Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 2 - Evidence - Meeting of February 25, 2004
OTTAWA, Wednesday, February 25, 2004
The Standing Senate Committee on Social Affairs, Science and Technology, to which was referred Bill C-6, respecting assisted human reproduction and related research, met this day at 4:05 p.m. to give consideration to the bill.
Senator Michael Kirby (Chairman) in the Chair.
[English]
The Chairman: Honourable senators, we are here to continue with our witnesses on Bill C-6, respecting human reproduction, assisted human reproduction and related research.
Senator Morin: May I raise a point order before we start? At the last meeting, we were told by Dr. Green of the Canadian Fertility and Andrology Society that 40 per cent of the Canadian blood supply came from the United States and that the American donors were paid. In the book that was given to senators, we have a letter from Dr. Graham Sure, CEO of the Canadian Blood Services, who states exactly the opposite of what was said. He states that 100 per cent of the Canadian blood supply comes from Canada and is completely altruistic.
There was much debate, you might remember, on the matter of payment for sperm, and a parallel was drawn with blood. It is completely altruistic in this country and the letter is in the binder.
The Chairman: Thank you, Senator Morin. We have four speakers on our first panel. First, we have Joanne Wright, Phyllis Creighton, Shirley Solomon, and, by videoconference, Juliet Guichon.
I thank all of you for coming. Ms. Wright, thank you very much for coming here this afternoon. Please proceed.
Ms. Joanne Wright, President, Canadian Surrogacy Options: Thank you very much for inviting me today to give you some fresh insight and dispel some myths about the world of surrogacy.
I have been happily married for nearly 25 years. I am also the mom of three children, ages 21, 19 and 17, and I have had the privilege of helping three couples to become families by being their surrogate.
Having completed our family, and knowing the joy that children can bring, it seemed so sad that many couples, through no fault of their own, are unable to experience this fulfilment.
Even before we had children, I had heard the word ``surrogate'' and filed it away for future reference. During my pregnancy with our third child, I watched a documentary on surrogate carriers, and I knew this was something that I could do.
In researching this, I found that my only option at that time was to travel to the United States and meet with a surrogate attorney in Dearborn, Michigan. It was through this reputable agency that I was to receive the counselling and direction that I needed to accomplish my goal. Their professionalism and credibility were second to none at that time.
The agency also introduced me to my couple. I was going to be a gestational carrier, which is a woman who has no biological link to the child she is carrying. The embryos were created using the eggs from the intended mother and the sperm from the intended father. We did the IVF procedure and embryo transfer in March 1988. In December of the same year, their son and daughter were born.
It was such a wonderful sense of accomplishment and pride. I never at any time felt that these babies were any part of me. They belonged to their parents, but I did feel like I had made a difference in the world.
I did not plan on doing this a second time. A friend who knew a couple that were searching for a surrogate approached me. Once I met with them and heard their story and how much they wanted a child but were unable to carry a baby, how could I deprive them of this? The procedure was done in May of 1991, and their baby boy was born in February of 1992. We had a wonderful birth and a very supportive hospital staff, and I simply had the feeling that my best friend just had a new baby, no attachment feelings at all.
A gestational carrier willingly puts her emotions, hormones, body, intimacy with her husband and her active lifestyle with her children second in order to carry a baby for someone else. She has the potential risk of losing her reproductive organs, other gestational and delivery complications, possible transfusions and, yes, perhaps even her life, to help a couple achieve their dream. She does this knowingly and accepts this risk.
The compensation that a gestational carrier receives, if you break it down, works out to be about $2.50 an hour. Does this sound like a lot of money to entice someone to do this?
Since 1992, I worked on numerous committees with well-respected lawyers, doctors, social workers, and clinic staff all trying to put some reform and reasonable regulation into surrogacy. We did all discover — quite surprisingly — that both potential surrogates and intended parents were getting lost in the shuffle and getting the runaround for lack of information. We decided that someone should be available to take their calls and match up couples with carriers. I volunteered to be that person and streamline the communication process as a third party not involved in their medical care. The rest, as they say, is history.
I am the director of Canadian Surrogacy Options, Inc. My passion has always been about surrogacy, and this is why I took my passion a step further to create this liaison service, not only for couples but also for women contemplating surrogacy as well. To educate and inform people that surrogacy is truly a viable option for couples wanting to have a biological child, yet unable to carry one themselves.
I would like to reassure the senators that surrogacy is not how people anticipated having their children when they were first married. Yet, unfortunately for many, medical circumstance has made this the end of the road. When couples approach me, they have exhausted all medical intervention. It is my hope that by also legislating and regulating agencies in Canada, we are giving these couples new hope.
By having an agency available such as mine, people would know that the government is listening, and by licensing it, they can be assured there are professional, responsible people, dealing with these most personal issues.
I am a compassionate guide, advocate and stable force in creating a balance in supporting both a gestational carrier and the intended parents on this journey. I absolutely love what I have been doing. It has been a bit daunting at times and somewhat challenging, but it has been extremely rewarding. When couples call and tell me that their carrier is pregnant and, better yet, when their new baby has just been born and they have sent me pictures, it does not get much better than that.
Unfortunately, there probably is not a story that I have not heard, and it still breaks my heart every time I hear someone's personal struggle with infertility. For example, the last couple I worked with personally, during delivery of the daughter, the mom started to hemorrhage. In order to save her life, a hysterectomy had to be performed. At 29 years old, she would never be pregnant again. On November 9, 2002, I was honoured to be the one to bring their son into the world. The look of joy and wonder on their faces still brings tears to my eyes. That baby was never a commodity nor for one second did I feel exploited. I was truly blessed to have been part of this miracle, and I ask the committee not to take this experience away from other couples and gestational carriers. The stories are endless as is the pain in their voices when they talk about it.
We have 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 already safeguards in case with reputable counsellors to explore the surrogate's motivations. The prospective gestational carriers have to be self-supporting and financially stable. The couple also have to have a true medical reason for going through surrogacy. Both sides have separate legal counsel. The carrier has to be physically able to carry another child and medically, it must be safe for her to carry another pregnancy. As you can see, there are many issues that only professionals such as myself would be able to foresee and guide couples as well as surrogates through them.
In response to some of the concerns regarding how the children feel, according to a study conducted by researchers at the Family and Child Psychology Centre at Centre City University in London, England, I quote Professor Susan Golombok:
Fears about the impact of surrogacy on the well-being of children and families appear to be unfounded. In fact, the mothers of children born via a surrogacy arrangement show more warmth towards their babies and are more emotionally involved than is the case in families where the child is conceived naturally ... It is often assumed that surrogate mothers will have difficulties handing the child over following the birth. In fact, we found only one instance of the surrogate having slight doubts at this time, with all other mothers reporting no problems.
These are the findings from the world's first controlled systematic investigation of surrogate families.
I absolutely put my heart into every match I make. I sincerely care about everyone involved, and I need to know that everyone will have a positive, memorable experience.
Surrogacy is a wonderful family-building option for many people. It can be a joyous experience for both the family and the gestational carrier and her family. I have helped people along the way with personal experience and a common sense approach in their quest to make the couple a family.
In closing, I hope that my experience has helped you to understand how Bill C-6 will affect many Canadians, and that through education, information and regulation, this can be a viable and positive family-building option.
I would ask that the honourable senators carefully review what my colleagues and I will present and realize that instead of banning compensation for gestational carriers, intermediaries and gamete donors, we should remember who this would affect the most.
Ultimately, we should regulate this practice, including limits on compensation, direct and indirect compensation, as well as licensing reputable agencies such as mine, which would assist in the enforcement of regulations with criteria such as medical, psychological and legal advice.
The Chairman: Thank you very much, and thank you for taking the time to give us a written copy you of your statement.
Ms. Phyllis Creighton, Member, Advisory Committee on Reproductive and Genetic Technologies: I come from the Health Canada Advisory Committee on Reproductive and Genetic Technologies. I began as a member when it was introduced in 1995, and its last meeting was in 2001. I have a written paper, which I submitted, so you will have it before you. It says some more about who I am, in case you are curious.
I will speak partly from the advisory committee's point of view and partly from my own.
The advisory committee supported the prohibitions on commercial surrogacy now set out in proposed 6(1), (2), and (3). Our committee's view is that the practice of surrogacy involves the social evils of the commodification of children and the exploitation of the vulnerable. With the baby broker system, a woman becomes a carrier, a rent-a-womb, and the baby she bears is made a commodity for payment and transfer.
A woman who gives birth has responsibilities of care towards her infant, but no mother — which she is — in ordinary understanding and under common law, has the right to treat her baby as a saleable chattel.
Commercial surrogacy also treats women's reproductive capacities as a commodity — a demeaning attitude that promotes an improper role for women as breeders. Canada must learn from the U.S. experience, with its unsavoury catalogues of surrogates and Internet marketing of bodies and babies.
Bill C-6 in clause 2(1) sets out as its first governing principle for the regime being legislated the priority of ``the health and well-being of children'' born of the technologies. Any baby conceived as a saleable, transferable possession is robbed of human dignity and respect. This assumption undermines its well-being — indeed, it diminishes the well- being of all children. Infertility and childlessness are anguishing, but they are not new conditions. Adoption is one way people have met their need.
In adoption, payment to biological parents for the child is not allowed. Why should it be allowed in this new model of meeting the needs of the childless? Since you cannot give up your baby for adoption before it is born, and you come to know it for a few days, why should you be able to make a so-called contract to do so with surrogacy? If one cannot buy an organ for transplant to save life itself, why should one be able to buy a baby?
Payment for pregnancy would commodify it as a reproductive service and thereby diminish its dignity. Neither is such a practice conducive to the equality and dignity of women. The Royal Commission on New Reproductive Technologies not only pointed out offences to human dignity in the commodification of women's reproductive capacities, and of the children, it identified actual and potential harms to children and families.
Surrogate mothers often want to be recognized as significant and to be known to their children, judging from surrogate chat lines. However, most commissioning parents seem to view their surrogate as a commodity, a convenience to be discarded after the baby is born. The literature also documents harms to marital relationships, to the surrogate's children, and to her inner peace since many surrogates experience grief and loss, possibly enduring though probably silent. Perhaps more women than we know find the truth of American surrogate mother and author Elizabeth Kane's claim that ``surrogate motherhood is nothing more than the transference of pain from one woman to another.''
The prohibition of consideration in clause 6, consideration for things such as offer or sale — the details are in your legislation — closes the front door, but the provision for payment of a surrogate mother's receipted ``expenses'' in clause 12 opens the back door. The advisory committee did not favour paying expenses. What will count as expenses? A weasel word.
I find more dubious still the provision in 12(3) for reimbursement for loss of work-related income during her pregnancy. ``Risk to her health or to that of the embryo or fetus'' is vague. How much risk? Stress itself is known to pose risks for the fetus. Judging from personal accounts, surrogacy causes emotional tensions as the pregnant surrogates try to detach themselves — leave aside the question whether we want women to detach themselves — from the life growing within their bodies, especially after quickening and the bonding with the fetus that research has shown virtually all women experience.
Who will sign the letter stating her inability to continue working, the physician who initiated her pregnancy, his or her partner? Most surrogacy today is gestational involving in vitro fertilization. Consider what that involves. She cannot work through her pregnancy, as most women normally do — no surprise there — with massive hormone injections — the long-term consequences of which we really do not know — the risk of premature birth, Caesarean section, all that. Will such letters become routine, and will surrogacy thus in fact be paid? Who will monitor the issuing of these certificates? Who benefits — clinics with a lucrative practice? Affluent commissioning parents? Vulnerable and, by evidence thus far, low-income birth mothers?
I resent the likelihood that no amendment to the bill can be made at this stage. I can only hope that the concerns and questions I have raised will be examined at the regulation stage and when the three-year review comes. I have had to skim over this presentation somewhat. It is fleshed out a little more in the printed document.
I am distressed at these and other defects in this bill. Yet, I believe that Canadians, and especially women and children, need this bill to be passed for the protection of their health, dignity, and rights. Endless discussion has let the fertility business grow by leaps and bounds unregulated in critical aspects. This open market must be brought under legislated control. In the absence of legislation, things can only get worse.
I have one other long-standing concern. Given the priority of the health and well-being of children — which is principle one in the beginning of your bill — the failure of Bill C-6 to guarantee the human right of offspring born of surrogate mothers, donor gametes or embryos, to know the identity of their progenitor is an ethical and legal flaw. The key element of their own identity is kept from them. That is wrong.
This deprivation might be felt keenly by gamete donor offspring, since under clause 18(3) they gain the right to access health reporting information about their donor. Anonymity and secrecy in gamete donation should be ended as an injustice to the offspring. Openness is increasingly the worldwide norm, and it might be an obligation under article 2 of the U.N. Convention on the Rights of the Child, which Canada has signed.
As for the surrogate mother, she should not only be known by name to the child, but should remain in relationship with the child. If we are building families through technologies that are honourable, we need to recognize that a mother is for life. Social parents of integrity need to be challenged to make and keep the practice of surrogacy human by acknowledging and accepting into their web of relationships the woman with whom their child was bonded in utero in the only true one-flesh unity there is. There is a lot of evidence that bonding of the fetus to its mother takes place before birth.
In my opinion, the trouble with this bill is that it lacks real moral imagination, as does the existing practice of surrogacy.
Ms. Shirley Solomon, as an individual: Thank you for the opportunity to appear as a witness before your committee on the matter of Bill C-6. It means a great deal to my husband, my daughter and my son-in-law, and me to be here today. I am here to express my heartfelt concerns about the terrible impact I believe this proposed legislation will have on the lives of thousands of Canadians who will be deprived of one of life's greatest joys: Having a child and building a family.
I belong to such a family. It is not easy for me to speak so publicly about such a deeply private matter. However, I feel I have no choice because the future of my family and many other Canadian families is at stake here, and rides on the outcome of this bill, which I truly hope and pray will not be passed.
My daughter, Stephanie, is 32 years old and has been married to her husband, David, for three and a half years. Stephanie suffers terribly from one of the most severe forms of a disease called Crohn's Disease and colitis and has been in and out of hospitals constantly since she was 16 years old. Seven years ago, she became so gravely ill that she had to undergo surgery to remove her entire colon in order to save her life. She wore a special bag attached to her stomach so that she could defecate. As traumatic as this was for Stephanie at such a young age, her doctors said that they hoped the operation would bring an end to her pain and suffering. However, within months her disease returned with a vengeance and ever since Stephanie has had to take 20 pills each and every day, and still suffers from pain. Last year she hemorrhaged and we almost lost her. She required massive blood transfusions for her survival, and then she was put on a drug of last resort called Remicade — a drug that she receives every six weeks in a four-hour transfusion. Thank God, so far, this drug has kept the pain and the worst aspects of her disease in check.
She is a courageous young woman with a loving husband and she has always dreamt of having children of her own, but two leading high-risk pregnancy specialists have told her that because of the seriousness of her disease carrying a child would put her life in jeopardy. She was devastated by the news, and so was I, and so was her father. She repeatedly told me she was a failure as a woman, as a wife and as a daughter, and she was extremely depressed, and even during the worst moments of my daughter's disease, I have never seen her like this. For months and months she was inconsolable, she was heartbroken.
After looking at all the options, much soul-searching, and speaking to our rabbi, we as a family made a decision to find a gestational carrier, a surrogate to carry a child for Stephanie and David.
Stephanie's profound sense of loss and failure turned to hope as she and David learned that through reproductive technology and using Stephanie's eggs and David's sperm a gestational carrier could carry the baby for them. They were overjoyed that they would have a baby with whom they were biologically connected.
All our hopes were short-lived when we learned about Bill C-13, now Bill C-6, that would prevent them from realizing their dream. That is because Bill C-6 will not allow surrogates to be compensated, except for receiptable expenses. Maybe that is what some people want, but that will mean the end of gamete donation and surrogacy in Canada, something that has been overwhelmingly demonstrated in other countries where donor and surrogate compensation are outlawed.
A perfect example to illustrate this is what happened in the United Kingdom 10 years ago where they banned compensation to surrogates and donors except for expenses. This resulted in a serious and dramatic decline in the number of gestational carriers and donors — so much so that the law recently had to be changed to allow for fair and reasonable compensation.
This should be a cautionary tale to our own government in its zeal to pass Bill C-6. This bill must be amended to allow fair, reasonable and regulated compensation in addition to receiptable expenses. It is totally unrealistic to expect a surrogate to go through pre-pregnancy treatments, nine months of labour and delivery without being fairly compensated to do so.
To believe that a stranger will do this for altruistic reasons is naive in the extreme. If family members or close friends were coming out in droves to offer themselves as donors and surrogates out of acts of altruism, there would be no demand for non-family donors and surrogates and clearly that demand exists.
Neither my daughter, who is an only child, nor my son-in-law, have any family members who would do this for them. Even if there are family members who are prepared to be donors and surrogates, there needs to be a profound awareness of the psychological coercion involved when a family member is asked to be a donor or a surrogate and that family member says ``no.'' Saying ``no'' to a couple desperate to have a child could ultimately be responsible for the destruction of family relationships.
More important than all of this is the fact that, when it comes down to it, government does not have the right to play God, but that is precisely what this government is attempting to do with Bill C-6. What right does the state have to intrude in this highly personal and private decision?
There is an extremist, big brother quality about this bill that I find reprehensible. It will not stop infertile couples like Stephanie and David from wanting to have children. If this bill becomes law, these desperate couples will either go to the United States, with its largely unregulated environment, where donors and surrogates demand often-exorbitant fees, or they will go underground in Canada, even if it means breaking the law. Bill C-6 will turn people like my daughter and her husband and countless other decent people who are here in support of what we are talking about today into criminals. They will have penalties normally reserved for second-degree murderers. Imagine sentencing my daughter to 10 years in prison for the crime of wanting to have a baby.
This is a shameful, un-Canadian, egregious, punitive and draconian piece of legislation — if not a flagrant violation of our Charter of Rights and Freedoms. I am truly horrified to find myself sitting here in Parliament pleading for the right of my daughter and son-in-law and many thousands like them to choose how they create and build their own families in this country that I love so much. That choice is the absolute right and the human right of all Canadians, not just those who are fortunate enough to bear their own children. This bill will bring unimaginable pain and suffering to infertile couples all over this country.
I cannot believe that this Senate in good conscience would allow a law to be passed that would penalize people like Stephanie who for medical reasons and through no fault or responsibility of her own are not able to bear their own children.
On a final note, last year, we were so worried that Bill C-13 would pass that Stephanie and David began a frantic search for a surrogate. They found a wonderful woman who agreed to be a gestational carrier for them using Stephanie's eggs and David's sperm. We will never forget her. She is still in our lives. She has changed our lives forever.
Three weeks ago, Stephanie and David's dream finally came true. Their baby daughter Sohara Simone was born. They are ecstatic. I have never seen them happier than at the birth of their miracle baby.
For years, my friends who have grandchildren have told me that there is no experience in the world like being a grandparent. When I thought it would never happen to me, it broke my heart. My heart is now filled with joy because I have been blessed with this beautiful healthy granddaughter. My friends were right; it is an extraordinary joy. I know how empty and incomplete all our lives would be without this baby.
Many of you here are grandparents. Can you imagine your lives without your grandchildren? I am sure you cannot. Not being a grandparent or a parent will be the enormous price that many Canadians will pay if Bill C-6 becomes law.
Please, please, do not let that happen.
The Chairman: Thank you for your obviously heartfelt testimony.
The fourth and final member of this panel is Professor Juliet Guichon from the University of Calgary, who is coming to us by way of videoconference.
Please proceed.
Ms. Juliet Guichon, Professor, University of Calgary: Honourable senators, I have been asked to respond to two questions about surrogacy: Who is the mother and why should payment be banned?
I understand that the question of who is the mother has arisen because, as we have just heard, some witnesses have suggested that the birth mother is not the real mother, but merely a gestational carrier.
Among the range of difficult matters you must consider in Bill C-6, in my opinion this one is straightforward. The simplest case of surrogacy is where a woman conceives with her own egg and gestates the child. This conception can occur both because of artificial insemination and also because of sexual intercourse. In that regard, I would point out that in clause 3, the definition of ``surrogate mother'' does not contemplate that the conception might be initiated by sexual intercourse. If sexual intercourse does initiate a conception by which it is intended that the child will be transferred, then that is a potential loophole for people who wish to have children in this way to escape the regulatory framework that you foresee.
With regard to those children, children born where the egg has come from the woman who carries the child, there is no question that she is the mother. She might be called a surrogate, but that is because people who are interested in the outcome wish her to be considered not to have a claim to her own child. However, the child is hers and so are the responsibilities for caring for it under provincial family law. If she chooses to transfer custody of the child, then she is entitled to do so under provincial family law legislation. Even then, there is a period after birth in which she may not transfer the child and she can change her mind during the cooling off period. During the cooling off period she is still regarded the mother.
The Chairman: Professor, you have a fairly long presentation and you are doing a fair bit of ad libbing in addition to the length of your text. We can cover much of this when we come to questions and answers. You do not necessarily need to read the text because we have it. Could you just make the major points? That would be helpful, because I want to ensure we have time for questions.
Ms. Guichon: Certainly.
With regard to the technically more complex form of surrogacy where the egg comes from another person, I would argue that the mother is still the birth mother and the importance of regarding her as such lies in the fact this is in the child's interest. It is important that people in the room know who the mother is in case the child needs medical care. I have outlined other reasons in my text why it is important that the birth mother be considered the mother at law.
I also suggest that if there is a child born because of an embryo transfer or because an ovum was inserted in a woman who carries a child to term, all three people be registered on the child's birth certificate. The ovum provider, the sperm provider and the birth mother should all be acknowledged, because they are all important in the child's life.
There are five good reasons why payment should be banned. One is that it creates an incentive for brokers to operate to the detriment of women. Brokers such as Richard Levin and the late Noel Keane have demonstrated that in two cases that I can outline. One had to do with the infamous Baby M case with Marybeth Whitehead as birth mother, and the other was the very troubling Diane Downs— case. In both those cases, the women were interviewed by psychiatrists — whom I presume to be independent, although I do not know that they were — said that these woman would not be good people to participate in this. Those opinions were overlooked and the women were encouraged to go ahead and, as you know, the Baby M case was a bit of disaster. In the Diane Downs case, the woman was very troubled and almost a year to the day after she gave birth to the child she murdered and attempted to murder her other three children.
The point is that, when money is at stake, the American practice shows us that brokers can be tempted to operate to the great disadvantage of women and their children.
The second reason payment should be banned is that it entices women to act against their own interest. In the poignant testimony you just heard we heard nothing about the effects on the pregnancy of the woman who gave birth, how she is doing now and how she will be doing in 10 years. We also heard that it is unrealistic to expect people to do this for free. Is that not just the point? Since the process of becoming pregnant, labouring, giving birth and lactating is not a benign process, why should women be induced to engage in it when the significant benefit of the process is not promised to them; that is, the joy of giving birth?
The Canadian Medical Association Journal reported a study conducted in Dearborn, Michigan of 41 women who are called surrogates, but are mothers. The study found that:
Nearly all the mothers confessed that they had underestimated how difficult it would be to relinquish their babies. Their symptoms of separation included uncontrollable sobbing, sleep dysfunction, aching arms, profound grief, and the inability to look at any baby for several months without experiencing sharp emotional pain.
The experience in adoption suggests that is not atypical and it is to be expected.
I would also draw the analogy, as Ms. Creighton did, with organ sales. We do not permit organ sales because we think it would be unfair to encourage people to act against their interests for the promise of money. The evidence to date suggests that relinquishing a child is not a benign process and to induce it by the offer of money would be similar to inducing the transfer of organs for money.
The third reason that banning payment is that these agreements create situations in which women operate under different norms — the norms of gift giving rather than market norms. I am not sure I have enough time to elaborate upon this, but I will give you an example.
When Marybeth Whitehead wanted to resile from the agreement, her lawyer argued that she could not be held to the contract, that it was not a contract because she was being paid $1.54 an hour. In other words, he said that this could not be regarded as a contract because it is unconscionable and therefore void. However, the judge would not have anything of that. He said it was a valid contract and the issue of the wage being well below minimum wage was irrelevant, and he held her to the norms of gift giving. He said that her original application to be a surrogate mother ``set forth her highly altruistic purpose that not all in this world can be equated to money.''
The point is that, whereas the commissioners are entitled to operate under the norms of the market and contract, which entails behaviour that is self-seeking, the mothers are held to the norms of gift giving and family relationships, which is to be endlessly self-sacrificing and altruistic. The point is that the laudable desire to help can actually make a woman vulnerable to enter into a situation that capitalizes unfairly on her altruism. These situations create an imbalance of justice to the disadvantage of the mother.
The fourth reason that payment should be banned is that payment can encourage others to take advantage of a woman's past reproductive or sexual suffering. I draw your attention to Phillip Parker, a psychiatrist whose study was published in the American Journal of Psychiatry in which he noted that a number of women who entered into the practice had a past sexual or reproductive event that they sought through the process to overcome. One woman quoted in the US News & World Report said:
I had an abortion several years ago which still troubled me. It was traumatic and I couldn't get it out of my mind. I had wanted another child, but it was impossible for us economically to raise another one. I couldn't replace the aborted child, but I wanted to compensate for it in some way.
My point in addressing this abortion situation is that this woman claims that she had an abortion about which she had unresolved grief. I have read stories where brokers tell the woman that she made a mistake but can make it better by going into this practice.
Women who have been sexually abused have also claimed that they were enticed into the process by some unconscious desire to overcome what they had been through. One woman said:
Deciding to be a surrogate was related to this. I hadn't reckoned how to cleanse my soul. How do I get my father's semen out of my body? I could accomplish this in the surrogate process. I could offer my body. This time, I was the one offering, freely. This would somehow cleanse my soul.
If women are suffering from unresolved feelings about a past abortion, a past relinquishment of a child under adoption, or from sexual abuse, it is not at all clear how entering into a surrogate arrangement will help them, because it creates another loss from which they must recover. Arguably, professionals should protect vulnerable women rather than capitalize on that vulnerability for financial gain.
The fifth and final reason that payment should be banned is that it can encourage cross-border surrogacy shopping. Two years ago, The Globe and Mail reported that Americans were engaging in this practice for a number of reasons. Canadian women want less than American women; the Canadian dollar is lower than the American dollar; but also our publicly funded health care system makes it advantageous for American commissioners to have the gestation take place in Canada with its prenatal care and childbirth coverage. That is not to say that Canadians do not go south and, as we have heard, more of them might go south for this practice.
However, the claim that Canadians will go south is hardly an argument in favour of paid surrogacy. The fact is that Canada and some U.S. states have different values. Whereas Canadians recognize the community interest in reproduction and attend to individual vulnerability, some U.S. states seem to believe that people are entitled to get whatever they want and sometimes only what they can pay for.
To conclude my answer to the two questions, the birth mother should always be considered the mother, and there are five good reasons to ban payment for surrogacy.
This practice requires further study. In my 2001 testimony to the Commons standing committee I affirmed the need for better data about the long-term outcomes. It is important to stress that this is the first time in human history that we have separated the gestational from the genetic aspects of maternity. The relationship between mother and child is the bedrock relationship in society. In rendering maternity uncertain for the first time in human history, surrogacy has unknown effects that are likely to be profound, complex and far-reaching. If surrogacy is to be conducted at all, it should be conducted as research in a licensed facility because we need to learn the long-term consequences for both mother and child. Before taking part, participants would then be invited to contemplate that they must give informed consent to participate as research subjects in a practice, the risks of which are not fully understood.
Senator Cordy: You can now see that, as legislators, when we are studying bills we get both ends of the spectrum in our deliberations and we hope that we come down on the wise side of things.
We heard both extremes when you were talking about why should payment be banned. We heard from two of you that payment should be allowed because, in fact, the surrogate mother is in fact using nine months of her life to help couples who are trying to have a baby. Yet we heard from two others that payment should be banned because it leads to Internet marketing incentive for brokers and those types of things.
I wonder, Ms. Solomon, and Ms. Wright, in particular, how would you deal with the idea of payment not leading to abuses of the system? How would you answer that?
Ms. Solomon: Honestly, we have said all along that what we believe in is regulation. I feel that it is important that there are caps put on the compensation so that they do not become exorbitant and out of the reach of couples who cannot bear children.
In fact, the industry itself at the moment has been a model of self-regulation over the years. I know that there was Baby M and Madam Guichon spoke about these two incidents, but there are thousands and thousands of surrogacies in North America and here in Canada. You can pull out a couple of example out of the air — in any situation, you can find problems — but I do believe that this has been a model of self-regulation. That is why there have been so few problems.
That is not to say we should not have regulation, because we need safety measures, even though you have not heard in this country, as you will hear from Dr. Librach and other people later, that there have been not been a lot of serious issues here and problems with surrogates coming back and saying, ``I want that baby. That baby is mine.''
In my own personal experience, if I may, the surrogate who was a part of our lives — and, my daughter talks to her every week and sends photographs to her — said the happiest moment of the entire process for her was the look on Stephanie and David's face, and ours as well, when we saw the baby.
Some people can be cynical about this. When I first heard the concept of surrogacy, I asked: Why would a woman want to do this? I asked the question myself. Then I spoke to people like Ms. Wright and other surrogates and I began to really understand. In a funny way, there is altruistic sensibility to it. There are often people who say, ``I wanted to make this enormous contribution to people who cannot have their own children.'' Our surrogate is married. She has a little girl six years old and her husband was as involved in this as she was. He was part of it all the way, even up until the delivery. We did not want anyone to be extricated from it. They became part of our family and we became part of theirs.
Senator Cordy: You said it would be fair and reasonable compensation. How would we make that determination?
Ms. Solomon: The industry itself, which has self-regulated all these years. Ms. Wright can give you that information. In our case, it was somewhere around $15,000 to $18,000. We wanted to give her more. She said that was not the main issue for her. That is the amount that we agreed upon. I am being very honest with you as to the amount. There were also some additional expenses that she needed for maternity cloths and any help in that area.
Ms. Wright: I have pretty much the same answer: Regulation and caps.
Senator Keon: This whole question of payment for this service has troubled a number of people who have been in touch with us. In other words, this is a service for the rich. It operates outside the Canada Health Act and I can point to somebody who talked to me about this and said, ``You better have $25,000 in the bank if you are going to get into this.''
If we are to pay a surrogate mother, should the surrogate mother be paid by government so that this service is available to everybody and not just to the rich? I would like both of you to answer that question.
Ms. Solomon: First, Senator Keon, she is not a surrogate mother. My daughter is the mother. She is the one getting up every two hours feeding the baby, changing her, taking her to the doctor, et cetera. She is the mother of this baby. David is the father. I think the term ``surrogate mother'' is a misnomer. We could go into this in more detail, but let me go on to the next question about the money.
My daughter and son-in-law and us, as a family, had to make some sacrifices. It is about sacrifice. Being parents is all about sacrifice. Anyone who is a parent knows that. There are some people right behind you here who have babies who have gone through this process. They are not rich people. They have struggled. They are people who desperately wanted to have a baby.
I want to raise this, because I am sure that this has gone through the minds of many senators here: What is wrong with adoption? I am going to say it out there because I am sure you are all thinking it. What is wrong with adoption? Well, nothing. Except, when we called our Rabbi and we went for counselling and guidance from him and I said, ``What do we do?'' He said, ``I am letting you know that I have people who have been waiting for a baby for five to seven years and still do not have one.'' I know people who have gone to Siberia and China. There are no babies in Romania; that has been shut off. There are no babies in Guatemala. People are desperately going anywhere in the world. There is a man spending a month in Siberia in the middle of winter so they can adopt a little boy.
It is very difficult. It is not like back in the 1950s and 1960s. When my daughter was in Women's College Hospital, we saw 12- and 13-year-old girls who were keeping their babies. This happens all the time. Morality has changed — I do not know if it is for the better — where babies keep their babies. There are not a lot of children to adopt anymore, which is why people go all over the world and still have problems finding babies. This is another option. I am not saying it is for everyone or that it should be.
With reference to your question, senator, concerning should the government be involved in this? Should they be paying for this service? If you have a problem with your septum and you are not breathing properly, OHIP will pay for your nose to be fixed. If you are having problems bearing a child, however, and you know you will not be able to do so — and, in my daughter's case, she had Crohn's and colitis; there are young women in their twenties with breast cancer or brain cancer who will never be able to carry a child — it is somehow punitive to penalize them and say, ``It is not bad enough that you have a disease that may ultimately either kill you or that you suffer from, we will not let you even have your own baby.''
I think your question is excellent. I have not thought about it because it has always been such an adversarial process, the whole thing about us and them — those for this and those against. I have not thought about it.
Ms. Creighton: There is no absolute liberty right to have a child. I might face death and I could not buy an organ. I want you to think about this. It is very serious. The rest of the country thinks we gave up making it possible to buy a person when we abandoned slavery. There is no way that a commercial surrogacy operation is not payment for a baby. The woman who carries this baby — the mother — does not get paid the full sum till she gives up the baby. That is the end of the story.
I think that there are many people in Canada who would say, ``Please do not do that to children. Children have a right to have their dignity respected and not to be made the objects of sales by their mothers.'' You underestimate the ability of people to rise to the occasion of altruism; you desperately underestimate it. In those countries that have abandoned the paid system for donor gametes have found another, more mature kind of donor has come along.
Please do not involve us in this kind of situation, and do not make it possible for children to say, ``Mommy, you sold my brother. Are you going to sell me?''
Senator Callbeck: Ms. Creighton, in the fourth paragraph of your brief, you discuss payment for pregnancy. You point out it is offensive to human dignity. Then you go on to say that the report identified potential harm to women, children and families.
I would like to hear your comment on that, please.
Ms. Creighton: I was part of an Anglican group that wrote a book. It spent two years studying the issue, wrote a book and submitted it to the Royal Commission on New Reproductive Technologies about it. We had no trouble finding stories, and Ms. Guichon also has the quotation I gave you.
Simply, it is transferring pain from one woman to another. It came from Elizabeth Kane. She had her story ghost written, first of all. She was a most generous, wonderful surrogate mother, and all she ever wanted to do was give a baby to someone else so that person would not have empty arms. Later, she wrote her own book. She consulted her own diary, and it is quite obvious from reading her story that she, in fact, was a vulnerable person who was very much guided by the kind of authority figure that the baby broker agencies in the United States has; they have group therapy sessions for people. Ms. Guichon could give you a string of cases that caused disaster.
Elizabeth Kane stated that it undermined her marriage. It destroyed her relationship with one daughter. The children in her family had bonded with this baby who was kicking inside her, so they had long-term harm result to them. Nobody knows and nobody will know unless we have what Ms. Guichon is calling for — namely, open study of outcomes. Nobody will know how many women feel the sense of loss for a long time.
Do not forget that one of the things I wrote about in my chapter in this book was the experts' opinion that not only almost universally do women bond with their fetus, unless they practice deliberate self-denial, deny their emotions, but also the fetus itself bonds with the birth mother. That is why making and keeping this experience human and maintaining relationship is so important.
I did not come here with a catalogue of bad cases. Maybe Ms. Guichon will help you, if you want.
Senator Callbeck: I wondered if you had any studies to refer to.
Ms. Creighton: There is the account of the Baby M. case, New York State Task Force on Life and the Law, and there is the account in Ms. Guichon's research paper for the Royal Commission and also in papers that she has written. Margaret Wente in August 2001 wrote about some horror stories, too. She called surrogacy a ``moral swamp,'' and Margaret Wente is a pretty market-oriented savvy writer in The Globe and Mail. I am sure you will agree.
Senator Trenholme Counsell: This is a very emotional subject. I can look at it from many points of view, right now, as a senator, but I am also a doctor and I also have an adopted son. The emotions that people have expressed are very real.
I would like both Ms. Solomon and Ms. Wright to talk with us a little bit about surrogacy without payment. I think both of you fear that the possibility of having a child through surrogacy will be so greatly diminished through this bill that it is therefore not a good bill. I believe I am stating the position correctly that we are for surrogacy. We are for controls, consent, information and counselling. It is just the commercialization of it. We are for ``reasonable expenses'' — loss of earnings, if that is medically indicated — all of these things.
I would like to hear each of you speak, maybe from your hearts, about surrogacy without payment. First, I would like to ask the grandmother, Ms. Solomon. I understand your joy.
Ms. Solomon: I have been a journalist for 25 years, and I did a lot of research. I looked into this. When I was doing my television show, Ms. Creighton appeared on my show often. With all due respect to Phyllis, she plays fast and loose with the facts. A lot of her material is anecdotal; there is not a lot of background research information, and studies that have been done. It is very difficult to be in a position where you feel so defensive when people say, ``all these horror stories,'' when Joanne can give you lots of anecdotal stories about wonderfully happy stories, which she did today.
Senator Trenholme Counsell: Can you answer the specific question?
Ms. Solomon: You are asking me is about the payment. When Stephanie realized she could never bear a baby of her own, she did not want to impose on the family. She did not want to go to family members and ask them. She waited for someone to come forward. No one came forward.
I think that the act of altruism on the part of families is greatly exaggerated. The United Kingdom saw over a period of 10 years what happened: Over 60 or 70 per cent of their surrogates and donors dried up. It was over. They could not get people to come forward for altruistic reasons.
I think our society has changed. We used to be a much more altruistic society. There were volunteers for every aspect. I can remember. I believe that we were a different world, and people were much more giving than they are now. I think we have become a much more materialistic self-centred society.
I think what will happen here will be exactly what happened in the U.K. and other countries where fair compensation payment has been banned. I sure the senators have heard about these problems. People go on trips for sperm and all kinds of donations to countries where people are paid to go to countries. I do not want to see that in Canada. I do think, if I may say this, that there is something so draconian. This is not the Canada that I know — where the government starts to tell us how and when we can have children.
I remember sitting around with my family talking about what goes on in China and how they tell you how you can have one child and whether it will be a girl or boy. I said thank God we do not live in a country like that. Here I am sitting in Parliament actually begging for people to be able to have children and build a family in whatever way they feel is fair and is just.
Ms. Guichon: There is quite a bit of data in respect of harmful outcomes, however, it is true to say that most of it is anecdotal at the moment. One problem in finding data about this is a certain amount shame is associated with the practice, and people who engage in it and are happy with it tend to speak up, while those who engage in it and are unhappy tend to sort of drift away.
We know from the practice of adoption the studies demonstrate that birth mothers suffer for periods of up to 30 years. Until it became socially acceptable to say that they got pregnant out of wedlock in the 1960s and 1950s, they did not speak up. I believe it is fair to say we probably will not know the outcomes of these pregnancies and the surrendering of the child for some time.
I would also like to point out that the people affected by the practice are, as Phyllis Creighton pointed out, not just the birth mother who relinquishes the child, but also her husband, her other children and her parents. Data should be accumulated about how they do in the outcome.
It is true to say that it is a very poignant practice, but I urge you not to look exclusively at the demand side of the equation. We are not hearing from any women who regret the practice.
Ms. Wright: I absolutely believe women should be compensated. There is not enough money to make someone do this or entice them into this practice. The very first time that I did this, my husband and myself and our three kids went to Disney. That was it. Women do not pay off their Visa cards; and it is not used for monthly expenses. It is always for something extra, it is always to put to their kids' education or just a little something special. They do take their kids to Disney or go on a trip. I absolutely believe that people should be compensated for this.
Ms. Creighton: I want to make clear that I am a moral theologian. My good name has been called in question; I do not play fast and loose with facts. I have told you what Ms. Guichon told you — most of the evidence is anecdotal and that is why I did not present it.
We did get some hard facts before the House of Commons Standing Committee on Health. Sherry Levitan told us that $5,000 and expenses would be what she would expect. She is a lawyer who does preconception arrangements. The figure we worked out it would be $2,500 a month. It would be $27,500 is what Sherry Levitan estimated was the reasonable price for this.
You should know I have been employed as a historian, researcher and linguist since 1967 by a premier historical project in this country. That is why — it is the Dictionary of Canadian Biography — if I played fast and loose, believe me, I would not have held my job.
Senator LeBreton: I agree that this is a very emotional issue. However, I really have to take issue with Professor Guichon. In my view, her long report seems to be hung up on the U.S. example. She even goes so far as to talk about the exchange rate of the Canadian dollar, and then ends up by saying that this practice requires further study.
I very much get the sense that many people are not considering the human side of it in terms of people who really do want to have children and who have no problem either going to a surrogate mother or, in fact, being surrogate mothers themselves.
One of the witnesses used the term an ``us-versus-them mentality.'' In listening to Professor Guichon and Ms. Creighton, I heard someone talk about a catalogue of bad cases, yet we have an example here right at the table of a couple of very good cases. We have, in fact a surrogate mother who does not seem to be suffering any psychological problems having carried a child that has a biological mother and father.
From my point of view, I would like people not to be the moral police, and respect that people may have other views. I found it particularly offensive to hear someone bring the abortion issue into it. It was stated that people who have abortions somehow or other regret that decision and therefore turn to being surrogate mothers — if I understood correctly — to somehow or other fill some void. I find that as a woman, frankly, really offensive. I would like you to comment on that.
Ms. Guichon: If I can go through, if I recall your points correctly, the first point was that I looked at American data. I looked at all the data I had and most of it, as I said, was anecdotal. I am trying to present you with the data that I collected and look at the theoretical arguments.
With respect to the abortion issue, it is an inflammatory issue and I hesitated before drawing it to your attention, but the data collected by Phillip Parker, in Dearborn, Michigan, was to the effect that these were reasons that he was finding that women were coming forward. When I looked at the anecdotal data it suggested that brokers were capitalizing upon those unresolved feelings to the extent that they were unresolved.
I am not moralizing about abortion. I am saying what physicians who have entered into this practice have pointed out: There are bodily reasons, independent from monetary or altruistic reasons, that cause some women to go into the practice, and those bodily reasons make women vulnerable and they seem to be capitalized upon.
Senator LeBreton: You refer to Phillip Parker from Dearborn, Michigan. Who is Phillip Parker? I am sure you could find other people who would have the opposite point of view. That is the problem.
Ms. Guichon: Phillip Parker is the psychiatrist who worked with Noel Keane to broker the arrangements in any large numbers and so there were many more people, many more research subjects, if I may call them that, for a physician to look at. The sample happened to be in Dearborn, so that psychiatrist was in the best position to study them.
Senator LeBreton: Your comment that this requires further study was the only correct thing that you said in your brief. However, to pick people to support your own point of view is, to me, a very unfair way to present the testimony.
Ms. Guichon: With great respect, I would like to present my position. It is not that this practice is not to be allowed. My point is that the practice is not much different from births in adoption. We have provincial family law that regulates it. What is being proposed is that we move this practice of giving birth into contract law — which ordinarily deals with real estate and other inanimate objects — and move it out of family law, because family law at the moment does not allow people to be paid for the transfer of custody of their children, nor does it allow people to decide in advance of conception the custody of their children.
Therefore, my point is we have a regime, it is family law, let us stick with that and the regime is in place. The only difference is who is the mother in a relationship where the egg and the gestation have been separated? I would argue for the reasons I have given in my written statement that the mother should be the birth mother, because that is in the best interests of the child.
[Translation]
Senator Pépin: I am sorry, I missed part of your presentation. You were talking about the feelings of the surrogate mother vis-à-vis the child, ``bonding,'' the very strong feeling, the subsequent emotional effects that occurred after separation, after she gave the child away. I am from the generation that knew adoption. At the time, there were no surrogate mothers and the only way to deal with infertility was through adoption. In those days, adoptive mothers did not go through the same process as they do now, where a woman bears a child and then gives it to someone else. The biological mother in those days did not have any choice even if she wanted to keep her child, she had to give it away. Forty-five years ago, these things did not exist, she had to give it up. So she also had major emotional problems for many years.
You referred to the expenses of the surrogate mother. You are against paying them. I would just like to make a comparison. After having heard what you had to say, I am asking you whether you are against adoption? Adopting a child these days costs a lot of money. Parents who have to adopt children in China or elsewhere have to travel and that is a costly proposition.
I went so far — and maybe this is not right — as to make a comparison involving a surrogate mother who is ready to give up a child. I agree that many mothers have mixed feelings. There are probably some for whom it is easier.
You also have the young pregnant girl who has to give up her child for adoption. Are you against adoption in the same system?
I find that the mother you are talking about has exactly the same feelings as the natural mothers and young girls who used to give their children away many years ago and then wondered where the child was for the rest of their lives. That is often why there are reunions of mothers and children, as you know. But when I listen to the arguments you come up with concerning the bonds of affection and the feelings of the child, it makes me wonder if, at that time, you would have been for or against adoption. Because mothers who give up their children go exactly through the same process. They are not even prepared during their pregnancy, by thinking they will be giving the child to a family who is going to love it. They have to give it up because they cannot keep it.
[English]
Ms. Creighton: There are parallels, but remember that a surrogate mother does not create a child unless she has the intention of abandoning it from the very start. My understanding of human beings is that we are embodied persons. Our body and mind are conjoined, so what we feel in our hearts and in our minds affects our bodies.
The surrogate is invited to detach herself from all of the other experiences. I do not particularly want to encourage women who can detach themselves from normal feelings, because the bond between mother and child has been the safest guarantee of the security of the child, the nurture of it and its care.
Adoption in other countries can be very expensive. I would observe that two wrongs do not make a right. The payment is not to the parents directly, and they do not create a child for payment. It was said by one of my colleagues on our Anglican study that the market will conquer the body in the end — it is the last goal of capitalism. I sure hope that is not true. I do not think that the situations are the same with adoption, but some of the painful sentiments that an adoptive mother has for many, many years are part of the reason I said that we need to keep this experience human and why relationships matter. I am delighted to hear that Ms. Solomon intends to maintain a relationship with the surrogate, but calling a person a ``carrier'' or ``rent a womb'' or ``incubator'' is certainly dehumanizing.
Ms. Solomon: I never called her those things.
Ms. Creighton: There have been court decisions in B.C. and Alberta that have determined that it is the genetic mother who is the mother.
What makes a mother in the first instance? No one can go through carrying a child for nine months without there being a relationship. It is the closest one-flesh unity there is. This is a real mother. In my opening paragraph, I told you I came from the background of child, marriage and family life education. I actually came from a natural childbirth background where owning your whole experience was important. I do not think that anything goes for having children and for caring for them. ``Proceed with care,'' was the right idea in the Royal Commission. Have I helped you?
The Chairman: Professor Guichon, given your background as a lawyer, can you have the last word and comment in response to Senator Pépin's question about how you draw the distinction. Were you able to hear Senator Pépin's question?
Ms. Guichon: I understand that she asked if I would be in favour of adoption.
The Chairman: The essential question was, since adoptions are expensive, what is the distinction to be made between a family paying, say, $20,000 to adopt a child and paying $20,000 to have a child carried by a surrogate mother?
Ms. Guichon: Adoption is a practice that is undertaken in the best interests of a child. A woman, usually or almost always, is unintentionally pregnant and she gives birth to a child that she us unable to care for, so she entrusts the child to someone else. That is the theory, at least, of adoption law. It is very closely regulated to protect the birth mother with statutory periods before which she can sign an agreement and the cooling off period in which she can change her mind, but the focus is really on the best interests of the child. There are home studies to determine whether the home into which the child will go will be a good one.
The practice of preconception arrangements has a different focus. The focus is on the couple that cannot themselves have a child for some reason — such as a tubal ligation or a vasectomy that cannot be reversed. Those people are the focus of the practice, and the intention is to fulfil their want.
I would argue, with all due respect, that adoption is focused on the best interests of the child, and surrogacy is focused on the wants of adults. There is a difference.
The Chairman: Thank you, professor. I thank all of the panel for coming. We went overtime, but I thought it was important that we take the time and the opportunity to hear what you had to say.
We will now turn to the second panel. I will introduce them as they go to speak. Our first witness is Cathy Ruberto.
Ms. Cathy Ruberto, Clinical Director, ReproMed Ltd.: Thank you for inviting me to come and speak to you today. My name is Cathy Ruberto. I am the clinical director of ReproMed, which is a Canadian facility that provides services to a large number of sperm and egg donor recipients, both locally and nationally, through their physicians and clinics across Canada. The services provided by ReproMed and other like facilities are a necessary service in this country. I not only speak as a director of a fertility clinic and a sperm bank, but also as a nurse who has dedicated my career to helping those one in six couples in their child-bearing years who, through no fault of their own, have had to resort to using assisted reproductive technologies in order to build a family, and also as a Canadian woman who believes in reproductive choice for all people.
Through ongoing consultation, 70 per cent of our donors have stated they will not continue to participate in our program without appropriate compensation. It has been suggested by proponents of altruistic gamete donation that a new and different type of donor be recruited. Much to your surprise, at ReproMed, this is the donor we have already been recruiting for the past 14 years. The average age of our donor is not 23, as you might assume, but 33 and older, and primarily a married professional parent who is gainfully employed and leaves their job during their work day to provide the service for the benefit of potential recipients.
Our donor rejection rate is 90 per cent, based on our current federal semen regulations. We are, quite frankly, screening out far too many men, young and old alike, who are otherwise very healthy and great candidates, because their sperm is marginal due to declining sperm counts. Egg donors undergo the same extensive screening process as do sperm donors. I will not focus on the egg donor program today because Dr. Librach and others will be speaking about it later.
Our donor pools are not huge. We have 30 sperm donors that meet the Health Canada current rigorous regulations to meet the needs of an entire country. No facility can maintain a program if it loses three-quarters of its donors for very long before having no choice but to close its doors and deny intended parents the option of having a family.
Our statistics regarding donor attitudes toward participating without reimbursement in our assessment are higher than that of other countries. In Sweden, the U.K. and other countries there was a greater than 60 per cent drop in donor recruitment from 1996 to 2001 as reported by the HFEA.
In those countries where donor insemination registries were established and donor compensation was restricted in some way, there was a serious and dramatic decline in semen donors and the provision of donor insemination. We have all seen the sensational headlines of a fertility clinic in Australia offering to fly potential donors from Calgary for a two-week sperm donor vacation in exchange for participation in their program.
We have received e-mails from clinics and intended parents who tell us that at their clinics they only have a few donors per year. We know that the U.K. is importing bulk semen specimens into their country. Countries like Australia and New Zealand make every attempt to import specimens from elsewhere, if possible. We have been approached by these same countries to ship specimens to them, especially from our ethnic donors.
Banning donor compensation has been a failure in the U.K. as they have spent one and one-half years trying to undo the removal of donor non-compensation because of bureaucratic red tape and is now reverting back to a compensated program because of the dramatic drop in donations.
People who live in countries where reproductive choices have been restricted or banned have resorted to travelling elsewhere for treatment — primarily to places where there is no regulation, hence putting themselves at a greater risk.
We hear now that some U.S. clinics are precisely intent on setting up facilities at border towns to capitalize on Canadians who will have no choice but to access their services if this bill is passed. Therefore, we are defeating the purpose of caring for our own and subjecting them to the stark reality of what commercialism is really is. Health Canada does not have the jurisdiction to conduct an on-site inspection of similar facilities in other countries.
We keep hearing about how commercialized sperm banking must be. Sadly, these services have not been effective in the public sector as all institutional sperm banks in this country are no longer in operation.
We do not support the position statement by the Society of Obstetricians and Gynaecologists of Canada, SOGC, which proposes a national altruistic gamete bank modelled after the Canadian blood services. It is already have been proven that there is no money for global funding of such services under medicare. However, services have continued and have been effectively provided in the private sector.
The costs of equipment, reagent space, expertise and maintenance of federal regulations are costly and time- consuming. It has been suggested that we as an industry are taking advantage of people because of their strong desire to do whatever it takes to have a family.
It is our government and the vocal people who are opposed to compensation that are coercing these people. The ``sword of Damocles'' having over intended parents is forcing them to access treatment sooner than they would have because of their impending fear of this legislation passing quickly.
We have countless patients across this country who are only undergoing donor insemination, egg donation or gestational surrogacy today, as opposed to at a later date, simply because they fear imminently they will either not be able to access services in Canada and will not be able to afford to pay for those services in U.S. dollars.
As you sit here with this very daunting and difficult task of determining whether this bill should live or die, keep in mind that we are all on the same team and only want what is best for the very people that we are trying to help. We want the best possible health care and to provide the opportunity for persons who seek our assistance in building their family.
I have every faith that you will do the right thing and look at this piece of legislation before you in a balanced way, taking all aspects into consideration and truly reflect as responsible politicians representing all Canadians, not just the most vocal who sit before you. The moral issues surrounding gamete donations belong to the individual. If they do not feel it is not ethical or moral for them, they do not access it. We provide them with the service should they feel it is appropriate for them in a medically safe, sound and effective manner.
Pierre Trudeau said: ``There is no place for the state in the bedrooms of the nation.''
We live in the 21st century with access to the world of information via the Internet and sophisticated technology available to us. This is not 1950, 1967, 1970 or 1990. People have the wherewithal to make choices and informed consent. Do not insult the intelligence of people of our country by assuming they are being taken advantage of. Enforced informed consent; do not ban or effective eliminate access to treatment.
We are not opposed to legislation. We stand in the lines with the position of the Canadian Fertility and Andrology Society, CFAS. Donor compensation is not a salary. Direct expenses should be reasonable and receipted, and indirect costs include unquantifiable but real costs in the nature of inconvenience, time away from work or studies, pain, discomfort, and loss of opportunity. In the case of ovum donation gestational surrogacy, there is medical risk in the procedure and the medication.
Indirect costs should be capped. Amounts should be set out in the regulations.
We wish to see a regulatory body established and the issue of gamete donation and gestational surrogacy removed from the prohibited activities and moved to controlled activity where it can be better overseen by the regulatory body, not the Criminal Code.
If this bill passes without amendment, it will do more harm than good. I wish to thank the senators for your time and your interest in reviewing this bill and giving it the consideration that it deserves. Place yourselves and your families in the shoes of these intended parents. They would not wish their worst enemy to have to walk in their shoes or stand before you today and bear their most private and personal problems for the sake of access to treatment.
Ms. Irene Ryll, Coordinator, Infertility Connection of Edmonton: Thank you for asking me to speak on this very important bill before you. I am a coordinator for our infertility support group and have been involved in providing volunteer peer support for eight years. My husband and I have three young children conceived through donor sperm. I am also a registered nurse. Our children, our dreams to become parents and the difficult and painful struggles to build our families are personal and full of intense emotions, as you have already seen tonight. We will always remember the pain of our infertility. It will always be a part of our lives. I want to acknowledge that with all of you.
I would also take a moment to point out that speaking publicly about our story is always a difficult decision, but it is one that we recognize is important in order to positively change things for future families. We hope that one day our children will fully understand and support our decisions and efforts.
No bill on assisted human reproduction issues will ever be perfect nor make everyone happy and content. My husband and I also view this bill as one that has room for improvement. We have lobbied for a gamete donation system with identifiable donors. Although it is not in the bill at this time, there will be another opportunity to review this bill in three years' time when it is in force. We will continue to lobby for this change. However, there is a greater sense of urgency in our view to have a bill in place now protecting the safety and health of women and children.
Without this bill, we will continue to create families such as ours, where our children have been condemned to a lifetime of absent and incomplete health information that we all know is incredibly important and vital to making appropriate health decisions throughout their lifetime. Without the passage of Bill C-6 there will be no register to contain this information and update it. Sadly, it is too late for our children and family.
Unfortunately, our situation is a very clear example of how gamete donation is practised in Canada to date. We have a child with a genetic health issue and no place to go to ensure that this information is shared with others who may have used our donor or to contact the donor. We are asking parliamentarians to consider how important it would be to know this information for them and their families? To our children and us it would mean a great deal. We look to all of you to protect the health and safety of Canadians and prevent this from happening to others. Without Bill C-6 it will continue.
I am concerned about statements that claim patients do not want to be part of a register. I am telling you tonight that as parents we would absolutely welcome a register for our children, donor and ourselves. As patients who used in vitro fertilization, IVF, and the subsequent fertility medications required for this procedure we would expect that someone, somewhere, is keeping track of outcomes, treatments and success rates. This valuable information would be used for improving the health and safety of infertility patients. The data collected in a register such as this could be used for potential long-term study of genetic disorders and other serious medical conditions for our children and for the long-term health of women having used fertility treatments.
I question what patients are being told about the purpose of a health reporting information register by previous testimony given to this committee. I only wish there could be a registry for those of us who might have non-identifying information currently sitting in doctors' offices and clinics right now that we cannot access. Why would a patient support organization not want such useful and important information collected and used for the benefit of infertility patients? If they do not, for whom are they speaking anyway?
All we were given from our clinic was a slip of paper just like this with six pieces of information about our children's donor on it, such as height, weight, eye colour, and hair colour. We have no medical information, obviously, and we never will. Our clinic states they cannot locate our donor. A register would, we hope, prevent that from happening to anyone else in the future. I know someone who is currently pregnant with donor sperm. That baby, once it is born, will only have these six pieces of information, just as we do for our children.
I would like you to keep in mind that our children, our youngest child being five — and Barry and Olivia on this panel, whom you will also hear — and this unborn baby, will all have something in common besides being conceived through donor sperm in Canada, and that will be the lack of medical information about their donors. No matter what anyone else claims is the current situation in Canada in regard to donor information, it is dependent on a variety of factors. A register will ensure that medical information is stored and updated and that contact information is preserved and updated as well
Sperm donation has a long history of secrecy and social stigma attached. We are strong advocates for mandatory counselling by a mental health professional in cases using third-party reproduction. Building a family through gamete donation can raise many complicated issues that need to be acknowledged and discussed well before using the gametes.
Issues such as sharing donor origins with the child, when and how to tell, are often difficult to discuss. I would like to mention I have made a scrapbook for our children about the story of how they came to be in our family. I would be happy to have anyone in the Senate review it if they would like to afterward.
Donor recruitment truly has to be an altruistic system. It is not acceptable to say that we just need sperm and eggs and we will pay for them in order to maintain donors. This is not about supply and demand. We are creating human beings, and how we bring them into this world needs to be carefully considered. Does anyone here really think it is ethically acceptable to pay someone for their sperm and eggs? What is a donor anyway? That is what we need to define here in Canada in terms of infertility. We need to educate and increase awareness in the population in regards to the need for donated gametes. We need a responsible system of gamete donation recruitment in Canada.
After the sperm quarantine in 1999 clinics, clinics that previously had their own sperm banks closed them. Why have they not reopened them, and why are we relying only on U.S. banks for the majority of our sperm donations? As a family, and as patients, we would certainly be interested to know the answer to this question.
We would like to see sperm and egg donation viewed as a noble act of helping others in need. The donors would truly want to help others and probably know what it means to be a parent. Ensuring that our donors are not paid for their gametes takes the question out of why they are involved in this process in the first place. As long as there is money in the equation, it will never be free of controversy. Our children view their donor — who they will never, ever know — as someone who is special to them, someone who helped make them and someone who they would consider a friend. We will one day have to try to answer their question as to whether their donor would have donated if they were not paid. We would rather know the answer to that question, and passing Bill C-6 would ensure the answer is yes.
Mr. Barry Stevens, As an Individual: I thank the committee for inviting me to speak.
The second principle of the act says something to the effect that the health and well-being of children born through assisted human reproduction must take priority when making decisions respecting the use of the technologies. It is unusual in this situation because of course you do not get to hear very much from those children. Olivia and I are two of those, and so we are very glad to have the opportunity to speak.
I am an offspring of artificial insemination by anonymous donor. I was one of the early ones. I was conceived in England, some time ago. I set out a few years ago on a search to find genetic relatives, including the donor. There is some evidence to think my donor may have had 100 or 200 children, so I would have that many half siblings.
I made a film about it called Offspring. It has been seen around the world. I promise you it is not boring. It is an entertaining film. I would like to make this available to the committee so you can be thinking about this even when you go home tonight and think it is all over.
We cannot, of course, speak for all offspring in the world. We do know quite a few of them. We have been networking a great deal. We have an organization, the Alliance of People Produced by Artificial Reproductive Technology.
The main thing that we artificially created people want is an end to the anonymity of gamete donors. We want to know who they are, or rather for future people like us, since it is a controversy whether it should be retrospective. In my view, it should not; in other people's view, it should. In the future, only people willing to be identifiable to their offspring should be recruited into the program. I would say the rates of that in various studies are more than 90 per cent in the three studies I know of that have been offspring have been polled.
We did not get what we wanted in this bill. The bill permits continuing anonymity. However, we support the bill, and we urge you very strongly to pass it. I as an individual want to urge that, and I think I can say with some confidence that that would be a widespread view around the world. People from Australia to the United States to the U.K. are focused on this bill here in Canada quite a bit.
To say that it is simply a private matter between the doctor and the patient, or, as Mr. Trudeau's oft-cited comment about the state having no place in the bedrooms of the nation, misses the fact that it is not just two people. There is another person who comes along — sometimes quite a few of them. I am one of those. When you are creating another person and using gametes from a third party and when you are involving other people, then it is a very appropriate venue for social control.
I resent statements about Big Brother and such things that we have heard from some witnesses. It is a legitimate means of protection. I hope that the assisted human production agency will be a vehicle for that social control, which would be wise. I think there will be many opportunities to alter it, to have a forum for matters such as surrogacy and payment of donors.
I hope, three years from now, that the whole matter of anonymity will be reconsidered. For now, to drop this bill and allow it to go back to where it was 12 years ago, with no regulation whatsoever, to leave it to cowboy country where every mad scientist with a marketing department can do whatever he likes, would be a disaster for future offspring.
Let us not forget how far the science has come in the last few years and how far it will go in the next 20 or 30 years. It has been said that the reproductive and genetic technology revolution will make the electronics revolution make it look like something that happened in Toys R Us. We are dealing with the fundamentals of human life and the possibility of three different people creating a human being biologically, or two men or two women, inserting artificial genes — gene enhancement. I know these things are not permitted under the current act, but we are talking about a situation where we have no legislation. It is of enormous importance to offspring. Those of us who have already been created artificially ask you, please, regulate this.
Ms. Ryll has covered many of the points I would make about the importance of a registry and the importance of health information. Consanguinity, the possibility of people marrying close relatives, is a real problem. Anecdotally, I do know of cases where it has happened. People say it is impossible when they throw the numbers around. However, it is not impossible; it does happen. The possibility of children acquiring inherited diseases that they do not know the nature of happens often. There are many happy stories, too. I think it is important that some regulation, registry and oversight be put in place.
I would like to outline briefly why I feel that, in the end, I hope that anonymity will not be permitted. Often, a psycho-social argument is made that it hurts us, which I think it does, not to know the identity of our donors. There is also a rights-based argument. My half-brother — who is actually also produced by artificial insemination, I discovered from the same donor — is a human rights lawyer in England. He has campaigned and changed the law in Britain to end anonymity. He argues that people have the right not to be deliberately deceived or deprived of information by public authorities about essential elements in their personal histories. The identity of the man whose body made mine is an essential element of my personal history. I feel it is important for reasons of personal identity and it is certainly important for reasons of my continued health.
A quick example of that is that the previous Minister of Health, who was honest enough to bravely share his being treated for prostate cancer. He knew to have a test because his father had died of the disease. Had his father been a sperm donor, there is no question that he would not have had that medical history and subsequent diagnosis. That is one of many examples.
The third reason is a little subtler and harder to explain. Anonymity creates an atmosphere of secrecy in the family — there is an elephant in the middle of the room that cannot be spoken about. I never knew until after my father died about how I was created and I regret that. It is a real barrier between my father and me. I would have known him much better — and my social father was my father and there is no question of that in my mind. That secrecy, anonymity and atmosphere of shame that permeated the donor insemination and my family when I was a boy is unnecessary. There is so much to be gained by openness and so much damage to be done by secrecy and anonymity.
However, as I said, we did not get that in this bill but we hope to get it one day. For now, for the sake of the registry, our health, the health of unborn children and of having some social oversights over these difficult matters, I urge you to pass Bill C-6.
The Chairman: We are delighted to hear someone with your perspective because we have not had before us to this point a witness who is the product of reproductive technology.
Ms. Pratten, please proceed.
Ms. Shirley Pratten, New Reproductive Alternatives Society: I would like to thank the Senate for inviting me here today. I am the mother of Olivia, who is now age 21. She was conceived in Canada's secret and anonymous sperm donation system when I was married to her father who had infertility problem.
Professionally, I am a registered nurse and a psychiatric nurse who has worked in the mental health field for many years. I am also the media spokesperson and a founding member of the new Reproductive Alternative Society, which formed 16 years ago in 1987. It is Canada's first support and lobby group for donor families and advocates for the rights and needs of the resulting offspring conceived this way. This has meant pressing for change toward an open identity release system that already runs successfully in Sweden, Australia, Austria and New Zealand. Recently, Britain announced they would be following suit in 2005. Japan and Holland are also moving in that direction.
As an organization that has been involved in hearings with the Royal Commission and the legislative process through Bill C-47, Bill C-56, Bill C-13 and now Bill C-6, our first message is: Please pass this bill. We are also supporting this even though an open identity release system is not yet part of the bill, something that we have worked so hard for.
We urge the government to continue making serious movement in this direction in time for the review and amendment of the bill three years from now. As others have said, Bill C-6 is not perfect; but no bill will ever be perfect in such a complex, controversial area, and there is a strong basic foundation with which to start. We have to start somewhere and cannot risk throwing away all the time, money and hard work that has been spent on bringing Bill C-6 to where it is now. The Royal Commission alone cost the country $30 million. We cannot throw the baby out with the bath water. To those who plead there have not been enough consultations, there are far more who would say that we have been consulted to death.
Over the last week, you have heard a great deal of testimony from a variety of different professionals and support agencies. Today you heard from people with experiences. All have something to say about this vast field; many of them are to be greatly respected for their contributions. However, they speak about this from their professional lives. At the end of the day, Bill C-6, regulating assisted reproduction, will impact most of all on the personal lives of the people created through the technologies and the future generations of those not yet conceived. We believe that this needs to be understood and not forgotten at the highest levels of government.
The following are a few statements as to why donor anonymity should eventually end. An end to anonymity will be in keeping with the preamble of the bill, which states that the interests of children conceived through artificial reproductive technology, ART, shall be paramount. It will also comply with the United Nations Convention on the Rights of the Child. We have always believed that donor anonymity is primarily an ethical issue as opposed to a reproductive choice.
Having a child through gamete donation is not treatment for infertility, as some people like to describe, as if sperm and eggs were an injection of medication. It is an alternate form of family building whereby a real live human being is created. We believe the government has some responsibility for that human being. Is it ethical for the government to sanction the deliberate creation of people with half of their origins missing? The key word here is ``deliberate'' because that is what an anonymous system is. Anonymity has caused the offspring pain around the world. To those who say we must keep on practising it to alleviate the pain of infertile people, is it ethical to make pain for someone else to alleviate our pain? We cannot continue to manufacture children because people need to have them, while having little regard for the physical and emotional well-being of the resulting offspring.
Anonymity leaves a permanent blank space in the life of the child. We urge the government to continue examining the global picture of open donation systems and to look far beyond the lucrative sperm banks, such as ReproMed, who have a strong commercial interest in ensuring donor surveys come out against an identity release system. The potential pool for altruistic donors is the same everywhere. With a massive public education campaign, we believe that Canadian men are as capable as Swedish and Australian men of being altruistic; who knows, maybe even more so.
An open identity release system is built on honesty, openness and trust — the foundation of any healthy family — instead of lies, secrecy and deception, which is the current anonymous system. I have often wondered why we are the ones who have had to constantly justify our position. Surely, it should be the other way around.
To bring a third offspring voice into the room, I quote Bill Cordray, an American who has spoken to legislators in Canada many times, as well as Australian and German legislators. He says:
The issue of anonymity is not whether a child has the right to know its origins from its parents but whether the government has the right to conceal the child's origins once the child becomes an autonomous adult. The end of anonymity will give us far more information about the psychosocial effects of donor insemination than the continuation of clinic policies that prevent any understanding of the dynamics of these families. Secrecy isolates them from the rest of society.
The last thing I want to mention is counselling. It was particularly distressing to hear the Canadian Fertility and Andrology Society tell the Senate that it is an affront to Canadians to have counselling when they are going there through an assisted reproduction process. It was distressing because such a remark has the potential to undo all the years and years of hard work that many of us have done to bring forth to all levels of government the complex layers of psychological and social issues that these alternate forms of reproduction entail.
Based on our personal experiences and what we have heard repeatedly over the years, counselling is seen as being an absolute necessity to process the many aspects of grief and loss related to the life crisis of an infertility diagnosis as well as the subsequent issues related to having a child through an alternate form of reproduction. You will be hearing similar things from an experienced counsellor in the field in the next session.
I wanted to show two videos, but I can only show one. They are CBC national news shorts. These videos have been shown all the way down the line from the Royal Commission, to all the legislators we have talked, to the committee on health in the other place the last meeting that we had with them. They provide a fast and effective visual tool to what you have been hearing that will help the Senate understand why we need counselling, registries and an end to anonymity. If you watch this video and Mr. Stevens' award-winning documentary — which is a wonderful documentary — you will understand what you need to do and how you need to do it.
Incidentally, these tapes will never be dated. They will never be dated until the system changes. Everything you see is the same today as it was then.
[Video Presentation]
Ms. Olivia Pratten, as an individual: Thank you for having me here today. I was conceived by anonymous sperm donation. I am 21 years old and a student from Vancouver.
I have spoken to various legislators over the past few years, most recently to the standing committee and at conferences. As Mr. Stevens mentioned, I am a member of an international offspring organization.
What does it mean to know that your biological father was a sperm donor? That is why I am here. My conception does not define me, but I cannot deny the impact. It continues to play on my life and will continue as I age and have children. Neither can I deny the process of reconciliation that one must go through when dealing with the fact that his or her parentage will forever remain unknown and a mystery to them.
I have a father. Although I am not related to him by blood, he will always be ``Dad'' to me. Biology is not the sole determinant for becoming a parent. However, both my parents felt it was wrong to lie to me about my origins. I have known about my conception since I was five, after asking.
I was told a simple story of extra seeds from a nice man of an egg, and I went off to play. As I grew older, my understanding of myself and the world around me expanded and so did my questions. Never has there been a time in my life that I did not want to know who he was. From an early age, I had an inherent need to know. From when I was in elementary school doing a project about our family tree, to when I was in high school studying genetics and hereditary, to when I moved to Vancouver to go to university and worked a block away from the clinic where I was conceived, I wondered, ``did he walk down this street? Do I pass him every day? Is he the bus driver? Is he my professor? Who is he?
These questions are a double-edged sword. He could have been a model citizen but he also could have been a crook, a jerk or a bum. With wanting to know and being conceived in an unregulated era, comes the fear of being related to someone who should not have been allowed to be a donor. It is almost like being created in a back alley.
I also knew from an early age that the records were likely destroyed. However, I pictured the doctor throwing the 45 r.p.m. records in the fire like Frisbees. Such is the memory of a child. When I was about nine or ten, my mother wrote to the doctor and was told that he would have to ask his secretary but he thought that the donor was five foot ten inches and had blond hair and blue eyes. I can tell that you this information — if I can call it that, it sounds like a wanted poster — did nothing to satisfy my questions.
I knew who I was but I wanted to understand how who he was contributed to the person I was becoming. Historians say we have to know where we came from in order to know where we are going. It is a fundamental human desire that does not need to be explained. It is reflected in all aspects of our society from genealogy sections in bookstores to family trees and stories — which I am surely all of you have. It is these things that people who know their true genetic heritage that they take for granted and do not realize the significance. Donor offspring are left to ponder for themselves what these missing pieces look like.
Despite knowing that I would never know it was only recently that I have dealt with the full implication of what this meant. Two years ago I was at a conference where two American offspring and their donor, who had recently met, spoke on a panel. I shared their joy, but I was devastated when I reflected on my situation. Until this moment, this so- called donor — my biological father — had always been an abstract concept to me. However, there in front of me was their ``donor'' — in the flesh, a real person who looked like them and had their mannerisms. Somewhere, anywhere, was a man, my biological father, a real, living person, not a vial of sperm or a medicalized sheet, with whom I also share this connection, but I would never be able to know.
I felt anger. I had never chosen not to have this person anonymous from me. I felt disempowered. This was my life, not the clinic's, not the physician's, not my parents'. Where was my choice in deciding how this was or was not going to impact me? I resented the patronizing position I was placed in. I also felt incredible sadness. I felt I had lost someone who I had never met, yet contributed to the person who I was today and the children I was going to have tomorrow.
At some point, I had to try to reconcile this. I could not deny the sadness, but I could not let if define me either. I believe this is one of the legacies that is left to offspring of anonymous gamete donation. We must deal with decisions that were made for us before we are born, live with it, and get on with life.
Instead, I have chosen to focus on using my experience in a positive way to help others — as I believe I am doing today — in future generations who would be conceived in the same way. I have never heard anyone who was conceived in anonymity say, ``Yes, it is just great, I cannot know; let us continue with it.'' I have met many offspring over the years, at various conferences and groups, in addition to the organization that has been spoken about. Trust me, I have never heard anyone say that.
Two years ago, I found out that the doctor who engineered my conception is going to be retiring. I went to see him to try to obtain my health history and any other information on my donor. I believe it was photocopied for the committee. This is the original version. What he scribbled out to me on a piece of paper is not detailed health information. There is minimal information, such as hair and eye colour and blood type, and that he was Caucasian. There is absolutely no health information.
When I asked him where my health history was, he said — and I quote — ``Don't worry, dear, I did a verbal medical check of that and he was healthy.'' I felt like it was 1904 instead of 2004. I wondered of the irony of his colleagues studying advanced genetics while I got questionable information scrawled out on a piece of paper. Despite this, I know this physician was a good man, with very misplaced intentions.
When I inquired what would be happening to my records and any other pertinent information, he told me that they would be kept with the B.C. College of Physicians and Surgeons for two years and then destroyed as in any other inactive file.
As you can see, I am not inactive, but very much alive.
Last year, I heard through the grapevine that he had retired. I felt compelled to see for myself, and what did I find? He had disappeared, his name erased from the directory in the lobby of the office building, and his office empty when I looked inside. There was not a letter in the mailbox or a note on the door to say where the records — my records — were. They were gone. ``Gee, thanks,'' I thought to myself. I felt like a piece of my history, a piece of me, had just been erased.
How can a professional use gamete exchanges to help create citizens and be allowed to seemingly disappear with all the records, without a trace? Had a registry existed, such as the one proposed in Bill C-6, I would not be in this position.
I can tell you that this does not violate my privacy, nor does it violate that of my parents. Besides protecting my vital information, it legitimizes the practice of donor insemination, which has been unregulated, unrecorded and, until recently, stigmatized. It is long overdue that it be official and for all information to be recorded and protected.
I also know that my biological father was paid $50 for his sperm in 1981. What are the implications for me 22 years after the fact? I am left to forever wonder whether he understood the full consequences of what he did. Did he pocket the money, thinking to himself, ``Isn't this great, being paid for something I do every day?'' Did he think that his sperm would not stay sperm, that it would become a person — me? Had he not been paid, I would at least know that he had the right intentions and that I am related to someone who wanted to help someone else first before helping himself. Allowing people to sell their gametes, to sell their biological ties, is degrading and cheapens the essence of what it means to be human.
Even though it saddens me to think that there will be more people like myself demanding change for an open system, as an anonymous system continues to be laid out in Bill C-6, I still believe that it is better to pass the bill as is and that it is far, far better than nothing. Nothing would mean donors would still be paid, casting into doubt for others, like myself, their progenitors' true motivations and character. Nothing means that there will be others to look in empty clinic doors and wonder whatever became of their records.
The message I leave with you today is to pass the bill. It is long overdue. We can continue to press for an open system once the legislative framework is in place and the unregulated vacuum that exists now has been plugged. Any legislation is a step in the right direction and is one that I support.
The Chairman: Thank you very much, Ms. Pratten.
Senator Keon: First, let me compliment all of you for tremendously articulate and clear presentations. They were truly interesting. Despite the fact that they were so penetrating, they were also very interesting.
I take it that the four of you want the bill passed without amendment. You do not want us to look for an amendment that would satisfy your need for a registry.
Ms. Shirley Pratten: We would, if we could do it without losing the bill. Are you saying that that could be done without losing the bill?
Senator Keon: There is a pretty strong feeling that amendments may kill the bill. That is quite right. There seems to be a tight timeline. Nonetheless, everything in life is possible, I suppose.
I want to bring you back to the registry. I am sure you have all looked at this very carefully. Perhaps I will start with you, Mr. Stevens. With technology as it is, a registry can be built so that only the involved person can access the information.
What firewalls would you want to see there? Would you want that registry accessed only by yourself, Mr. Stevens, or could your parents or someone else access it?
Mr. Stevens: I think that an offspring's health information is something that belongs to him or her as a matter of right. For a pre-adult offspring of reproductive technology, his or her parents would need access to health information and any change in the donor's health or any question, so that would presumably be their responsibility. I do not remember actually what the bill provides for with respect to that particular question.
Senator Keon: I think there is a ban on the information, period.
Mr. Stevens: There is a ban on identifying information, but I think there is a complicated way of accessing health information.
Senator Keon: Of course, with the electronic record evolution, the big showstopper in there has always been privacy. Having been a health professional all my life, I have always felt strongly that if we let the patient in on the information and give them an appropriate tag, card or whatever, with the information on it, that the issue pretty much disappears. I know there are all kinds of other arguments about children not being competent to carry their card, and people who are mentally impaired not being competent, et cetera.
I would like to hear from Mr. Stevens, and then over to Olivia, what your feelings are about who should have this information when it comes. We will revisit this in three years if it goes.
Ms. Ryll: Senator Keon, when you ask who should have this information, do you mean who should have access to this information?
Senator Keon: Correct.
Ms. Ryll: As a parent of children, I think, as Mr. Stevens had already said, we are having to look after our children, look out for their health and welfare. I believe if there is any information in a registry on a donor's health, or anything of a social nature that the donor has contributed to the registry, that is something that we as parents would need in order to make the right decisions and to help tell the story to our children about who their donor is. We cannot just tell the story when they are 18 years old, when they are adults and start filling in all those blanks of all those years.
As health conditions arise with our children, we should be able to contribute that information to a registry that should also be made available to other people who used our donor, for instance, or for the donor himself who may have children as well. That information may be quite important to them.
Mr. Stevens: When a donor goes into a program his health history is taken. If he is 33, or younger, very often his parents or even his grandparents will still be alive. He might not be aware of what he is at risk for. It is important that that health information be updated.
With respect to questions of his privacy — if that was part of your question — then I feel when you enter into a program such as donating gametes, you are making an agreement to offer that information and share it because you have passed on your genes. If they are faulty, you really have an ethical obligation to pass on the information, too.
I do not know if that is helpful.
Senator Keon: It is very helpful.
Ms. Shirley Pratten: I certainly think that information, as Olivia was growing up, should have been available to her father and me. Once she is of age I feel it is her information. It is clear that I think an identity release system releases identifying information to the child, if the child requests it at the age of majority. I truly believe that donors should not be accepted as donors in the first place if they are not willing to do that. We should be questioning whether they are suitable to be donors in the first place.
We ask about the donors' rights to privacy. The donor is a consenting adult. The child is the one who has had no choice in them. As Olivia and Barry have both said, they never chose not to know their biological father.
Senator Keon: Olivia, would you like to respond?
Ms. Olivia Pratten: They have said what I would say. Social health information should be available to the child as they are growing up. Ideally, I would like to see identity release when the child is 18. If they so chose, at whatever point in their live, whether they are 18, 28, 38 or when they have their own children — or perhaps never — they can access the name of the biological father or mother.
Senator Keon: I take it from all of you that apart from this you have no other major problems with this bill. Is that correct?
Ms. Ryll: I am a registered nurse as well. Of course, I am going to gravitate to the things that are most important to my life. However, I would feel a lot safer as a Canadian to have some kind of legislation on reproductive technologies, on surrogacy issues and the research that is going on. Thus, I would say, yes, pass the bill.
Senator Léger: What a powerful meeting we are having this afternoon!
You were talking about the medical importance of identification. I am at an age of genealogy. Olivia, you did talk about your family tree in high school. I have knowledge of my antecedents back to eight or nine generations. However, you are cut off from this genealogy, right?
Ms. Olivia Pratten: Yes.
Senator Léger: If the information is given, would that clarify for you somewhat not only the medical aspects, which are so important, but also your own heritage and identity?
Ms. Olivia Pratten: Personally, knowing that, it would help me. However, for me, there is still an element of not feeling patronized by it. If I had that information as I was growing up, it would have helped, definitely. As a child when doing that project, I asked: Where do my ancestors come from? Who do I look like?
I do not know if this is what you are wondering. However, I do not know whether it would have satisfied my desire to actually see the person in the flesh. It would have helped me somewhat; but I still do not think it would have alleviated my desire to meet him, if that is what you are referring to.
Senator Léger: Not quite, because I did not meet all my antecedents back eight generations. I do believe, Olivia, right now it is the family tree, but later on it will really be of importance to our descendents as they come of age.
I am wondering what Barry thinks about this.
Mr. Stevens: I did meet a relative. I found a half-brother, the lawyer, which has been a delight, and a very positive thing. I cannot say that I yearned for a brother and that there was a piece of me missing. All I can say is it was a delightful and very positive experience that I did not anticipate.
I suppose you could argue that it might harm people in certain circumstances. Some adopted children who go searching for their birth parents might have a very bad experience. That is quite possible. However, I believe is that it is wrong to deliberately deprive us of that information because it is ours by right. It may be harmful or helpful — I think it would just be very positive. I think most of us feel that way. In a way, that feels a little off the point, whether it is positive or negative.
I have one other anecdotal point I would like to share. I do not know my donor, but I know he was Jewish. I was raised as a choirboy in Canterbury Cathedral. I am a Christian. I found out he was Jewish. It was odd, when I was in England among North London Jews, for the first time I felt I was amongst people who expressed themselves in a similar way to me. That may be nonsense, but it was an emotional experience. I thought I would report it.
Senator Léger: It is understood in these famous trees, of which I am very proud, that there are murderers in there.
Mr. Stevens: Yet you know where you come from. Knowing where you come from enables you to go forward.
It is very dangerous and very arrogant to imagine that it is okay to cut that off deliberately and to go into the future manufacturing people without those connections when such connections have existed forever. All living organisms are capable of recognizing their kin, down to one-celled organisms. The stories from Oedipus to Charles Dickens to Luke Skywalker in Star Wars, — stories in which people find their fathers or their relatives — are very important stories. These are tremendously important stories. They are important for a reason. It is a basic yearning.
Senator Cordy: I agree with my colleagues that this has been a fascinating discussion and learning experience for us. Barry, I did see your documentary. It was fascinating. I recommend it to anyone sitting around the table. You certainly are a tenacious person.
I found your comments about the lack of medical information, the atmosphere of shame and secrecy, the permanent black space, and the open identity very interesting. Not so very long ago we were hearing those very comments about people who had been adopted. We have come a long way. That information is now available to people who have been adopted. I guess that tells you my age when I can remember all those comments. Younger people would not remember that.
It is interesting that now we are hearing the same dialogue being used. Perhaps in a few years' time we will be looking back and saying, ``remember when?''
Mr. Stevens: I hope so.
Senator Cordy: Mr. Stevens, you spoke about your brother in England who was an advocate for transparency. I believe you said that in England, donors are now registered. Did I hear correctly?
Mr. Stevens: Donors will now be identifiable. In the future they will only be using identifiable donors. That change in legislation was announced about a month ago.
Senator Cordy: I was wondering whether or not that has had an effect? Are there any countries that currently have transparency? Has that had an effect on donors? Has the donor rate gone down?
Mr. Stevens: This is a big question and a controversial one. The evidence that is picked is often selective. To a certain extent, you get self-fulfilling prophecies. If you hear leading fertility doctors on the radio saying, ``This is a nightmare, there won't be a donor who will show his head,'' then it will be hard when that guy tries to go out and recruit a donor.
The first country that went open was Sweden. It was widely reported that there was a huge drop. I believe they went that way in 1985. There is now a healthy donor program and there are more donors now in Sweden than there were before. There is also an anonymous sperm bank across the bridge in Copenhagen that is also doing great business. New Zealand has gone that way and has managed to maintain a healthy donor program.
One example is the very first place in the world, in Berkeley, California, a sperm bank that gave donors a choice; they could be anonymous or identifiable to their offspring when their offspring reached the age of 18. When they started, about half their donors chose to be identifiable, half chose to be anonymous. The latest statistics are about a year old now, but they indicate that about between 75 and 80 per cent of donors choose to be identifiable.
It is clearly possible to find gamete donors who will do this. It has been successful that way in several places. In Australia, it is new and Ms. Ruberto mentioned the situation in Alberta where they ship people from Alberta down to be identifiable donors. They went to extreme measures.
Elsewhere, it is a matter of public education. It has been possible and it has been successful.
Senator Cordy: In countries where these systems have been transparent, have they been in existence long enough? Have there been any people who have gone back to the donor and said, ``We want financial compensation to raise your child.''? Has that been an issue?
Mr. Stevens: That has not been a problem with clinic donors. There have been cases where a friend has been a donor and there have been court cases.
Senator Cordy: I am talking about child support.
Mr. Stevens: In the United States, they have the Sperm Donor Act that prevents that. In the U.K. and Sweden they have laws that prevent that.
Ms. Ryll: Alberta has recently announced that they are looking at instituting a law in their Family Law Act where donors will not be financially responsible.
Senator Cordy: Should that be part of any legislation?
Mr. Stevens: The legislation exists in draft form in Ontario; it is there.
Ms. Shirley Pratten: It would be part of going to an open system to ensure that across the country the law is reformed in all provinces so that a donor is not financially or legally responsible. That is usually what other countries have done as part of going to an open system.
Senator LeBreton: I cannot imagine that we could have a system where the donor is not identifiable, for the personal reasons but also for medical reasons. I am wondering, Barry you just mentioned the Berkeley example, where donors chose whether they would be identified or not. I presumed the ones who decided not to be identified still had their records so that someone at least would have the person's health records. Is that the case in the Berkeley example?
Mr. Stevens: Yes, it is.
Senator LeBreton: In the countries where there are these records, what kind of screening do they really have? They interview a donor and ask questions, I imagine. How can they be assured that the information is accurate?
Is there any follow-up for a donor who thought they were healthy and provided all the information, as they knew it at that point in time? Is there any way, were that person to develop some serious medical condition or some serious illness, that they would be compelled to come back to provide that information? Certainly, that would be very important information to any child.
Ms. Ruberto: In Canada we have federal semen regulations that have been in place since 1996. Those regulations were since amended in the 2000. Those regulations require that a semen processor obtain actual copies of the donor's full three generations medical history or that donor cannot participate in the program.
That information is available to any recipient or offspring. It is on our Web site. If anyone wants to click on a donor number and read it, it is available.
With regard to genetic illnesses, Health Canada inspects Canadian facilities, not only the sperm processors, but also every physician who provides donor insemination services in this country. We have to keep a strict log of any adverse reaction or outcome. Those files are inspected. There is a process through Health Canada of how one needs to deal with that — a case of genetic illness, for example. I should add that all of our donors undergo genetic testing. That is standard these days. In the days when Olivia and Barry were conceived was not done. I am not surprised that in the days when Olivia was conceived, the doctor took a medical history, ``Do you have anything in your family? — No.'' We now have the donor sign a contract or a form that states they must report to us in the future if there is any illness that is genetic or hereditary that they are not now aware of but will be in the future to the facility.
At that point we would have to conduct an investigation to determine whether a recall needs to be done and to inform recipients of that sperm who conceived children.
Senator LeBreton: How then do we have a case like Ms. Ryll's? When did you say this came into effect?
Ms. Ruberto: In 1996.
Senator LeBreton: Are you saying that for every sperm donation there is a record, so there will be no more Barrys or Olivias in the future?
Ms. Ruberto: In the current system that full three generational medical history is available. In addition to the semen regulations, the Canadian Standards Association has now incorporated those semen regulations to include egg and embryo donors as well.
Senator LeBreton: I see Ms. Ryll and Mr. Stevens both shaking their head.
Ms. Ryll: It depends on what part of the country you are in and where you are accessing the sperm for donor insemination.
Ms. Ruberto: The laws are federal.
Ms. Ryll: For the special access, where people are accessing sperm from donors who donated before the regulations, people are still accessing that sperm. They are still having children.
Ms. Ruberto: That is true.
Ms. Ryll: That is the example I was giving in my presentation.
I would like to also mention our children are still quite young. The youngest is five and the oldest will be ten. We are not talking about a system that happened when Barry or even Olivia — I do not want to date Olivia — were conceived. There are other people in my situation as well who have younger children. Just because something is happening in one part of the country does not mean it is in another part of the country.
Senator LeBreton: Just because there is a regulation does not mean it is actually happening.
Ms. Ruberto: Your donor was a donor previous to 1996?
Ms. Ryll: We conceived our first child in 1993.
Ms. Ruberto: Is it the same donor?
Ms. Ryll: I hope it is. I have no paperwork to prove that. All we have is what we were told.
Senator LeBreton: There seems to be some confusion.
The Chairman: I do not want an answer now, but I know that there are some officials from Health Canada at the back of the room.
Could you give the committee a clarification for Friday? There are two issues at stake. First, exactly what information is available about donors? Does it vary by province, or is it a national regulation? Does this act propose to change that?
I would like to understand why the government decided to take the anonymous approach rather than the non- anonymous approach.
Finally, why was medical history not to be made available? It is somewhat bizarre that a farmer can get much more detailed information with respect to the artificial insemination of cows or horses than is given with relation to human.
I will ask the officials to give us those answers in writing by Friday.
Senator LeBreton: You say that there is medical information after 1996.
Ms. Ruberto: It was made law after 1996.
Senator LeBreton: It is the law, but it does not necessarily mean that people who are accessing donor sperm are being given sperm that falls under that law.
Ms. Ruberto: They would be contravening the federal semen regulations. As I mentioned, no institutional sperm banks are still open. Those facilities could not maintain the basic regulations and they closed permanently. Those records, under the current semen regulations, must be kept indefinitely. They cannot be destroyed.
We have had three successful inspections. Many facilities have not because they were not able to maintain the regulations. They chose not to follow the regulations, and the consequence was that they were not allowed to provide service. The physician also must maintain very specific tracking records in case a facility like ours needs to do a recall.
Senator LeBreton: Are you saying that currently sperm donors can remain anonymous and, therefore, a child may never know its father, but that the medical history of the donor is available to them?
Ms. Ruberto: Yes. The information is available to the recipient or to the offspring. We provide detailed portfolios of information about the donor and his family, including skills and abilities, education, and likes and dislikes. We actually show modified photographs of the donors to the potential recipients and offspring, should they wish.
In our facility, we have collected medical records since 1990. When ReproMed opened, there were no regulations. There were only guidelines and we followed the American Association of Tissue Bank guidelines, because those sperm banks were accredited. We followed those standards until there was federal regulation.
Ms. Shirley Pratten: I acknowledge that ReproMed does certain things that not every place does. However, it is still an anonymous system. Whether there is a photograph or other things, they still cannot get access to the identifying information.
Ms. Ryll: Maclean's magazine recently ran an article on donor sperm in Canada, for which my husband and I were interviewed. After it was published, the journalist told me that a former sperm donor from our city contacted her because he thought he could possibly be our donor and he wanted to share his information and his name. We ended up speaking to him. Unfortunately, it does not sound like he is our donor, according to the information we were given.
My point is that there is no register to access without legislation. Where does one go? The donor does not want to connect, which was the rule under which the donation was made. We have nothing if there is no register.
Senator Morin: We were told at the last meeting by Dr. Green that 80 per cent of sperm was imported from the U.S. If we have a successful commercial system in Canada, why do we have to import it? Who monitors the continuing medical history of the Texas donor?
Ms. Ruberto: As I said, the vast majority of sperm banks were closed down.
Senator Morin: I realize that, but why were they not reopened?
Ms. Ruberto: They could not meet the current regulations, which are very rigorous, and those facilities chose not to reopen. Almost every major university hospital in this country had a sperm bank. Now they do not; they are all closed.
ReproMed stayed open throughout the entire process, although at the beginning we had only five or six donors. We had to import sperm from the United States in order to continue to provide services, because the facilities here could not afford to keep their sperm banks open.
Senator Morin: Who is regulating the ongoing medical history of these donors?
Ms. Ruberto: We follow the Health Canada semen regulations.
Senator Morin: I am asking about Texas.
Ms. Ruberto: Health Canada says that any processor that imports semen into Canada must meet the Canadian criteria. I can assure you that our government does not have the jurisdiction to cross the border and do an on-site inspection. They can randomly ask for certain information or files, but our facility is actually inspected.
The Chairman: Do you agree with the statement that Dr. Green made last week that on the order of 80 per cent of donated sperm is imported?
Ms. Ruberto: I am not sure if it is 80 per cent.
The Chairman: Is it a big number?
Ms. Ruberto: Yes, it is a big number.
Senator Morin: My point is ongoing medical history. Someone may donate semen and then 10 years later get muscular dystrophy. Who regulates follow-up on that?
Ms. Ruberto: As I said in my remarks, let us try to take care of our own. Let us not ban something and then have to rely on the importation of something that you cannot control. They can simply withdraw their services, and many sperm banks actually did. Dozens of sperm banks used to ship into Canada, and now only two do so. The other ones simply chose not to do it any more.
Ms. Ryll: That is my question as well: Why did the clinics that had sperm banks not reopen them? I think Ms. Ruberto is right that they chose not to. They had inventory that they could not use except for special access.
I would like to get a clear answer to that question from the fertility industry. Why are the fertility clinics or sperm banks no longer trying to recruit donors? Why just point fingers at the government? I do not think it is only the government.
Obviously, problems arose and that is why the quarantine was put into place. I do not understand why we are attributing blame. We should be trying to improve fertility access here in Canada rather than turning to the States.
Ms. Ruberto: Ninety per cent of our sperm donors are rejected because they do not meet the basic criteria to be a sperm donor under our federal regulations. That is the reality.
The donor must be under the age of 40. We have seen dramatic declines in sperm counts over the last 14 years. I have been involved with this facility since the day we opened. I can assure you that when we are seeing a 30-year-old man — an otherwise healthy person — with half the sperm count that we would see in a 30-year-old man 10 years ago, the change is obvious. Some of these people do not meet the basic needs to achieve a pregnancy. This is the reality.
We may be able to recruit a donor who would be interested in participating without compensation or anonymity. I am telling you the reality of screening purely on a medical basis. You have to screen 100 people to get 10 donors. We have only 30 donors. That means we must screen 300 people.
Senator Morin: You are saying that American sperm is better than Canadian sperm.
Ms. Ruberto: Absolutely not. I defend our Canadian donors. If there were more facilities open across the country, we would have those kinds of numbers. They have 10 times the population. The sperm banks in the United States set up a little shop in Harvard Square and at all the major universities. We do not recruit university students. The median age of our donors is almost 34 years of age. They are professional men. I might have one donor on my catalogue who is a graduate student, but the rest are mostly married professional men.
The Americans go after the 22-year-old student who is motivated by reasons that may offend some one. I can tell you about our donors. You can go to my Web site and read the profiles for yourself at your leisure. Read about the engineers and accountants. Some of my donors have three or four children. This is the donor we recruit.
Senator LeBreton: This is a good lead in to my last question. Potential donors often consider the money. Many are university students. Is there anyone who sits down and explains to them that what they are creating a life?
Ms. Ruberto: Yes.
Senator LeBreton: There are consequences, and there will be people who want to know. Is there any kind of discussion with these people that down the road they must consider that somebody may look exactly like them who would want to know who you are? Does it cross their mind?
Ms. Ruberto: The donors are counselled in terms of the purpose of their donation. Federal semen regulations require us to give them a detailed information sheet of how the specimens will be used and the possible outcomes. We adopted a format developed by Health Canada. We give this to the donor. They must sign it. That is given to them at the time of their first interview. They go through numerous interviews with me, the medical director, and various different people who work in our laboratory.
They have access to our Web site. They can go to the Web site and read their profile and the information that is being made available.
Senator LeBreton: That is now, but it did not help anybody —
Ms. Ruberto: We are talking about today, senator. We are talking about what we are doing today. I feel terrible for anyone who is sitting with a black hole in his or her medical history and not even knowing the colour of their donor's hair or eyes.
When we formed ReproMed, it was very important that we made an effort to provide all the information that people could not access previously. They are right. It was very different. There is no national dissemination of information.
We have tried to stay current and provide as much information as possible, because we do care. It may be perceived that we do not care, but we do.
Mr. Stevens: I am not convinced that signing the document does in fact answer your concern about whether the donor is aware. ReproMed does a better job most places have historically in this country had. I think it is insufficient.
The Web and other information, such as blurred photographs, give so much information. If I had had that much information, I would have found the guy by now. There is a Web site put together by offspring and their parents that finds half siblings. When I checked in late January, they had found 100 matches. These are not matches that people wanted to have happen. They were from off-the-shelf DNA tests. Anonymity will not be much of a protection with the tools that are available these days.
Senator Trenholme Counsell: Ms. Pratten, I want to ask you one question based on what I wrote down about what you said. We have talked about commercialization of assisted reproductive technology and surrogates. I think you said that selling gametes cheapens the essence of who you are. Would you comment on the commercialization that this bill, if passed, will not allow? Could you expand on that? If you do not want to, then I fully understand.
Ms. Olivia Pratten: Commercialization is done within the context of the parents. They are providing a service but I think the link that needs to be made — whether you are talking about surrogate mothers or ovum or sperm donation — the link is that I am related to that person. I do not like the thought that I am related to somebody who would sell himself like that. He sold his sperm. We do not know what his true motivations were. I do not feel cheapened by the fact I know this, but we are allowing people to sell themselves. Yes, they are selling sperm and eggs, but they are really selling their biological ties with their kin. I hope I have answered your question.
Senator Trenholme Counsell: It does, in a very poignant way. Also, this bill goes on to surrogacy and part of carrying a baby and surrogate mothers. Of course, this is not your situation. However, you are a very sensitive and intelligent young person. Would you comment on that? It is something we are struggling with as a committee and the government.
Ms. Olivia Pratten: I can only imagine myself in the shoes of that child. Often I hear that it is okay because my parents wanted me so much. You were wanted, so, whatever the circumstances were, it does not matter. I think that quite often that is what people who have used surrogacy have said to their children.
I can only imagine how I would feel to know that there was gestational surrogacy and the woman had been paid for me. I do not know whether I can answer that properly because I am not that person. However, I would imagine I would feel conflicted about it. I would feel conflicted about where that money went. Did they go to Disneyland? What did they do?
I know I feel quite different from other people who were conceived naturally. You have this question or dilemma of what was the real motivation. You will never really to know. If there is no money involved in it, you have your answer.
Senator Trenholme Counsell: You are one human being. Have you of had the same discussion with other persons, especially other young people who are the product of assisted reproductive technology?
Ms. Olivia Pratten: Yes. As I said, I grew up knowing this. When I was younger, there was a support group and we had barbecues and spoke at conferences. I cannot comment for everyone, but certainly I know from my perspective that what I have said has always been validated — heads nod. I do not know what else I can say except there is certainly a kinship with others conceived this way when I meet them.
Senator Trenholme Counsell: Thank you very much. It is very powerful testimony.
Senator Callbeck: My question is to Ms. Ruberto. You say that the average age of a sperm donor is roughly 33 or 34. Are you trying to recruit younger men, such as university students?
Ms. Ruberto: No. We do not advertise in any university and we have not for 12 years. When we first opened ReproMed in 1990, we advertised at the University of Toronto, Ryerson, and the other universities in the city. What we found was young men who were immature and not reliable. For example, a sperm donor is required to maintain an abstinence from ejaculation for three days. It is not impossible, but it is very difficult for these young men to do that. We found that they were more trouble than they were worth.
In our infinite wisdom, we said, ``Forget this, this is not the kind of person we want.'' They were a headache. I was new and young myself in those days, in my late 20s, and just thought it should not be this hard.
We did start advertising, not in the mainstream press, but in community papers. Two thirds of our donors, 65 per cent of them, are married men who have children, and 99 per cent of them are professional men. They all have a university education.
We were getting that new and different kind of donor. Their wives are involved in this, because we have to call them at home; we call them at work. Their participation is not a secret.
I have a donor who has an MBA, a commercial corporate banker who deals with high-risk business loans in excess of $10 million. His participation in our program is more trouble than it is worth to him. These are engineers and accountants. It is not a financial issue. They have to come in once a week, senator, and they must stay with our program for at least one year. We take their blood every 30 days. We update their medical information every 30 days. There is time involved in that. It is done during the day. They cannot come in after 3:30 because we cannot afford to pay our staff after six o'clock. They either come in the morning or during their lunch hour, or that is it.
Senator Plamondon: My question is for Ms. Ruberto. You were talking about Health Canada regulations, and I gather there are inspections?
Ms. Ruberto: Yes.
Senator Plamondon: I have an article from The Globe and Mail from 2002 in which it says that documents obtained under access to information reveal that every distributor, importer and processor of semen inspected over the past few months had deficiencies. The article goes on to cite a few clinics, including yours.
Ms. Ruberto: That is correct.
Senator Plamondon: You were found to have deficiencies, too. How often do you have inspections? If there are deficiencies, how do they control them and determine if they have been corrected?
Ms. Ruberto: We are inspected annually, around the same time every year. In terms of the deficiencies, if you read on in that article, Dr. Calvin Green was actually quoted as saying that the deficiencies that were noted through that access to information were very basic administrative things. For example, when donors fill out a document, they must sign or initial and date the bottom of each page. If there was a page that was not initialled, that he may have missed, that was noted as a deficiency in the inspection. That was for all of our facilities.
To answer the second question, a sperm bank, depending on what the deficiency was, will be deemed compliant or non-compliant. If you are deemed non-compliant, it means that something that you are doing will be detrimental to the health and safety of the recipient and you are no longer allowed to continue to provide services until you rectify your deficiencies.
Senator Plamondon: The article says that it is not only clerical things, like initials — I am not speaking of your company, I mean generally. I was wondering if Health Canada returns, let us say two months after, to see if it has been corrected, or is it only on an annual basis?
Ms. Ruberto: We have to provide a response immediately. Once an inspection occurs, we get a letter. First of all, if during the inspection something is found to be blatantly deficient, the facility is told immediately. It is written up in the report that is usually provided to the processor within a couple of weeks. If they find a deficiency that is endangering someone's health, the facility is closed at that moment.
In response to that, if there are deficiencies that are deemed non-compliant, every 30 days you have to be able to tell the government what actions have been taken, and they write back to tell you if they have further questions that they require answered, or if they deem the resolution satisfactory.
The Chairman: May I thank all five of you? I have chaired many panels over many years in the Senate, and this has been not only one of the most interesting, as Senator Keon said, but the members were also incredibly articulate. Thank you very much for coming.
Mr. Stevens, I do have your video because I do want to see it.
I will say to the next witnesses, while they are gathering, that I will have to be a little ruthless with respect to making you hit the highlights of your presentations, since a couple of them would actually take quite some time to read and I think we have probably read them already.
Our first presenter is Dr. Clifford Librach, from Sunnybrook. I want to make sure that you hit the highlights so we have lots of time.
Dr. Clifford Librach, Director, Sunnybrook and Women's College Hospital Fertility Centre: Honourable senators, I do have many important things to say. I hope I will have the same opportunity as the previous speakers.
It is my honour to have the opportunity to speak before you today. I am a fertility specialist who has practised in the field for approximately 15 years.
As Director of the Sunnybrook and Women's College Hospital Fertility Centre, and assistant professor at the University of Toronto, I am proud to say that over the last 15 years, our program has helped hundreds and hundreds of couples to have children.
Although I agree with some of this bill's intent, it is seriously flawed and will have devastating consequences for the infertile population. Overall, I believe that this bill does more harm than good.
At the outset of my remarks, I sit before you not merely representing my colleagues or myself. Rather, I am here to represent virtually every patient I have ever seen in consultation for gamete donation or gestational surrogacy. These are the people who will really be affected by the reproductive technology provisions of Bill C-6, specifically by clauses 6 and 7 that outlaw reasonable compensation to those donating gametes or to gestational surrogates.
Being understandably private about their condition, many infertile couples do not wish to give their views in public. Other than a few brave individuals, they have no voice. Despite this, you can read in my handout how several individuals were treated when they tried to speak before the House committee in November 2002. Many of you have probably received e-mails from some of these people, who are very upset about this bill.
My patients are devastated and enraged that the proposed legislation could prevent them from being able to have children through this technology. Some of these infertile couples face you tonight from the gallery behind me.
Should Bill C-6 become law, these are the people who would become criminals under this law. Many of them still hope to speak before this committee, and we trust that the committee will grant them the opportunity to do so.
The majority of our patients do not have a relative or friend to donate or carry for them. Instead, for them, these technologies are the only option for having a genetically related child.
From right across Canada, we see patients who require an egg donor to have children. They face variousconditions, and it is important for you to know who these people really are. There are those with Turner's Syndrome, that is, women who are born without eggs; or those with premature menopause after cancer chemotherapy or radiation. Those who seek gestational carrier services are women with problems that include hysterectomy due to life-threatening blood loss or cancer, absence of the uterus from birth, or patients with severe medical conditions, such as congenital heart disease, for whom pregnancy could be life-threatening.
To illustrate this, I want to tell you about two infertile couples that I have treated. The first was a 25-year-old woman who became pregnant. At 22 weeks, she lost her baby and had to have a hysterectomy due to hemorrhage. She has healthy ovaries and her husband had normal sperm. However, she had no uterus. They desperately wanted to have a family. She had no sister or anyone else whom they could ask to carry for her. What if this were you, your wife, your daughter? How would you feel about it? With the help of a gestational carrier, this couple is now expecting their own biological child.
Let me tell you about another patient. She married at 27. She had cancer of the ovary at age 18. Both her ovaries were lost. She came to me, desperate to have a child through egg donation. With the help of a compensated egg donor, she gave birth to twins last year.
The provision to prohibit payment for gametes or surrogacy was put in place to prevent the commodification of reproduction. Reasonable compensation is not the same as commodification.
No egg or sperm donors that I know of have ever made a living, changed their lifestyle or built a career with the compensation they received for donating. So that you understand, the average money a gestational carrier receives in Canada over nine months of pregnancy is less than the minimum wage. I am certain that without reasonable compensation, donors or carriers will be virtually non-existent. These wonderful people have conveyed to me that they would not be willing to donate or carry a pregnancy without fair and reasonable compensation, despite counselling.
In the last 10 years we have only had one or two anonymous donors who have donated for zero compensation. You only have to look at what happened in Australia. Please refer to the handout that I have given you.
Desperate couples will not be stopped by this proposed legislation. This bill will force them into a very difficult decision. They could go to the United States and pay three to four times more, possibly as much as U.S. $40,000 to U.S. $80,000. Treatment would only be available to very rich Canadians, which would create a two-tiered system.
Alternatively, they could go underground, where their activity will be criminalized. They may have to use donors or surrogates who have not been properly screened, exposing themselves to legal, infectious and genetic risks.
In effect, the current draft of Bill C-6 will promote deal making and will turn normally law-abiding Canadians into criminals simply because they are desperate to have a child. Will we subject these people to huge fines or jail sentences? I ask you: Where is the justice, the morality or the dignity in all this — as is mentioned in the preamble to this bill — qualities we Canadians pride ourselves on having?
I believe the answer lies not in outlawing compensation but in properly regulating it, such that all of this will be above board. In this manner, the Government of Canada can ensure proper guidelines are in place to ensure the safety of all.
I ask you to reassess the priorities of this bill to differentiate between the current treatments that we do every day and the myriad other technologies that it covers.
Therefore, I propose that the reproductive agency devise specific regulations for both the screening and compensation of donors and carriers. Stringent accreditation and licensing rules can ensure that these are followed by the clinics. This body could modify these rules over time with changes in societal values and scientific advancements.
I wish to emphasize that I feel it is essential that one or more parents who have had a child through egg donation or gestational surrogacy, such as the parents sitting behind me, be on this committee, as it is only they who truly know what it is like to be in this situation.
Finally, I would like to comment on the mandatory tracking of health reporting information found in clause 17 of the bill, which has not yet been discussed at this meeting. I am specifically concerned about the passage that requires persons who undergo assisted reproduction procedures and persons conceived by means of these procedures to register with a government agency.
This section implies that a patient who simply requires IVF because her tubes are blocked, or artificial insemination from her husband because his sperm count is low, will be forced to report identifying information to the government. Many patients in my practice would never give consent to this intrusion. I believe this strongly violates our patients' right to privacy and the confidentiality of the patient-doctor relationship. I am sure that this committee would agree, especially the physicians who are members of it.
Confidentiality is sacrosanct in all other professional relationships. No Canadian should have to tolerate the government's intrusion into their private reproductive business. Imagine if all couples trying to conceive had to register with a government agency.
In closing, it is of the utmost importance that you understand why I am appearing before you today, and why I am fighting so hard for regulations that allow fair compensation for the wonderful people who donate their eggs or carry a child for someone else.
I am here to plead on behalf of those Canadians I see every day in my practice who, through no fault of their own, are infertile. Although I am a professional, this is not a financial issue for me. In fact, the donor and surrogacy treatments that I provide form only a small but very rewarding part of my practice.
Without amendments, Bill C-6 will deny Canadians the fundamental human right to have children and will prevent thousands of Canadian couples from knowing the extraordinary joy and wonder of having a child. In addition, I strongly believe that their fundamental rights to health care privacy will be violated by clause 17 of this bill.
Therefore, I urge you ladies and gentlemen of this committee to vote for amendments to Bill C-6. Ideally, I would recommend that the bill be split into two parts, a bill that addresses the cloning and research practices, which I think should have been done long ago, and a bill that addresses the enactment of regulations, such as the sperm regulations that are currently in place and which address the issue of reproductive technology.
I implore you to look at the faces of these people in this gallery today. Do we want to turn them into criminals or pry into their personal medical histories by passing this bill as it stands?
This bill will do more harm than good.
[Translation]
Ms. Nathalie Parent, Coordinator, Fédération du Québec pour le planning des naissances: Honourable senators, the Fédération du Québec pour le planning des naissances is happy to be able to present its point of view on Bill C-6 at a time which is so crucial in its approval process. Our federation is made up of groups of women and individuals working to promote women's reproductive and sexual health as well as their independence in those matters. The federation became interested in the matter of new human reproductive technologies when they appeared in Quebec in the 1980s. We began doing research, analyzing the information that was collected and debating the matter with our members and within the women's movement during awareness and training visits as well as during different political and public representations.
Our bias being the promotion of women's reproductive health as well as the respect of their rights and free choice in the matter, we soon started looking at medically-assisted procreation with a critical eye. Our reflection lead us to believe that interests of a scientific, commercial or medical order were being set far ahead of the interests of women individually and human beings collectively. We quickly became concerned about the consequences of technologically assisted motherhood, science upsetting the rules of natural reproduction, the possibility of cloning, commercialization of human reproductive material as well as the spectre of eugenics that might arise from those practices and techniques.
The rapid pace of development of human reproductive technology that has occurred in a context characterized by the absence of rigorous scientific evaluation and supervision has long been a concern to the women's groups we represent. Thus, fertility clinics have managed to develop, experiment and practice on women and their children certain techniques whose harmlessness was not demonstrated before they were used. In order to counter the inefficiency of those techniques and decrease the rate of failure that is still very high even after 20 years of practice, women are submitted to ovarian stimulation which involves taking major doses of hormones whose long-term risks on human health are still not yet well known. Thus, there are attempts to get them to produce five, ten or 15 mature eggs which, once fertilized, will be transferred in groups of two, four or more into the uterus in order to increase the chance of success.
We now know that that practice, besides making human reproductive material available for research, manipulations of different kinds, and commercialization, increases the number of multiple pregnancies in a major way, as well as the number of premature children whose health and development can be dangerously compromised.
The new technologies increas the medicalization of pregnancy, and this is a phenomenon that is being felt more and more by all women who carry their pregnancy to term.
That is why the federation is happy to see a bill that will finally allow the regulation of that kind of practice and prevent untested medical procedures from becoming current practice. We support the creation of the regulatory agency which will authorize and ensure the follow up of those practices through an information registry, amongst other means.
We have a huge need for collecting data based on uniform definitions of terms such as ``rate of success and failure'' which will allow us to be better informed, in a transparent manner, about the repercussions and impact on the health of the women as well as the children born of these new reproductive technologies.
We are also in agreement with the provisions of the bill prohibiting practices we find unacceptable such as human cloning, sex selection, compensation for surrogate mothers and the commercialization of human reproductive material.
Our federation supports this bill. We do not wish to see any amendments because their effect would be to compromise the future of the bill. We believe that many years could go by before any other such bill would be introduced and in the meantime that would leave the door open to experimentation, the sale of human reproductive material, something which is already happening over the Internet, as well as to research and practices leading straight to eugenics. We find that state of affairs intolerable.
This position is a compromise because the bill does not allay all of our concerns. For example, we would have liked the bill to do more about preventing infertility and researching the causes and treatments possible for infertility. We do not consider artificial insemination and in vitro fertilization to be treatments for infertility. In fact, those technologies bypass the problems of fertility without curing them or understanding their cause.
Studies show that the causes of infertility remain unknown in 10 to 25 per cent of cases. We would have liked this bill to do more to encourage the prevention of and research into the causes of infertility, thus reducing, upstream, as it were, the need to rely on assisted reproduction. We still hope that the agency might add that concern to its mandate.
We are also concerned by the fact that this bill approves the phenomenon of surrogate mothers. We find that the line between the prohibition of remuneration and the compensation of costs is very thin, and we would have preferred that this bill not include any measure which would encourage that practice.
According to an article in La Presse, the amount allowed to cover expenses in England is about U.S. $16,000. It is hard to differentiate between a salary and a compensation. It is hard for a poor woman not to be tempted to offer her services.
The use of surrogate mothers also leads to many ethical and moral quandaries as well as the risk that all women may be exploited. The agreements, even though they involve no remuneration, dictate the behaviour of the women during their pregnancy. They have to be careful about what food they eat, and not drink or smoke. They must submit to the examinations suggested by the medical team. They must behave in a way favourable to the healthy development of the child.
Could a surrogate mother be sued if she were to give birth to a sick or handicapped child? What does one do if the surrogate mother bears twins but the welcoming couple only wants one child? In the US, that kind of psychodrama is already being played out in the headlines. We cannot approve of this trend which is turning women into factories churning out babies on demand. We cannot approve of turning children into a commodity, nor creating multiple links of affiliation, nor of the loss of what it means to give birth.
The anonymity of the donors is also a concern for us. The right of the child to know its origin, if it so wishes, should be given priority over the right of the donor to remain anonymous. Who are we thinking of, first and foremost, with this measure? Is it the well-being of the child who is being deprived of part of its origins or the protection of the adults who wish this aspect of their lives to remain private?
Just think about adopted children and their search for their birth parents, to understand the importance of the human quest for identity to which the preceding group bore eloquent witness.
As for support or consultation, we would like it to be offered by a third party removed from any possible conflict of interest. Counselling should also include psychosocial support for the majority of couples and people who go from one failure to another and go through each negative result as a very stressful mourning for the people involved, the couples and those who surround them.
We are happy to see before us a bill that will give us the necessary mechanisms to put an end to practices endangering the health and well-being of women, couples and their children. We are reassured by the fact that this bill will be reviewed in three years. We understand that this bill will allow us to work with the Quebec government in order for the latter to take steps that will also answer the totality of our concerns.
[English]
Ms. Jean Haase, Social Worker, London Health Sciences Centre: I would like to thank the Senate committee for the opportunity to appear here and speak on Bill C-6. I would like to introduce myself briefly and explain the reasons for my interest in this field.
I am a social worker and have been employed full time in a public hospital-based fertility clinic for the past 12 years. During this time, I have been one of very few such professionals employed in infertility counselling, and for a long time I was the only one employed full time in a fertility clinic.
I have appeared before the standing committee and consulted with Health Canada, politicians and various community stakeholder groups. In addition, I have been fortunate in being able to study first hand the regulations and practices in several other countries, such as Australia, New Zealand and the U.K.
My day-to-day role, however, is in the clinic with the treatment team and with the patients coming to the fertility clinic to seek help. As I have a keen interest in the psychosocial aspects of care and in the role of the counsellor, I have been asked to address the issue of counselling.
In the interests of time, I provided the committee with a brief overview of a report that I wrote last year for Health Canada, and that supplements my comments today.
As you know, counselling will be required for all recipients of treatment and donors under 14(2)(b), and this has raised some concerns in certain quarters. In part, I believe these concerns are based on a lack of understanding of what counselling is all about.
Infertility is a unique problem and one that is not generally well understood by the rest of society. It is experienced as both a major loss and a life crisis, impacting people at a very profound level and often causing them to question the very meaning and purpose of their life and their future.
The one thing that has never been questioned is that infertility is not merely a medical problem. A high standard of care is, of course, essential, but medical care is not the only aspect that is relevant to the patient.
To view the treatment of infertility as being geared only toward the creation of a pregnancy is to look at only one part of the process. People seek help at a clinic to build a family. In doing so, they have many non-medical needs and issues. These arise at all stages of the infertility journey and impact most aspects of their lives, their relationships, their self-concept and their social interactions with others.
Counselling, therefore, provides a balance between the highly medical and scientific aspects of high-tech treatment and the more personal and subjective experience of infertility.
Unfortunately, counselling is often portrayed from one of two rather distorted and polarized perspectives. It is sometimes seen as an activity that is reduced to no more than the application of common sense or a friendly chat, and therefore something that anybody could do. Conversely, a more pathological model is also sometimes implied, that counselling is only for people with mental health problems or criminal tendencies. Neither of these perspectives is either accurate or helpful.
The type of counselling provided by a qualified professional such as a social worker or psychologist has now become an internationally recognized field of expertise. Many countries with legislation and regulation have codes of practice for the counselling services in ART clinics. Such professionals address the social, emotional and ethical domains of ART. They are also most qualified to focus on the children to be born and the long-term implications for the families. From my perspective, the children to be born are also very much my clients and, while not there to speak for themselves, their interests clearly have to be considered. Appropriately, under the guiding principles of Bill C-6, they are to be given priority.
I am aware that there are criticisms about making counselling mandatory. I have to say that this is not something for which counsellors necessarily advocated. However, I would venture to suggest that if it were not required, we would continue to have many clinics that do not provide any counselling for their patients. Most counsellors to whom I have spoken recently believe it should be required for all participants in third-party conception, given the complex social and emotional issues in this area that need to be addressed.
However, meeting a counsellor before treatment can be helpful, I believe, to most patients. In the U.K., a recent survey by a clinic that required patients to see a counsellor prior to treatment found that all of them felt it had been helpful, even when they had not expected that it would be.
A new study published this month in a major North American journal finds that psychological stress is the most common reason why people drop out of fertility treatment.
It is also important to note that the acceptance of counselling by patients has been shown to be greater if it also has the support of the medical team and if the service is integrated with the rest of the care rather than being something separate from it.
The royal commission found that many recipients of infertility treatment would welcome greater access to specialized counselling. Subsequent patient forums in the community usually highlight the need for greater access.
Last year, I conducted a telephone survey of fertility clinics across the country to see what they were doing in terms of providing counselling for patients. I found they listed approximately 45 individuals in total. However, I was not able to contact all the counsellors to verify how much counselling they actually provided for the clinics. Some clinics refused to participate in the survey.
Currently, the number of qualified professionals in Canada for whom infertility counselling represents at least half of their practice is probably less than 20. The number of experienced counsellors who practise full-time in the field is considerably less than 10. In contrast, Australia, with a smaller population than Canada but a similar number of fertility clinics, has over 100 registered accredited counsellors.
What are the implications, then, of Bill C-6? Given that Bill C-6 requires counselling to be provided, there is an urgent need for a comprehensive strategy both to increase the number of trained counsellors and to improve awareness of the psychosocial aspects of care. Counsellors must, I believe, play a key role in that development and be involved in an advisory capacity regarding various aspects of regulations, such as standards of practice and accreditation for counsellors.
The bill reflects an enormous amount of consultation and discussion with hundreds of stakeholder groups and individuals in the past 10 years. After being a part of that process, I cannot conclude that further delay will result in a better bill. There is a built-in review process that will facilitate change if it is needed.
To those who say that the bill will have a negative impact on patients' ability to access treatment and build the families they so desire, I would say that I consider myself to be a strong advocate of the patient, and if I believed that this bill would impact them very negatively I certainly would not support it.
I am also not so pessimistic as to believe that we will have a mass exodus of Canadians heading south of the border for treatment.
It is a very long journey that has brought us to the point we are at now. I think the bill presents us with a solid framework to improve the standard of care, protect the interests of both patients and offspring, to appropriately acknowledge the psychosocial aspects of infertility and to join most of the Western world in regulating this field. I therefore ask the Senate to pass the bill.
The Chairman: Thank you very much.
Ms. Diane Allen, Executive Director, Infertility Network: Thank you for inviting me to speak today.
We are a registered charity. We are totally independent of any clinic, doctor, pharmaceutical, professional or community organization. Our membership and our board of directors include representation from across Canada. Most of our board members, as well as myself, have a personal connection to infertility, many as patients who have built our families through assisted human reproduction — or AHR — including gamete donation, or by adoption. No one on our board is employed in the AHR field and neither our board nor our organization has anything to gain financially, professionally or personally from any legislation that is passed. We believe that for a patient organization to have credibility, it must be independent and must be seen to be independent.
I encourage you to ask all groups who come before you who funds and directs their efforts and who sits on and chairs their board of directors. Reproductive and genetic technologies have become a huge, mostly unregulated, billion-dollar industry in Canada and elsewhere. There can be a lot of industry money and direction behind patient groups.
Our goal has always been to provide the information and support that people need to make truly informed choices about their lives. We are here simply out of concern for patients and for the children they have, or hope to have, because it is those children who will be the most directly impacted and for the longest time.
We have a unique perspective because of our extensive experience over the past 13 years at the grassroots level. We have organized more than 70 educational seminars and several conferences, provided information kits, taped seminars, newsletters, telephone support and referrals to more than 45,000 Canadians; have been a part of consultations held by Health Canada with various stakeholder groups; and developed an extensive network of contacts with other support groups, professionals, agencies, et cetera, both in Canada and abroad.
This work has been accomplished by the goodwill and hard work of a handful of committed volunteers operating on a tiny budget, working long hours, and often even paying the bills themselves. We have never been able to secure government funding or much in the way of financial contributions from the medical community. We do not have the luxury that some groups have to hire an Ottawa lobby firm to try to influence the opinion of this committee.
In fact, we have come under considerable pressure because of our support for legislation and regulation, for reform of the donor system, and our opposition to commercial surrogacy.
This pressure has taken various forms, from not passing on our materials to patients, who could benefit from the books, tapes, information kits and everything else that we offer, to slandering one of our board members, nasty letters, harassing e-mails and phone calls, attempts to get our few funders to drop their support in favour of another patient organization that projects a more industry-friendly tone to government and the media, and defaulting on a promise to pay for refreshments at a conference, even after I explained that I would have to pay the $2,400 bill myself, because the organization could not afford it.
This pressure and lack of funds inevitably end up hurting patients because we cannot afford to provide the sort of support services they need or to mount the kind of public information campaign that is clearly needed to try to reduce the incidence of infertility and the need for treatment.
We do not claim to speak for all infertility patients, nor should any other group or professional, because opinion is divided, as you have seen here today. To get an accurate sense of what infertility patients think, you would have to do what the royal commission did. You would need to hold hearings across Canada and actively seek out not just those currently in treatment, but also those who were in treatment in the past and who have moved on, having built their families through birth or adoption, or who are living without children.
Those people are likely to have a very different perspective from people who are currently in treatment, when it all seems so personal and so painful, and when they may not be getting an accurate picture of the benefits of Bill C-6, given that many of the clinics are very opposed to it and the Canadian Fertility and Andrology Society has called upon doctors to encourage their patients to voice their opposition to this committee in the hope of blocking passage of this bill.
Based on our contact with thousands of patients, families and adult donor offspring over all these years via seminars, support groups, phone calls and e-mail, I can tell you that most are unhappy with the current lack of legislation and regulation. They cannot even get a clear answer to the most commonly asked question, about clinic success rates, because these are only reported on an aggregate basis. They are not independently verified. This is not much use when trying to decide where to invest your hopes and approximately $10,000 for each IVF treatment cycle.
Today, you have had the chance to hear from many experts and individuals as to why egg and sperm donors should be identifiable, as well as recruited on an altruistic basis, instead of the current system of anonymous, paid donors, which clearly does not meet the needs of those most directly affected for the longest period of time — the offspring. It is completely unacceptable to have, as some have suggested, parallel donor systems, one anonymous and the other identifiable. That would create two classes of human beings, one that would have access to their genetic origins and a subclass that would not.
You have heard why — and we support these opinions — commercial surrogacy should be banned, and also why human eggs, sperm and embryos should not be bought, sold or traded in exchange for services. You have also heard about the need for counselling and informed consent, and for the government to maintain centralized information registries. Contrary to what some others have said, these are not an insult to infertility patients. They are in their best interests.
No one is tracking my health, or that of my son, to know whether we need to be concerned about the long-term effects of the fertility drugs I took or the procedures I underwent to conceive him. I would personally welcome being part of that registry.
We support all of these recommendations and we call upon you to pass this bill without further delay, even though it does not include everything we would like. Canada is almost the only Western industrialized nation to have no legislation to govern these technologies and protect the health and the interests of patients and their children.
This situation has continued despite almost 25 years — ever since the birth of Louise Brown in 1978, the first IVF baby — of calls for action from various quarters, including women's, religious, disabled, legal and medical professional groups; federal-provincial-territorial working groups, academic organizations, ethicists, et cetera.
A four-year, $28-million royal commission that travelled from coast to coast listening to Canadians received some 40,000 submissions. There has been — as far as I know, it is still in place — a voluntary moratorium on the nine problematic technologies, but that has been largely ignored by the fertility clinics.
There was, as Phyllis Creighton mentioned, a longstanding advisory committee to Health Canada. Health Canada has conducted many rounds of consultations with a wide range of stakeholders' groups. There has been a white paper. There was a study and report by the House of Commons Standing Committee on Health. There was a previous bill, Bill C-47, which died when the 1997 election was called. Then there was Bill C-56, later renamed Bill C-13, and now Bill C-6.
In the intervening years, the use of reproductive and genetic technologies has proliferated, largely unfunded by medicare, and in the sphere of private, for-profit medicine — something Canadians have said time and time again they do not want, and which the royal commission specifically recommended against in this area. However, I suspect that until and unless the federal government passes legislation, the provinces will be reluctant to fully fund infertility treatment.
Promises have been made and broken by six successive Ministers of Health to pass legislation. Please do not let Mr. Pettigrew become number seven. Please pass this bill now.
As we and others have said, it is not perfect; but no bill on such complex matters ever could be, nor could it satisfy all the conflicting points of view. This bill is a reasonable compromise. It has many positive things about it; and in three years time, when it comes up for review, it can be amended to address any deficiencies.
The Chairman: Before turning to my list, I have to ask Dr. Librach a question. You have to help us here a little.
Your presentation touched on two topics. The first was that, to the extent that reasonable compensation is not given to donors, the access to sperm and eggs is likely to diminish. I want to read you about two sentences from a document given to us by Health Canada. I am not extracting and giving a bizarre summary. What they essentially said is that experiences of other countries have demonstrated that acceptable levels of donation are achievable when payment for donations is prohibited.
They go on to use France as an example, saying it has maintained stable levels of sperm donors over the last 15 years. Then they talk about New Zealand and Sweden in much the same language.
Perhaps I should preface my questions by saying I started off in life as a statistics professor. You have anecdotal evidence — and I am not disputing that evidence in the slightest — and the government responds with generic statements that do not refer to any studies, so my guess is they only have anecdotal evidence, too.
We have to make a decision on the basis of two sets of anecdotal evidence that is absolutely diametrically opposed. What do we do? How do we know who is telling the truth? That is not to suggest someone is lying, but it does suggest that there has been no scientific study, so what do we do?
Dr. Librach: I think there are different experiences around the world. There are different ethnic groups in various countries. For example, Sweden is a uniform, homogenous ethnic group, and to compare Canada to Sweden is not a fair comparison. We are a much more diverse ethnic and multicultural group in Canada.
I think you have to also distinguish between sperm and egg donors. You have to remember what an egg donor goes through versus a sperm donor. Sperm donors do go through quite a lot, as Ms. Ruberto has spoken to, and I believe they should receive some compensation for that. Her study showed that there would be a reduction in sperm availability in Canada based on the patient poll.
Egg donors are another story. I think you have to realize what an egg donor goes through to donate eggs. She is subjected to medications, shots and blood testing, going to the clinic and experiencing needles to aspirate eggs from her ovaries, and so on. I think the commitment to going through the process of donating an egg requires that that person be compensated. They will be off work. They will have time away from family and may need childcare, et cetera. In terms of the Australian experience, which I think may well parallel ours, I have people e-mailing me all the time to say that they cannot get egg donors. Their donor pool has completely dried up. In fact clinics have stopped trying to recruit donors.
That will happen in Canada. We will have the same headline in The Globe and Mail and The Toronto Star, ``Desperate women needing eggs are going to the United States.'' In England, they passed a law to prevent compensation, but they went back on that. They are starting to bring it back because their patients were going all over the world to receive egg donation. It will not stop if we stop compensation. People will go wherever they have to go to do it. Why not make it above board? They will do it under the table.
The Chairman: May I raise my second question, which has to do with privacy, because what of you stated? I say this because of what we heard from the Government of Canada officials. I was very surprised at your interpretation. The government can tell me later whether the interpretation is correct or not. You talk about the registry clause, clause 17. I will read from your text:
This section implies that a patient, who simply requires In Vitro Fertilization because her tubes are blocked, or artificial insemination from her husband because his sperm count is low, will be forced to report identifying information about themselves to the government.
The reason this surprised me is that it was my understanding that the registry was only to apply in cases wherein there is a third party.
Dr. Librach: Absolutely not. I can read it to you right here.
The Chairman: I have the clause before me. It may depend on regulations. I will ask government officials to give us, by Friday, their understanding of precisely whether that statement is correct, because it does seem so to me. This committee has had a long history of fighting with the government to protect the privacy of medical information over the opposition of a couple of ministers a few years ago. We are still in the same mindset. My position is that requiring people, the doctors and patients, to provide private medical information when there is no third party involved, which is a different issue, is probably unconstitutional as much as anything else. That is so blatantly and obviously wrong and I am surprised it is the position of the bill. Therefore, I would say to officials that the committee would like a very clear statement as to whether my assumption about Dr. Librach's statement is wrong or the interpretation is wrong. I hope he is wrong, but if he is not, I would like to know what you are going to do to fix it, short of amending the bill, because that is outrageous.
Dr. Librach: I brought this up at the CPS meeting two years ago with the people from Health Canada. I asked them this question and they said yes.
The Chairman: I am not surprised you got that term. There is a huge element of paternalism running throughout this bill, and obviously the drafters and the originators of this bill within the government have a very paternalistic attitude. Do not get me started on that subject.
Senator Morin: I have two short questions.
[Translation]
Senator Morin: My first question is for Ms. Parent whom I thank for the support she gives this bill. You object to the remuneration of surrogate mothers, more particularly concerning the matter of reimbursement — clause 12(3) — of employment income if the person must be absent for reasons of either her health or the child's, the embryois or the foetus's. Is it because you believe that the mother in question should continue to work?
Ms. Parent: No, I do not think that the surrogate mother should incur loss of income in offering this service, but I wanted to raise the fact that we are against the commercialization of this act.
Senator Morin: You said that the only time the surrogate mother could be reimbursed would be if she could not work for medical reasons. Do you have any objections to that?
Ms. Parent: No, but we do object to the principle of supporting or encouraging this practice in one way or another. However, we understand the intent of the bill, that is that the women who decide to do that, not have to incur losses.
[English]
Senator Morin: My second question is addressed to Dr. Librach.
Of course, Dr. Librach has an outstanding clinic and his patients, as I see, surround him. There is no doubt in his mind that the quality of care in his clinic is outstanding, but I would like Dr. Librach to think not only of his patients, but other patients, especially children, in other clinics, where treatment may not be equal or an outcome may be different. We have no idea if they are different because we are the only country in the industrialized world where we do not have outcomes per clinic. We are told every year that they will be coming next year. I am sure it was decided that we would have them by next year, but we never get them. There is no information more important for a patient to have than which clinic is the best to go to. I know your clinic would be at the top, but you have to think about patients and children in other parts of the country. If we kill the bill, there will never be another one. It has been 12 years now and no other government will want to address that. The other witnesses have told us the bill is imperfect, but we have to consider the well-being of children and of women throughout the country and not only those in Sunnybrook, which is a good hospital, and where I spent a year of training. I know of clinics — I can give you names — where there is absolutely no regulation on this. We are the only industrialized country where there is no accreditation of our clinics.
The other point is compensation. Every country has a law or legislation on this.
Dr. Librach: May I address the first question first?
Regarding the clinic-specific data, CFAS does release aggregate data. However, it is not yet released, I agree.
Senator Morin: Next year?
Dr. Librach: It is in the process. However, the problem with clinic-specific data is that it is very important that you do not look at a number, say one with 39 per cent and one with 37 per cent, and say that the first clinic is 2 per cent better. I think it is very important that those data are released in a form that explains their meaning. A clinic in downtown Toronto does not have the same population of patients as a clinic in Orillia or a small town outside one of the large centres. The population may be very different. We have many in our clinic who are lawyers, doctors, professionals in their late thirties and forties.
Senator Morin: I understand what you are telling me. How come every other industrialized country in the world, not including Haiti, has some outcome information? The U.S. even has legislation, and so do the U.K, France, Sweden and Denmark.
Dr. Librach: We have to move toward that and it will happen. I want to comment on the regulation issue because it is important. Our clinics have all voluntarily signed up for the CCHSA accreditation.
Senator Morin: How many clinics were closed down, and how would you close down a clinic? With your voluntary system, how would you close one down?
Dr. Librach: I am not disagreeing that there should be licences.
Senator Morin: When will it be done if we kill this bill?
Dr. Librach: I would suggest that this panel recommend to the government that they enact regulations — just like the sperm regulations, and based on a regulatory body — that do not require a big bill to be passed with hundreds of different things placed in it. Put those regulations before the committee without having to bring the criminalization of these patients into it.
Senator Morin: What about the things forbidden in the bill, the creation of chimeras and hybrids?
Dr. Librach: That should be in a separate bill on cloning, which would pass in no time.
Senator Morin: How about research?
Dr. Librach: If they had done that five years ago, that bill would have been passed.
Senator Morin: What about research?
Dr. Librach: That should be in a separate bill.
Senator Morin: What about research in infertility clinics?
Dr. Librach: Research in human reproduction should be in a separate bill, with the cloning issue.
Senator Morin: Research within fertility clinics cannot be separated from a bill on fertility clinics.
I would like to move to the matter of compensation. Ever since the royal commission, every single recommendation, including those from House committees, has been against commercialization. Every industrialized country that has legislation on this issue is opposed to commercialization, without exemption.
Dr. Librach: That is not true.
Senator Morin: I would like to know to which country you refer. If you were a nephrologist, instead of a fertility expert, we would be talking about commercialization of kidney donation. Why not? It involves the same arguments. People are going to China and elsewhere to purchase kidneys.
Unfortunately, I am old enough to remember when we paid for blood. Each hospital had its own little lab, and we bought blood.
It was decided that the Red Cross would take this on, on a voluntary basis — unpaid, altruistic donations. The surgeons were up in arms. They said we would not have blood any more.
We were told that we had to import blood. We were told that we were importing blood from the U.S., which was absolutely false. We have hundreds of thousands of blood donations every year from altruistic donors. People give blood.
It is amazing. When I was a practising physician, I always asked the patient if he or she gave blood. Giving blood is the mark of someone special. You do not gain anything from it. It is a purely altruistic thing, and I am sure the same attitude would apply.
I know you deny that. I had this argument 20 or 30 years ago about blood.
Dr. Librach: Sperm donation, and egg donation, especially, is very different from donating blood. You cannot compare the two. That is a false argument.
Senator Morin: We disagree on that.
Senator Keon: Senator Morin has pretty well covered the waterfront here, but I will lead you a little further down the road. Let me say to the rest of the panel, since are you so clear on where you want this to go, I will not ask you a question. You were very clear in your presentations.
There are huge concerns about the fact that this entire business is developing outside the Canada Health Act, there are no regulations and people are being treated very unequally. I keep repeating that because it has been said to me that this is a service for the rich. If you are not rich, you cannot afford this service.
Colleagues around the table will tell that you my initial reaction to this bill was that it should be split because there were to many issues in there. I did not think that it would pass.
Nonetheless, I must say that as I listen to people, I do not think that we can afford to wait any longer for standardization, regulation and so forth. I do not see how we will ever make any progress towards this becoming a service under the Canada Health Act if we kill this bill. That is what really concerns me.
Dr. Librach: I disagree, because the sperm regulations are under the Canada Health Act. Why cannot we do the same thing for the reproductive technologies? Why does it have to be a bill that criminalizes people? Why can we not just enact regulations like the sperm regulations? We are regulated by our colleges of physicians and surgeons, et cetera. We are not unregulated. We are not doing unethical things. We are given accreditation, which requires two years of preparation by the clinic. That is far more regulation than for most other medical specialties, as you are probably aware.
You have to be careful when you say that we are cowboys doing things that are not regulated. We are very careful about what we do. We are sensitive to the fact that this is an important area of medicine that requires intensive manpower and the financial resources to hire the people who have the skills and the ability to do what we do.
This bill does not address who will pay for all of this. Who will pay for all the counsellors? When we started regulating sperm, all the sperm banks closed. They could not afford to follow the regulations.
Who will pay for it? Enacting this bill will mean banning everything. We will not be able to function.
Senator Keon: I want to be very clear. Some of the greatest scientists in Canada are in this field, and I certainly would never refer to them as ``cowboys.'' I have the greatest admiration for them.
Regarding the pure service component, we hear, for example, that some clinics have about a 30 per cent success rate, some have about a 10 per cent success rate. There is wide variation in what it costs people to access the services across the country. I do not think that society can just stand by.
I think the general population wants us to do something. That is our big dilemma.
Dr. Librach: An important suggestion brought up at the CFAS meeting was to look at the clinics that may have a supposedly lower success rate and try to help them. We should see if there is anything we can do to help them do better.
That is a way that we can increase the performance across the country so that everyone follows very similar standards.
Ms. Allen: There is another reason for having legislation and regulation. All of these practices, starting with sperm donation and, more recently, egg donation and surrogacy, sprang up without any research into what the impacts might be on the parties involved. We are really experimenting with the lives of children and families. We do not know about the long-term consequences.
You heard today from donor offspring about the consequences for them of anonymous, paid donation. All this has only just started.
The U.K. and Australia have legislation and regulation. Therefore, this type of thing could not happen. You cannot do something unless it is approved under the legislation. The clinic has to be accredited.
I have no reservations at all, based on my experience, in saying that if someone is able to successfully clone a human being tomorrow, people will be asking for that. There will be doctors saying that they should be able to do it because patients want it.
We need to get a handle on this. We should have some measure of control over it as a society.
Some say that if we legislate and regulate it, we will have reproductive tourism. People will go to the States or wherever.
What does that mean? Should Canada not have any laws, because you can always go somewhere else to do something? I see our laws as a statement of our values as a Canadian society, and that we have an obligation, a responsibility and a right to define our values through our laws.
Senator LeBreton: I have a question for Ms. Haase. In your brief, you discuss the shortage of counsellors in this field. First, can you describe briefly what is required to become a counsellor? What kind of background or training is needed?
We seem to be so far behind other countries in per capita counsellors. Is there a reason that we have been foot- dragging for so long on this issue that we have a shortage of counsellors?
Ms. Haase: There is no protected title for counsellors. It is used in a generic sense. When I use the word, I am referring to someone who has some academic training in psychological and psychosocial issues. That is primarily, not exclusively, social workers and psychologists. Some people have training in psychiatry or a master's degree in counselling.
It is quite important that the counsellor belongs to a college, with standards of practice and a code of ethics. Social work and psychology certainly fulfil those criteria.
Why are there so few counsellors? It is in part because most of this is now provided within the private domain. In the interests of cutting costs, this is seen as a frill.
My position developed out of a gynecology department in a hospital. Most clinics and most areas of hospital care have social workers or psychologists affiliated with them. Our fertility clinic emerged within a gynecology service, with which there were already social workers associated.
People often raise concerns about whether it will make treatment expensive. Counselling is not really that expensive. A counselling session is probably equivalent to one or two shots of fertility drugs.
Ideally, it should be provided as part of the service. Some clinics do include a counselling session in the overall cost of the treatment to the patients, who are not billed extra.
So few clinics have employed counsellors because they have not been seen as necessary. It is something they could eliminate. That is very unfortunate. We are behind other countries in that.
Senator LeBreton: It appears that the counselling is needed on the donor side as well.
Ms. Haase: Not many sperm donors get proper counselling right now about the implications of what they are doing. The egg donors get more than the sperm donors.
The Chairman: Thank you. I thank all four of you for coming. Dr. Librach, I will send you an e-mail with whatever Health Canada's answer is on the question you and I raised.
Senators, I owe an apology to our fourth and final panel tonight. I understand they have been waiting patiently from the very beginning. Please come to the table. I am sorry that it took so long. That is the downside. On the other hand, you will appreciate that we have been trying to get a really solid understanding of the issues.
Ms. Janet Sheehan, as an individual: This is my husband, Brad Tavner, and we are parents. Millions of people are described by these simple words. For many, it is only a dream. For us it is a dream come true.
We are one couple who struggled with infertility for years. This is our personal story, and how we think Bill C-6 will affect many others like us.
Brad and I married in 1996. Both of us had had time to realize many personal goals and looked forward to building a family. Family was at the top of our list. We envisioned a family of three, maybe four children. We bought our first home.
I remember being so excited, feeling like we were the luckiest people in the world. We could have our own family. What an amazing miracle.
That feeling of anticipation stayed strong while month after month I did not become pregnant. After a year, the optimism started to fade and concern set in. We were quick to consult our doctor, and we began our journey into the world of infertility at the Ottawa clinic.
Waiting for appointments, tests, exploratory surgeries and low-cost treatment took three years. All this time, we continued to hope that there would also be a possibility of becoming pregnant on our own. Still, we had no baby to bring home. We did have low-cost treatment with a very high emotional cost.
How could we build a life without the children we dreamed of? We had friends who chose not to have children and they live very happy lives. Could we do that?
We quickly concluded that choosing to live your life child-free is very different from not being able to have children. By this time, we were heavily involved with the Ottawa chapter of the Infertility Awareness Association of Canada. We started to help run the support group. It was our saving grace, because we were not alone.
We were diagnosed with ``unexplained infertility.'' That was now our official label. It is not a comforting one. With unexplained infertility, we knew that we would have to pay for any treatment needed. The next step was IVF.
We had reservations concerning IVF. Was it natural? Would the baby be healthy? It seemed a bit like science fiction. Those reservations were based on ignorance — a luxury reserved for those never having to face childlessness without assisted reproductive technology.
What had been something we only read about now held the safest, most practical answer to our hopes and dreams. We began IVF treatment. I became pregnant the first time, only to learn that the pregnancy was ectopic. There was no baby.
It did confirm that we just needed assistance getting egg and sperm together. The next time, I was to take a drug approved for trial in Canada called Antagon, along with two other drugs that had been regularly used for years. Antagon had been used in the States for some time, with success. Unfortunately, this did not work. Another try was recommended, but Antagon was very difficult to get at this point, and it was our only hope.
We could not wait. We needed an end to this roller-coaster, either our own baby or exploration of other options. Just one child in our family would have been a dream come true at that point. After much researching and consulting, within a short five months we were set to begin IVF in New York, at the Cornell University Medical Center for infertility in Manhattan, one of the best in the world.
Our first try failed. They felt that using Antagon, plus a procedure still in the research stage called co-culture, in which they use endometrial tissue to incubate the egg and sperm, would increase the chances of success on a second try. We consulted the Ottawa clinic, but they did not offer co-culture, nor did they have Antagon yet. Our only option was New York.
After much soul-searching and financial figuring, we were in Manhattan in the weeks leading to Christmas. It was a bittersweet time, as the season was heartwarming, but we were nervous.
We found out we were pregnant on December 27, 2000. Again, we were thrilled but scared. Thankfully, this time the pregnancy was perfect. We had a beautiful, healthy ten-pound-11-ounce baby boy on September 11, 2001. It was quite a day to have a baby, especially knowing that Manhattan had been our son's starting place and held a special place in our hearts.
It had been five years since we had started trying to have a family. We decided to try again when our son was six months old. Time was of the essence. We consulted the Ottawa clinic, but co-culture was still not available in Canada. There was no choice but to go back to New York.
Before going to New York the first time, Brad and I had discussed the subject of using an egg donor. We decided to enrol in Cornell's donor egg program during this visit, as we did not think our chances of a second miracle were great.
We fulfilled the counselling obligations while we were there, as there was a lengthy waiting list. Cornell pays their donors well. It is a reputable and ethical clinic, yet they still have difficulty finding donors.
There was at least an 18-month wait, or longer, depending on ethnicity. This was a difficult decision but one we had considered for years as our attempts to conceive were unsuccessful.
We were lucky. We did not have to use a donor.
We became pregnant. Our healthy, full-of-life baby girl was born this past April — a second miracle. Our prayers were answered by medical science and God.
We cannot tell you how truly blessed we are. This experience has taught us many things about ourselves and about life. We are strong. We are smart. We can come to decisions when faced with very difficult and complicated options, with the help of professional doctors in the fertility field.
It has taught us to not to pass judgment on others. Many hours of soul-searching go into difficult decision-making and not everyone arrives at the same conclusion.
Regulated choices are essential.
Mr. Brad Tavner, as an individual: Seven years and $100,000 later, our family is now complete. However, there are many that are not.
Bill C-6 greatly concerns us and other couples we know, especially those in the midst of trying to have children.
First, we do not think ART should be included in a bill that deals with cloning and stem cell research. Couples want healthy babies and are not part of scientific research. These are separate issues and should be debated as such.
Second, not allowing adequate compensation for sperm donation, egg donation and surrogacy will greatly limit choices for infertile couples as to how they are finally able to conceive a child. Non-payment for sperm or, especially, egg donors will virtually stop the supply of donor egg and sperm to infertile couples.
On the issue of surrogacy, not every couple knows someone willing to act as a surrogate. Who will help these couples?
This weekend we visited a family with a new baby. They chose to use an egg donor. The family is overjoyed. The baby is beautiful. Seven years of infertility has come to an end for them. They considered adoption, but the wait was so long that it was not an option. The family actually moved up their treatment date in order to proceed with the egg donation because the word was out that donor eggs would be difficult to find if this bill were passed. I know that they are not the only couple feeling this pressure.
Limiting choices in Canada will only send people to the United States for treatment. Janet and I and seven other couples we know well are perfect examples of what happens when an option is not available here.
We were one of the very lucky couples who could afford to seek treatment at an excellent clinic where they do not have to entice patients and can realistically tell them their chances of success. Many small, unknown clinics will willingly take patients and build false hope. This can be devastating, emotionally and financially.
Those who cannot afford to go to the U.S. will find other means. Some will choose to pay surrogates on their own, at a much higher financial cost and emotional toll if the surrogate and the parents are not counselled properly. Others will find unscreened donors, again paying a higher cost.
Believe us, this will happen. The underground economy will thrive on the hopes and dreams of those suffering from infertility. Safe, regulated choices must remain available to Canadians within Canada.
Privacy is so important in the world of infertility. Patients are seeking personal medical help. It is the couple who have a medical problem, not the children of these couples. Personally, if we knew that our names, and especially the names of our children, were in a registry, we would have had yet another reason to leave Canada for treatment. That is based on my interpretation that IVF would lead to us, and our children, being placed on the registry.
In closing, please consider that the world of infertility is not filled with couples seeking to clone a child or themselves, but with mothers and fathers waiting for their children to be born. Privacy in seeking medical treatment is something very personal and essential to the dignity of every patient, including those suffering from infertility.
Often in life, when you are faced with one door closing, another door opens. This is true for many infertile couples. Do not close those doors in Canada. They hold the path to future children just waiting to be born, loved and nurtured.
Canadians should strive to build centres of medical excellence in the field of infertility. Let us in the infertility world know that a brighter future lies ahead by making amendments to Bill C-6.
The Chairman: Thank you very much.
[Translation]
Ms. Natasha Baird, as an individual: Honourable senators, first I would like to thank you for your invitation. I am 29 years old and my husband Richard is 30.
At the age of 11 months I was diagnosed with a neuroblastoma located right beside my right kidney. The cancerous tumour was removed almost entirely after a lengthy two and a half-hour operation. The tumour was the size of an egg which is enormous for the body of a 12-month-old baby. Ten per cent of the tumour could not be removed because the surgeon found it was too much of a risk.
At the age of 13 months, I underwent 23 radiation treatments over a period of three weeks. After many follow-up examinations, spinal taps and 24-hour urine tests, I remained in a state of remission until the age of five years, when I was finally considered cured.
At the age of 16, my mother sent me to see the doctor because I had not yet started menstruating. After numerous blood and ultrasound tests, the specialist explained to me that my ovaries were not working and that I would never be able to produce any ovocytes. I was also told that my uterus was the size of a prepubescent child's and that my hormonal rate was that of a post-menopausal woman. In other words, I was infertile. I asked why this was. The doctor answered that my ovaries were not working because they were destroyed by radiation when I was a child.
My doctor prescribed estrogen and progesterone supplements in order to allow me to have a menstrual cycle. It was thus hoped that my uterus could develop and that I would be able to bear a child with the ovocyte of a donor. I must admit that I was most desperate. I wondered if I would ever have a child and if some day someone would agree to marry me given my condition.
Around 26 years of age, I was referred to the Fertility Clinic at the Ottawa Hospital. The specialist at the clinic told me the only way I could ever bear a child would be thanks to a donor's ovocyte. Having no sister, I had to turn to my friends or an anonymous donor. I found it hard to explain to my friends what they would have to do in order to donate ovocytes. I just could not imagine how I would be able to obtain ovocytes from an anonymous person without going through a donor bank.
To be a donor, a woman must spend a minimum of 56 hours in a medical establishment far from her family and her profession.
In my opinion, financial compensation would be adequate for the physical efforts these women undergo and not just for the simple sale of ovocytes. If the amounts involved were moderate, it would be easy to discourage anyone seeking financial gain.
I hope that you will consider my situation and that of all those men and women who need gamete donors or the services of a surrogate mother.
Many Canadian citizens will never be able to become parents without those options. Those people suffer from infertility caused either by radiation or chemotherapy treatments, major operations, medical conditions or a major deficiency with their reproductive organs. Over four per cent of the female population goes through menopause before the age of 40. This condition can affect women as soon as they are teens.
If this bill is passed, many Canadians will be able to go to the USA for treatment. Those who do not have the financial means will suffer the most from this injustice known as infertility.
[English]
Ms. Rita Schnarr, as an individual: September 27, 2002. Dear Diary, the realization that my body has failed me once again is overwhelming. Rage, anger, disappointment and hatred toward my own body have consumed me with a deep, indescribable sadness.
I will probably never be able to hold my own child in my arms and hear their sweet voice telling me they love me. My dream of ever being a mother is gone.
Thank you for giving me the opportunity to speak on behalf of the half-million people in Canada affected by the disease of infertility. My name is Rita Schnarr, and I am the former British Columbia chapter leader and a member of the board of directors of the Infertility Awareness Association of Canada.
When I was diagnosed with unexplained infertility, I decided to reach out and try to help others who were also facing this same personal challenge. My volunteer work has involved numerous hours of support, education and counselling to over 100 couples.
I have shared my story in Reader's Digest, IAAC journals and in an interview with CBC Radio to try to help these 1 in 6 couples desperate for answers and direction.
Today I stand before you with less than seven minutes to share a snapshot of my past eight years of unrelenting pain in experiencing infertility, and to also urge you to consider our perspective as you deliberate the passing of Bill C-6.
Over the past eight years, I have had six intrusive gynecological-related surgeries, four in vitro fertilization cycles, in which I had over 125 needles injected into my body, 12 embryos transferred into my uterus with no successful results, several hours of grief counselling and a million minutes of hoping and praying that I could get pregnant and have a baby. I have lost count of how many days of depression I have had and tears I have shed over our repeated attempts to become parents.
The purpose of sharing my own experience is not to earn your pity, but to share with you what most Canadians with infertility experience on an ongoing basis. The passing of Bill C-6 will only add to the stress and the anguish we already face. Although we have several concerns with Bill C-6, given the short time, I will address only two — access and health and safety.
My husband and I decided not to continue our pursuit of an egg donor because of the difficulty of trying to find someone willing to donate the approximately 56 hours of required time in a clinical environment and to have her eggs retrieved out of the goodness of her heart, without being compensated for her time, medical costs, child care, travel, lost wages and fees for services.
Once most potential egg donors discover what is involved with a typical IVF cycle, and find out there will be extreme discomfort when a large needle is poked through their vaginal wall to retrieve several eggs from their ovaries, they are not interested, especially if there is no compensation. When we look, in comparison, at the 3 per cent of Canadians who currently give blood, how can we expect people to donate sperm and eggs?
I have consoled people who were born without a uterus, have diabetes, Crohn's disease, lupus, cancer, endometriosis, or have had a hysterectomy because of a medical disease. It is heartbreaking when they consider the fact that, in addition to this fate, they will also probably never become parents.
Let me ask you this question: If you had the desire to have a child and were told that you could not because of a health condition, would you not be adamant in also exploring every opportunity to build a family? If you walked in our shoes, I can assure you the answer would be yes. Just for a moment, imagine your current family portrait minus your children.
After all the counselling I have provided over the past two years, I can assure you that because people with infertility feel a sense of urgency and pressure, they will explore every option to try to fulfil their dream of becoming parents. That leads me to our next concern, which is health and safety.
Overly stringent regulation will only lead to a dangerous kind of deregulation. Those people who cannot afford to seek alternatives across the border or overseas might have to risk their health, because they will resort to self-help methods such as using unscreened semen. The possible transmission of infectious diseases will put children and women at risk, which will, in turn, result in increased costs to the Canadian health care system. Criminalizing — I still cannot get over it — criminalizing currently accepted practices will not stop infertile people from seeking more options. It will force them underground and possibly create a black market where there are no safeguards and laws.
We believe that our government should provide support, not deter Canadians from wanting to be parents. Remember, this is a basic, fundamental biological urge that is overwhelming, if not impossible to overcome. It is our hope that the Standing Senate Committee on Social Affairs, Science and Technology gives this segment of the Canadian population the rights and the freedom of choice as patients and as Canadian citizens.
Dear Diary, today I had an opportunity to speak to our senators concerning Bill C-6 on behalf of Canadians with infertility. I hope and pray that they take what I had to say into consideration when they make a decision that will either ease the already burdensome path we have to parenthood, or break the hearts of many who hope to build families here in Canada.
Ms. Catherine Clute, as an individual: My mother used to say the best always comes last.
I would also like to say before I start, Senator Kirby, that it is a pleasure to finally meet you. On my bookshelf at home, I have a copy of the Kirby report from my time working at the Department of Fisheries and Oceans. It is nice to put a face to the book.
The Chairman: You just made me feel really old.
Ms. Clute: However, I was there too.
Today I speak not only from my perspective as an infertility patient and someone who has provided infertility support over the past 12 years in Nova Scotia; I also speak from my perspective as a mother by adoption.
I am also a member of a coalition, COMAR, the Coalition for an Open Model of Assisted Reproduction. We have made presentations at various stages on this bill.
With third-party conception, which is what I want to speak to you about, families are created of people who do not share a genetic bond, just as is the case in adoption. We feel strongly that the adoption community has a valuable perspective on, and interest in, the proposed legislation. Many of us are not only survivors of the infertility struggles, but we also know about building families with the genetic contribution from elsewhere, or assistance from someone else. We are living with the consequences of decisions made in previous times.
It is very difficult for legislation in such a complex field to please everyone. However — and here I differ from my co-journeyers in this — there are many aspects of the proposed legislation we like.
We like the idea of a regulatory body. We like the idea of regulation — of having some kind of controls. As Senator Cordy pointed out earlier — and Senator Pépin said the same thing — there were a lot of mistakes made in adoption in the past.
This morning, as I drove to the airport, I went by the monument to the butter-box babies in East Chester, near where I live. Horrible things happened in the past in adoption, and these mistakes must not be repeated when we are using third-party conception.
Books have been written about the damage done in adoption — the market-driven practices, the shame, et cetera. We must not allow a market-driven method of dealing with third-party conception to continue.
Therefore, we support the ban on payment for sperm, eggs, gametes and surrogacy, and we applaud the SOGC for their position on this matter. In adoption, openness and honesty are now the norm. In adoption, the mandate of all involved is the welfare of the child. The wishes of the doctors or either set of parents never outweigh the needs of the children, even though this is sometimes painful to hear when trying so hopefully to build our families. Sometimes we feel this is very intrusive, which is one reason we support the provisions for counselling in this bill.
Infertility and its treatment are emotionally draining. It is not for the faint-hearted — you would not choose to go this route — but it is also only the start.
When I was first trying to conceive and to build our family, I would have chopped off my right arm if someone had said, ``OK, Catherine, that is all you need to do to get pregnant, to sustain a pregnancy and to deliver a baby,'' and I would have learned to write with my left hand.
When our son joined our family, my perspective changed. I was really glad I had not cut off my right arm because I needed it to care for my child. Now, I would give both my arms for my son.
That is what this is about. That is what families are about.
One of the arguments that I have heard today, which is also put forward by people who want an unregulated approach to assisted reproduction, is that it is impossible to adopt.
We understand adoption is not for everyone. Not everyone can choose it. Many people choose donor conception or surrogacy arrangements because they are under a misconception there are no children for adoption in Canada. That is not true. There are 76,000 children in foster care in Canada as of today. Twenty thousand of those are available for adoption. Not all are babies, but all are deserving and in desperate need of forever families.
Adoption does not cure infertility, but nor, as we have heard earlier, does donor sperm. It just bypasses the problem, as do some other techniques.
This is my son. He is real. He joined our family by adoption. We did not spend $20,000 to find him. We did not go to exotic countries. We did not wait 15 years for him. He was born in Nova Scotia. Had we adopted him in Ontario, we would not have been allowed to buy his birth mother a cup of coffee because that would have been against the provincial rules.
Our son is nine years old. As you can see, he is much younger in this photograph because we have been waiting for legislation for a long time.
He knows his birth sister. He knows his birth mother, and he understands their role in his life. We have facilitated, and will continue to facilitate, that relationship because it only makes sense. Children can never have too many people to love or to help foster their sense of identity. We are hearing now from people conceived through donor conception that they have a need for a sense of identity similar to adopted persons.
This bill offers a snapshot of the donor's medical history. We are lucky. We know my son's birth mother. I can ask her if something weird happens. Her mother recently passed away as a result of complications from a stroke. I know that because we are in contact with her.
It is a good start to have medical information, but it is not enough, just as it is not enough in adoption. Information changes. There are 3,000 medical conditions and diseases, including things like Crohn's disease, with a genetic component.
Therefore, we support the provision for a registry to manage the situation. My reading of the backgrounder on the registry that Health Canada produced is that the information on people who have merely accessed basic treatment without third-party involvement is non-identifying. The information is aggregated for tracking trends. Numbers are not assigned to people.
This proposed legislation sets up two tracks: Donors who choose to be identified, and those who do not. This is less progressive than adoption registries in certain provinces. That is a concern to us, but the bill at least provides a start.
Families using adoption used to be advised not to tell. Today, with third-party conception and donor insemination, doctors have long told their patients not to disclose information to anyone, including their children. The surrogacy arrangements being brokered by medical professionals or private individuals, who may or may not have social work training, carry that same advice for intended parents. People need to be counselled as to the long-term ramifications of their decision and given tools or advice on how to talk to their children.
Parents need to be made aware of the issues before they make decisions. For example, they must not have a suggestion sprung on them, such as using donor sperm, when recuperating from egg retrieval, which is painful and difficult. If you are undergoing an IVF procedure and they discover a problem with your partner's sperm, it is not the time to start talking about donor sperm. That must occur before. We strongly support the requirement for counselling included in this bill. We would prefer that that counselling be done by trained, accredited mental health experts who would operate independently from the for-profit clinics.
In adoption practice today, if I were to show up at a social worker's office and say, ``We are not going to talk about adoption with our child,'' we would be laughed out the door. The adoption would not proceed.
However, that attitude still exists for those who access embryos, sperm or egg from third parties or use surrogacy arrangements. This happens under the premise that the child is so loved, wanted and desired that nothing else matters. However, adopted persons and donor offspring have told us otherwise. These things matter and the secrecy surrounding family origins can be a destructive influence on family relationships.
Children, whether they come to us through adoption or assisted reproduction, need to be appreciated and honoured for who they are. This proposed legislation is not about me. It is about the needs of our children and the message that we are sending to them.
The Chairman: I will say on behalf of all of us that this has been an absolutely amazing experience, hearing all of you. One of the dangers that one often runs into in Ottawa is that you wind up dealing with bills that have an impact on real people, but you never see those people. You wind up talking about it at an abstract policy level. I am delighted that all of you took the time and effort to come here and spend a long period of time with us.
Senator LeBreton: I will start with Mr. Tavner and Ms. Sheehan. When you are confronted with a situation such as yours, what process do you go through? Where do you turn? What kind of support is there in the medical community?
I know that you can go to your family doctor and perhaps be referred to a fertility clinic. I had not realized until we started to review this bill that there was such a lack of information and support in the medical community. Where do you start?
You tell your personal story when you come to the realization that you will take some measures like this. What process do you go through? It must be pretty gut-wrenching.
Ms. Sheehan: We started with our family doctor. He referred us to a fertility clinic. You quickly start to network with other fertility patients. Your knowledge of the field grows.
It is amazing how much I have learned about the medical profession and what is available. I slowly began to learn about the successful clinics and how to get there. We learned how to find the drugs.
There is an entire network outside the medical field run by the fertility patients that works extremely well. In the small group of people we know, seven have visited the Cornell Medical Center because it was found that they were doing a procedure that was greatly helping the success rate of patients like Brad and me.
It is an informal network, but it works very well. People still call me. They get my phone number from who knows where to ask questions about where to go for drugs, funding, et cetera. It is informal.
Ms. Clute: The Internet has been a wonderful tool for this. There are several bulletin boards with ongoing chat rooms. IVF Connections.com started five years ago with five bulletin boards. They now have 150. If you have specific issues, you can locate people.
Senator LeBreton: Is there not a possibility that you could be getting bad information? How do you know?
Ms. Clute: There is that possibility, but you follow up with your own sources. Medical journals are accessible to regular people. My husband has non-Hodgkin's lymphoma, which has nothing to do with infertility. The good thing about the Web is that anybody can publish anything. The bad thing is anybody can publish anything. We get used to finding out where the studies are.
Senator LeBreton: That puts a terrible onus on you to try to work your way through what is valid.
Ms. Clute: It is better than it was.
Ms. Sheehan: We also consulted a Canadian fertility doctor to discuss going to Cornell and to determine whether we had lost perspective or if it was a viable option. He said that it is the best in the world.
Mr. Tavner: All the medical professionals with whom we have dealt have been extremely helpful.
They have given fact-based information, and when we talked with our peers and when we read any of the shelf-full of books that we have on the subject at home, they all seemed to give support. We do not feel we have been misled but that we have had good treatment.
I would like to add, because I think it deals with your question, senator, that the people today coming out at the far end of the treatment are very different from the people who entered. We entered with the thought that taking pills for a few days of each cycle was relatively invasive. We exited at the far end with the thought that taking injected drugs multiple times every day for weeks at a time, followed by intrusive medical procedures — because this is what is required for us to have our children — is okay. That is beyond the $100,000 that we have spent on treatments.
Senator LeBreton: That is the other thing. You are fortunate to have been in that position. Have you encountered, through your networking, people who do not have that ability?
Ms. Sheehan: We have encountered people who have signed up for multiple credit cards and put a little on each one and are now stuck with a 23- to 25-per-cent interest charge on $50,000. They were willing to do that and understood going into the situation, but stated, ``This is what I will do to have a family.'' That is what we worry about. It is a terrible burden.
Senator LeBreton: Did you have something to say, Ms. Baird?
Ms. Baird: When I decided that I should start a family, I started looking for a donor. I found that there were no egg donation banks in Canada. I called IAAC and spoke with Ms. Hanck and said that I was looking for eggs. She said that the waiting lists are long, up to five years. At my age, I can handle it, but women who are 37 or 40 who are looking for eggs need donors now because at 42 or 43 it is difficult.
Senator LeBreton: The clock is ticking.
Ms. Baird: That is my perspective. The absence of egg banks in Canada is appalling. I was looking at the United States. I was saying that I would save up my money and go to the United States. That is what I will do if I have to.
Ms. Clute: The demographics are a little different in Nova Scotia. I meet many people who are unable to take the next step and have IVF because they cannot afford it. I have met people who cannot afford the surcharge for sperm at the clinic in Halifax. They have not been able to do it, so they self-select out of the process early on. You meet people who nearly mortgage their houses, and those who run into a dead end and make medical decisions based on their pocket book and nothing else.
Senator LeBreton: That is a sad commentary. Ms. Schnarr, do you feel you have had enough support? Do you think there is enough information? You, in particular, had a very compelling story that was very hurtful in many ways. Are we really lacking medical support in this country?
Ms. Schnarr: Absolutely. I had one gynecologist tell me to go home and drink some orange juice because it was all in my head. This is not a lie. I had a series of surgeries leading up to the discovery that I was infertile. It was very difficult to get information, even when I made it to the fertility clinic. It was a very patronizing environment. I felt like a cow being stamped in a line-up. This is an example. There is not much information. They give you an overview, but you really do not know the reason you are there until you actually go through the process. I did a lot of reading. I ordered many books through Amazon.com. I searched the Internet and spoke with people. I was very disappointed to see the lack of group and network support. In British Columbia, there was nothing at the time. This was my reason for starting the IAAC group two years ago. I believe in education and supporting people through knowledge. My mandate was to set up somewhere people could come together and share their experiences. They could discuss what they had been through, share the information that they had learned and bring in guest speakers, so that they could have many more options than I did when I first began my journey eight years ago.
Senator Léger: I have heard poignant pleas for the people who have to live with infertility. It is love. You love children and you want a child. It is a fulfilment. It is human love. I wish I would hear the same on the part of donors, because in the end, it seems as if your argument states that if we give money, we will have donors. Am I not interpreting this correctly? It is so true and I am with you fully, but I wish I could hear the same passion from the ones who will donate. Is this possible without the money? Ms. Schnarr, you are the one who provoked this question.
Ms. Schnarr: There are very few donors out there, currently. Those who are willing to go out of their way to do this, such as the mentioned egg donor, go through a long process. It is not like going to give blood. It is probably one to two months, plus their commitment of time and physical sacrifice. If we take away any form of compensation to cover their time and the expenses incurred, they will not be interested in providing their services. They are not in it to make money. That is not why they do it. They want to be compensated because they are going out of their way to do this.
Senator Léger: I agree with this entire path that has to be there. It has to be more than just money, I hope.
Ms. Schnarr: Most want to do it out of the goodness of their hearts. They really do, but there has to be some form of compensation, otherwise they will be incurring much expense and that is not fair to them.
Ms. Clute: I am a blood donor and I have also registered to be a bone marrow donor. I filled out the organ donation portion of my driver's licence and I really do not expect to be paid for any of it. If I do have to provide bone marrow or whatever, the proposed legislation does say that expenses would be covered. It is the buying of the actual eggs. There could be room for an altruistic system of donating, otherwise, why not call them vendors, because if we are buying, that is what they are. Let us call it what it is.
Ms. Schnarr: They are not buying their eggs but buying their services.
Ms. Baird: I would like to say one thing about egg and sperm donation and to compare it to adoption. Ultimately, if I do not get pregnant one day, I will be going for adoption. I know that there are people in Canada who actually offer adoption for free. However, I called the Children's Aid Society of Ontario and said, ``Your waiting list is pretty long.'' I also thought that if it does not work out we could go to China. It costs $25,000 there. If I want to go for an IVF cycle with an egg donor, it is $8,000, and I would expect that all the expenses and everything included would cost about $5,000. This is cheaper than $25,000. You are talking $10,000 less. If you are saying that you are buying a life when someone else is selling eggs, then what is going on in adoption? You are paying for this.
Ms. Clute: Our adoption, which was a private, domestic adoption in Nova Scotia, cost us $1,500 for our legal fees.
[Translation]
Senator Léger: You say that if the compensation for costs were moderate, it would be easy to discourage anyone needing financial gain; could you explain what you mean by that?
Ms. Baird: As an engineer, I provide building or sewage construction services for which I am paid, but I do not think that one should benefit from the donation of ova or sperm, because it causes some physical inconvenience. It is not a compensation of $200 or $300 that would be enough to encourage someone to earn a living by donating ova or sperm.
Senator Léger: Would that not influence the clinics or those who make an industry of it? Would they be easy to discourage?
Mr. Richard Poulin: Limiting the costs involved in the sale of ova should be a deterrent. Someone should not pay $20,000 or $25,000 for that.
The Chairman: I thank the witnesses for coming here today.
The committee adjourned.