“They Were My Eggs; They Were Her Babies”: Known Oocyte Donors’ Conceptualizations of Their Reproductive Material

“They Were My Eggs; They Were Her Babies”: Known Oocyte Donors’ Conceptualizations of Their Reproductive Material

Women’s Health “They Were My Eggs; They Were Her Babies”: Known Oocyte Donors’ Conceptualizations of Their Reproductive Material Eric Blyth, PhD,1 Sa...

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Women’s Health

“They Were My Eggs; They Were Her Babies”: Known Oocyte Donors’ Conceptualizations of Their Reproductive Material Eric Blyth, PhD,1 Samantha Yee, MSW,2,3 A. Ka Tat Tsang, PhD2 1

University of Huddersfield, Queensgate, Huddersfield UK

2

Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto ON

3

Center for Fertility and Reproductive Health, Mount Sinai Hospital, Toronto ON

Abstract

Résumé

Objective: We sought the views of women who took part in an altruistic known oocyte donation program to provide insights into the dynamics of known oocyte donation in Canada.

Objectif : Nous avons cherché à obtenir les opinions de femmes ayant participé à un programme de don d’ovocyte altruiste connu, et ce, afin de mieux comprendre la dynamique du don d’ovocyte connu au Canada.

Methods: Semi-structured interviews were conducted face-to-face or by telephone with 15 Canadian women who had donated oocytes to a friend or a relative for family-building and 18 women who had received oocytes donated by a friend or a relative in the eight years prior to the interview. Results: Donors and recipients recounted few problems with their experiences of oocyte donation. Donors’ positive experiences were contingent on their desire to facilitate the family-building aspirations of a friend or relative and the trusting relationship they had with their recipient. These dynamics subsequently affected their perceptions regarding the embryos created using their oocytes and their relationship with any child born as a result of their donation. Most donors would not donate their oocytes to an anonymous recipient and would not support donating unused embryos created with their oocytes to an unknown recipient. Conclusion: Altruistic known donation is an important feature of oocyte donation programs in Canada, where commercial procurement of gametes is forbidden. Legal clarity, information, and psychosocial counselling are essential to minimize relationship problems in known oocyte donation.

Key Words: Known oocyte donation, unused embryos, perceptions of reproductive material, embryo disposition, counselling

Méthodes : Des entrevues semi-structurées ont été menées en personne ou par téléphone auprès de 15 Canadiennes ayant fait un don d’ovocytes à une amie ou à un membre de la parenté à des fins de grossesse, ainsi qu’auprès de 18 femmes ayant bénéficié d’un don d’ovocytes de la part d’une amie ou d’un membre de la parenté, au cours des huit années précédant l’entrevue. Résultats : Les donatrices et les donataires nous ont fait part que leurs expériences en matière de don d’ovocyte n’avaient donné lieu qu’à peu de problèmes. Les expériences positives connues par les donatrices étaient subordonnées à leur désir de faciliter les souhaits de grossesse d’une amie ou d’un membre de la parenté, ainsi qu’à la relation de confiance qu’elles entretenaient avec la donataire. Cette dynamique a subséquemment affecté leurs perceptions à l’égard des embryons créés au moyen de leurs ovocytes et leurs relations avec les enfants dont la naissance (le cas échéant) était attribuable à leur don. La plupart des donatrices ne feraient pas don de leurs ovocytes à une donataire anonyme et ne soutiendraient pas le don, à une donataire inconnue, des embryons non utilisés ayant été créés au moyen de leurs ovocytes. Conclusion : Le don altruiste connu constitue une importante caractéristique des programmes de don d’ovocyte au Canada, où l’échange commercial de gamètes est interdit. L’obtention d’avis juridiques clairs, l’information et le counseling psychosocial s’avèrent essentiels pour minimiser les problèmes relationnels dans le cadre du don d’ovocyte connu.

Competing Interests: None declared. Received on March 31, 2011 Accepted on May 10, 2011 J Obstet Gynaecol Can 2011;33(11):1134–1140

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“They Were My Eggs; They Were Her Babies”: Known Oocyte Donors’ Conceptualizations of Their Reproductive Material

INTRODUCTION

D

onation of oocytes for family-building provides an important component of contemporary assisted reproductive technology procedures. Donors may themselves be fertility patients donating in exchange for free or discounted treatment (egg sharing), altruistic nonpatient donors, commercial oocyte providers, or women donating, usually altruistically, for a friend or a relative. In Canada neither egg sharing nor commercial procurement of gametes is legally permitted,1 and oocyte donation involving anonymous altruistic donors is uncommon. Consequently, oocyte donation in Canada is heavily dependent on women who donate altruistically to a known recipient such as a friend or family member.

donation in the Canadian context. While previous studies have explored donors’ motivations, few have examined donors’ conceptualization of their donated reproductive material and how these perceptions might contribute both to their decision-making and to their experiences of donation.9 A necessary element of ensuring that donors and recipients are fully informed about the possible implications of embarking on the donation process therefore includes consideration of the donor’s views about her reproductive material and the purposes to which this might be put other than to help her intended recipient conceive. Such considerations contributed to the study we describe here, which was designed to provide increased insights into the dynamics of known oocyte donation in Canada.

While the objective of oocyte donation is to facilitate the family-building aspirations of the recipient, IVF procedures often result in cryopreserved embryos remaining after the recipient has completed treatment. When unused embryos remain following treatment, they may be kept in storage (subject to any regulatory or legislative restrictions on the maximum cryopreservation period), destroyed, donated for research or medical training, or relinquished to one or more individuals or couples for family-building.

MATERIALS AND METHODS

A growing body of research studies indicates the difficulties experienced by recipients in reaching a decision about disposition of their unused embryos, especially if they have been successful in conceiving a child.2 Relinquishing them to others for family-building is frequently the least-favoured option; those who initially indicate an intention to relinquish unused embryos for family-building often change their minds when faced with the reality of making a final decision.

Eighteen donors and 20 recipients had either relocated to an unknown address or could not be contacted. Nineteen of the 30 contacted donors agreed to participate. Two of these subsequently could not be contacted, and one withdrew because of time pressure. Another donor was excluded because she had “donated” to her same-sex partner and did not consider herself a donor. Twenty of the 28 recipients contacted agreed to participate; of these, one could not be contacted subsequently, and one was excluded from the study because she and her donor had come to know each other only because of the donation. Interviews with 15 donors and 18 recipients were therefore available for analysis.

However, these studies have rarely distinguished between disposition of embryos created with donor gametes and those using the recipient couples’ own gametes. Studies that did so have reached contradictory conclusions. Two retrospective reviews of disposition decisions found that couples with unused embryos created using donor gametes were far more likely to relinquish them for family-building than couples with unused embryos created using their own gametes.3,4 In the only other study we have identified that made similar comparisons,5 no such differences were reported; however, in all these studies the samples were very small, and in none was there any indication that the embryos were created with oocytes provided by a known donor. Internationally, research focusing on the psychosocial aspects of altruistic known oocyte donation is limited, although three previous Canadian studies have been undertaken,6–8 indicating the importance of this type of

Forty-eight women who had donated oocytes for familybuilding to a recipient known to them and 48 women who had received oocytes from a known donor between January 2000 and February 2009 via a single hospital-based IVF clinic in a large Canadian metropolitan area were invited to participate in a semi-structured face-to-face or telephone interview. Such arrangements represent the dominant model of oocyte donation in Canada.

Interviews were audiotaped and transcribed verbatim. Transcripts were imported to N-VIVO version 8 (QSR, Doncaster, Victoria) for coding and were thematically analyzed. Investigator triangulation was achieved by members of the research team independently analyzing transcripts through an iterative process of coding recurrent themes using “constant comparative methods.”10 Anonymized extracts from interviews are used in this report to illustrate participants’ conceptualizations of genetic material in known and anonymous oocyte donations and in embryo donation. Ethical approval was obtained from the hospital in which the study was undertaken and from the authors’ employing universities. NOVEMBER JOGC NOVEMBRE 2011 l 1135

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RESULTS

The ages of the 15 donors and 18 recipients participating in this study are summarized in Table 1. The mean age of donor participants was 29.8 years (range 22 to 35) and of recipient participants 35.6 years (range 27 to 44). The lengths of time that elapsed between the donation or receipt of oocytes and the interview are summarized in Table 2. Conceptualization of Oocytes in Known Donation

Data analysis revealed that donors had complex and potentially conflicted views about, and relationships with, their donated oocytes at different stages of the donation process. These concerned two principal interrelated themes: disengagement from their reproductive material and responsibility for it. Oocytes were often described as insignificant except as a means of facilitating their recipient’s conception; once donated, proprietal rights to the oocytes were vested in the recipient, and the recipient, not the donor, was the mother of any resulting child. One donor commented, “They were my eggs; they were her babies.” Donors also tended to minimize the significance of their oocytes by referring to them as “just” eggs, which, unless fertilized, “never would have become anything.” The act of oocyte donation was similarly downplayed as merely an instrumental act whose principal purpose was to facilitate a very wanted pregnancy for the recipient. Several donors specifically likened their donation to that of blood or human tissue, while recipients recorded sentiments similar to those expressed by their donors that they were only donating human cells, not giving the recipient a human being. Accompanying such perceptions, donors acknowledged that after donation they no longer felt responsible for their oocytes or psychologically attached to them. Accountability was transferred to their known recipient: “When I gave these eggs to them, [they were] theirs. I really let go of ownership of them.” As a corollary, where the donation had resulted in a successful birth for the recipient, donors continued to distance themselves psychologically from the child by amplifying the gestational and nurturing bond between the child and the recipient. They thereby emphasized and endorsed the recipient’s role as the child’s mother: “They really are hers, like I mean she carried them and everything.” Accentuating the recipient as the child’s mother also meant downplaying any sense that the donor might develop, or be seen as having, any maternal bonding with the child: “The child is not mine, like I don’t think of her as mine.” 1136 l NOVEMBER JOGC NOVEMBRE 2011

Table 1. Ages of donors and recipients at time of donation Age, years

Donors, n

Recipients, n

21 to 25

03

00

26 to 30

04

04

31 to 35

08

05

36 to 40

00

06

41 to 45

00

03

Total

15

18

Table 2. Interval from donation to interview Interval, years

Donors, n

Recipients, n

≤2

05

08

2 to 4

07

06

4 to 6

02

04

6 to 8

01

00

Total

15

18

Additionally, donors provided an account of their current and future relationship with the child as a function of their relationship with the recipient, rather than as defined by their genetic relationship with the child. However, as donors reflected in more depth on their experiences, the complexity of their feelings about genetic relationships and responsibility for their reproductive material became more apparent: “They’re just eggs. It’s just like donating any other organ, but I mean in the end, you know [donorconceived children] are going to look more like me sort of thing . . . I was donating something that wasn’t an organ, but it was much more personal.” Conceptualization of Oocytes in Anonymous Donation

On the other hand, most donors were not prepared to donate their oocytes to any other potential recipient, particularly if the recipient’s identity was not known to them. Several donors expressed the moral responsibility they felt in being part of the process that would bring another being into the world. It was evident that this group of donors, at least, felt secure in abdicating their own responsibility for their oocytes precisely because they knew the recipient(s) and trusted them to act responsibly with the oocytes and to be caring parents for the resulting child or children. All except one of the donors were unwilling to consider donating to an unknown recipient: If it’s someone I don’t know that would make me nervous . . . It would be important to me

“They Were My Eggs; They Were Her Babies”: Known Oocyte Donors’ Conceptualizations of Their Reproductive Material

that they are in a stable marriage and that things are good in their life, and I think sometimes when people go through that process they’ll say anything or do anything to get a baby and I would be very nervous that they would be lying to me or acting like everything is stable. Therefore when donors speculated about the potential implications of anonymous oocyte donation, they articulated concerns that were largely absent from their reflections on the donations they had actually made to their friend or family member. Whereas donors perceived few problems for either themselves or their own children in donating to a friend or relative, they were concerned about the existence of unknown genetically related offspring and considered them as their children’s siblings. Some donors worried about the possibility, however remote, that their own children might develop a romantic relationship with a half-sibling born through anonymous oocyte donation: “The fear in me was the prospect of my future child meeting somebody and falling in love with them, and it’s their brother or their sister—that just terrifies me.” Conceptualization of Embryos

In considering the disposition of unused embryos created with their oocytes, only two donors appeared content to allow their recipient to determine their future. Most donors were unwilling to contemplate the donation of any unused embryos to an anonymous party: “They asked if we wanted them destroyed or to give them to somebody else or to use them to science . . . it wasn’t something I was feeling for other people. It was something I was doing for them.” Some donors were concerned about the potential creation of siblings of their own children who would be raised by an unknown couple. These donors recalled their initial decision to donate only to a recipient they knew and with whom they had a prior positive relationship, but not to a recipient about whom they knew nothing. Most recipients expressed willingness to respect the donor’s preference in making decisions about the disposition of unused embryos, acknowledging both the generosity of the donor in donating her oocytes in the first place and the fact that the donor’s intention had been specifically to donate to the recipient personally and not donate her oocytes to “just anyone.” Ambiguity about the legal rights to, and ownership of, donated reproductive material may create potential conflicts between donor and recipient if they have different personal preferences with regards to future embryo disposition plans:

I discussed [embryo donation] with [donor], what and how she felt, because I wanted to be respectful of her wishes, too . . . if there were certain things she didn’t feel comfortable with. But technically I didn’t have to do that; I could do whatever I want. . . . [Donor] said “I was angry because [staff] weren’t directing the questions at me,” and I said, “Well, they’re really not yours.” . . . “I’m not saying this to be mean, but the reason they did that is because of this, because it’s no longer your decision, because you donated them.” DISCUSSION

Our study has a number of limitations. First, the sample was a small, self-selected group of participants from a single oocyte donation program, consisting of 15 of a possible 30 donor participants (50%) and 18 of a possible 28 recipient participants (64%), although samples of this size are common in qualitative studies of this nature.9 Second, we do not know whether the study participants were significantly different in any way from non-participants, although we can speculate that participants may be more likely than non-participants to have had positive experiences of oocyte donation. Nevertheless, participants in known oocyte donation reportedly experience few difficulties, as discussed below. Third, the cross-sectional approach means that participants’ reported views represent a snapshot that may be relevant only at the point of data collection. Finally, participants’ retrospective review of their experiences might be subject to deficient or revised recall of past events or feelings. However, this approach enabled participants to reflect on up to eight years’ postdonation experience, and despite these limitations we believe the study provides useful insights to inform both current and future service delivery and future research. Oocyte donation between a donor and recipient previously known to each other has been acknowledged as an acceptable form of family building.11–13 It may be regarded as a viable option for family-building, especially in jurisdictions such as Canada, where commercial gamete procurement is prohibited and altruistic oocyte donation between strangers is uncommon. In jurisdictions where commercial14–18 or altruistic19–23 oocyte donation is operational, donation between friends and family members may also make a viable contribution to the overall repertoire of oocyte donation services. Our findings indicate that donors and recipients experience few problems with known oocyte donation. This is NOVEMBER JOGC NOVEMBRE 2011 l 1137

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consistent with findings from previous studies,6–8 although a significant minority of known donors in a Belgian study expressed ambivalent feelings towards the child, principally related to feelings of responsibility and concerns about whether the child would be well taken care of by the recipient parents.24 Donors in our study viewed their oocytes as a means to an end in assisting their recipients to achieve pregnancy; ostensibly, they were willing to transfer responsibility for their oocytes to their recipients and they made no proprietary claims towards any offspring born as a result of their donation. Their relationship to any child born as a result of their donation was invariably defined in terms of their relationship with the recipient, not their genetic relationship with the child. Nevertheless, donors evidenced moral responsibility for their oocytes; such responsibility was muted when they knew and trusted the recipients to be competent and caring parents, but was articulated in the reasons most gave for being unwilling to donate oocytes or to contemplate the donation of unused embryos created from their oocytes to an anonymous recipient. Donors also viewed such embryos as their “virtual” or “potential” children to whom they and their own children are genetically related. This study highlights some areas that merit further consideration by service providers regarding the availability of information and support for both recipients and their known donors at different stages of the donation process. In particular, we draw attention to the findings relating to donors’ views about embryos created with their donated oocytes and the disposition of unused embryos once the recipient has discontinued treatment. Indeed, cognizant of the potential complications, the donation to others of unused embryos created using donated gametes for family-building is currently prohibited in both Australia and New Zealand.25,26 In Canada, the “Consent to Use” regulations governing the use of gametes and embryos for reproductive purposes under provisions of the Assisted Human Reproduction Act 2004 specify the circumstances under which, and from whom, consent is required27: If sperm or eggs are donated by an individual and used to create in vitro embryos for the reproductive use of another individual, and there are embryos in excess of the other individual’s reproductive needs, the other individual for whom the in vitro embryos were created becomes the donor in respect of those excess embryos and their consent to use is required for use of the excess embryos. If they consent to any of the excess embryos being used to provide instruction in AHR [assisted human reproduction], 1138 l NOVEMBER JOGC NOVEMBRE 2011

improving AHR procedures or other research, the individual who provided the sperm or eggs to create the in vitro embryo (i.e., the donor of the reproductive material) must also have provided consent for such use. However, the regulations are silent about the need for the donor’s consent when the recipient is considering donation to others of unused embryos created using donated gametes for family-building. It is not clear whether this omission is deliberate or an oversight, although in the light of our study this ambiguity in the Canadian regulatory framework should be reviewed to provide further legal clarification of such “on-donation” of embryos created using donated gametes for family-building. In common with other investigators who have studied couples’ decisions regarding embryo disposition, a team of investigators in the United States28 observe that “the disposition decision can be seen as a dynamic process that temporally unfolds in stages that begin at the time of original embryo storage.” The implications of this understanding have led a number of commentators to advise that, while an advance directive made at the point of embryo cryopreservation provides a useful reference point for couples to acknowledge and to reflect on the possibility of having unused embryos at the end of their treatment, and the need to make a decision regarding their future, such a directive should not be regarded as the definitive arbiter of the embryos’ fate. Consequently, disposition intentions should be periodically reviewed with couples.11,29–33 While nothing in our study challenges these proposals in principle, the involvement of a known oocyte donor means that the disposition decision has even earlier origins, and necessarily makes disposition planning and decisionmaking potentially more complicated. The dynamics of “on-donation” of embryos created using oocytes provided by a known donor have rarely been articulated in previous studies or commentaries, although one study cites three cases that highlight donors’ concerns.21 These include a concern about whether the resulting children would grow up in caring homes and the interpretation of donating embryos as equivalent to relinquishing children for adoption. Both donors’ and recipients’ views about the disposition of any unused embryos are likely to be dynamic and may change between the time of oocyte donation and the time that a disposition decision for the unused embryos needs to be made. In the Canadian context, the “Consent to Use” regulations specifically state that the consent to use the reproductive material or in vitro embryos for the purpose(s) stated

“They Were My Eggs; They Were Her Babies”: Known Oocyte Donors’ Conceptualizations of Their Reproductive Material

need only be obtained once. There is no need for a new section 8 consent to use prior to each donation or use at a clinic, physician’s office, or other facility.27 In the light of the findings from relevant studies, including our own, of disposition decisions with regard to unused embryos there appears to be a good case to revisit these regulations to ensure that they are sufficiently well grounded in the available research evidence and that they provide adequate safeguards for donors of genetic material, their recipients, and service providers. Finally, it is essential to clarify legal rights and ownership of donated reproductive materials between donor and recipient before initiating the oocyte donation process. Nevertheless, legal certainty does not necessarily make for harmonious donor–recipient relationships, particularly in the event that donors and recipients have, or develop, different personal preferences regarding their disposition options. Even though the risk of such disagreements occurring may be relatively slight, their ramifications on family dynamics and potential negative implications for individuals following the donation may be profound. Service providers therefore should have arrangements in place to minimize such risks. First, donors and recipients should be aware of the legal position regarding their rights and the consent process for managing embryo disposition. Second, before the donation proceeds, both donor and recipient should be made aware of the embryo disposition options and be given the opportunity to discuss their preferences with a counsellor offering both individual and joint sessions. We believe that donation should proceed only if all parties (i.e., including the partners of both donor and recipient) are agreed on the disposition option. Bearing in mind that the views of any of these may change subsequently, it is important that they are offered the opportunity of legal consultation and counselling either if disagreement becomes evident or when a decision about any unused embryos has to be made. While it goes without saying that legal requirements must be followed, counsellors may be able to help resolve conflicts and help promote harmonious relationships between the involved parties and their families. CONCLUSION

In this study, we have provided an initial analysis of known oocyte donors’ views regarding their donated reproductive material. Key to their decision-making and their feelings about oocyte donation was the fact that they had donated to a specific recipient whom they wished to help achieve a desired pregnancy and whom they trusted to take good care of any child. Thus, “letting go” of their oocytes and

minimizing confounding relationships with any child born as a result of their donation was contingent on their trust in their recipient. As a corollary, few donors were willing either to donate their oocytes or to sanction the further donation of any unused embryos created using their oocytes to an anonymous recipient. This unwillingness arose from their lack of knowledge about the child-rearing capacity of such recipients, from the moral responsibility they felt for helping to create a child about whom they would know nothing, and from concerns about potential romantic relationships involving their own children. These findings provide important messages for current practice and for future research that aims to offer a comprehensive understanding of the short-, medium-, and long-term psychosocial dynamics in altruistic known oocyte donation. ACKNOWLEDGEMENTS

Canadian Institutes of Health Research provided funding for this study, “Creating families through altruistic known oocyte donation: a follow-up qualitative study of oocyte recipients and their known donors” (IGO# 86114). The authors wish to thank Dr Ellen Greenblatt and Dr Peter Leung for facilitating this research, the study participants for generously offering their time and sharing their views and experiences, and Janice Betts BA, Rhonda Harris MA, RN, Gabriele Klimstra BSW, and Frisco Yee for assistance in data collection, data coding and data management. REFERENCES 1. Assisted Human Reproduction Act SC 2004:c2. Ottawa: House of Commons, 2004. Available at: http://www.laws.justice.gc.ca/en/ A-13.4/index.html. Accessed August 23, 2011. 2. Blyth E, Frith L, Paul L, Berger R. Embryo relinquishment for familybuilding: how should it be conceptualised? Int J Law Policy Family 2011; 25:260–85. 3. Sehnert B, Chetkowski J. Secondary donation of frozen embryos is more common after pregnancy initiation with donated eggs than after in vitro fertilization–embryo transfer and gamete intrafallopian transfer. Fertil Steril 1998;69:350–2. 4. Brzyski R, Witz C, Eddy C, Pierce J, Binkley P, Shenken R. Association between donor gametes and choice of embryo donation for final disposition of cryopreserved embryos. Fertil Steril 2001;76(3 Supp 1):S197–S198. 5. Hammarberg K, Tinney L. Deciding the fate of supernumerary frozen embryos: a survey of couples’ decisions and the factors influencing their choice. Fertil Steril 2006; 86:86–91. 6. Khamsi F, Endman MW, Lacanna IC, Wong J. Some psychological aspects of oocyte donation from known donors on altruistic basis. Fertil Steril 1997;68:323–7. 7. Winter A, Daniluk J. A gift from the heart: the experiences of women whose egg donations helped their sisters become mothers. J Counsel Dev 2004;82:483–95.

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28. Nachtigall R, Becker G, Friese C, Butler A, MacDougall K. Parents’ conceptualization of their frozen embryos complicates the disposition decision. Fertil Steril 2005;84:431–4. 29. Elford K, Lawrence C, Leader A. Research implications of embryo cryopreservation choices made by patients undergoing in vitro fertilization. Fertil Steril 2004;81:1154–5. 30. de Lacey S. Parent identity and ‘virtual’ children: why patients discard rather than donate unused embryos. Hum Reprod 2005;20:1661–9. 31. de Lacey S. Decisions for the fate of frozen embryos: fresh insights into patients’ thinking and their rationales for donating or discarding embryos. Hum Reprod 2007;22:1751–8. 32. Lyerly A, Steinhauser K, Voils C, Namey E, Alexander C, Bankowski B, et al. Fertility patients’ views about frozen embryo disposition: results of a multi-institutional U.S. survey. Fertil Steril 2010; 93:499–509. 33. Newton C, Fisher J, Feyles V, Tekpetey F, Hughes L, Isacsson D. Changes in patient preferences in the disposal of cryopreserved embryos. Hum Reprod 2007;22:3124–8.