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37th PARLIAMENT, 2nd SESSION

Standing Committee on Health


EVIDENCE

CONTENTS

Tuesday, November 26, 2002




¿ 0910
V         The Chair (Ms. Bonnie Brown (Oakville, Lib.))
V         Mr. James Lunney (Nanaimo—Alberni, Canadian Alliance)
V         The Chair
V         Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP)
V         The Chair
V         Mrs. Brenda Chamberlain (Guelph—Wellington, Lib.)
V         The Chair
V         Ms. Kate Acs (Individual Presentation)

¿ 0915
V         The Chair
V         Ms. Tanya Constantine (Individual Presentation)
V         The Chair
V         Ms. Dara Roth Edney (Individual Presentation)
V         Mr. Peter Edney (Individual Presentation)
V         The Chair
V         Mr. Alex Hunter (Individual Presentation)
V         The Chair
V         Ms. Diane Allen (Executive Director, Infertility Network)
V         The Chair
V         Ms. Kate Acs

¿ 0920
V         The Chair
V         Ms. Tanya Constantine

¿ 0925
V         The Chair
V         Ms. Dara Roth Edney
V         Mr. Peter Edney

¿ 0930
V         The Chair
V         Mr. Alex Hunter

¿ 0935
V         The Chair
V         Ms. Diane Allen

¿ 0940

¿ 0945
V         The Chair
V         Mr. Rob Merrifield (Yellowhead, Canadian Alliance)
V         Mr. Alex Hunter

¿ 0950
V         The Chair
V         Mr. Alex Hunter
V         Mr. Rob Merrifield
V         Ms. Kate Acs
V         Mr. Rob Merrifield

¿ 0955
V         Ms. Kate Acs
V         Mr. Alex Hunter
V         Ms. Diane Allen
V         Mrs. Brenda Chamberlain
V         The Chair
V         Ms. Diane Allen
V         Ms. Kate Acs
V         The Chair
V         Ms. Carolyn Bennett (St. Paul's, Lib.)

À 1000
V         The Chair
V         Ms. Diane Allen
V         Ms. Kate Acs

À 1005
V         The Chair
V         Mr. James Lunney
V         Ms. Diane Allen
V         Ms. Dara Roth Edney

À 1010
V         The Chair
V         Mr. Paul Szabo (Mississauga South, Lib.)
V         Ms. Dara Roth Edney
V         Mr. Peter Edney
V         Ms. Diane Allen

À 1015
V         Ms. Dara Roth Edney
V         Ms. Diane Allen
V         Ms. Dara Roth Edney
V         Ms. Kate Acs
V         Ms. Diane Allen
V         Ms. Kate Acs
V         The Chair
V         Ms. Judy Wasylycia-Leis
V         The Chair
V         Ms. Judy Wasylycia-Leis
V         Ms. Dara Roth Edney

À 1020
V         Ms. Tanya Constantine
V         Ms. Kate Acs
V         The Chair
V         Mrs. Brenda Chamberlain

À 1025
V         Ms. Dara Roth Edney
V         The Chair
V         Ms. Judy Wasylycia-Leis
V         The Chair
V         The Chair

À 1035
V         Mr. Ingo Kraemer (Individual Presentation)
V         The Chair
V         Mr. Ingo Kraemer

À 1040
V         The Chair
V         Ms. Anita MacCallum (Individual Presentation)

À 1045
V         The Chair
V         Mr. Alan Simpson (Individual Presentation)
V         The Chair
V         Mr. Alan Simpson
V         The Chair
V         Mr. Alan Simpson

À 1050

À 1055
V         The Chair
V         Ms. Janet Prince (Individual Presentation)
V         The Chair

Á 1100
V         Ms. Jan Silverman (Clinical Program Specialist, Infertility Support and Education Program, Regional Women's Health Centre of Sunnybrook and Women's College Health Sciences Centre)

Á 1105
V         The Chair
V         Mr. James Lunney
V         Ms. Janet Prince
V         Mr. James Lunney
V         Ms. Janet Prince
V         Mr. James Lunney
V         Ms. Anita MacCallum
V         Mr. James Lunney
V         Ms. Anita MacCallum
V         Mr. James Lunney
V         Ms. Anita MacCallum

Á 1110
V         Mr. James Lunney
V         Ms. Anita MacCallum
V         Mr. Ingo Kraemer
V         Ms. Jan Silverman
V         Ms. Rebecca Simpson (Individual Presentation)
V         Mr. James Lunney
V         Ms. Jennifer Kraemer (Individual Presentation)
V         Mr. Alan Simpson

Á 1115
V         The Vice-Chair (Mr. Stan Dromisky (Thunder Bay—Atikokan, Lib.))
V         Mrs. Brenda Chamberlain
V         Ms. Jennifer Kraemer
V         Mrs. Brenda Chamberlain
V         The Vice-Chair (Mr. Stan Dromisky)
V         Mr. Alan Simpson
V         The Vice-Chair (Mr. Stan Dromisky)
V         Mr. Alan Simpson
V         The Vice-Chair (Mr. Stan Dromisky)
V         Mrs. Brenda Chamberlain
V         Ms. Anita MacCallum
V         Mrs. Brenda Chamberlain
V         Ms. Anita MacCallum

Á 1120
V         Ms. Rebecca Simpson
V         Mr. Alan Simpson
V         The Vice-Chair (Mr. Stan Dromisky)
V         Mr. Alan Simpson
V         Ms. Carol Skelton (Saskatoon—Rosetown—Biggar, Canadian Alliance)
V         Ms. Jennifer Kraemer

Á 1125
V         Mr. Ingo Kraemer
V         Mr. Alan Simpson
V         Ms. Carol Skelton
V         Mr. Alan Simpson
V         The Vice-Chair (Mr. Stan Dromisky)
V         Ms. Jan Silverman

Á 1130
V         The Vice-Chair (Mr. Stan Dromisky)
V         Ms. Jan Silverman
V         The Vice-Chair (Mr. Stan Dromisky)
V         Mr. Alan Simpson
V         The Vice-Chair (Mr. Stan Dromisky)
V         Ms. Carolyn Bennett
V         The Vice-Chair (Mr. Stan Dromisky)
V         The Chair

Á 1135
V         
V         Mr. Michael Koshan (Individual Presentation)

Á 1140
V         The Chair
V         Ms. Shirley Solomon (Individual Presentation)
V         Mr. Les Kottler (Individual Presentation)
V         Ms. Shirley Solomon

Á 1150
V         Mr. Les Kottler
V         Ms. Shirley Solomon
V         Mr. Les Kottler
V         Ms. Shirley Solomon
V         Mr. Les Kottler
V         Ms. Shirley Solomon
V         The Chair
V         Ms. Joanne Wright (Canadian Surrogacy Options)
V         The Chair
V         Ms. Joanne Wright

Á 1155
V         The Chair
V         Mr. James Lunney
V         Mr. Les Kottler
V         Mr. James Lunney

 1200
V         Ms. Joanne Wright
V         Mr. James Lunney
V         Ms. Joanne Wright
V         Mr. James Lunney
V         Ms. Shirley Solomon

 1205
V         The Chair
V         Mr. James Lunney
V         Ms. Joanne Wright
V         Mr. James Lunney
V         Ms. Joanne Wright
V         The Chair
V         Ms. Judy Sgro (York West, Lib.)
V         Ms. Joanne Wright
V         Ms. Judy Sgro
V         Ms. Joanne Wright
V         Ms. Shirley Solomon
V         Ms. Judy Sgro

 1210
V         Mr. Les Kottler
V         Mr. Michael Koshan
V         Ms. Judy Sgro
V         Ms. Shirley Solomon
V         The Chair
V         Ms. Yolande Thibeault (Saint-Lambert, Lib.)

 1215
V         Ms. Joanne Wright
V         Ms. Yolande Thibeault
V         Ms. Joanne Wright
V         Ms. Yolande Thibeault
V         Ms. Joanne Wright
V         Ms. Yolande Thibeault
V         Ms. Joanne Wright
V         Ms. Yolande Thibeault
V         The Chair










CANADA

Standing Committee on Health


NUMBER 005 
l
2nd SESSION 
l
37th PARLIAMENT 

EVIDENCE

Tuesday, November 26, 2002

[Recorded by Electronic Apparatus]

¿  +(0910)  

[English]

+

    The Chair (Ms. Bonnie Brown (Oakville, Lib.)): Good morning, ladies and gentlemen. This meeting of the Standing Committee on Health is now called to order.

    I have a couple of questions for both the committee and then for the witnesses before we proceed. The first one relates to the fact that we've had a request from a production company to videotape this meeting for use in a documentary later, and of course I said they could come but that they might have to leave if we didn't get the permission of all the participants. So may I ask the committee members first if anyone has an objection to having this meeting videotaped.

+-

    Mr. James Lunney (Nanaimo—Alberni, Canadian Alliance): Could you state who the production is for?

+-

    The Chair: This would be a documentary on surrogacy done by a company called Lank Beach, based in Winnipeg.

    Why don't you think about that one for a minute, and I'll go on to the second one? We have also had requests for reporters to cover the meeting in Toronto, and once again I said they could come but they might be asked to leave if the witnesses did not feel comfortable making their presentations in front of them. Are there any objections from the committee here?

+-

    Ms. Judy Wasylycia-Leis (Winnipeg North Centre, NDP): With respect, Madam Chair, in response to both your requests, I think that our meetings are open. Media are able to observe our hearings here in Ottawa, so it seems to me that there should be no difference made in terms of where the hearings are actually being held. In the same light, I would think there should be no questions with respect to Lank Beach Productions. We are open and to be so has been our tradition.

+-

    The Chair: Mrs. Chamberlain.

+-

    Mrs. Brenda Chamberlain (Guelph—Wellington, Lib.): I would agree with Judy that there should be no reason to go under cover. These are open hearings, so anybody should be able to see them and view them.

+-

    The Chair: May I now canvass the witnesses at the table in Toronto. If you could, give me an indication as to your feelings on this.

    First we have Ms. Acs. Do you have any objection, Ms. Acs?

+-

    Ms. Kate Acs (Individual Presentation): I have a concern because my child was conceived using an egg donor, and that is not very public information. However, if the documentary is going to be focusing on surrogacy and if we do not include my portion of the presentation or at least make reference to the fact that my child was conceived by an egg donor, I have no problem with that.

¿  +-(0915)  

+-

    The Chair: They will not tape your presentation, Ms. Acs.

    Ms. Constantine, do you have an opinion?

+-

    Ms. Tanya Constantine (Individual Presentation): Similarly, I'm not here about surrogacy, so I would assume that mine would not be taped either. Since that is similar, I would expect the same.

+-

    The Chair: Mr. and Mrs. Edney.

+-

    Ms. Dara Roth Edney (Individual Presentation): That's fine with me.

+-

    Mr. Peter Edney (Individual Presentation): We have no issues.

+-

    The Chair: Mr. Hunter.

+-

    Mr. Alex Hunter (Individual Presentation): I have no issues.

+-

    The Chair: All right, I believe we can proceed with the first panel, with reporters in the room in Toronto and probably here and with the first two witnesses not being videotaped, if you don't mind.

    On the same panel we have Ms. Allen, who will also present. Does Ms. Allen have any concerns?

+-

    Ms. Diane Allen (Executive Director, Infertility Network): I have no concerns.

+-

    The Chair: Thank you.

    With that in mind and with the instructions given to the videotaping company, we'll proceed.

    Our first witness this morning will be Ms. Acs. Please go ahead, Ms. Acs. You have the floor.

+-

    Ms. Kate Acs: Thank you for the opportunity to speak to you today. My presentation will address the clauses of Bill C-13, and I will submit a written and more detailed list of recommendations.

    In general, I am supportive of this legislation. I think regulation of this field is long overdue. However, I would first like to tell you a little bit about my infertility experience. It's going to be a challenge to collapse the last eight years of my life into five minutes.

    My name is Kate Acs, and I'm the mother of a 19-month-old child conceived by an egg donor. I want to share my personal story with you today because it's a story shared by thousands of women in Canada today and is going to be the story of many more women in the future.

    With a world of educational and career options available to us, women are waiting longer and longer to have children. We are delaying childbirth like no other generation before us, and this trend is only going to continue. Most otherwise well-informed and educated young women like me naively assume that if we are healthy, we can have children into our forties. This is simply not true. The good news is that many of these women can be helped to conceive by using eggs donated by younger women. That's the process I used--the process that I fear will not be available to them if you pass this legislation as it is.

    The Minister of Health has said that the main purpose of this legislation is to protect the infertility community. However, there are a number of prohibitions in this bill that would make it difficult, if not impossible, for ordinary people like me to build our families. I believe the government has not solicited enough input from the very people who have used, or are currently using, reproductive technologies. Yet this legislation will have the most direct impact on us. This is no abstract academic or arm's-length issue for us. What you are about to develop will have a profound impact on our lives and the choices we have to create a family.

    To some degree, the reason you have not heard from us is our fault. People dealing with infertility struggle with a medical condition that still has much stigma and subtle shame associated with it. Most of us don't talk about the difficulties we face, and as a consequence few understand our challenges. But I would like to tell you my story because I would like you to understand, I would like your support, and I would like you to become champions for the thousands of Canadians from every economic, racial, and religious background who struggle so much to have what so many others take for granted: the privilege of having a child.

    I was 34 years old when I first tried to get pregnant. I had miscarriages, and then I couldn't get pregnant. I can still remember the day I sat across from the doctor, who very calmly told me that at 35 I was going into premature menopause and would never be able to have my own children. It was one of those moments in your life when time stands still and you watch things happening around you. I remember stumbling to a phone booth to phone my husband, and not being able to find a quarter in my purse because the tears were clouding my vision. I remember thinking, “How can this be happening to me? I'm so healthy. I'm so young.”

    So what did we do? We looked into adoption and were staggered to find that this was not an easy or cheap option in Canada. Because most mothers now keep their children, the waiting period for a healthy newborn is years. There are thousands of children who languish as wards of the state, ineligible for adoption--children we would have been happy to adopt. The cost of international adoption is $15,000 to $30,000. How many young couples do you know who have $30,000 to $50,000 easily available to adopt two children?

    My other option was trying to get pregnant using the eggs of another woman. At the time I didn't even know the option existed. Unfortunately, I didn't know anyone who I could ask to donate their eggs to me. My only sister is four years older than I, and most of my friends are my age, so they were all too old to give me their eggs. So we went to a clinic, and I was put on a waiting list for over a year. I was blessed with a pregnancy and this child of mine, who delights me more than I will ever be able to convey to you.

    The woman who donated her eggs to me was compensated, and I was glad to have been able to do so. She has given me a gift that is immeasurable. Her act of selflessness is awe-inspiring. To not have compensated her would have been completely unthinkable. I do not think of her as my egg donor; I think of her as my angel.

    I would like to read to you an excerpt from my diary from November 3, 1999:

    I'm sitting in a hotel restaurant, waiting for an early-morning meeting. I'm sitting across from a sleepy and tired-looking family of four. Mother looks pale and tired. I envy her. I envy the sweet, sleepy little girl leaning against her, half asleep.

    Ladies and gentlemen, my dream has come true. Please help it come true for other Canadians in my situation.

    I recommend you agree to compensate gamete donors. I agree with the government's goal of wanting to control the potential for commercialization in this field, but I think this goal can be best addressed by regulating the practice to allow limited compensation for donors, beyond receiptable expenses.

¿  +-(0920)  

    My concern is that if the government moves to prohibit the purchase of eggs and sperm without putting in place an adequate system that will ensure a supply of gametes, it will have the following results. Individuals who can afford it will go to the United States and the practice will be driven underground, where there are no rules at all.

    If you are not willing to support this change, please consider delaying this prohibition for a period of two to three years, during which time Health Canada or the regulatory agency can undertake a public relations campaign to encourage suitable Canadians to donate their eggs and sperm for free to other Canadians dealing with infertility.

    I would recommend that the role of the agency in terms of the collection of personal information about donors of families be in place. However, for privacy reasons, I think agencies should not be allowed to collect information about persons who undergo reproductive technologies and persons conceived by means of these procedures.

    I also support the legislation as it stands regarding donor disclosure. I think this regime mirrors the provisions in adoption where parties can only be identified to one another with their mutual consent.

    Finally, in terms of the board of directors on the agency, I think that a majority of the directors of the agency should be individuals who have been directly involved in reproductive technologies--such as parents by a gamete, embryo, or surrogacy donor, children conceived by reproductive technologies--or medical counselling, and staff employed in the field of reproductive technologies.

    In conclusion, I would like you, when you go home tonight to your children, to think about the thousands of Canadians longing to do exactly the same thing some day. Please put in place a regulatory theme that protects all of us concerned and truly allows us to build families.

    Thank you.

+-

    The Chair: Thank you, Ms. Acs.

    Could we now hear from Ms. Constantine?

+-

    Ms. Tanya Constantine: Dear members of the Standing Committee on Health, I work for Cancer Care Ontario as an oncology clinical trials nurse at the Toronto-Sunnybrook Regional Cancer Centre.I care for patients who have gynecological cancers as well as lung cancers.

    My husband, Tim, and I met at McMaster University in graduate school and he is currently an environmental engineer. We were married in 1999. In September 2000, when I was 28, we bought a home and began starting to try for a family.

    After about nine months we were unsuccessful and sought medical advice. After many months of investigations we learned that I was in premature ovarian failure at the age of 28, which meant I did not have any viable eggs in my ovaries. We endured cycle after cycle of injectable medications, trying to stimulate my ovaries to produce eggs.

    We then tried in vitro fertilization; however, again, I did not produce any eggs to make an embryo.

    The last two years of infertility have been very difficult for us. I cannot express to you the personal disappointment, guilt, pain, and despair that accompanies this medical problem. Because my uterus was healthy and my husband's sperm was normal, I was told there should be no reason why I could not carry a pregnancy. Therefore, egg donation was presented to us.

    We were happy to be given the possibility of becoming pregnant and of having my husband's genetics be part of a child that I would bear, and donation seemed to be the next best option.

    Our doctor's program was such that we knew this woman was screened appropriately, with appropriate blood tests and...medical and family history as well as a psychological profile. This comprehensive assessment assured me that this woman was fully aware of the risks of the injections and egg retrieval, that her feelings and concerns were discussed, and that she was making an informed decision. My husband and I were required to meet with a counsellor to discuss making this very important decision.

    My concern about Bill C-13 is that the process of the doctor's assessment would not be available and the infertile couple seeking egg donation would be without guidance around choosing an appropriate donor. The rights of the recipient couple as well as the donor would be ill-defined; thus, I would be concerned if I were responsible for finding the appropriate donor for my condition. Without assistance, certain medical and psychological assessments could be missed, putting both the donor and the couple at increased risk or harm.

    With the guidance of the doctors and the nurses at our clinic, my husband and I chose an anonymous donor. We are currently pregnant, and I have just turned 30.

    I do believe that it is appropriate for the donor to receive compensation for the direct costs as well as the indirect costs within a regulated framework. These women have numerous doctors' appointments, daily injections, a painful egg retrieval, blood draws, and they do this in spite of the small, although real risks of ovarian hyperstimulation. I know this because I have done it numerous times.

    I was comforted to know that our donor would be compensated for the decision to provide this service, her generosity, and her time. Asking these women to do this without compensation is unacceptable. I would not turn my work life and my personal life upside down for no benefit to my family or to my spouse. As well as giving a wonderful gift, these women have lives and families of their own and they should receive some monetary compensation for their time, dedication, and generosity.

    If Bill C-13 passes as it is currently, without allowing compensation for indirect costs, there would be few egg donors available, and understandably so. We would be forced to look to the U.S., where their egg donor programs are numerous as well as costly, and it would then be an option only for Canadians who would be financially capable of pursuing this.

    Being infertile already poses many personal and societal stigmas and negativities. If Bill C-13 passes as it is, infertile couples will have to endure the humiliation of putting themselves in the vulnerable position of privately soliciting and compensating donors outside the protection of the law and without the medical knowledge to choose appropriately. The donors and the recipient couples would be placed at undue risk and possible harm.

    I am here today because I have been put in a position where I required an egg donor to help to start my family. I would not want other women not to have the same opportunity that I had because of Bill C-13.

    Also, as I stated earlier, I work with women with gynecological cancers who sometimes require egg donors or surrogates. I could not, in good conscience, sit back and see that after enduring a cancer such as ovarian or uterine cancer they would be unable to start a family of their own because of Bill C-13 in its current version.

    Thank you.

¿  +-(0925)  

+-

    The Chair: Thank you, Ms. Constantine.

    We have a couple now, Dara Roth and Peter Edney.

    I don't know which of you is going to present, but whoever it is, would you please begin.

+-

    Ms. Dara Roth Edney: We're actually both going to present. I'm going to start, and then Peter will conclude.

    Good morning, my name is Dara and this is my husband Peter. We were married five years ago when I was 28, and after a year of trying unsuccessfully to get pregnant, we saw a fertility specialist. After a battery of painful and invasive tests and numerous unsuccessful intrauterine inseminations, our fertility doctor recommended in vitro fertilization.

    The pain of daily injections and the agony of egg retrieval were nothing compared to the devastation we felt upon hearing time after time that each IVF attempt had failed. Finally, a series of endometrial biopsies revealed that I was missing key proteins required to become pregnant. I had surgery and tried medications, but the abnormality in my uterine lining could not be repaired. I will never be able to get pregnant.

    It has been four years since Peter and I started trying to have a baby, and our arms are still empty. We have seen my younger sister give birth to two daughters, and Peter's brother father a son. We rarely see friends, as it is too painful to watch them with their growing families. I have had to hold back tears as people I love, voices breaking, say they are sorry to tell me the news of their own pregnancies. We have gone from enjoying holiday celebrations to avoiding them.

    As a social worker, I used to enjoy working with the elderly, but their concerned prodding about when I was going to have children became too painful. I have watched my husband's easy smile turn to tears, and sadness touch every part of our lives. Yet throughout we have managed to maintain a sense of humour, our love for one another, and our determination to have children.

    Unfortunately, we do not have any friends or family able to carry a baby for us. Our only option is to find a trustworthy stranger. Through the invaluable assistance of an intermediary, along with the counsel of our fertility doctor, a social worker, and our attorney, we have found such a person. She is a stay-at-home mother with two children and a well-paid professional husband, and lives in rural Ontario.

    Our surrogate's motivations are not financial; however, it is evident that she would not do this without compensation, nor should she. But please make no mistake, we are not paying her for our baby. We are compensating her for the time she is committing to us; for the time she must spend away from her family; for the inconvenience and the pain of the medication she must take; for the risks she is receiving in pregnancy and labour; and for the opportunities she may lose and the restrictions she will be under, due to a pregnancy.

    We will compensate her for these indirect costs as well as direct receiptable costs, whether this entire process results in a baby or not, because only with reasonable compensation can we ensure an equitable and mutually satisfactory legal agreement that addresses her and our concerns, and ensures that we are all making informed decisions.

+-

    Mr. Peter Edney: We believe this committee has the opportunity to assist infertile Canadians in building their families, while protecting all parties involved. There should be boundaries around the practice of gestational surrogacy, but not boundaries that prevent people from having children.

    Intended parents must be permitted to reimburse gestational carriers for both direct and indirect expenses. Couples' gestational carriers must have the option of hiring intermediaries. Most people have no idea of the process of surrogacy; we certainly didn't. Agencies are needed to help educate, inform, and act as advocates. Without intermediaries, all sides may be ill-prepared and uninformed about the choices they're making, and no one will have access to information, support, or mediation.

    If Bill C-13 passes as currently drafted, the consequences will have a devastating effect on an increasingly large number of infertile couples wishing to do no more than build their own families. Without reasonable compensation, the pool of surrogates will be so reduced that most couples will have no chance of having a family in this way.

    Of the women willing to be gestational surrogates through one agency over the last ten years, only one was willing to do this for free. With few options available, the pressure on female family and friends able to carry a child will be excessive. These women may not be making an informed choice, but rather giving in to a sense of duty and family pressure.

    Without reasonable compensation, those who can afford to go elsewhere will, and will risk becoming vulnerable to programs that are not properly managed, with carriers who may not be fully screened. Babies born to such surrogates may face additional health issues, which will increase medical costs in Canada in the long term.

    Couples unable to go elsewhere will remain in Canada and look for surrogates willing to proceed and accept payments illegally. Pertinent medical information about the carrier may not be revealed, as intended parents will have to lie to doctors about the relationship. Without the reimbursement of real costs, an accurate legal contract cannot be drawn up, thus leaving both sides vulnerable.

    There are many stories like ours. A man I worked with and his wife lost their baby in the eighth month of pregnancy, and then, to save her life, the wife had to have a hysterectomy. A woman Dara knows is unable to carry a child, due to having had a kidney transplant. Although we and the people I've just mentioned need the assistance of gestational carriers, not egg or sperm donors, we feel strongly the issue of compensation applies equally to gamete donors.

    This bill will not prevent people from working with and compensating gestational carriers and donors; rather, it will create an exploitive environment where comprehensive screening and evaluation of surrogates and donors will be circumvented and legal counsel will be unavailable. Infertile couples, potential carriers, and donors will be left to manage on their own without any direction or protection.

¿  +-(0930)  

    We're asking that you protect Canadians and facilitate the building of families by regulating and not prohibiting reimbursement of true costs incurred by gestational carriers and donors as well as reasonable compensation for qualified intermediaries and professionals who are acting on our behalf.

    Thank you.

+-

    The Chair: Thank you, Mr. and Mrs. Edney.

    We will move now to Mr. Hunter.

+-

    Mr. Alex Hunter: Thank you for your time; I appreciate it.

    My name is Alex Hunter, and my wife's name is Sylvia. We've been together for ten years, married for five. I met my wife in university, when she was 18 and I was 23.

    We started dating at that point, and within three years my wife had her first cancer surgery to remove one of her ovaries and a cyst that was attached. Within five years total she's had two cancer surgeries, the removal of both of her ovaries, and six months' worth of chemotherapy.

    We really had no choice but to look for an egg donor. We spent two-plus years trying on our own before the second ovary was taken, but it was not to be. We ended up finding an egg donor, luckily. The first attempt did not work. We didn't give up hope, though. We tried again and we had a baby three and a half months ago. This is Shaina. I don't know if you can see her, but she's 11 days old in this picture. She's the love of our lives, and I can't imagine having my life without her.

    I'm just one person. I know that if this bill passes, we may not have any other children to give a brother or sister to Shaina. I know there are other people out there, countless people who are in the same situation, who have just been given a really bad blow. We didn't give up and we would hope that you, in your position of power, would take the opportunity to make the changes everyone here has suggested. Honestly, there are so many other people who really want a family but can't have one, and we just want the same rights as everyone else has.

    For example, a normal couple has the right to adopt or have a child. We don't. If this bill passes, what you're saying to us is that we have no choice but to adopt. This is not necessarily a bad thing, it's just that we want to have a family with connections to ours. I'm the last of my family in my line to carry my name. I just really hope you consider some of these changes and give everyone else an opportunity to feel the joy we feel.

    Thank you.

¿  +-(0935)  

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    The Chair: Thank you very much, Mr. Hunter.

    Our next witness is Ms. Allen.

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    Ms. Diane Allen: Both I and Phyllis Creighton are from the Infertility Network. We're a registered charity. We're totally independent of any clinic; doctor; and pharmaceutical, professional, or community organization. The members on our board include representation from across Canada--patients, families, and adults conceived through assisted human reproduction, or AHR for short. All of our board members as well as myself have a personal connection to infertility, most of us as patients. Some have built their families through AHR, including sperm and egg donation, and some via adoption. None is employed in the AHR field, and neither our board members nor our organization have anything to gain financially from any legislation that has passed.

    We feel that we have a unique perspective to offer because of our extensive experience over the past 12 years working at the grassroots level. We've organized 65 educational seminars and several conferences; provided information kits, taped seminars, newsletters, telephone support, and referral to thousands of people; consulted on many occasions with Health Canada regarding the need for legislation and regulation; and developed an extensive network of contacts with other support groups, professionals, agencies, etc., both in Canada and abroad.

    In June we organized the first ever international conference on building families through donor conception. This forum on the personal, professional, and public policy issues brought together 36 presenters from Australia, Canada, Ireland, New Zealand, the United Kingdom, and the United States, including adult donor offspring, parents, sperm donors, adoptees, birth parents, adoptive parents, counsellors, ethicists, professors of law and social work, a member of the Ministry of Health, and an infertility specialist. I've brought you a video and a report on the conference, and I'm sure you'll find the personal stories fascinating and deeply moving. I hope you will give serious consideration to the recommendations put forth.

    Our work has been accomplished over the years by the goodwill and intentions of a handful of committed volunteers operating on a tiny budget. We've never been able to secure government funding, nor much in the way of financial contributions from the medical community. In fact, we've come under considerable pressure, probably because of our support for legislation and regulation and reform of the donor system and our opposition to surrogacy, everything from simply not passing on our materials to patients to slander against a board member to overt threats and even attempts to get our few funders to drop their support in favour of an organization that projects a more industry-friendly tone to government and the media.

    Over the past two years your committee has heard from many experts and individuals as to why egg and sperm donors must be identifiable as well as recruited on an altruistic basis, instead of the current system of anonymous, paid donors, who should more properly be called vendors because they are in reality selling their sperm and eggs. You've also heard why it would be completely unacceptable to have parallel donor systems, one anonymous and the other identifiable, thereby creating two classes of people: one that has access to their genetic origins and another that does not. You've heard why surrogacy should be banned and why human eggs, sperm, and embryos should not be bought and sold. You've also heard about the need for counselling and informed consent and for the government to maintain centralized information registries.

    The goal of our organization has always been to provide the information and support people need to make truly informed choices about their lives. We are here before you simply out of concern for patients and the children they have or hope to have. We certainly don't claim to speak for all infertility patients, nor should any other group or professional, because opinion is divided, as you can see here today.

    Often when you're dealing with your own infertility it can all seem so personal. It can be hard to think beyond getting a baby. It's common to feel that no one else should have any say over what you can do and to view proposed legislation as limiting your family-building options.

¿  +-(0940)  

    However, based on our contact with thousands of patients, families and offspring over the years via phone, e-mail, seminars of workers, plus an extensive survey, I can tell you that most are unhappy with the current lack of legislation and regulation, and many do in fact support the ideas articulated in Bill C-13. I refer especially to those who already have a child through treatment, or whose lives have been informed by adoption, or who are themselves adult donor offspring. They want to see Bill C-13 amended to follow the standing committee recommendation that all future donors be identifiable to offspring. They also want all information on past donors stored in a central registry, safe from loss or destruction, and a voluntary registry set up to facilitate contact between offspring and donors who seek it.

    Assisted human reproduction may appear on the surface to be about the medical treatment of infertility--just helping people have families who can't do it in the normal way--but it is, in reality, about far more. First and foremost, it is about people's lives; fertility patients, donors, surrogates and, most importantly, those who will be born, for they are the ones who will be the most directly affected and for the longest period of time. That is why, as Bill C-13 states in paragraph 2(b), under “Principles”:

(b) the health and well-being of children born through the application of these technologies must be given priority in all decisions respecting their use;

    It is essential, however, to think of those conceived not only as children but as the adults they will become, living 80 years or more with the decisions made by others to which they had no input, decisions that, especially in the case of third-party reproduction, will impact their children, their children's children and so on. In fact, the child's interests are separate from and may even conflict with the interests of the adults involved. Where there is a real or possible conflict of interest, it is essential that the interests of the adults--the patient, the donor, the surrogate, the doctor--are not allowed to take precedence over the needs and rights of the person who will be born.

    AHR is a reflection of the values we hold as Canadian society. For more than two decades, since the birth of the first IVF baby in 1978, there have been calls for public discussion, policy development, legislation and regulation from groups representing patients, women, religions, the disabled, legal and medical professionals, academics, federal, provincial and territorial working groups, etc. There was a $28 million four-year royal commission that travelled from coast to coast carrying out public surveys, projects, and analyses in the social sciences, ethics, law, and medicine, hearing from some 40,000 people in the process. The final report, issued nine years ago this month, has unfortunately languished on government shelves ever since.

    There have also been ongoing consultations by Health Canada with a wide range of stakeholder groups, and unfortunately, promises made and broken by five or six successive ministers of health to bring in AHR legislation and regulation has thereby left Canada as almost the only western industrialized nation to have none.

    The Infertility Network is very pleased that Bill C-13 is moving forward and we hope to see it pass, albeit with amendments in a few key areas to bring it into line with the excellent recommendations in the November 2001 report of the standing committee. In particular, provisions under clause 12, “Reimbursement of expenditures”, need to be very tightly controlled or they will simply provide a means to circumvent the ban on payment to donors and surrogates. Anyone who doubts this should spend some time on the Internet discussion boards, where there is a great deal of talk about how to do that.

    Please amend subclause 18(3), about the disclosure to recipients of reproductive material, to require that all donors be identifiable to offspring. This is in keeping with the practice in Switzerland, New Zealand, Austria, Holland, and the state of Victoria, Australia, and is about to be enacted in several other Australian states. The U.K. is also giving every indication of following suit in recognition that this will accord donor offspring the same rights as adoptees and that to continue to deny this information to offspring is a violation of their human rights. It's also in keeping with the reforms in Canadian adoption laws. B.C. already has completely open records and Newfoundland and Ontario will soon follow suit.

¿  +-(0945)  

    We also encourage you to amend clause 9, concerning gametes from a minor, so that donors are at least 25 and have had children themselves, in order that they can fully comprehend the lifelong implications.

    Finally, we would like to see a ban on the donation or adoption of embryos--

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    The Chair: Excuse me, Ms. Allen, you're well over time. Perhaps you could submit your paper so we can read the tail end of it, but for now I must move on. Thank you very much.

    Ladies and gentlemen in Toronto, we'll now move to the question-and-answer period with our first panel of witnesses.

    Mr. Merrifield of the Canadian Alliance will begin.

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    Mr. Rob Merrifield (Yellowhead, Canadian Alliance): Thank you for your presentations. Actually, I'm sorry I couldn't hear the end of the last presenter there.

    I am interested in the idea that we are so stuck on our genetic follow-through in our children. We have in Canada, witnesses have told us, hundreds of embryos in storage, you might say, with the sole purpose of becoming adults. Has that ever been an option for any of the parents who have tried human reproduction by ovum donations, and would it be an option you would have considered, or did you consider it? Have you anything you could share with regard to that?

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    Mr. Alex Hunter: I can.

    After the second cancer surgery my wife had, she had a small amount of her ovum saved and frozen in the hopes that one day there would be a procedure presented to us where we could use our own ovum to get pregnant, but right now there is no such technique. It hasn't been done yet, basically.

¿  +-(0950)  

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    The Chair: May I interrupt? I'm very sorry. We had a little bit of problem with our hearing at this end. Could you begin that answer again for us, please?

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    Mr. Alex Hunter: Sure. Can you hear me okay?

    The Chair: That's better.

    Mr. Alex Hunter: During my wife's second surgery, when she had her second ovary removed, a small amount of healthy tissue was saved. It has been frozen; however, no technique exists yet to use that ovum to get pregnant, so until there is a technique I don't think we can use our own ovum. It's possible that others can, but not us. We would like it if one day that happens, so we can have genetically “our own child”, but until that happens, the only option we have is donation from someone else.

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    Mr. Rob Merrifield: I think you missed the intent of the question. Maybe I was not quite clear enough.

    We have, in storage, hundreds of fertilized embryos in Canada. Was implanting one of those embryos into your wife and having it grow into a healthy baby an option you pursued, and is it one you would see as a viable option for adoption if you could not get a surrogate to deal with the problems?

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    Ms. Kate Acs: Your question very much mirrors the question people often ask us, namely, why don't you just adopt?

    For many of us it's not just a question of hanging onto our genetics, but particularly for me as a woman it was the opportunity to go through a pregnancy. The reality is that I don't think there are thousands of embryos in storage. The reality is that many of the people who have gone through infertility treatment have embryos in storage they're planning to use themselves until their families are complete. For example, I currently have five embryos in storage in hopes that I can create another child. My intention is to use up those five embryos when I'm ready for the next child, so my expectation is that none of those will be left over.

    The reality is that a lot of couples hang onto their embryos because they're expecting to have to use them. Many women produce, let's say, 10 to 15 embryos, and they try to have frozen cycles, where those embryos are used to create subsequent children, only to see them fail. In fact, I don't think there are many embryos languishing around waiting to be adopted.

    The other issue is that embryos are in some respects just like children in our adoption system. Parents of the embryos have to make those embryos available for adoption. Just as in our society today, where mothers are unwilling to give up their children for adoption, a lot of parents are unwilling to give up their embryos for adoption.

    Frankly, if it were an option available to me, yes, I would be happy to use it because I would like to experience a pregnancy again.

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    Mr. Rob Merrifield: Thank you for your answer, but I'm not sure that you really addressed the issue. Our information is that there are hundreds of embryos that are frozen. Now, you may be right about the intent, that the parents would like to hang on to them or a significant number of them. But the most controversial part of this piece of legislation is what do we do with those supposedly leftover embryos? I don't like referring to any human subject as a leftover, but nonetheless, you've said that they're not there.

    I guess my question was, did any of you on the panel pursue that as an option? Did you find that it was not an option because there were not enough, as you have just said, or was it not an option that you would even pursue? Another good question is, was it explained? Was it something that was given to you as an option?

¿  +-(0955)  

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    Ms. Kate Acs: It was not given as an option.

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    Mr. Alex Hunter: It was not. This is the first I've heard of it, actually.

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    Ms. Diane Allen: I'd like to add something to that. You may not be aware that the adoption community is very opposed to embryo adoption. There are a lot of losses in adoption, but we need adoption because we have circumstances where we have existing children without parents to care for them. In embryo adoption you have the deliberate creation of that loss. Instead of the interests of all the adults involved being focused on the welfare of the child, in fact what's really happening is that you have a process in place to create a child for someone who wants it.

    We also have no evidence about the long-term implications for all involved. You're talking about children being raised completely separately from their genetic parents, separately from their full siblings. What does that mean? We already know that there are a lot of losses, as I say, in conventional adoption, so you should be aware that those who come to this discussion with a lot of experience in the adoption community--adoptees, birth parents, some adoption social workers--are really opposed to the idea of embryo adoption.

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    Mrs. Brenda Chamberlain: Madam Chairman, I don't understand what she means when she says that there are a lot of losses in adoption. What does that mean? Does anybody understand that? I think that's key.

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    The Chair: Perhaps you could explain that. She probably means family breakdown or breakdown of the adoption, but I'm not sure.

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    Ms. Diane Allen: Actually I wasn't referring so much to the family breakdown. There are losses on all sides. If you listen, if you have contact with the adoption community as we have over the years, you realize that adoptees experience a loss. They talk about growing up with a sense of genealogical bewilderment. And I'm not talking about people who grow up in unhappy homes.

    I've just been at a weekend conference on adoption and heard these same themes reiterated. And certainly birth parents suffer a great loss. And for the people who are the adoptive parents, they too have suffered loss. Usually they've come to adoption after infertility. But there have to be really good reasons for doing this. If the goal really is to create children for parents, then why not pay birth mothers in adoptions to give up their children? Why not stop welfare for single moms, or ban abortion, or ban birth control? Surely this needs to be about the welfare, first and foremost, of the person whose life was created.

    You may also be interested to know that there are many adult donor offspring, or at least there are some I'm aware of, who would like to see the practice ended completely. Most simply want donors to be identifiable and records to be open.

    So setting up a practice of embryo adoption or donation is really problematic when we don't even yet have the practice of sperm and egg donation working well enough to meet the needs of the person it affects the most, the offspring.

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    Ms. Kate Acs: May I add something to that?

    I have to disagree with Diane on this point. And I take to heart what Mr. Merrifield is saying. I think embryo adoption is an avenue that should be explored and I think it should be regulated by the government. My preference, of course, would be to see that existing embryos be given an opportunity to become children. And I think there are many infertile couples, myself included, who would be happy to--for want of a better word--adopt an embryo and try to use that to conceive a pregnancy.

    I think part of the problem is that there is not an oversupply of embryos available to be adopted, for the reasons I mentioned, that most people do hang on to them in the hopes that they will be able to use them themselves to create a family. But if the committee is interested in entertaining some kind of a scheme in the future where surplus embryos would be given to people in the infertile community as a first choice, I think that's not a bad option to present to us.

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    The Chair: I have to announce that Mr. Merrifield's time is over. So we'll move on to a second questioner and that will be Dr. Bennett.

    Dr. Bennett, five minutes.

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    Ms. Carolyn Bennett (St. Paul's, Lib.): Thank you very much.

    Thank you all for being here. I want to thank all of you for telling your stories, which I think were hugely poignant.

    My question is for Diane Allen. One of my concerns as a family physician is that we not hold this community to a higher standard than we hold the community of patients I've had who chose not to declare who the father of their child was on childbirth or who perhaps put down somebody else. There's the situation of many children who look a lot like the next door neighbour, which we don't actually deal with in our society.

    If you were going to regulate this, would the people who had had an egg donor, IVF, or sperm donation get a letter from the government at age 18 telling them that this is how they were born and this is who their parent is? The child may not have even been told that they were conceived in a different way.

    As a family doctor, I was asked to go to the morgue one morning to identify one of my patients, who was the birth mother of someone who came to find her two weeks before. I don't believe it was good for the birth child, who thought she was doing the right thing, to find that her mother was a street person, and my patient was not particularly able to deal with the news of this wonderful, upstanding nurse who happened to be her daughter finding her in her condition. I pulled that drawer out and identified her.

    I think that when it comes to the right of the children to know who their parents are, we have to seriously look at what the role of government is in all of this and at the so-called benefit of open adoption, when life is very complicated. I'm wondering why we would hold this community to a higher standard than we do the people who get pregnant in the back seat of a car and never actually have to say who the father of that child is. I feel very bad that we aren't taking into consideration the whole of our society, but rather only looking at the rights of the child.

À  +-(1000)  

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    The Chair: Ms. Allen.

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    Ms. Diane Allen: That's a lot to answer. What you described, somebody getting pregnant in the back seat of a car, is a very different situation. We're talking about a very deliberate conception that somebody has gone through in order to have a child.

    I think we need to have the same sort of counselling process in place as we have for adoption. Today any couple going through adoption will go through an extensive home study, which isn't to look at the dust under your bed. It's to explore the issues in raising a child who joins your family through adoption. Adoptive parents are expected to have in place a plan for how they will tell their child about the adoption and how they will support their child in terms of connections with their culture and background if they choose to search.

    Lying to children about their origins and deceiving them about their medical and genetic background, especially in a day when.... Our genetics really determine our health. It's unconscionable to consider deliberately doing that.

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    Ms. Kate Acs: May I answer that as well? I just want to address some of the points Diane Allen made.

    When she talks about the fact that this is a deliberate choice, I think that's actually a good choice of words. I think what distinguishes people who go through infertility from people who get pregnant in the back seat of the car is that in fact we are very thoughtful parents. This is not a case of our just getting pregnant in the back seat of the car. We spend years thinking about the well-being of the children who are conceived through the technologies we undergo.

    I think most of us have absolutely no intention of lying about the origin of the children conceived. We are not going to withhold medical information. In terms of many children not having access to their genetic background, the reality is that there are many average Canadians who don't have access to their genetic background. The children who come from international adoption do not have access to their genetic background. Many of us who are immigrants to this country leave behind medical files, and we don't really know much, beyond our parents and possibly our grandparents, about what our medical history is.

    I think the reality is that just because you happen to have a certain genetic background, it doesn't necessarily mean that's going to be your medical destiny. I think the reality is that things will happen in your health that you cannot preordain simply by genetics.

À  +-(1005)  

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    The Chair: Dr. Bennett, you're at over six minutes now. Let us go quickly to Mr. Lunney.

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    Mr. James Lunney: Thank you very much, Madam Chair.

    I wanted to pick up on the end of the presentation by Diane Allen. You raised a couple of issues. One was about clause 9, about obtaining sperm from a donor under age 18. I wasn't quite sure I got your point, because it seems the provision would already prevent anyone under 18 from giving a donation. Finally, you made a remark about a ban on the sale of embryos.

    Would you clarify those points for us, please?

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    Ms. Diane Allen: What I actually said was that donors should be older than 18, that they should be 25 and preferably have children themselves. This is a very complex decision. I can tell you that I frequently get phone calls from young women wanting to become egg donors, except I think we need to name what's actually going on here.

    In our society, “donor” has very positive terms. We donate blood; we donate organs; we donate our time. But in this case the people who are calling to inquire about being donors are also asking how much money they can make.

    But my point really was that at 18 you cannot understand what it is to be the genetic parent of someone. Donors need to understand that they have, not a financial responsibility, but certainly some sort of moral responsibility to the life that's going to be created.

    As far as the issue of embryo donations is concerned, the point I made earlier was nothing is known about the long-term implications for all involved. This system needs to work. It's not about creating babies; it's about people's lives. As I said before, there are people who are going to live with these decisions forever. It has to work for them.

    I can send you this, but you might be interested in comments from some donor offspring on the topic of embryo donation: “We belong in our biological families. We're not “spare parts” to be bought, sold or given away”; “Adopting a “left-over” or “spare” embryo is like shopping for left-over merchandise in the sales. Human reproductive tissue (and, thus, parentage) is not something to be bought, sold, traded or given as a “gift.” These are comments from adults who are themselves donor offspring.

    If this legislation were on some other issue--if it were on aboriginal issues, for example--you would be asking aboriginals: how do you feel about this? How can we make this system work for you? I think it's really critical that you hear from people who are living, who are adult donor offspring, to hear what their views are, and to hear how the system needs to be changed to work for them, because they're the ones who are the most impacted.

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    Ms. Dara Roth Edney: May I also make a comment on that, please?

    First of all, I would be shocked if anybody in this room were suggesting that there be no regulations. I think all of us have said we are very much for regulation. Certainly, the idea of having somebody who is under 18 donating sperm or eggs or becoming a surrogate is not what any of us are suggesting. We're certainly suggesting that there need to be regulations so that the people who are making decisions to be donors or surrogates will be screened psychologically and medically. But I think it's also important to note and ask about how many of these children you are talking about—these “adult children” Diane is mentioning, those who were born through the donation of gametes—would actually have been born if this legislation had been in place.

    I'm certainly not suggesting that those issues don't exist for those particular individuals. The truth is, however, that if the legislation passes as it currently is drafted, then the people who are interested in being donors or in being surrogates right now simply won't be. In terms of how my child or Peter's child might feel about having been born through a surrogate, that actually won't be an issue because we won't have a child to have that conversation with. I think it's really important to talk about that and to think about it when you're talking about how these children born through these technologies are going to feel when they're older. Recognize that a good many of them won't be born at all.

À  +-(1010)  

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    The Chair: Thank you, Dr. Lunney.

    Mr. Szabo.

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

    I'd like to thank all of the witnesses for sharing their views on an important piece of legislation. I just have one question that the witnesses may be able to help us with. The legislation will be establishing an agency. One of its responsibilities will be to license fertility clinics. I wonder if the witnesses could give us the benefit of their experience with infertility clinics, with regard to not so much what they did right, but maybe things that they could do better.

    Was the consent process true, full, and plain to you? Did you fully understand the process? Were there situations in which you preferred not to deal with a fertility clinic because of the way one clinic approached the situation differently from another that made you feel more comfortable? I think it's extremely important that we have your experience in terms of your interactions with infertility clinics.

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    Ms. Dara Roth Edney: I'll take that one first.

    We've been with our fertility clinic for four years, and I think they do a really wonderful job. They slowly took us through all the steps of trying the in utero insemination before the IVF. We certainly weren't pushed into anything. We were told about all the medications, all the steps. They had sessions, and we were very well informed.

    When it came time to discuss surrogacy, our doctor talked to us about it thoroughly. He insisted that we see a social worker. Right at the beginning, we actually spent many hours with a social worker who counselled us, and we discussed what this meant to us and how this could impact us. When we found somebody—it was somebody who we found through an intermediary—she also had to see a social worker. Her husband saw the social worker as well. They both had many hours to talk about it and to really make sure they were making an informed choice.

    We had to go through medical screening to make sure it would be helpful for us and also that there was no danger to her. They did a really wonderful job making sure that, on both sides, we were all making informed choices that were in our best interests, both for us and for her.

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    Mr. Peter Edney: In addition to that, I'd have to say the agency we dealt with and the lawyer that we were dealing with helped to guide us through issues that we never would have considered. They were critical to this whole process for us.

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    Ms. Diane Allen: There are two points that I'd like to make about the clinics.

    Across Canada, there's really unequal access to treatment. People who live in the Toronto area are incredibly fortunate because they have so much choice, but that's not true elsewhere. In many cases people need to travel, so on top of their considerable expenses for treatment they also have travel expenses.

À  +-(1015)  

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    Ms. Dara Roth Edney: That's the case with all health care, though, Diane. All health care across Canada functions that way, unfortunately.

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    Ms. Diane Allen: Well, it is really problematic.

    The other thing is a question that we're asked the most often, and one I'm absolutely unable to answer. People want to know where they should go, who has the best success rate, or whatever. At the moment, that information is not available here in the way it is in the U.S. and in the U.K., where the statistics are available by clinic. Here, patients need to know what questions to ask and need to believe what they are being told, because the statistics that are released are aggregate statistics for all of the Canadian clinics combined and are not verified. I think patients would be much better served if they could have access to that kind of information that they knew they could rely on.

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    Ms. Dara Roth Edney: Actually, many clinics have that information, Diane. They've done research. You can ask for that information, and they'll give it to you. It's not based on all the clinics; it's based on individual clinics. We've asked for it, and we've received that information.

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    Ms. Kate Acs: Can I also answer that question?

    I do believe there is a need for improvement in terms of how clinics provide success rates to their clients. I think this area can really benefit from standardization, much like exists in the United States.

    In terms of room for improvement, one of the areas to which I would like to see this committee pay some attention is the fact that most of these clinics need to operate outside of the realm of the Canada Health Act. In fact, if you are so concerned about the conflict of commercialization, I wonder why you aren't concerned about the fact that infertility treatment is not covered under the Canada Health Act, when infertility is in fact seen as a medical illness.

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    Ms. Diane Allen: Actually, in keeping with what Kate just said, we would really like to have seen the government act on the recommendation of the royal commission, that all reproductive and genetic technologies would take place in a non-profit setting. What we have instead is really a multi-million-dollar field of private medicine. Surveys show that Canadians don't want private medicine, yet that's largely what we have when it comes to infertility treatment.

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    Ms. Kate Acs: Given that this committee is going to start dealing with the Romanow report, there's a great deal of room for opening up our health care system and starting to examine the types of criteria that the provinces use to fund certain types of medical procedures. I would really ask you, on behalf of the thousands of Canadians dealing with infertility, to take a close look at why our procedures are not covered under the Canada Health Act.

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    The Chair: Thank you, Mr. Szabo.

    Seeing no other names on the list, I will thank this—

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    Ms. Judy Wasylycia-Leis: [Editor's Note: Inaudible]

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    The Chair: We have two more panels coming, you know. Did you want to ask these people a question?

    I'm sorry. I didn't have more names on the list, but all of a sudden I do.

    Mrs. Wasylycia-Leis, followed by Mrs. Chamberlain.

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    Ms. Judy Wasylycia-Leis: Thank you, Madam Chairperson.

    The last point that was made has to be considered by our committee, and that is the need to fight as a committee to convince the federal government to play a leadership role with respect to including this whole area as part of the Canada Health Act and to ensure that the principles that apply now in other areas are applied here.

    I would like to raise the broad issue of commercialization, because it seems to me that we should be fighting and working to move this whole area into the non-profit sector, as opposed to allowing for a marketplace environment. I think it's important to note that Parliament can't deal with every individual case. It can't operate on the basis of anecdote, but must put in place broad policy guidelines, regulations, and an ethical framework. It seems to me that the most fundamental part of that is that we approach this from the point of view of non-commercialization.

    I think all of us were shocked a couple of weeks ago to read in the paper about a Toronto executive who needed a kidney and went to the States with his caregiver to have the procedure done. I think it pointed out for all of us the possibility that, when you go the route of commercialization, people who are vulnerable are taken advantage of, people are ripped off, and there are no protections in terms of the building blocks of life.

    So, generally, would it not make sense for us to operate on the basis of non-commercialization throughout this whole area of reproductive technologies, and to try as hard as possible to maintain the notion of compassionate giving, whether we're talking about organs, blood, embryos, eggs, sperm, or any other aspects of reproductive technologies?

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    Ms. Dara Roth Edney: I don't think “commercialization” is even the right term, because, as I said during our presentation, we're not buying a baby. All of us are talking about the effort, the time, the pain, and all of the things that go into being able to buy eggs and being able to carry a baby. I actually see it as the exact opposite. I truly believe that, without that kind of compensation, that's when people are going to be exploited.

    There are people in our lives who feel they have no other choice, that there's nobody else they could find. For example, there is somebody in my life who has made it really clear that she would not be comfortable carrying a baby for us, but she would consider it if there was nobody else that we could turn to. To me, that is completely exploitive. This is not a person in my life who is prepared to do this, but she sees the pain we're in and would consider it. To me, that is wrong.

    What's right is having somebody who is well informed; who has been screened; who has carefully thought this through; who has support around her; who is making a decision to do this for somebody else; and who is being compensated for it. To me, that isn't exploitive at all.

    To mandate that people have separate legal counsel to make sure their considerations are being looked after; to make sure they have mandatory medical and psychological screening in order to make sure they are not doing anything that would endanger their physical or emotional health; to make sure people are being matched together by intermediaries who know what they're doing in terms of that.... We can make sure regulations are put in place to make sure that people who aren't making informed decisions or who aren't going into this in the right state of mind are not the appropriate people to be doing so. With those things in place, the chance of exploitation is incredibly less than it would be without the compensation.

À  +-(1020)  

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    Ms. Tanya Constantine: I would just like to add that I agree with you in terms of making it.... Right now, in going through infertility treatment, couples are spending thousands and thousands of dollars because it is not covered by anything offered through the government. What that results in is the fact that couples' families are only of a certain number, because couples will no longer be able to afford a certain amount of children. And you're right, the infertility clinics are private and you are paying their fees for their procedures. That is completely separate from the compensation issue for the surrogate or the ovum donor.

    I do agree that all of us are going through this because we have medical problems that do not allow us to have children in the normal way. I would encourage you to try to look into some kind of program around that, because right now couples are essentially on their own.

    I am involved with some women in the U.S. who are spending inordinate amounts of money, but there's also quicker treatment in the U.S. That's why Canadians, as you noted in relation to the kidney example, are going to the U.S.

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    Ms. Kate Acs: Can I also speak on this?

    I completely agree with the government's desire to control the potential for commercialization in this field. None of us in this room who have used donors or surrogates in any way wants to exploit other women in our pursuit to have families. We have great care and grave concerns for the women who have helped us conceive our children, but I think you have to be realistic.

    You have to take a look at what has happened in other jurisdictions like the United Kingdom, Australia, and Israel, where donors were prohibited and there was a significant drop in supply. When that happens, what the government has to be realistically prepared for is the fact that people who can afford to will go to jurisdictions where the option is available. The people who can't will be driven underground. You're going to develop a kind of underground marketplace in which the government will have no opportunity to regulate and put caps on some kind of minimum or maximum level of compensation.

    Finally, I feel that if you are in fact committed to preventing commercialization, you should please think about an alternative way to create a supply of gametes. Don't just create a prohibition. Put in place some kind of scheme that actually helps us. For example, why not undertake a public relations campaign, through Health Canada, to explain to Canadians what people with infertility go through and to actually try to find Canadians who would be willing, for altruistic reasons and without pay, to donate their gametes or act as surrogates? Do not just prohibit this. Take a look at what you can actually do to help.

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    The Chair: Excuse for coming in on answers, Ms. Acs, but Mrs. Wasylycia-Leis' time is up. I have to move to Mrs. Chamberlain.

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    Mrs. Brenda Chamberlain: I can help you out, Madam Chairman. Actually, Ms. Wasylycia-Leis asked a lot of what I wanted to ask.

    If we did move towards no compensation for moms who are providing this service, hypothetically, would you go underground? Would you do it at all costs?

    Witnesses: Yes.

À  +-(1025)  

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    Ms. Dara Roth Edney: I think also when you're talking about surrogacy, that's not something that takes place over a couple of months, when you choose this donation, where there's a few months of medication and you can get a gamete. With surrogacy you're talking about a commitment that a woman has to give to us for almost a year in terms of pre-treatment and then in terms of pregnancy.

    The idea that we would want to exploit somebody is preposterous, because it's in our best interest that the woman who's carrying our baby is healthy and happy. So I understand people would have that concern, certainly, but when you look at that in terms of our needing to trust somebody to take care of what is going to become our child, it's in our best interest that she be doing this because she wants to and that she's healthy. We certainly believe we're not going to find somebody if there's no compensation.

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    The Chair: Thank you, Mrs. Chamberlain.

    On behalf of the committee, I want to thank very much those people who were here for the first panel and started about 9:10 a.m.

    Ms. Acs, Ms. Constantine, Mr. and Mrs. Edney, Mr. Hunter, Ms. Allen, thank you very much.

    Witnesses: Thank you for your time.

    The Chair: We'll take a short break at this end to allow the next group to come forward, which includes the Kraemers, Ms. MacCallum, Mr. Simpson, and Ms. Prince.

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    Ms. Judy Wasylycia-Leis: While we're having a break to change for the next group, could we have a brief discussion on our plans for hearings on the Romanow commission? I think it makes sense for us, in advance of Thursday, to have some idea of how we intend to fulfill our responsibilities under the motion and to give some suggestions now for how that could be executed.

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    The Chair: Normally we have three panels. This afternoon, starting at 3:30 p.m., we have only one panel.

    I had asked the clerk to bring the plan, at least around the names of witnesses and at which hours we would meet for the Romanow report. So if you don't mind, it would seem to me logical that as that plan is put in front of you this afternoon, we could then move on to how we're going to handle the Romanow report.

    Ms. Judy Wasylycia-Leis: That's okay.

    The Chair: I think we have enough work to do this morning and focussing on this is probably the best thing. This afternoon it's Alan Bernstein and stem cells.

    So if you need to take a little break, now is the moment.

À  +-(1028)  


À  +-(1034)  

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    The Chair: Order, ladies and gentlemen, please.

    We will now hear from another panel consisting of Anita MacCallum, Ingo and Jennifer Kraemer, Alan Simpson, Janet Prince, and Jan Silverman. I hope all those people are at the table in Toronto.

    We'll begin with the Kraemers.

À  +-(1035)  

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    Mr. Ingo Kraemer (Individual Presentation): Good morning. I would like to thank the committee for allowing me to speak today regarding Bill C-13. I will be addressing the existing clauses in the draft legislation.

    But first allow me to set the stage. Of women of child-bearing age, 1.2 million are affected by infertility. There are probably an equal number of men. The majority of us have not been heard by this committee. I am here today only because the legislation was brought to my attention by friends who are in the same position.

    The bill has not been widely understood by infertile couples, especially those needing egg and sperm donations and surrogates, because a great deal of the publicity surrounding this bill has been on stem cell research.

    You have mainly heard from either those who have never experienced infertility or those who claim to speak for the infertile. I am certainly one of those infertile people, but I do not agree with what others have stood up and said, ostensibly on my behalf. I am pleased that the committee is now seeking input from those of us directly affected by infertility and this legislation. I hope you will continue to allow us a say in the regulations and to participate in a meaningful way regarding the Assisted Human Reproduction Agency.

    I cannot now imagine my life without my beautiful, happy, 10-month old son, who was conceived through the heartfelt donation of a woman's eggs, the gift of life. I cannot imagine not going to see Santa Claus with James and seeing his eyes light up with sheer joy over the dazzling lights and decorations; having him fall asleep, his warm body snuggled against my chest, his tiny hand clutching my finger; and seeing his beaming smile in the morning as both his hands reach out to his daddy and mommy and he says, please pick me up and hold me. He has completed my life as a man and as a father. Jennifer and I are living the reality, as are many others, of experiencing the nurturing and loving of a child who asks for no more than to be loved in return. This treasure would not have been possible without donated eggs, because Jennifer, who has had endometriosis since her early teens, has experienced premature menopause.

    It was a heart-rending blow as we sat in the doctor's office and were told that we would never experience the joy of parenting a child.

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    The Chair: Mr. Kraemer, may I interrupt you for a second. I forgot to ask you if you mind being videotaped for that potential documentary.

    Mr. Ingo Kraemer: No.

    The Chair: You don't mind. Thank you. Sorry to interrupt your thought.

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    Mr. Ingo Kraemer: That's all right. However, let me start that paragraph again.

    It was a heart-rending blow as we sat in the doctor's office and were told we would never experience the joy of bearing a child. However, in the same breath, we were then given hope that, through the kindness and empathy of a wonderful woman, we could in fact have a child, for which we would be eternally grateful. I can vividly remember the scene as I watched Jennifer giving birth to Shane. He kicked and screamed upon his birth into this world as tears rolled down my face, and I said to myself, thank God we live in this time of technology that allows me to hold in my arms the greatest asset to our nation, a child, my child.

    I fear now that Shane will never be able to have a brother or sister if the committee members cannot find it in their hearts and souls to do the right thing.

    I'm in agreement with the facts that assisted reproductive technology should be regulated to protect all parties concerned; however, I do not agree with some of the current clauses as they stand now.

    Donors should be compensated with a monetary cap, since they give up a minimum of six weeks to undergo treatment that requires a significant effort on their part. Infertility is on the rise, and if we do not have compensation this will make the donor pool disappear in Canada. Unfortunately, this is what has happened in many countries that have gone this route. The other fear is that it will drive the quacks underground, where anything goes.

    Can you imagine an underground world of no control, where the highest bidder wins? This is where true commodification will flourish. Others who can afford to will go to the U.S. Even with the current system, where donors are compensated for their time and expenses, it took us more than one year to find a donor. No one will, or expects, to get rich from this process.

    I also believe there should be a registry that parallels the adoption registry, where both parties have to consent to being contacted. I also believe that the AHR Agency should have equal representation of those who have either been, or currently are, directly affected by this legislation. People who have gone through this process can be more instructive regarding the plight of the infertile community.

    Let me say these final words for my son, who would say, if he were able to speak: I am an IVF baby, born to my mommy and daddy through the empathy of another woman. I love them with all my heart. Please, do not take away the hope and dreams of what could be. My name is Shane.

    This is what I'm talking about today.

À  +-(1040)  

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    The Chair: Thank you, Mr. Kraemer.

    Could we hear now from Ms. MacCallum, please? Ms. MacCallum, do you mind being videotaped for a possible documentary?

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    Ms. Anita MacCallum (Individual Presentation): No, that's fine.

    I live in Toronto and work as a self-employed bookkeeper. My husband, Richard MacCallum, is a public librarian. It took us nearly seven years to achieve our dream of having a child. Our daughter Erica is now two and is the joy of our life.

    In the years before she was born, my husband and I went through every diagnostic test and procedure available, including surgery for endometriosis, multiple inseminations, and two unsuccessful attempts at in vitro fertilization. I am very healthy in every other way, but I have a number of problems with my reproductive system. The most serious problem seems to be that for reasons the doctors cannot explain, my egg quality is poor. I was told my eggs were unlikely to ever produce a viable embryo, which would explain the fact that I had two early-term miscarriages.

    On our third attempt at in vitro fertilization we added a new factor. My sister, Rebecca Daniels, who is 10 years younger than I am, provided the eggs. Unlike sperm donation, egg donation is an onerous task. My sister had to dedicate almost two months of her life to getting her body ready to provide eggs for our IVF. She had 31 days of self-injected doses of Lucron, a drug that shut her own reproductive system down, followed by 14 days of Fertinorm injections, which stimulated her ovaries. She had to visit the doctor a dozen times for blood tests and vaginal ultrasounds to monitor the growth of her follicles. When the follicles had grown to an appropriate size, she had to undergo a serious and very painful procedure to remove over 25 eggs from her ovaries.

    My sister, my husband, and I support the coverage of direct, as well indirect, expenses that donors, especially egg donors, have to bear. I did not pay my sister for her eggs, but I most certainly gave her a gift of thanks for what she went through to help us. Her main reward was the beautiful niece she now has in her life. What thanks does an unknown donor get if her indirect costs are not covered? Paying donors and surrogates is not commercialization; it is a way of recognizing the sacrifices a generous person has made to help a couple achieve their dream of having a family. If donors and gestational carriers are not compensated, they will surely not make themselves available to help those in need.

    In order to avoid undue emotional pain and suffering on the part of infertile couples requiring gamete donors or gestational carriers, we strongly urge you to change clauses 6 and 7 of Bill C-13 to allow coverage of direct, as well as indirect, expenses. We are also in support of deleting clauses 6 and 7 from the section entitled “Prohibited Activities” and adding them to the “Controlled Activities” section of the bill. Infertile Canadians are not criminals for wanting to have children. This legislation should help, not hinder, those couples whose health problems have led them to pursue alternative ways of building their families.

    I would encourage you to consider seriously the individual testimony you hear from the infertile population, the very people who will be affected by this legislation. In Canada there is currently no organization or group that represents the interests of infertile people, and the best these couples can do is use their own voices to tell their story. Please consider them carefully.

    Thank you for your time.

À  +-(1045)  

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    The Chair: Thank you very much, Mrs. MacCallum.

    We'll now go on to Mr. Simpson, if he's back.

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    Mr. Alan Simpson (Individual Presentation): I'm here.

    What's the videotape for?

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    The Chair: They are hoping to do a documentary on surrogacy. The question is whether you want to be in it or not. If you don't, they will stop videotaping before you speak.

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    Mr. Alan Simpson: I'm here with my wife and my son; they're right beside me. But my wife does not want us videotaped.

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    The Chair: Thank you very much. I'll instruct the technician to that effect.

    Go ahead, Mr. Simpson.

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    Mr. Alan Simpson: Thank you.

    First of all, I want to thank everybody for giving us the opportunity to address you today. This is my wife, Rebecca, and this is my son, Jared.

    This is our story. About five years ago, my wife and I were in Mount Sinai Hospital awaiting the birth of our first son. In the course of a blink of an eye, our lives were changed forever. In January 1998, the moment our son was born, we and our doctors knew that something was seriously wrong. Our baby wasn't crying, but was very floppy. The doctors immediately took the baby away and rushed him to a respirator. My wife, who couldn't actually see the birth itself, could see the look on my face and was screaming and crying, “What's wrong? What's wrong?” Of course I had no answers.

    Over the next series of months, our child was kept in level-three care at Mount Sinai Hospital, which is the critical care unit. Each month another piece of news from the doctors came: our child was never going to walk. The next month it was that our child was never going to see. The next month it was that our child was never going to hear. As you can imagine, our entire lives were put upside down. We were depressed. We were shocked. A lifelong set of dreams came crashing down. Though the pain was incredible, we came to accept and to love our son. His name was Eli. But barely a year and a half later, in April 1999, our son passed away in his sleep. The grief we felt at his birth was then superseded by losing a child.

    If the news could get any worse, it managed to. The doctors told us that Rebecca would never be able to carry again, due to medical complications during the pregnancy itself. We still wanted to have a child. But when we saw the next set of doctors, they told us that my son Eli's condition was inherited. His illness and death were directly attributed to this inherited condition carried on my wife's side. What were we going to do, and where were we going to go? We wanted to have a family.

    It became obvious that a gestational carrier and an egg donor were our only viable options. Who was going to carry our baby? Where were we going to get an egg? Our mothers and my sisters were too old to child-bear and certainly couldn't offer up an egg. Rebecca has a sister, but she was battling a serious case of cancer. She couldn't carry, nor could she offer an egg because of this. We were going to have to try to find—by the grace of God—a carrier and an egg donor, or a combination of the two.

    In the journey to try to find a carrier, we met about eight women. All of them had something in common. They all had children; they all had easy pregnancies; they all gave birth very easily—everything that we didn't experience. They all came from middle-class backgrounds. Whenever we read articles on gestational carriers, it infuriates my wife and I to hear about a set of underclass women who are being exploited. Not only did we see eight people, but we also probably spoke to ten other people. In no case was this the fact.

    What we were looking for, of course, was someone who wasn't going to be exploited. We were looking for someone who was going to care for our baby for nine months. We were looking for someone who was working, and someone who wasn't a drug addict—God forbid. We were looking for someone who could feed our child nutritious food.

À  +-(1050)  

    To us, the government's proposal that a carrier not be compensated is truly an absurd thought. And I beg to differ, it's not nine months; it's more like a year and a half, because there's also a recovery period after they have a child; and you don't necessarily get pregnant on the first try, which was certainly our case.

    To us, this is not commercialization. If you had a nurse caring for an elderly gentleman in a home 24 hours a day for a year, they're providing a service. You would obviously compensate the nurse. There's no difference, in our opinion, between someone who's providing a service and giving us the incredible gift of carrying a child for us.

    From our experience of two years, legislating against gestational carriers being remunerated will virtually eliminate any women from wanting to be carriers. As has been mentioned, it will only serve to send desperate couples to the United States—if they're super-rich—or underground, without any legal protection and legal documentation. We were fortunate to find a great clinic, and a good lawyer, who helped both parties.

    Our carrier—who had her own representation—and we ourselves understand all the things that are required and all of the issues that need to be brought forward. I fear that we would have done anything to have a child; I'm not sure what it was, but we would have done anything to have one. I can assure you that we would still do it, and go underground.

    It's not by choice that couples are facing reproductive technologies. We didn't choose to have a son who died; we didn't choose to inherit this condition. It's not by choice that people who have cancer, hysterectomies, or all the various reasons they need to undergo these treatments, do so. These are the cards that were dealt to us. There's no stranger in the world who would have been willing to carry a baby for us for free. It's that simple.

    With the proposed legislation, Jared, our second son, would not exist. The cloud of grief that was on our lives would still be there.

    I'd like to conclude by discussing the legislation, to keep its eye on the big picture. In a Health Canada information release in May 2002, which I happened to read, entitled “Proposed Act Respecting Assisted Human Reproduction”, the very first line read: “To protect the health and safety of Canadians using assisted human reproduction (AHR) to build their families by regulating ethically acceptable practices such as in vitro fertilization”.

    I'd like to focus on the big picture, which is building families. Making it illegal, and making me and my wife—hard-working Canadian college graduates—criminals does not seem particularly helpful in building a family. Jared certainly wouldn't exist. Whatever the issues are, and I'm sure there are many, making it illegal to have children by effectively banning egg donation and carriers—which is what this does, don't kid yourself—the very thing that the bill should be protecting, it's eliminating. This is the perverse result of this legislation.

    If there is a need to regulate the qualifications of carriers and the amount of compensation, I don't think this is unreasonable. I don't have an issue with this. Taking away the ability to have our own child and our right to have children is unacceptable.

    This country needs more Canadians. We all know that. We read that in the papers ever single day. Let us desperate Canadian families build a family that we desperately want. Maybe our son, Jared, will become the next Prime Minister of Canada. Who knows? But what I do know is that, if we were not allowed to have Jared, my wife and I would still be in mourning four years later.

    I ask this committee, if you have been lucky enough to have the joy of children yourself, to search your hearts and let us desperate Canadians have our own children.

    Thank you for your time.

À  +-(1055)  

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    The Chair: Thank you, Mr. Simpson.

    Could we now hear from Ms. Prince.

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    Ms. Janet Prince (Individual Presentation): Hi, I'm Janet Prince and I would not like to be videotaped.

    The Chair: Thank you very much.

    Ms. Janet Prince: I'm speaking from the perspective of having gone through six years of infertility, through many procedures, including three laparoscopies and four IVF attempts. Unfortunately, none of them were successful and in the end I had a hysterectomy approximately a year and a half ago, so I would like to speak from the perspective of surrogacy and egg donor and talk a little bit about that, because it is something that at this point I'm considering.

    From what I'm told, the supply far outweighs the demand. I think we do need to regulate egg donors and I do think this is something that should be legislated. If we don't financially compensate these donors, we will never keep up because of the fact that the demand is far greater than the supply, but I do think we need to have guidelines about this.

    In the U.S. there are some clinics that are now offering donors for $5,000 and up, and there are websites advertising. I don't think Canada should go this route, but guidelines are what we do need. I think there should be a limit on what you financially compensate donors of approximately $2,500. Having gone through the process myself, I know that it's a very physically and mentally taxing process.

    Secondly, as for limiting the number of tries a donor can go through, I don't think any more than maybe four would be reasonable, and I think it's important to have a donor registry but it should be kept totally anonymous. And I think it should be up to the clinics to have the registry and to keep track of this and not the government.

    So I think the legislation should allow egg donation in circumstances like mine and, secondly, surrogacy. As many of these people who have spoken in front of the committee have said, it's something that is a lifelong wish for many people, and we've gone through processes ourselves that are very painful and take a long time. Therefore, I think the legislation should regulate but not disallow surrogacy and egg donors.

    Thank you.

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    The Chair: Thank you, Ms. Prince.

    Could we hear now from Ms. Silverman, please.

Á  +-(1100)  

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    Ms. Jan Silverman (Clinical Program Specialist, Infertility Support and Education Program, Regional Women's Health Centre of Sunnybrook and Women's College Health Sciences Centre): I have been employed in the professional capacity of infertility counsellor for the past 11 years. For approximately 11 years prior to that I was involved in grassroots infertility support activities. So for more than 22 years I have been in the unique position of hearing the actual voices of thousands of infertile women and men. I provide individual and couple counselling and I facilitate large, extremely well-attended infertility support groups as well as a support group for women, after they make their families through either infertility treatment or through adoption.

    From this privileged position, I would like to share with the committee some of what I have learned over the years.

    First of all, I need to be assured that the anguish and complexity of being an infertile woman or man in a fertile society is understood and honoured. Please understand there is no aspect of an individual or couple's life that is not dramatically affected and altered from a diagnosis of infertility. Also understand there is no group, collective voice, or organization that speaks for this silenced group.

    Most of us assume fertility. Most of us assume that after we meet and marry the right person and we are ready, we will be able to have a child. Most of the time it does happen the normal way.

    Now assume that you went into menopause, as we heard earlier, when you were in your late teens for no known reason, or that you had cancer and a hysterectomy in your twenties. Or, assume you were born with Turner's syndrome and you never developed ovarian function, or with vaginal agenesis and you never developed a functioning vagina or uterus. Now you are imagining some of my caseload.

    Now try to imagine the woman's sense of self when she realizes that she will not be able to accomplish that which she has always hoped for, dreamed of, and prayed for.

    Now imagine technology existing that would allow her to become pregnant using a donor egg and the sperm of her husband, or her egg and her husband's sperm now having the opportunity to grow and develop in a gestational carrier. Now imagine the woman's sense of self and think about how this renewed sense of self will positively impact on her life and the life of her child.

    Now try to imagine the technology existing but not being readily available to these Canadian women and men. Imagine them having to find a donor or a carrier in the States, and I have clients who have looked at this. Add an exorbitant fee in American dollars, because the number of available donors or carriers has greatly diminished when the compensation is significantly altered.

    Imagine laws that, instead of considering and protecting the infertile man and woman and the potential donors and surrogate, drive them underground.

    The path to reach the decision to use donor eggs or sperm, or a gestational carrier, is a long and arduous one. Using a gamete that is not your own, or another woman to nurture a desperately desired pregnancy is not an easy decision.

    It is a significant part of my job to talk about and work through the process with hopeful couples, as well as with the potential egg donors and gestational carriers. In the process of our talking, part of my role is to help all parties concerned to learn and become more educated. They are guided to think through their decision and the possible ramifications to themselves and the potential offspring, and yet the donors, the carriers, and the couples are treated and respected as thinking adults.

    To quote a client, with her permission, she says:

[What] really bothers me about these so called “experts” is they have this notion that we don't care about the children, which is the furthest thing from the truth. We agonize over all of the options and weigh the pros and cons.

    --as do the donors and the gestational carriers.

Á  +-(1105)  

It is my job to assist them in that process.

    To make assumptions that the small proportion of infertile men and women who need to make use of the technology, the potential donors, and gestational carriers are not thinking about the actual child produced from this technology, is cruel, unfair, and erroneous. These children are desperately wanted children. These women and men desperately want a genetic or biological link to their children. Didn't you?

    These women and men desperately want to be parents, so the response of the fertile world is that they can always adopt. I suggest that it is an insult to the adoption process to assume that every family wanting a child would be appropriate adoptive parents. Adoption is an extremely complex, extremely expensive, extremely difficult process.

    However, this legislation is not about adoption. This legislation is in part about providing infertile women and men with access to reproductive choice. The legislation should be about respecting all Canadians. I urge you to understand and respect infertile Canadians, as well as the women willing and able to donate eggs and act as gestational carriers. Listen to, respect, and support them, and aid their journey. Allow the donors and gestational carriers to receive reasonable reimbursement for direct and indirect costs. Regulate but do not eliminate.

    Thank you.

    A voice: Well said.

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

    We'll now move to the question-and-answer section of our encounter, and we'll begin with Mr. Lunney.

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    Mr. James Lunney: Thank you, Madam Chair.

    Janet Prince, I believe you made a comment about registry. You were recommending that a registry be established and completed. We heard testimony earlier about establishing and keeping a registry of donors. I'm wondering if you're talking about the issue of anonymity and about disclosure of the biological identity to the child, eventually and with a plan. Is that why you are saying information about all donors should be kept in a central registry? Is that what you meant by your remark?

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    Ms. Janet Prince: More importantly, the registry would be more of a control. I really think it's up to the couple who gets the egg donation to decide whether or not they want to divulge that information to their child. I think you'd find that most couples would, but I think that registry would be important to the child maybe for medical reasons.

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    Mr. James Lunney: But you personally don't feel there should be a mandatory identity record kept and that there should be a central registry for all donors.

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    Ms. Janet Prince: Yes, I actually do.

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    Mr. James Lunney: You do.

    Thank you.

    Just going over to Anita MacCallum now, as part of your testimony, you mentioned your experience with your clinic. Would you mind telling us which clinic you were working with?

+-

    Ms. Anita MacCallum: My doctor's name is Clifford Librach.

+-

    Mr. James Lunney: I just wondered about the experience in terms of the number of eggs that were produced there. I think you mentioned that it was your sister who had your—

+-

    Ms. Anita MacCallum: That's right.

+-

    Mr. James Lunney: And up to 25 eggs were used for the process, were taken?

+-

    Ms. Anita MacCallum: Right. She was fairly young and responded quite well to the medication.

    They took out about 25 eggs. They inseminated them, but not all of them turned into embryos. They have to stay in a Petri dish for three days. By the end of three days, we had five embryos left. Two of them were not good-quality embryos, but we said to put them all in. We ended up with one daughter, so it took 25 eggs to be retrieved to end up with one child. That's what happens. You have to stimulate the ovaries to increase your chance of even getting one child.

Á  +-(1110)  

+-

    Mr. James Lunney: A question was raised with the last set of witnesses, and perhaps it bears asking again. In your experience with the clinics--we're concerned about the registry of clinics, about disclosure of information, and informed consent--did you feel that, for you or your sister, there was adequate disclosure? In the whole process that you went through, were you adequately informed along the way?

    And I would ask the same question of other witnesses.

+-

    Ms. Anita MacCallum: I thought we were all treated with respect. We had to sign consent forms, my sister signed consent forms, and we were all in agreement. Everything was open for discussion. We were treated very well at our clinic; I have no complaints. I think they do a wonderful job and keep very good records.

+-

    Mr. Ingo Kraemer: In terms of my experience, given the fact that this industry is now unregulated, I was impressed by the amount of professionalism and caring that went on in the clinic we attended. I felt I had better care than if I had gone into a hospital for a kidney operation.

    I was totally impressed. There was counselling at every stage of our process. There was discussion of every avenue, in terms of this IVF process, to ensure we were making the right decision and taking the right route.

+-

    Ms. Jan Silverman: I would also add that mandatory counselling is required for all the couples that are going to partake of sperm and egg donations, as well as for the gestational carriers. The carriers, donors, and couples are all seen for mandatory counselling. It's not an option. They cannot proceed if they are not counselled.

+-

    Ms. Rebecca Simpson (Individual Presentation): We also received psychological counselling along the way, as did the carrier and her husband. It was mandatory for them to go as well. We both had excellent legal counsel: we had our own, they had their own. We also felt every step of the way was well regulated. They made sure everyone had thought out all the different options and possible permutations for things that could happen. We were well taken care of on both sides.

+-

    Mr. James Lunney: I have another question on the aspect of paying the surrogate. I heard someone mention--and I'm sorry I can't remember who--they thought perhaps $2,500 was reasonable compensation. We've heard figures that range from $2,500 to $25,000 or $30,000. I just wonder how you feel about that.

    Could you clarify your own position on that, or would others like to comment on what is appropriate compensation in their view?

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    Ms. Jennifer Kraemer (Individual Presentation): Nobody said that $2,500 was the payment for surrogacy. I think they quoted that for egg donation, not for surrogacy.

    That's not necessarily an issue for us to deal with here in terms of setting what we believe is the right amount of money. We just believe it should happen. I think it's ultimately up to the committee, the regulators, and the advisory board to decide what is fair and reasonable compensation.

+-

    Mr. Alan Simpson: So $2,500 was for the egg donation. I addressed that a little bit in my conversation. First of all, I think most people would give their right arm for their child, as any of you would if your child needed it.

    In terms of the carriers, they had to go through a process for a few months before they even tried this. It doesn't necessarily work when you have this. You have to care for the child for nine months, and then recover from being pregnant, just like after any other pregnancy.

    So I don't know what reasonable compensation is. I can only tell you that a right arm, half a car, a car...whatever it takes, that would be reasonable. Maybe you should figure it out by minimum wage. I do know that if you have a nurse caring for somebody it's a service, and if they were caring for them 24/7 for a year and a half, I have no idea what that amount would be, but it would be significantly more than whatever's on the committee's mind. I agree you'd probably need to get some counsel on that.

    They're not doing this only for the money; they're doing this because they can have babies and they want to give the gift of life. But they need to be compensated, and $2,500 is not compensation.

Á  +-(1115)  

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    The Vice-Chair (Mr. Stan Dromisky (Thunder Bay—Atikokan, Lib.)): Thank you very much, Mr. Lunney.

    We'll now turn to Madam Chamberlain.

+-

    Mrs. Brenda Chamberlain: Thank you, Mr. Chair.

    I want to follow up on this compensation part, and I understand very clearly that the group feels that compensation is important. Politically, it's a problem. To compensate people to have or manufacture babies for people is an issue for the public. Many times, while we must show leadership, we also must bring the public along in an issue. So I need guidance from you, because I know you want us to focus in on this. This has been an extremely big part of the presentation today, the compensation part of it. How would we be able to bring the public along in that?

    Do you think, for instance, it's okay to buy a kidney, a lung, or whatever else you would need from a person? While I know this is different from the point of view that the person can have a child and then be okay, there still is that stigma with the public that you are actually having a service that is manufacturing human beings.

+-

    Ms. Jennifer Kraemer: It is my understanding that the government commissioned a poll and asked the general public whether they would want to compensate for surrogacy and egg donation, and the poll said the majority of the public would be okay with that. The government commissioned this poll.

+-

    Mrs. Brenda Chamberlain: They may have done that; however--

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    The Vice-Chair (Mr. Stan Dromisky): Can I just interrupt here for a second, please.

    There's something that has to be clarified to the witnesses. That is, there are certain individuals in that panel in Toronto at the present time who have not given approval for their presentations to be taped for the documentary. However, what is happening here right now is that some very profound responses are being given to some of the questions that are being raised by the committee. Would those who have not given approval for their presentations to be taped give approval for their responses to some of the questions to be taped in an anonymous manner? In other words, your name wouldn't be used, nor your face.

    Witnesses: Yes, sure.

    The Vice-Chair (Mr. Stan Dromisky): Some brilliant answers are coming forth. We have some very intelligent people on the panel there.

    Yes.

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    Mr. Alan Simpson: Bonnie, I noticed that you've changed your dress, your dress code.

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    The Vice-Chair (Mr. Stan Dromisky): Yes. Do you like my tie?

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    Mr. Alan Simpson: I don't know what's going on over there, but that's fine with us.

+-

    The Vice-Chair (Mr. Stan Dromisky): Neither do we.

    All right, I'm sorry for interrupting, Brenda. Go right ahead.

+-

    Mrs. Brenda Chamberlain: I am aware of the poll; however, I would say this to you. Being a servant of the people, I have to tell you that I think the mood out there is still very much one in which they would have difficulty with compensation. So you need to help us, since you feel so strongly about compensation.

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    Ms. Anita MacCallum: Okay, listen. Can you listen to me for a second?

+-

    Mrs. Brenda Chamberlain: Yes.

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    Ms. Anita MacCallum: I understand that you heard from Diane Allen earlier. She probably didn't tell you this, but she did a poll of her membership a couple of years ago, and she gave me some information on what she got back. She found that her members agreed that surrogates should be compensated for their time and expenses. Pregnancy lasts a long time, and people have to be compensated for that.

    A friend of mine carried a baby for her cousin. This was a completely private deal, it was not done through any doctors, no lawyers were involved, nothing. Her cousin did not pay her to do this, but I'm sure she got an awfully nice gift from her cousin for helping her out. It would have been very bad of me not to treat my sister well after what she did for me, and I think most Canadians would think it an exploitation of women if they were not compensated in some way.

    They're not going to get rich doing this. People are not baby-making machines; they are people helping people, and you cannot expect people to help other people for nine months and not get some recognition for that.

Á  +-(1120)  

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    Ms. Rebecca Simpson: I think what she said is true. To think that someone should carry a child for nine months. As my husband said, it's really longer than that. If my sister had been well and hadn't been battling cancer and had carried my child, I would have bought her a gift, I would have done.... Let's say it's $15,000. For the period of time they're spending, with their coming and going to the doctors, that's nothing. It certainly isn't an amount of money that can change anybody's life. It's a token of your appreciation; it's to show some reasonable sense that this person is doing something so unbelievable for you.

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    Mr. Alan Simpson: I'd like to answer the actual question. You asked how Canadians are going to react. First of all, this is the survey, and it says 54% of respondents agreed that payments to surrogate carriers should be allowed. So the first thing is that it's a majority of Canadians, and if they heard this testimony, it would probably be more like 66% or 70%.

    But I still don't think that's necessarily the issue the committee has to deal with. I personally think the issue is the big picture. The big picture is that we want to have families. I'm not saying the legislation is going to be perfect for everybody for all means, but it is to help us have families, and that should be an important part of the legislation. Giving no remuneration bans surrogacy, it bans egg donation; it effectively eliminates it. That should not be the purpose, if you've been listening to the couples in this room. The purpose should be to help build families, to regulate it, to make sure there's no exploitation. It shouldn't be an 18-year-old girl who has never had kids. I perfectly understand that. Maybe we went to clinics that happened to be well prepared, happened to have the counselling, happened to look after us properly, and you would like to make sure that is maintained.

    This service is not covered under the Health Act, nor do I foresee it being covered under the Health Act. So until you're willing to pay surrogates to do this service.... Because it's not different from a nurse or a doctor. If the Government of Canada is prepared to pay, it wouldn't be able to get away with $15,000; I'm sure it would be a lot much more money, if you consider minimum wage. If the Government of Canada is willing to pay surrogates and provide this service, I think we'd all be happy, but we understand that this is a service, it's not a kidney. Someone mentioned a kidney earlier in this session, and this is not someone giving up a body part at a moment in time or on their death bed donating organs; this is a service, whether it's an egg donor for six weeks or a surrogate mother.

+-

    The Vice-Chair (Mr. Stan Dromisky): I'm sorry, I have to terminate your presentation, because we have a question to be asked here by Madam Skelton.

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    Mr. Alan Simpson: Okay, no problem.

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    Ms. Carol Skelton (Saskatoon—Rosetown—Biggar, Canadian Alliance): I just want to follow up on what my colleague Rob Merrifield asked the last group. We have heard on the committee here that there are a lot of embryos available in Canada. Were you ever given the option to adopt an embryo?

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    Ms. Jennifer Kraemer: We were not given that option to adopt an embryo and we in fact have 15 frozen embryos.

    Again, I'll reiterate what Kate said in the last panel. Those embryos are sitting there in the hopes that we can conceive another child. In order to have Shane, we have already used 35 embryos, so that's 35 embryos in order to conceive one child. So I don't think there are a ton of them sitting out there waiting for people to be given the option. Most people know that it takes a great deal more than just one to conceive a pregnancy.

    So my 15 that are sitting there will stay sitting there until I decide whether I want another child. If I use them, I will likely have to use all of them in order to conceive one child again.

Á  +-(1125)  

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    Mr. Ingo Kraemer: You also have to understand that fresh embryos produce the highest success rates. When you start to go to frozen embryos, the success rates are in fact less. So this pool we have of embryos disappears very quickly. Although a number like 25 or 30 embryos may seem large to people who are not really knowledgeable on this subject, that can disappear in a blink of an eye just on one recipient.

    So I see what you're getting at. There are all these excess embryos, and why not use them? But I really don't consider them excess, unfortunately, because they are primarily used for a single recipient and disappear very quickly.

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    Mr. Alan Simpson: That's a good point.

    First of all, on the issue of adoption, I think any members on the committee who've had their own kids know that the dream for most parents is to have a child that's going to look like you, maybe act like you, want to be like you, and to have a biological link to the generation before. I don't think you can minimize the significance of that and just say, why don't you just adopt? I just lived four years wanting to have my own child.

    The second thing is that a very good point was made on the frozen embryos, in that it took us six times and the frozen embryos don't work. Maybe we're trying to have a brother or sister to Jared, although I'm not sure we're allowed to and we maybe can't discuss that, but the fact is that the frozen embryos don't work and the fresh embryos do as a rule, although not always. But that is definitely true of the frozen embryo success rate.

    But I would like to reiterate that I think we should have the right to have our own children and we should keep that big picture in mind first and foremost.

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    Ms. Carol Skelton: I wanted to add one thing: you have beautiful children.

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    Mr. Alan Simpson: Thank you, we appreciate that, and we love them all dearly.

    Next question. Come on, Bonnie.

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    The Vice-Chair (Mr. Stan Dromisky): Since there aren't any questions coming from either side of the floor, the chair would like to ask a question.

    I'm Stan Dromisky, all right, not Bonnie.

    The question I have is about an area of concern that is contained within the bill, in subclause 6(2). I would like to direct this to Jan Silverman, who has been providing, for over 22 years, a lot of counselling services.

    The question is, in light of that clause, Jan, would you consider yourself, if this legislation is passed, to be a criminal for providing that type of service? In other words, you are involved in helping to arrange surrogacy, because you do provide counselling services for people who are considering it, for the carrier as well as the infertile mother to be, in a sense, as well as any father who might be involved and consultations with doctors. Do you consider yourself and the doctors who are involved in the pre-pregnancy process as well as during the pregnancy and the post-pregnancy period to be committing, you might say, a criminal act?

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    Ms. Jan Silverman: Are you asking me if I'm a criminal? Would I be a criminal? You know what? I will consider myself a criminal because I consider it so imperative and so important that this be allowed to continue, that these men and women have the opportunity, that donors and surrogates be treated honestly, fairly, and openly. So I guess I'm off to jail. I'll have to hire a new counsellor.

Á  +-(1130)  

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    The Vice-Chair (Mr. Stan Dromisky): If that interpretation is taken by the general public and by the legal service and by the government, that would drive people into another area, and that is the underground. Correct?

    Witnesses: Correct.

+-

    Ms. Jan Silverman: I'm sorry to interrupt you, but I've had indications that this is happening already, because people are so nervous and so concerned about this legislation. There are already legal agreements being discussed, where they're not putting in money just in case.... So they're driving it underground already.

    What's to stop me from bringing in somebody and calling her my new best friend? Instead of Canadians being protected, instead of the egg donors or the surrogates being protected, we're going to be relying, again, on some archaic method of agreements. Instead of it being legal, instead of it protecting...we're collapsing back into a gentleman's or a gentlewoman's agreement.

    I think that is so scary, and I have to tell you again that I am already seeing indications of it. I'm already seeing people who are starting to figure out, when and if this happens, how they are going to be able to bypass, to circumvent...how that is going to be accomplished. Whether or not the committee wants to believe it's happening, it is truly happening. People want to be able to have the opportunity and the reproductive choices that technology allows.

    The technology is not going to go away. It exists. I have many colleagues in the States who will ask you this. Instead of the concentration being on prohibiting, why aren't we coming up with better ways, a better methodology to protect all parties? And again I say regulate, do not prohibit.

    [Applause from the audience]

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    The Vice-Chair (Mr. Stan Dromisky): Great. Thank you very much. I have to--

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    Mr. Alan Simpson: I could say she's speaking for all of us. We agree with what she's saying. Do you want to throw us in jail? We want our kids. If you want to lock us up, then that seems to be a perverse result of the legislation.

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    The Vice-Chair (Mr. Stan Dromisky): Thank you very much for your perceptions of the legislation and for your responses, which I think are very sincere, profound, and very honest. Thank you again for appearing before us.

    We'll now go on to our next panel.

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    Ms. Carolyn Bennett: Mr. Chairman, I've seen this survey that is being passed around by these groups. They've visited me in my office with it. I'd like to know where this survey originated.

    Would our researcher please get hold of that and tell us.

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    The Vice-Chair (Mr. Stan Dromisky): Bonnie is coming here to dissolve this session and to tell you people to get out of the room for the next group of panellists to come in.

    Isn't that right?

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    The Chair: As there are no more names on the list, people, we will move to the next panel.

    I would ask Mr. Koshan, Ms. Solomon, Mr. Kottler, and Ms. Wright to come to the mike.

Á  +-(1135)  

+-

     May I say welcome to the new witnesses. I'll ask Mr. Koshan to begin his presentation.

    Mr. Koshan, do you want to be videotaped or not?

+-

    Mr. Michael Koshan (Individual Presentation): That's fine.

    The Chair: Go ahead, Mr. Koshan, you have the floor.

    Mr. Michael Koshan: I would first like to thank the members of the committee for granting me the opportunity to speak today on the issues of Bill C-13.

    Before dealing with the specifics of the bill, I would like to provide everyone with a brief history of the infertility journey experienced by my wife, Samantha, and myself. Sam and I are both 32 years of age. During the fall of 2001 we started trying to conceive our first child. Four months later, Samantha was diagnosed with breast cancer. Part of her prescribed treatment includes chemotherapy and hormonal therapy. With chemotherapy, there's a significant risk of infertility. Should Sam be fortunate enough to retain her fertility, hormonal therapy will prohibit pregnancy for an additional five years. In addition, there's a significant risk that Sam could reach menopause during hormonal therapy, thus rendering her infertile, an outcome that, for us, could be truly devastating.

    In addition to our own struggles, my only brother, John, recently passed away from cancer in 2001 at the young age of 35. At the time of his diagnosis, John was in the process of starting a family. However, cancer destroyed that dream and he was unable to experience the joy of parenthood. With the loss of my only sibling, I was not only faced with the terrible grief that comes with the loss of a loved one so young, but also with the reality that the continuation of my family line rests with Sam and me. Maintaining this genetic heritage is very important to us. This is why we believe that surrogacy and gamete donation would be the best option for us to solve our infertility.

    I will now begin to focus my presentation on the areas of Bill C-13 that impact infertile Canadians the most, surrogacy and gamete donation.

    I fully respect and appreciate the concerns voiced by the committee and the government regarding reimbursements to both surrogates and gamete donors, most notably, exploitation, commodification, and the commercialization of human reproduction. Please understand that I share these concerns. My issues are not with the objectives of Bill C-13, but rather, with the method by which the bill proposes to achieve those objectives.

    I believe that should reimbursements to surrogates and gamete donors be limited to receiptable expenses only, the available pool of surrogates and donors will decrease significantly. Consequently, surrogacy and gamete donation will no longer represent a legitimate alternative for infertile Canadians. Surrogates and gamete donors incur real but unquantifiable costs in the course of helping infertile couples build families.

    These indirect costs include but are not limited to inconvenience, time away from work, pain and discomfort, loss of opportunity, and the assumption of certain medical risks. Consequently, it is not unreasonable or unethical to suggest that surrogates and gamete donors be entitled to reimbursement of these costs.

    Speaking from my own experience and for couples who dream of having a family, the sudden discovery of infertility is utterly devastating. For this reason, I would not be surprised if couples resorted to desperate measures to solve this problem. Consequently, legislating something as a criminal act does not mean it will simply go away. However, by legislating payment for surrogacy and the purchase of gametes as a criminal act, I believe the government is simply ignoring the issue with the hope that it will go away. I believe the more responsible approach would be to create a solution that is in the best interests of all Canadians, rather than settling for one that is acceptable to some while penalizing others.

    With that in mind, I present the following recommendations for amendments to Bill C-13 that I believe protect the rights of infertile Canadians while at the same time maintaining the objectives as outlined in the guiding principles of the bill.

    As part of the proposal before you today, it is recommended that clauses 6 and 7 of the bill, “Payment for surrogacy” and “Purchase of gametes”, be removed from the segment entitled “Prohibited Activities” and placed in the segment entitled “Controlled Activities”. By including these as part of controlled activities, I believe the government would be better able to regulate and properly supervise these activities and thus best protect the health and well-being of all Canadians.

    To prevent exploitation, it will be required that all parties involved in surrogacy and gamete donation have the benefit of independent, legal, and psychological counsel and that a legal contract must be executed before proceeding.

    To prevent commercialization and commodification, we recommend that any reimbursements of direct costs be reasonable and receipted, while the reimbursement of indirect costs be capped at an upper limit.

Á  +-(1140)  

    Finally, detailed rules providing the specifics to the above would be dealt with and set out in the regulations that will govern these controlled activities.

    In conclusion, I ask the members of the committee to place themselves in my shoes. Imagine being faced with the following: your only sibling passes away childless at an early age; your wife is diagnosed with breast cancer at the same time as you're trying to conceive your first child; you discover there's a high probability that the drugs your wife is required to take as part of her cancer treatment will render her infertile--all of this in a short, two-year time span. When you think about how Bill C-13 will affect Canadians, please don't forget about Samantha and me and others who suffer from infertility. I ask you to give serious consideration to the amendments that have been proposed to you today before making any decisions.

    With that in mind, it is my hope that you, as a committee, will take the responsible approach and provide recommendations that are fair, reasonable, and in the best interests of all Canadians.

    Thank you.

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    The Chair: Thank you, Mr. Koshan.

    Could we now hear from Ms. Solomon?

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    Ms. Shirley Solomon (Individual Presentation): Thank you and good morning. I am here, and so is my husband, Les Kottler.

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    Mr. Les Kottler (Individual Presentation): Good morning.

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    Ms. Shirley Solomon: We have come here today to talk about a deeply personal and private matter. Before I begin, I know you are probably going to ask me if I want to be videotaped. So rather than being interrupted, the answer is yes.

    Is it okay with you?

    Mr. Les Kottler: It's fine.

    Ms. Shirley Solomon: It's fine with both of us.

    The Chair: May I just reiterate at this time that it is for the purposes of a documentary, which might be shown later. That's okay with you?

    Mr. Les Kottler: Yes.

    Ms. Shirley Solomon: Sure. We're fine with that.

    The Chair: Thank you very much. Please, go ahead.

    Mr. Les Kottler: We like being on television.

    Ms. Shirley Solomon: We have come here today, as I've said, to talk about a deeply personal and very private matter that we would normally never share with strangers. It is very difficult for us to talk about this. But because of Bill C-13, we feel we have no choice.

    Our daughter, Stephanie, is 31 years old, and has been married to her husband, David, for two years. They desperately want to have a child. But Stephanie has suffered terribly for the past 15 years from a very severe form of Crohn's and colitis disease.

Á  +-(1150)  

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    Mr. Les Kottler: Stephanie has been in and out of hospitals constantly since she was 16 years old. Five years ago, she became so gravely ill that her entire colon had to be surgically removed in order to save her life. She wore a special bag attached to her stomach, so that she could defecate. Soon after this her Crohn's disease returned with a vengeance. Ever since, Stephanie has had to take 36 pills each and every day—not to mention the fact that, every seven weeks, she receives a six-hour transfusion of a new drug called Remicade, which is the drug of last resort for her disease.

+-

    Ms. Shirley Solomon: I brought you a picture of our daughter, Stephanie, and her husband, David. You will notice that Stephanie's face is extremely swollen. This is because of all the steroids and drugs she is on.

    She's a very courageous young woman, with a loving husband. She is an only child, who has always dreamt of having many children. But a high-risk fertility specialist—actually, two of them—have told her that, because of the seriousness of her disease, carrying a baby will put Stephanie's life in jeopardy. She was devastated and heartbroken by this news. She felt she was a failure—this brave girl—as a woman, as a wife, and as a daughter. For months, she was inconsolable. She had a terrible sense of loss.

    That was when we, as a family—and we're a small family—talked about using a surrogate to carry a child for her and David. Her sense of loss and failure was lessened, because, with a gestational carrier, they would have a biological connection to the baby. This was very important to them, for many reasons.

+-

    Mr. Les Kottler: Then we learned of Bill C-13. As you've heard many times today, if it becomes law, it will in essence prevent Stephanie and David from having a biological child. It will also prevent us from becoming grandparents. This is something that breaks our hearts.

    This is because this law will allow donors and surrogates to be compensated only for their receiptable expenses, and will in effect put a stop to egg donors and surrogates from coming forward in this country. Evidence from other countries has overwhelmingly demonstrated that this is the case.

    But more importantly, we want you to understand that this is not about commercialization, commodification, or exploitation, as you're heard today. It is about compensating egg donors and surrogates for what are essentially selfless acts, for medical risks, the time involved, and the disruption to their lives. We believe, therefore, that donors and surrogates should be reasonably compensated in addition to their receiptable expenses. The regulations under Bill C-13 would ensure such compensation remains fair and not excessive, and based on historical precedent.

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    Ms. Shirley Solomon: You cannot begin to imagine how much pain, suffering, and heartache you will bring to our family and to all these families if Bill C-13 is passed. Stephanie and David have come to the point where it is actually painful for them to see so many of their friends having children, except for them. It is painful for us to see all our friends becoming grandparents, except for us. We implore you not to pass a law that would further penalize people like Stephanie, people who, for medical reasons and through no fault of their own, are not able to bear children. Isn't it enough that she has had the misfortune of contracting this terrible disease? Must you add to her misfortune by passing a law that will deprive her of having her own biologically related child, or even children?

+-

    Mr. Les Kottler: Ladies and gentlemen, no committee and no law has the right to play God, and we feel that Bill C-13, as it is now drafted, attempts to play God. It would deprive Canadians like our daughter of the right to choose how to create their families. What right does the state have to intrude in this highly personal and private decision?

    Privacy Commissioner George Radwanski was right when he said over the weekend that “this government has lost its moral compass with regard to the fundamental human right of privacy” and is “doing irreversible damage to Canadian society”. We believe Bill C-13 is an example of just that.

    It is hard for us to believe we're actually sitting here before you in the Parliament of Canada--yes, Canada, with its Charter of Rights, reflecting freedom of choice and human rights, quintessential Canadian values--actually pleading for the right to be grandparents and for the right and freedom of our daughter and son-in-law to choose how they wish to create their family.

+-

    Ms. Shirley Solomon: It was for religious and political freedom, and freedom from oppression and racism, that my parents came to Canada in 1950. My mother is a survivor of the Auschwitz death camp, and I was born in a refugee camp. I have never had any grandparents, because they did not survive. Their ashes were left in an oven in Auschwitz. So I have never known the joy and the love of a grandmother or a grandfather. Now I am faced with the possibility, because of this punitive and draconian law, of never knowing the joy of having a grandchild who is biologically connected to me and to my family.

    I implore you, do not take that away from me or from my husband. I implore you, do not take that away from my daughter, Stephanie, or her husband, David. It would be a travesty for Bill C-13 to take away that choice from any Canadian.

    Thank you.

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    The Chair: Thank you, Ms. Solomon, and thank you, Mr. Kottler.

    Could we move on now to Ms. Wright, who I believe is there waiting?

    Ms. Wright, how do you feel about this being videotaped for a documentary? Is that all right with you?

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    Ms. Joanne Wright (Canadian Surrogacy Options): That's fine.

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    The Chair: Thank you very much.

    You have the floor, Ms. Wright.

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    Ms. Joanne Wright: Good morning, ladies and gentlemen. Thank you for inviting me here today to give you some insight and to dispel some myths about the world of surrogacy. My name is Joanne Wright, and I've been happily married for over 23 years. I'm also the mom of three children, 15, 18, and 20. I've had the privilege of helping three couples become families by being their gestational carrier.

    Having completed our family and knowing the joy that children can bring, to me it seems so sad that many couples, through no fault of their own, are unable to experience this fulfilment. Technology has come a long way to assist the infertile to have a biological child through a third party. During my pregnancy with our third child, I watched a documentary on surrogate carriers and knew I could do this. In researching this, I found my only option at that time was to travel to the United States and go through an agency. This agency also introduced me to my couple.

    I was going to be a gestational carrier, which means we used embryos created by using the eggs of the intended mother and sperm from the intended father. In December 1988, when their son and daughter were born, I had a wonderful sense of accomplishment and pride. I never at any time felt their babies were a part of me. They belonged to their parents. I did feel blue when it was all over, but this is a normal hormonal response for most women postpartum. Thanks to counselling during pregnancy and after the birth, however, it wasn't anything I wasn't prepared for. It was also secondary to the absolute joy that I saw on these new parents' faces.

    I never for a second thought about keeping their baby, nor was this about the money. A gestational carrier sacrifices her emotions, her hormones, her body, her intimacy with her husband, and her active lifestyle with her children. She risks potentially serious health complications from the pregnancy, and, yes, perhaps even her life, to help a couple to achieve their dream. If she is paid $20,000 over nine months, that is about $2.50 an hour. Does this sound like a lot of money to you? No one is enticed to do this for the money alone.

    Since 1992, I have worked with lawyers, doctors, social workers, and clinic staff to try to reform and regulate surrogacy. I established Canadian Surrogacy Options Inc., which is a liaison service for couples needing a gestational carrier and for women contemplating being a carrier. The goal of my agency is to help people have a child. Hopefully, by legislating and regulating agencies in Canada, we are giving these couples new hope.

    When couples approach me, they have exhausted all medical intervention. By having a licensed agency such as mine, couples and carriers can be assured there are professional, responsible, experienced people dealing with these most complex issues. I run a very professional agency. I researched other agencies for the best practices, and am a valuable guide for both the gestational carrier and the intended parents on the complex and wonderful journey. I absolutely love what I have been doing over the last number of years.

    Unfortunately, there are many in this country struggling to have a child. Their stories are numerous, and it still breaks my heart every time I hear someone struggle with infertility. Let me tell you some of these stories to make it a little bit more real for you.

    One young woman had cancer and had to have a hysterectomy at 13. Can you imagine knowing at 13 that you will never give birth? Surrogacy is her only hope.

    For the last couple I personally worked with, the mom started to hemorrhage during delivery of their first child. In order to save her life, a hysterectomy had to be performed. At 29 years old, she was never going to be pregnant again. Two weeks ago, I was honoured to be the one to bring their son into this world. The look of joy and wonder in their faces still brings tears to my eyes. That baby was never a commodity, nor did I for one second feel exploited. I was truly blessed to have been part of this miracle.

    The stories, ladies and gentlemen, are endless, as is the pain in their voices when the parents talk about their situation.

    My agency has yet to have a gestational carrier change her mind. No woman going through my service has ever been exploited or forced into this. There are safeguards already in place, with reputable counsellors who make sure what her motivations are. The prospective gestational carriers have to be self-supporting and not on welfare. The couple has to have a true medical reason for going through surrogacy. Both sides have to have separate legal counsel. The gestational carrier has to be physically able to carry another child and must be medically fit to attempt another pregnancy.

    I absolutely put my heart into every match I make. I sincerely care about everyone involved. Surrogate parenting is a wonderful family construction option for many families. It can be a joyous, happy experience for both the family and the gestational carrier.

    In closing, I hope you will take some time to review what I and my colleagues have presented. Hopefully, rather than banning compensation for gestational carriers, intermediaries, and egg and sperm donors, you can remember the people this would affect the most. Ultimately, we can regulate this practice by setting limits on compensation, as well as by legislating reputable agencies that would in effect be enforcing these regulations with criteria such as medical, psychological, and legal advice.

    Thank you.

Á  +-(1155)  

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    The Chair: Thank you very much, Ms. Wright and all witnesses.

    We'll now move to the question-and-answer section, and we'll begin with Dr. Lunney.

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    Mr. James Lunney: Thank you, Madam Chair.

    I'd like to thank our witnesses for their testimony. I certainly want to recognize that the medical complications and the challenges people face that damage their fertility are certainly heartbreaking and very difficult for everyone involved. I certainly know what it's like for someone to live with cancer, fighting cancer, with colostomies and all the difficulties that are involved. We certainly relate to the difficult experiences in your families. Of course, it is a difficult and emotional issue for all of us. Hearing these stories as we have tried to wrestle with these issues all the way through, we're certainly aware of the emotional aspect to this debate in many areas.

    Mr. Kottler, let me pick up on something you said about evidence from other countries demonstrating that an open system would stop donors. We're aware that Sweden is one country that went to an open system of registration and donation of services. Initially, there was a drop-off of people willing to participate, but we understand that there was a change in people participating, that they got more mature donors coming forth, more thoughtful people perhaps, and that the crisis that was anticipated did not materialize. You mentioned that you are aware of countries around the world where they stopped open donation and it shut the whole thing down. Could you give us an example of those countries?

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    Mr. Les Kottler: I can give you the example of the United Kingdom, where, as you probably are aware, the Human Fertility and Embryology Authority, in about 1990 or 1991 I think, went to a system where compensation, other than for expenses, was banned, and there was a huge drop-off in the number of gamete donors and surrogates. They have since changed because of that. They have changed the HFEA law in the United Kingdom to redress that balance. That's an outstanding example of where the law has actually been changed and they reverted to the system they had before the HFEA was introduced.

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    Mr. James Lunney: I go over to Joanne Wright. Joanne, you expressed your own personal experience as a gestational carrier and how meaningful it was for you to help couples and so on. Did you do this as an altruistic act, or were you compensated? If the latter, how much were you paid for your contribution?

  +-(1200)  

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    Ms. Joanne Wright: I was compensated for the risk and the inconvenience to my family. I can tell you, quite honestly, that it was less than $2.50 an hour.

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    Mr. James Lunney: Could you put on the record what you were actually paid, then, or do we have to calculate it by ourselves?

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    Ms. Joanne Wright: Calculate.

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    Mr. James Lunney: All right.

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    Ms. Shirley Solomon: My mother is in the Baycrest Centre for Geriatric Care and has full-time care, and I can tell you that this costs my brother, my sister, and myself $50,000 a year for these caregivers. And they're caregivers, not nurses, I might add. My mother has now had these helpers for two years, and there is nothing altruistic about them coming and looking after my mother and diapering her--my mother is extremely frail now--and putting her in her wheelchair, and bathing her, and doing all those things for her. I am deeply grateful for the things they do for my mother, and we treat them with the utmost respect--our mother's caregivers.

    We pay them because we feel they are providing warmth, and love, and affection, and a tremendous gift to mother. I wouldn't dream of not paying them. And they do things for my mother that I wish didn't have to be done.

    I've met a number of surrogates over the years, I must tell you, when I was doing my television program, and Joanne Wright is one of them. Most of them are like Joanne; they are middle-class women, by and large. They have families. Nobody lives in a big fancy house. Nobody drives big fancy cars. None of these women are greedy women. That's not to say that we should decide, in our society, that they should work for free. No one works for free. None of you work for free. This isn't a society where we work for free.

    If these people are helping us and giving us this gift, they should be compensated. However Joanne was compensated, I think the average surrogate carrier probably makes around $18,000 or $20,000 from this for months of.... And any woman who's there, and any husband who's had a wife who has spent four months vomiting into a toilet and then the next five months getting bigger and bigger and more uncomfortable and then going through labour....and ladies, is there anything worse than going through labour, or more difficult or painful? Maybe some things, but it's an experience none of us have ever forgotten. And we can tell you detail by detail, moment by moment, what that was all about. So that's what these women go through for us.

    And to say that Canadians would altruistically come forward and do all this without compensation is beyond naive. It's ridiculous.

    Part of the reason my husband and I came today is that we have dreams and hopes for our children, and we believe that part of political freedom in this country is the right to choose how we wish to create our families and that our government has no right to tell us how to do it. Having said that, I do believe there should be regulation. And I believe historically that if we take a look at this country and how this has been dealt with, it has been dealt with with respect, with nobility. There is no one in this room who has had a child, or is planning to have a child, through surrogacy who could tell you that they feel exploited, including many of the surrogates Joanne knows and we have met.

    I don't know where this concept comes from. I really don't know. But I beg you to be open-minded and fair and to think about the children, like Stephanie and David, who want to have a biologically related child. I don't understand why that should be a problem for this committee and why you believe you have the right to invade our privacy by making these choices for us. And if you stop the payment to the surrogates, and to the egg donors, and to all of the people who are part of this, then you will essentially have destroyed the system. None of these people, none of the people who are here, who don't have children, who want to have children, including our children, and none of the Canadians in the future...we'll all go underground.

  +-(1205)  

    You want to make criminals out of us? I can't believe this government would do that. I can't believe I came to a country that would want to make me a criminal for wanting to have a grandchild I'm biologically related to. This is 10 years, $500,000; that is what I understand the bill is looking at now.

    That's what murderers get. Even rapists don't get 10 years. You would do that to us because we want to have children biologically related to us? That is a travesty. I can't believe this government....

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    The Chair: I think Dr. Lunney has another small question. Then we'll move on to Ms. Sgro, please.

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    Mr. James Lunney: Thank you for your impassioned intervention, Mrs. Solomon.

    I want to go back to Joanne Wright because she's one of the few agencies. This is an unregulated area, and we are interested in understanding better how the system has been operating.

    Mrs. Solomon mentioned a figure of $18,000 to $20,000, in her opinion, as to what a surrogate would be receiving for compensation. Would you agree with that figure, or would you like to comment on that?

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    Ms. Joanne Wright: That's the average amount. That's the average compensation in Canada right now.

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    Mr. James Lunney: Okay, thank you very much.

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    Ms. Joanne Wright: And we've regulated ourselves.

    Ms. Shirley Solomon: That's what you get for flipping hamburgers at McDonald's for one year.

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    The Chair: Thank you, Dr. Lunney.

    I believe Ms. Sgro is next on the list. Ms. Sgro, the floor is yours.

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

    To all of our deputants, I thank you very much for being courageous enough to come out and share your thoughts with us.

    My first question is to Joanne Wright.

    Joanne, as a woman, I'm still having difficulty understanding that.... I think it's fabulous that someone would do this, but I'm trying to understand it still, what you'd go through in this process. I find it unbelievable and very difficult that people would actually go and do this, even though they don't know the couples, that they would do this and go through the risks you go through.

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    Ms. Joanne Wright: Absolutely. There's risk for everything, and if you do understand what we're going through, the motivations have to be there; it can't be money-oriented. Women call me every single day saying they can do this, and quite honestly, they sound just like me. They're middle-class women who have already completed their families and want to go on to help another couple complete their family as well.

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    Ms. Judy Sgro: Do you know of any surrogate mothers who decided afterwards that they weren't going to give up the child?

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    Ms. Joanne Wright: We have not had a case in Canada where the gestational carrier has changed her mind.

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    Ms. Shirley Solomon: Sorry, forgive me, but these are not surrogate mothers; these are surrogate carriers. There is no biological connection between these babies and the surrogate. They are carriers. The eggs are from the family, the intended family, sometimes, or others, and so is the sperm. They are the carriers. There's no issue here. There's no biological issue here in Canada.

    I don't speak for everyone, but I think that's how we'd like to see it remain so that there is not that connection.

    Please, we would prefer as a group that you not refer to these people as “surrogate mothers”. You met the mothers of the children today. They weren't the surrogates. They were the women who were sitting in this room. Those are the mothers.

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    Ms. Judy Sgro: To Les, you talked about the moral compass, and so on. For you to understand where we're coming from, we're asked to look at legislation and to do the right thing. As we went through this process--and I'm going to speak only for myself--I had the feeling that we were letting people down, and people were being exploited, and so on and so forth.

    From the spring to today, I understand the issue much better, and I thank both you and your wife for sharing very passionate feelings on this. Our job is to try to do the right thing for everyone, to try to be protective and to be the big brother, and so on. It's to make sure we do the right thing, which is not always easy. That was where we were struggling with this legislation that you have so many issues with.

    You've helped me understand a lot of it, but how do we do our job, that is, to make sure we allow you and your family to build a family, but still protect from the exploitation of others? Reasonable expenses--does it need to be more specific, or can we say leave reasonable expenses in there?

  +-(1210)  

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    Mr. Les Kottler: First of all, as has been said a number of times this morning, you need to regulate, not prohibit. I think nobody around this table would have a quarrel with the idea of regulation. I don't think it's our place to get involved in what the regulatory body might deem appropriate compensation; I think that's probably for another day.

    But I think historic precedent in Canada, at least from all the research most of the people around this table have done--and I think it's been pretty clear to you how much work we've put into this--would tell you what those kinds of amounts and those areas would be. I think you will be protecting everybody if you regulate this, and I think you will be protecting everybody from exploitation if you take into account the historical precedent of what has happened until today.

    This system has been unregulated, but self-regulated by Canadians involved in it. We've all been self-regulated for 10 or 15 years, and nobody, to the best of our knowledge, has ever had any problem with it. But we do want it to be regulated: the clinics, the intermediaries, the amounts of compensation; otherwise it could become a free-for-all, and we don't want that any more than you do.

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    Mr. Michael Koshan: May I interject on that? I want to add something.

    Our job here is to plan the forest before planting the trees. We want to take it out of prohibited activities and put it into controlled activities. We can plant the trees when we decide what the regulations are. That's too complex to deal with right now. We want to get the bill into a place where we can control it, we can regulate it, we can protect the interests of all Canadians, rather than thinking about all the details right now and confusing ourselves over that.

    Alan, in the last session, said it perfectly: “big picture”. You deal with an issue first by looking at the big picture--getting that right, getting that straight--and then going into the specifics. I think we can all hobble about discussing what specifics should be in the regulations right now, and we can all have our own opinions, but I think we need to get the big picture right first before we can delve into the specifics. I think the specifics we're all trying to deal with should be dealt with in the regulations, as has been repeated many times today. Thank you.

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    Ms. Judy Sgro: Thank you very much.

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    Ms. Shirley Solomon: May I say something?

    I believe it is so important for us in this country to continue as Canadians to believe that freedom of choice and freedom of privacy remain an important barometer. I think in many ways that's how a country looks at itself. When there is an issue of privacy and of choice, and of governments deciding how we will create our families, I think there's something deeply offensive about it.

    I agree with what's been said today by many people about regulations. But our idea of regulations and your idea of regulations may be very different. I believe all people involved in this, including the intended parents and others who are involved in this, should be part of the counselling session. I think people should make informed choices and that all parties involved should be treated with respect and honour and truth. We think the government's place is not to tell us they're going to ban this process by not compensating these people, but to say, “We know this is going to go on”--we've all told you we'll go underground if we have to--“Let us do the best we can for all Canadians who want to have families like this.” This way we regulate the system so that everyone is well looked after.

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    The Chair: Thank you, Ms. Solomon. We'll go now to Madame Thibeault, who has a question or two.

[Translation]

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    Ms. Yolande Thibeault (Saint-Lambert, Lib.): Good afternoon, ladies and gentlemen.

    Ms. Wright, I would like you to provide me with some clarification. For the past few months we here in the committee have been talking about surrogate mothers; however, I've never had a clear idea about how many people this involves. You said that you have been running a clinic for several years, that you have matched surrogate mothers and couples who wanted to have children. How many couples, individuals and births resulting from your interventions are we talking about?

  -(1215)  

[English]

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    Ms. Joanne Wright: On average we're probably talking about between 50 and 100 couples a year making a match, but probably not that many babies being born. Not everybody is 100% successful. We might be talking about 40 to 50 babies a year. So we're not talking about a large number. Just to clear it up, it's also gestational carriers. They have no biological link to this baby.

[Translation]

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    Ms. Yolande Thibeault: Perhaps we're going to have to find an equivalent French term for “gestational carrier”. I don't know the French word.

    When you talk about between 50 to 100 couples per year, to the best of your knowledge, are these the figures for your clinic or are these the figures for all of Canada?

[English]

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    Ms. Joanne Wright: Do you have “surrogate carrier” in French? Is there such a term?

    I don't run a clinic. I don't do any IVF procedures. But I do mediate and match couples with gestational carriers. Those are my numbers.

[Translation]

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    Ms. Yolande Thibeault: For your clinic, and not for all of Canada, is that right?

[English]

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    Ms. Joanne Wright: I work across Canada.

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    Ms. Yolande Thibeault: Oh, you do.

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    Ms. Joanne Wright: I don't have everybody else's numbers. I'm just speaking for myself.

[Translation]

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    Ms. Yolande Thibeault: You are speaking only for yourself. Thank you very much.

[English]

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    The Chair: Are there any other questions?

    Seeing none, on behalf of the committee may I thank you very much for coming forward and sharing some of these very deep feelings and beliefs with us. We have learned a lot this morning. We're grateful not only to the last panel, but to all the people who participated in this exercise with us. Thank you very much.

    This meeting is adjourned.