The Personal, Interpersonal, and Political Issues of Egg Donation

The Personal, Interpersonal, and Political Issues of Egg Donation

THE PERSONAL, INTERPERSONAL, AND POLITICAL ISSUES OF EGG DONATION Asha Emsley Randal, at a Canadian university* *The pseudonym for the author, whose n...

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THE PERSONAL, INTERPERSONAL, AND POLITICAL ISSUES OF EGG DONATION Asha Emsley Randal, at a Canadian university* *The pseudonym for the author, whose name and affiliation were transparent to the editor and peer reviewers, was chosen by the author to further protect the anonymity of the couple.

Abstract This article considers the implications of Canada's new legislation, Bill C-6: An act respecting assisted human reproduction and related research, for future oocyte donors and recipients. Specifically, this article explores the prohibition of payment to donors for oocyte donation, from the perspective of a paid oocyte donor.

Resume Le present article se penche sur les implications du nouveau projet de loi canadien C-6 (Loi concernant 10 procreation assistee et 10 recherche connexe) en ce qui concerne les futurs donneurs et receveurs d'ovocytes. II s'affaire particulierement a explorer la prohibition de la remuneration des donneurs d'ovocytes, et ce, du point de vue d'un donneur d'ovocytes remunere.

J Obstet

Gynaecol Can 2004;26( 12): I087-90.

INTRODUCTION

The Canadian government recently passed Bill C-6, An act respecting assisted human reproduction and related research, which contains a number of sections relevant to the donation of gametes. Section 7(1) indicates that "no person shall purchase, offer to purchase, or advertise for the purchase of sperm or ova from a donor or a person acting on behalf of a donor."! Bill C-6 also establishes a regulatory agency to oversee the area of assisted human reproduction and related research, to protect the health and safety of Canadians undergoing assisted human reproduction treatments and the children born as a result of such treatments. In my view, this new law, in general, is a positive step forward, insofar as it represents a firm commitment to protecting the health and safety of Canadians who are

KeyWords Oocyte donation; legislation and jurisprudence, Canada; psychology; harm reduction; anonyms and pseudonyms; confidentiality; tissue donors, ethics Competing interests: None declared. Received on March 2, 2004 Revised and accepted on April 28, 2004

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exposed to assisted reproductive technologies. Paid egg "donation" is a controversial practice, and a complete picture of all the risks of harm is not yet available. This paper, based on my personal experience as a paid oocyte "donor," explores the psychological harms that can accrue to anonymous donors who develop a positive relationship with the recipient infertile couple. It is possible that my experience is unique and idiosyncratic, but I do not believe this is so. 2 Although Bill C-6 prohibits paid egg "donation," more research is needed on the risks of different kinds of potential harms to women who have donated in the past. Further, as altruistic egg donation is not prohibited in Bill C-6, counselling services and the development of practice guidelines are required. When I was 19 years old, I answered a newspaper ad placed by a couple looking for an egg donor. Over the next few months, I communicated frequently with the recipient couple, Allie and Ben (pseudonyms) , but I never met them. In time, they knew everything about me, but I knew almost nothing about them. As we went through this emotionally and physically demanding process, we formed a close and unusual relationship that was both contractual and fiduciary. There was a contract specifYing the terms of an exchange, but also a vesting of trust in one another. Allie and Ben trusted that I would take the medications properly and would not smoke, drink, or use recreational drugs for the duration of the treatment. I trusted that Ben and Allie would be good parents. After I decided to be a paid egg donor, Idid a lot of research on the subject. I visited online chat rooms for egg donors, read numerous books and articles on egg donation and in vitro fertilization (IVF), and talked to Allie and Ben about the procedure at great length. I had initially answered their ad in the newspaper out of curiosity and a desire to help. As our relationship developed, despite the financial arrangements, I felt confident my motivation to continue was strongly altruistic. I thought I knew about and understood the risks of physical and psychological harms. I was willing to accept the physical risks, and I felt confident that I would not suffer any psychological risks. I was not worried of the likelihood that there would be a child born with whom I would share a genetic connection but would never know. What I did not appreciate, however, were the harms that came about as a result of my relationship with DECEMBER 2004

Allie, and the fact that my egg donation, for which I was handsomely paid, failed to result in a pregnancy. There are at least 4 categories of personal and social relationships that can exist between egg donors and recipients: (1) The recipient desires a genetic link to her child, and chooses a family member as a donor; (2) there is an intimate but nonfamilial relationship between the donor and the recipient, in that they may be close friends; (3) as was my experience, egg donation occurs between strangers, but an interpersonal relationship develops over time; and (4) egg donation is an anonymous transfer, in which there is no family or other interpersonal relationship, and no contact between parties. In each of these categories, the "donation" may be paid for or be a completely altruistic act. Common to all categories of egg donation, irrespective of the relationship between the donor and the recipient, and irrespective of the issue of payment, is the risk of psychological harm. When there is a successful outcome of the transaction and a child is born, there are at least 2 kinds of harms that can arise. If the donor has, or intends to have, children of her own, there may be concerns that a branch of the family tree is missing, because there is a child who shares the donor's DNA but remains unknown to the donor and her family. This kind of harm is more likely to be experienced by donors who are neither family members nor close friends with the oocyte recipient couple. Alternatively, if the donor does not have children of her own at the time of donation and is later unable to have children, she may experience harm knowing that the children created using her donor eggs may be her only genetically related children, and if she does not adopt, her only children. During the egg donation process, I was consumed by thoughts about the child who would share my DNA. It never occurred to me that Allie would not get pregnant, even though I understood IVF had a low success rate. 3 I found myself asking, Would I ever meet the child? What would he or she be like? What would the child look like? Would I want to meet him or her? Despite having thoughts about the future person with whom I would share a genetic connection, I was prepared for what the anonymous donation entailed. I was not interested in having a role as a parent, but I was willing to provide the child with information about myselfifhe or she requested it. Allie and Ben agreed to tell me whether a pregnancy had resulted from the donation, but beyond that, we decided there would be no further contact between us. Typically, the infertile couple who turns to egg donation has already tried a few cycles of IVF. The couple has fully invested in the process, and egg donation is a last resort. Allie had already undergone 5 IVF cycles. I had become a kind of saviour for them, despite my insisting otherwise, and I felt an enormous pressure by their longings for a child. But I became excited as their excitement increased, and more confident as their optimismgrew. JOGC

When egg donation fails to result in a pregnancy and a live birth, psychological harm can be experienced by the egg donor, who may feel that she is to blame for the unsuccessful outcome. This harm is perhaps more explicit when the donor is a family member or a close friend and the donor has come to feel a personal obligation to help the infertile woman achieve a pregnancy. What is less obvious, but no less significant, is that such harm can be experienced in the context of anonymous donation, especially when a personal relationship has developed between the egg donor and the recipient. No matter how prepared the donor may think she is for an unsuccessful outcome, the news has an emotional impact. The donor has devoted herself to taking medications, keeping appointments, having regular blood tests to monitor hormone levels and ultrasounds to monitor her ovaries, and finally, has consented to surgery for the removal of oocytes. When strangers are brought together by egg donation, the relationship that evolves is likely to be both intense and ephemeral, and ethical issues may arise. After the retrieval process, Allie and Ben told me how thankful they were, what a wonderful person I was, and where I could pick up my cheque. Six weeks later, I received an e-mail from Ben telling me the treatment had failed and that Allie had fallen into a depression. He thanked me again, and wished me luck. This e-mail came before I had my post-retrieval check-up at the clinic where I was to pick up my cheque. The doctor told me quickly that the quality of my eggs had not been good enough: only 4 of the 16 eggs retrieved had fertilized. "But these things happen. It's not your fault," he said as he removed his latex gloves and left me alone in the examination room. My relationship with Allie was unique, as we straddled the line between known and anonymous. She wanted to keep the egg donation a secret, should a pregnancy result, and therefore wanted to keep a distance between us. She relayed to me her fears of some day being confronted by the donor who, many years later, wanted custody of her child. At the same time, Allie recognized that the gift of egg donation creates a web of obligations, and she felt a special debt of gratitude. My gift to her was both physical and moral, since I was giving not only my genetic material, but also offering any information she wanted to know about me, including my medical history, personality traits and characteristics, and educational background. Allie and I had a great deal of respect for one another, but we were unsure of how to interact. Arbitrary and ambiguous boundaries kept us, and our lives, separate, but we both wanted, and in some ways needed, to have a close relationship, because egg donation is such an onerous procedure for both the donor and the recipient. While the dynamic of our relationship was at times confusing and ambiguous, I believe it is important that each donor and recipient pair be allowed to work out what is the desirable and appropriate relationship for their situation, and that they receive adequate counselling to ensure the relaDECEMBER 2004

tionship remains, for the most pan, a satisfying one. Concerning the issue of donor anonymity, Canada's new law leaves it to the donor and recipient to decide whether the donation shall remain anonymous or secret. By not requiring the donor and the recipient to disclose identity, the Canadian legislators have taken a stand in favour of protecting the donor's identity. Section 15.1 states, "No licensee shall disclose health reporting information for any purpose except (a) with the written consent of the person to whom the information relates allowing its disclosure for that purpose," where health reporting information is defined as "the identity, personal characteristics, genetic information, and medical history of donors of reproductive material and in vitro embryos, persons who have undergone assisted reproduction procedures, and persons who were conceived by means of those procedures."l There are many arguments both for and against anonymous gamete donation. 4 Bill C-6 has left the issue of donor anonymity to the recipient and the donor for the most part, but the donor must provide non-identifying information about their recipients. This decision takes into account the necessity of having access to one's genetic history for medical purposes, but does not undermine the importance of the rearing relationship, that which contributes significantly to the development and well-being of the child. A complicating factor in my situation was that I was paid for the egg donation, so there was more than altruism motivating my decision to become an egg donor. Of course, financial incentives themselves do not preclude altruistic motivations, but money can blur the issues. In many cases of egg donation, the donor is paid a substantial amount of money. If the treatment is unsuccessful, the donor may feel guilty for accepting the money. I was not paid until after the retrieval process, so by the time I picked up the cheque, I knew the treatment had failed. As I cashed the cheque at the bank, I felt weak and my cheeks burned with embarrassment. It was then that I felt the doctor's first opinion of me may have been right-he told me he initially thought I was too young to do this, but that my emotional maturity had convinced him I would be suitable. I was not emotionally prepared for these feelings of guilt and shame. I felt guilty for taking money from Ben and Allie and giving them nothing tangible in return, My eggs were not good enough and I had failed. I felt guilty because I had contributed to, if not caused, Allie's depression. I felt ashamed, because while Allie was suffering over her inability to have children, I knew that if I ever got pregnant before I wanted to, I might consider having an abortion. I felt ashamed and guilty because I could not say that my actions were motivated only by altruism, because, in the end, I did take the money. I felt ashamed and guilty because I felt as though I had deceived them, as though I had made a promise of my own fertility and in the end had been exposed as a liar and a fraud. And I felt disappointment. I was disappointed in myself, I felt that Allie and lOGC

Ben were disappointed in me, and I felt as though the doctors were disappointed with the quality of the eggs I had produced and so were disappointed in me as well. My guilt was exacerbated by the payment. In my mind, I had not made the distinction between being reasonably compensated for my time, inconvenience, and discomfort associated with the oocyte retrieval, and being paid for my oocytes. Furthermore, I was receiving conflicting advice from lawyers, counsellors, doctors, and friends about whether I was being overcompensated or undercompensated. I felt as though I was being unfair to Allie and Ben by accepting the financial payment, but the counsellor at the clinic told me I was being unfair to myself because the amount was too low. Under Bill C-6, payment can no longer be made to a sperm or egg donor. Despite the difficulties I experienced, I question this decision. Egg donation is a risky, painful, and time-consuming medical procedure, and it seems reasonable to compensate the donor a small and set amount for her time, discomfort, and inconvenience (not for eggs themselves). Indeed, other jurisdictions have entrenched this view in their legislation. For example, according to Spanish legislation, oocyte donation must be anonymous, voluntary, and altruistic, but the law allows financial compensation for the discomfort caused to the donor. 5 Prohibiting payment of egg donors does not in itself reduce the risk of exploitation: "Insisting, as many guidelines and regulations do, that egg donors not be financially compensated does not necessarily remove the possibility of undue influence or assuage all concerns about informed consent and risk-disclosure processes."6 Furthermore, one could argue that it is exploitative of women not to compensate them fairly for their labour. The Assisted Human Reproductive Agency of Canada (AHRAC) is a regulatory body that will be established to oversee the area of assisted human reproduction and related research, with a broad mandate to protect and promote the health and safety of Canadians using such technologies. 7 The AHRAC will be responsible for establishing sound practice guidelines for IVF clinics, and for fostering the application of ethical principles consistent with the legislation. The Agency's tasks will include researching other countries' policies and practice guidelines in the transition period in moving towards an altruistic donation system, as well as in developing the regulatory and licencing frameworks. One of the areas to which the Agency ought to pay particular attention is the nature of the counselling services available to both donors and recipients, as it seems clear that such services need revision. The harms I experienced were not the result of the clinic's failure to disclose certain risks of harms, but a failure to appreciate the complexity of the relationship between the donor and the recipient. Psychological screening and psychological counselling are 2 very different procedures, and the 2 need to be kept separate and distinct from one another. The donor and the recipient DECEMBER 2004

should receive counselling outside of the clinic, from professionals unconnected to the process. 6 ,8 This arrangement would allow all parties to be more honest and open about their thoughts and feelings associated with the egg donation. The Agency needs also to develop a clear and concise outline of the precise risks to be disclosed to the donor, by all clinics. The contribution of experiential knowledge of donors is valuable to research and the development of sound policy and practice guidelines. Although Canada has made the decision not to continue with paid egg donation, there are many issues surrounding egg donation that need careful attention. We need to consider the experience of donors so that assisted human reproduction programs may take necessary steps "to minimize the possibility of undue influence and exploitation. The incorporation of safeguards into the disclosure and counselling process is essential. "9 It must be ensured that women are aware of all the possible harms and the wide range of ethically problematic issues related to gamete donation. A5 noted by Sauer, "The challenge lies in ensuring that all medical groups practise with the same rigorous attention to informed consent necessary for recruiting donors and truly educating the women to the risks of participation. "10 I do not regret my decision to donate my eggs to Allie and Ben. I believe that I made an informed choice. I surely understood the risks of physical harm, I believe I understood the risks of emotional and psychological harm, and I had carefully thought through my reasons for wanting to go ahead with the procedure; however, what I did not anticipate were the risks of harm that came largely as a result of the personal relationships I formed. Much occurred that I did not predict, or perhaps could not have predicted, but all of the ethical issues need to be

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further examined. I hope this narrative has some important lessons for donors, recipients, and professionals involved in this process. REFERENCES I. Canada. Parliament. House of Commons. Bill C-6: An act respecting assisted human reproduction and related research. Royal Assent: March 29, 2004. Available at . Cited April 28,2004. 2. Informal accounts of similar post-treatment reactions by egg donors can be found on-line. For example, see . Cited April 28, 2004. 3. In 2003, the Human Fertilisation & Embryology Authority cited a failure rate of 80%. Available on-line at . Cited April 28.2004; in 1993, the American Society for Reproductive Medicine cited a failure rate of 70%. Available on-line at . Cited April 28,2004. 4. For a clear and detailed outline of such arguments see: Cohen CB. Parents anonymous. In: Cohen CB, editor. New ways of making babies: a case for egg donation. Medical Ethics Series for the National Advisory Board on the Ethics of Reproduction. New York: McGraw-Hili; 1999. p. 8S-1 05. 5. Equipo IVI. Oocyte donation programme. Available at . Cited April 28,2004. 6. Johnston J. The women behind cloning. The Washington Post 2004 March 8; A: 19. 7. Health Canada. The assisted human reproductive agency of Canada; March 2004. Available at . Cited April 28, 2004. 8. Cohen CB. New ways of making babies: the case of egg donation. Medical Ethics Series for the National Advisory Board on the Ethics of Reproduction. New York: McGraw-Hili; 1999. 9. Ethics Committee of the American Society for Reproductive Medicine. Financial incentives in recruitment of oocyte donors. Fertil Steril 2000; 74:2 Ilr20. 10. Sauer MY. Should egg donors be paid? Exploitation or a woman's right? BMJ 1997;314:1403.

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