car crashes and they extract the sperm afterwards, that is a real icky thing for me, but the well-thought-out thing of wanting to build a family later on, there might be room for that.

    Mr. James Lunney: Thank you.

    The Chair: Thank you very much.

    Is there anybody else? Seeing none, I'll thank our witnesses very much for coming. All I can say is keep lobbying, because hopefully this bill will be out of committee. It will probably be amended somewhat in committee. It will get to the House and then there's a possibility of it being re-amended in report stage. So in a sense, you have to almost increase your efforts when it comes out of committee and goes back to the House.

    Ms. Irene Ryll: We need legislation. We need to have something in this country.

    Ms. Catherine Clute: I've managed to convince my personal member of Parliament, Gerald Keddy, from the south shore of Nova Scotia, who had no interest in this issue before we started corresponding. We're not going to go away. We're around and we're in this for good.

    The Chair: Well, let me just say that there are something like 35 members of Parliament in Toronto, and the people who have opposing views to yours are very verbal.

    Ms. Catherine Clute: I don't need to concentrate on the local level any more because I did my share.

    Ms. Olivia Pratten: Just the ones who weren't here today. Yes, we know.

    Ms. Catherine Clute: Not to be totally mercenary about this, I need a travel claim form so that I can have these--

    The Chair: Speak to the clerk about that.

    This meeting is now adjourned.