Hum. Reprod. Advance Access originally published online on May 15, 2007
Human Reproduction 2007 22(7):2040-2050; doi:10.1093/humrep/dem103
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A follow-up study of women who donated oocytes to known recipient couples for altruistic reasons
1 Department of Social Work 2 Department of Obstetrics and Gynecology, Mount Sinai Hospital, Toronto, Ontario, Canada 3 Faculty of Medicine, University of Toronto, Ontario, Canada
4 Correspondence address. Mount Sinai Hospital, 600 University Avenue, Toronto, Ontario, Canada M5G 1X5. Fax: 1-416-586-8791; E-mail: syee{at}mtsinai.on.ca
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Abstract |
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BACKGROUND: Current legislation in Canada allows for only altruistic gamete donation. Limited clinical data are available on the emotional and psychological impact of altruistic oocyte donation on known donors.
METHODS: Seventeen women who had donated oocytes to known parties without financial compensation agreed to receive the oocyte donation questionnaire (ODQ) to explore the psychological domains of altruistic oocyte donation.
RESULTS: Thirteen ODQ were returned, giving a response rate of 76%. All subjects indicated that they were primarily motivated by a ‘desire to give and help’ the recipient couple. Most subjects did not find the donation decision difficult but some found the post-donation psychological adjustments challenging. Subjects also indicated that mandatory counselling on the psychological implications of oocyte donation was an important component of cycle preparation. The majority of subjects had disclosed the donation to others and felt that disclosure to the presumptive child was essential.
CONCLUSIONS: The findings provide clinical materials for conceptualizing the dynamics entailed by known altruistic oocyte donation, with regards to motivation, relationship implications, donor satisfaction and plans for disclosure. The data support the provision of psycho-social support services to help donors dealing with any residual emotional difficulties regardless of the outcome of oocyte donation.
Key words: oocyte donation/third-party conception/altruism/infertilty/IVF
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Introduction |
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Oocyte donation is a form of third-party conception that enables women without healthy oocytes to achieve pregnancy when it would otherwise be difficult or impossible. The first successful live birth using donated oocytes was reported in Australia in 1984 (Lutjen et al., 1984
). Since then, the number of oocyte donation cycles has grown drastically, especially in those countries where paid gamete donation is legally permitted. In 2001, 19 of 22 Canadian assisted reproductive technology (ART) centres reported performing a total of 301 in-vitro fertilization (IVF) cycles using donor oocytes (Gunby and Daya, 2005). In 2004, the donor oocyte cycles increased to 368, which represents 
5% of the total number of IVF cycles performed that year (Canadian Fertility and Andrology Society, 2005).
In March of 2004, the Canadian parliament passed the Assisted Human Reproduction Act (AHR Act) to regulate the rapidly advancing field of ART and for the purpose of protecting and promoting human health and safety while balancing social, ethical and legal dilemmas (House of Commons of Canada, 2004). Under this new legislation, remuneration through monetary payments or benefits in kind to gamete donors is prohibited, except for a reasonable reimbursement of receiptable expenditures incurred during the course of gamete donation. The government has taken the position that payment may generate a perception of commercialization, human reproductive materials are merchandise to be brought and sold in the market and children would then be like commodities produced at the end of the commercial transaction. This legislation is consistent with human tissue, blood and organ donation, with the underlying principle that payment for reproductive materials violates the intrinsic value of human dignity, and creates the possibility of undue inducement, coercion and exploitation. One possible scenario is that women from economically disadvantaged backgrounds may agree to provide oocytes because of the financial need and economic hardship. In doing so, they may conceal medical information relevant to their health, thus discounting the physical and emotional risks of oocyte donation for financial reasons (Royal Commission on New Reproductive Technologies, 1993; Health Canada, 2004, 2005).
The preference of the paid donation model over the altruistic donation model has generated intense international debate on their ethical and practical issues. The permission of gamete compensation varies from one country to another, depending on its legislative framework governing ART and third-party conception (Blyth and Landau, 2004). Paid donation is market-driven based on supply-and-demand and market negotiation principles (Gorrill et al., 2001). Some clinics favour the paid donation model because financial incentives increase the number of oocyte donors, and would indirectly allow more infertile women to have children. Nevertheless, whether donors are compensated or not, the demand for donor gametes is still far beyond the available supply to meet the need for third-party conception. The removal of compensation has drastically reduced the number of available donors and there has been a pragmatic shortage of donor gametes, since the Canadian government passed the AHR Act. Infertile couples in need of donor oocytes now have to search for their own donors rather than relying on clinics or agencies to do the recruitment (Health Canada, 2004). The prohibition of paid gamete donation has created a new phenomenon called ‘reproductive tourism’ (Heng, 2007)—some Canadians are exercising their reproductive choice by travelling abroad to seek donor oocytes in other countries such as the United States, where ART treatments are available, commercial gamete donation is legally permitted, donor anonymity is guaranteed and mandatory reporting of personal health information after a successful conception is not required.
Third-party conception would not be possible without a gamete supply from oocyte and semen donors. Although altruistic donation is in general, a more morally and ethically acceptable form of donation than paid donation, donor recruitment continues to be a major challenge under this new gamete donation culture in Canada. Since it is rather rare, although not totally impossible, to find women who would be willing to donate oocytes to unknown parties without receiving compensation, clinics are now relying on patients to find their own altruistic donors. Usually, altruistic oocyte donors are women who are either known to, have a relationship with, or are biologically related to the recipients, who may be friends, sisters, cousins or relatives. Traditionally, intra-familial donation is the most common form of oocyte donation because of similar physical characteristics and genetic profiles between the recipient and the donor (Fielding et al., 1998; Baetens et al., 2000; Winter and Daniluk, 2004). Sisters, cousins and relatives who are within the reproductive age range, and have a good relationship with the recipient, seem to be the logical oocyte donor candidates. Recruiting close friends to be oocyte donors is also increasingly popular when an intra-familial donation is not feasible, or when the couples are uncomfortable with using gametes donated by family members, which could result in the potential confusion of family roles and unforeseeable complications in future family relationships.
Altruistic oocyte donation is a relatively new practice in Canada under this legislative framework (Health Canada, 2004). Today, a substantial volume of literature is found on semen donation and the perspective of semen donors, but relatively fewer studies have been done on oocyte donation, and much less is known about the implications of donating oocytes to known parties. Presently, most of the oocyte donation research has been conducted in the United States and in other European countries such as the UK. Canadian research on oocyte donation, however, is close to non-existent. Among studies found in oocyte donation, most have used anonymous donors as their sampling population (Rosenberg and Epstein, 1995; Soderstrom-Anttila, 1995; Kan et al., 1998; Partrick et al., 2001; Klock et al., 2003), of which only a handful of altruistic or known donors were included in their samples (Saunders and Garner, 1996; Fielding et al., 1998; Kalfoglou and Gittelsohn, 2000). Additionally, most post-donation research has focused on the recipients (Greenfeld et al., 1998; Baetens et al., 2000; Hahn and Craft-Rosenberg, 2002; Greenfeld and Klock, 2004; Hershberger, 2004), and the psycho-social development of those children conceived through oocyte donation, in the context of disclosure, attachment and parent–child relationships (Golombok et al., 2006; Murray et al., 2006). There is clearly inadequate empirical information available to understand the complex personal ramifications of altruistic oocyte donation on donors themselves and the subsequent emotional and psychological adjustments post-donation. Extrapolation of empirical data to the Canadian setting also remains problematic due to the distinct socio-cultural context, possible cultural differences and societal attitudes attributed towards gamete donation, and more importantly, the differences in the regulatory framework of gamete donation between these countries and Canada. The implementation of the altruistic donation model in Canada without supporting empirical documentation to guide clinical practice is disconcerting.
The objective of this study is to explore the experiences of women who donated oocytes to known parties for altruistic reasons. Findings from this study would generate clinical knowledge towards understanding their donation experiences, the motivating factors involved in their altruism, their views on relationship implications and finally, their plans on disclosing their donation to others and to the presumptive child.
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Materials and Methods |
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Subjects
Information was gathered retrospectively using a self-administered questionnaire called the egg donation questionnaire (ODQ) (see Supplementary data).
Subjects were women who had donated oocytes to known parties without financial compensation from January 2000 to December 2005, in a hospital-based fertility centre located in Toronto, Ontario. Ethics approval was obtained through the hospital's ethics review board. All prospective subjects were contacted by telephone to invite them for research participation. A research package, which included a one-page research description, the ODQ and a return envelope, was mailed to those subjects who agreed to participate. A follow-up phone call was made 4 weeks after the mailing. Participation was anonymous and no identifying information was sought by the questionnaire.
Measures
The questions included in the ODQ were derived from related literature, clinical experience and patient feedback. The initial ODQ was assessed by two infertility patients and several independent professionals, including a social science researcher and two infertility counsellors, for content validity. Further revision was made in response to their feedback. The final ODQ consisted of 56 questions grouped under five sections. Many questions were open-ended to allow subjects to write descriptive responses to capture their personal experiences in their own words.
Statistics
Quantitative data were tabulated. For questions involving rating scales, their mean values and standard deviations were determined. Qualitative data were compiled and quoted.
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Results |
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Twenty-eight subjects were identified as altruistic oocyte donors from chart review. Among them, there were 11 sisters, three cousins, one sister-in-law and 13 close friends. Of these, 20 could be contacted by telephone and eight had moved and lost contact. Seventeen agreed to receive the ODQ mailing and of the three that declined participation, two expressed no interest whereas the third subject did not wish to revisit her unsuccessful donation experience. Thirteen surveys were returned for a response rate of 76%.
Demographics
The demographic characteristics and outcomes of the donation cycles are summarized in Table 1. The donors were mostly in their 30s, with the mean age of 33, and ranged from 22 to 40 years. Among the 13 respondents, eight donated to friends, three donated to sisters and two donated to cousins. All of them except one were first time donors. All respondents were heterosexual, and 11 were partnered or married. All respondents had completed secondary or post-secondary education and seven (54%) had undergraduate or post-graduate degrees. Twelve patients were employed outside of home. More than three-quarters of the respondents had religious affiliations that were ‘quite important’ or ‘somewhat important’ to them.
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Eight respondents (62%) indicated that they did not plan to get pregnant in the near future and five (38%) said they had already completed their family and had no plan to have more children themselves. Nevertheless, none of them had worries about their own fertility. Nine donors self-identified themselves as White, Caucasian or Canadian, and the others were Black, Chinese, Italian and Portuguese. Five donation cycles (38%) resulted in either a live birth or ongoing pregnancy, and one donation resulted in an early spontaneous loss. All successful pregnancies were the result of friend-to-friend donations.
Decision-making and motivation
Subjects were asked to identify contributing factors of their donation (Table 2), and to categorize the level of significance of various determinants in motivating their decision (Table 3).
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The ‘desire to give and help’ was cited by all subjects as the main reason for their altruistic act. One donor wrote, ‘I also offered to help my other sister two years prior to this but did not end up donating—her choice’. Most of them were extremely aware of the recipients' infertility issues and had personal knowledge of how the recipients were affected by previous failed infertility treatment.
For the 11 subjects partnered or married, the most important individual involved in their decision-making was their partner rather than other family or societal members, such as parents, siblings, friends and health care providers. In every situation, the husband or partner was noted to be supportive, although his actual involvement in the donation cycle varied.
The majority of subjects did not find the decision-making process difficult even though several had little knowledge of the donation procedures involved. Only two subjects found the decision-making to be ‘very difficult’, and as one noted, ‘it is a difficult decision to make to be an oocyte donor because you simply do not know how you will be affected after (or if) a child is born—I found that to be the hardest part of my decision’.
Several subjects commented on a desire to speak to former donors before making their decision. They wanted to ‘have a list of people who have gone through the procedure and who have agreed to talk to new participants’, and have ‘someone whom I can talk to other than the staff’. Donors also expressed the wish to receive more educational materials to improve their understanding of the process. They wrote, ‘offer to have information sessions with other donors and recipients to answer questions’; ‘it would be helpful if the oocyte donor was aware what will happen or what kind of procedure she will have to go through right from the beginning’ and ‘written information, pamphlet, more information is better’.
Oocyte donation experience
Subjects' ranking of the level of physical and emotional difficulties encountered during the donor cycle is noted in Table 4. Time-consuming aspects of the donor cycle, such as the ‘frequency of clinic visits’ and ‘time involvement and inconvenience’, were noted to be as difficult as the oocyte retrieval, which is an invasive procedure. One subject wrote, ‘it takes a lot of time from work to go see the doctor, counselling, etc.’.
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Table 5 summarizes the subjects' perceptions of the most rewarding aspects of oocyte donation. All subjects cited ‘being able to offer help’ as the most rewarding aspect. Twelve of the 13 donors stated that their desire to help increased or remained the same through the donation process. Understandably, disappointment was mostly associated with failed outcomes when the donors did not respond well to the cycle stimulation and when the donation did not result in a successful conception.
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Several qualitative comments were made about the donation experience. One donor wrote, ‘I have no regret of my donation experience even if it was not successful.’ Others noted, ‘in a funny way, it was a wonderful experience even though it was straining your energy and resources’; ‘at least we gave the best try’ and ‘overall, this was an amazing experience and I would do it again’. However, some of them had negative emotional reactions due to the poor response: ‘I was very fragile emotionally at that time. It was a very emotional experience after all’ and ‘I was surprised of the poor outcome and perhaps I wasn't well prepared for possible failed cycle. It was hard both emotionally and physically’.
Experience of service delivery
The majority of respondents were satisfied with the care provided. Comments from donors included, ‘very attentive to both the physical and emotional aspect of the process’; ‘they explained things very clearly, helped to reduce my anxiety’; ‘genuinely concerned with both myself and the recipient every step of the way’; ‘they made you feel the value of service you are rendering, explained all the process and made sure of my well-being: physical, emotional, psychological’; ‘well informed about the entire procedure’ and ‘all questions were answered, very accommodating to our situation’.
Negative experiences were also expressed in comments such as ‘in the very beginning, I found the care extremely good. I felt respected and appreciated as a donor. At the end of the process, my health concerns and pain was dismissed’. Geographical distance and time involvement were found to be problematic for two subjects. These donors made some suggestions on the service delivery model: ‘travel was the hardest part. To be able to access the tests at a hospital closer and reports sent to the clinic would have made a huge difference’ and ‘the initial screening was difficult as I was in Vancouver and I think some of it could have been done locally and saved me lot of time. It was hard on my family when I had to go away’.
Counselling
Subjects overwhelmingly indicated that mandatory psychological counselling was an important part of cycle preparation, and was quite helpful to them in making the disclosure decision. One donor wrote, ‘this session is definitely, in my opinion, a must prior to the oocyte donation process. It helped to deal with present thoughts but also future (anticipated) thoughts and feelings’. Donors were also able to recall the discussion of the disclosure issue with the counsellor. Some donors stated that they had already made the decision with regards to disclosure before seeing the counsellor and therefore the counselling session was not necessarily helpful. Written responses from these donors were ‘it reinforced my feelings but my decision was already made’, ‘the counselling session wasn't really relevant to me’ because ‘I'm friends with the recipient couple and we decided on non-disclosure’. For donors who had not thought about the disclosure issue, they found the counselling very informative and said ‘disclosure was not a topic that I thought much about prior to the counselling session. The counsellor provided very helpful information’.
Some donors found the counselling was helpful in reviewing the implications of donation that they had or had not thought about. Comments included ‘it was like having an interview with questions that do make you think twice before giving out the answer. However, we're positive and know what we are doing so the session went very well’; ‘the counsellor asked me questions that I never thought about before. I think it is very helpful to discuss the issues before the donation’; ‘it was validating and it helped me and the recipient couple explore some questions we hadn't thought of yet. Example—what happens if recipient couple died—do I expect to get the child?’. For those donors who had already thought about the implications of donation prior to the counselling, they wrote, ‘we made the decision already before seeing the counsellor, but the counselling session was good in the sense of reconfirming our belief’ and ‘it was sort of a rehearsal of a decision process I went through. I made up my mind to help regardless of counselling’.
Donors also spoke about their devastated feelings when the cycle failed and said ‘cycle failed, continue to see they are suffering and I cannot offer more help’; ‘I felt very depressed after knowing the cycle didn't work’. They strongly endorsed the need for providing post-donation counselling by a mental health professional as part of the routine procedures in both successful and failed donations, and they said, ‘a follow-up session with a psychologist might be beneficial when the procedure is complete. As the donation procedure progresses and feelings change, the need for this might be greater at the end’. Besides, ‘feelings can creep up few months later when everything is finished’. A successful outcome is not without challenges and some donors found that they had a difficult time setting appropriate boundaries. One donor wrote, ‘the hardest part of the experience for me was dealing with my feelings after the baby was born, post-counselling sessions would be a valuable service’.
Disclosure to others
Overall, 10 (77%) women had told someone other than their partners/spouses, whereas the remaining three (23%) women took a secretive approach of not informing anyone of their donor involvement. One donor mentioned that disclosure was necessary ‘to get (the) necessary time off work’. For those who chose to disclose, no negative reactions from friends or family were reported and their reactions were all positive and supportive. Table 6 summarizes the reported reasons for telling someone of the oocyte donation. More than half of the donors cited ‘personal need to share with others for emotional support’ as the main reason of self-disclosure.
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Implications on relationship
Six (46%) donors noted that there had been ‘positive changes’ in the relationship with the recipients whereas six (46%) donors found the relationship ‘stayed the same’. Only one subject was ‘not sure’. This subject was also the only donor who noted a change in her partner relationship. She wrote, ‘for me, it is kind of putting my current relationship in a rut’, continuing, ‘from all the injections I had to give myself, it caused me to lose my libido/sex drive, and resulted in never ending fights with my current partner’. The remaining 12 subjects noted that there had been no change in their relationship with their partner.
The donors who donated oocytes to friends were asked about the challenges of maintaining an ongoing relationship in the context of failed outcomes. One donor wrote, ‘it was a very emotional experience, I would not do it if not because of my friend, and I cannot imagine what the infertile couples have to go through in order to have their own children’. Another donor wrote, ‘I have three girls. The recipient couple treats them like queens. Sometimes I feel a bit guilty that my assistance did not result in conception. It would have been wonderful’.
It is not surprising to know that failed cycles had a significant psychological impact on the donors whose donation failed to help their sisters to conceive. Donors wrote, ‘we are sisters so we are close anyway—no matter what’; ‘it took me and my sister several months to recover emotionally and to move on’; ‘we do not really discuss the issue as the end results were negative, however, the challenge remains not to get involved in future decisions and discussions as I now feel involved in the subject matter’. Further comments included, ‘the recipient has rheumatoid arthritis quite badly and it hurts me to know that her infertility is caused by the RA. I want to help her and I know she would make a wonderful parent’; ‘I wish my sister can get pregnant and we will have a lot more to share. I hardly complain to her of my children and I feel guilty to do so. I have two beautiful children and why do I complain, she has none’.
Participants whose donations resulted in pregnancies and live births were asked about the challenges of maintaining an ongoing relationship with the recipients. One woman who donated to a close friend stated, ‘the recipient couple lives far from me so it's hard to make frequent visits’. Another donor whose recipient was still pregnant at the time of the survey, stated that she ‘does not know yet’ about the upcoming challenges and that their relationship will, ‘most likely be the same’. Subjects whose donations resulted in successful pregnancies were also asked about the feelings towards the resulted child. Three out of five donors stated that they ‘sometimes’ thought about the conceived child. One donor stated rarely, and one indicated that ‘all the time’. One respondent wrote, ‘there are none, the child is 100% theirs and that is how everyone feels’. However, another donor wrote, ‘it has been difficult seeing the child’, ‘it has been very difficult after the fact. I find it very upsetting to be around the child. I always feel sad after I see the child’.
Plan of disclosure to the presumptive child
Women were asked if they had told someone or their own children about their donation (Table 7). Most subjects had told someone but none had told their own children about the donation. Among the 10 donors who had children of their own, four were undecided and four had planned not to tell. The two donors who had decided to tell were a cousin (unsuccessful outcome) and a friend (successful outcome). One of these donors said her children were too young to understand and she intended to tell them when they were older. Only two donors, who had decided not to tell the presumptive child about the conception, had not told anyone.
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The donors were asked about their plans of disclosure to the presumptive child (Table 7). When asked if it was difficult to reach a mutually agreeable decision regarding disclosure with the recipient couple, three (23%) noted ‘somewhat difficult’ and only one noted ‘very difficult’. Only one subject stated that a known discrepancy between the recipient's and her views on disclosure would have changed her decision to donate. Overall, there were some inconsistencies in their disclosure plan to others, their own children and the presumptive child. This is quite a concern as some of them had already engaged in selective disclosure with adults other than their own spouse, even though they were indecisive of the overall disclosure plan.
Disclosing the nature of conception was analysed from two perspectives: the children's right to know their genetic origin versus the parents' right to tell. Their responses were listed in Table 8. On one hand, the donors believed that it was in the best interest of the child to disclose and they did not believe the parent–child relationship would be damaged if the child found out the truth nature of conception. On the other hand, they also believed the child's parents had the right to decide, although they also thought they should be honest with regards to the genetic origin. This seems to suggest that the donors were very respectful of the recipients' disclosure decision, although they might have their personal opinions of the child's right to know and the benefit of knowing the nature of conception. They recognized that the decision to tell was at the discretion of the child's parents, but not themselves.
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Discussion |
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TopAbstractIntroductionMaterials and MethodsResultsDiscussionConclusionSupplementary DataReferences |
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Demographics
An acceptable response rate of 76% was achieved despite the length of the ODQ and the potential sensitivity of the issues explored. The anonymous nature of the questionnaire minimizes the possibility of providing socially desirable responses. The rich qualitative data suggest that the respondents had an interest in making their personal experience known through providing written responses to the open-ended questions. The donor profile was similar to the demographics reported by previous investigators (Fielding et al., 1998
; Baetens et al., 2000; Winter and Daniluk, 2004), in which the donors are well-educated, partnered or married, employed, have their own children and are of middle class socioeconomic status. The average age of the donors in this study is slightly higher than anonymous donors reported by other studies (Shulman, et al., 1999; Kalfoglou and Geller, 2000; Kalfoglou and Gittelsohn, 2000; Klock et al., 2003), which is likely due to the limited choice of available altruistic donors within their social network.
Interestingly, 11 donors reported to have religious affiliations including Buddhism, Catholicism and Christianity, and they considered religion as either ‘quite important’ or ‘somewhat important’ to them. Religious doctrines tend to have conventional views on family formation and the meaning of parenthood. But these women chose to donate oocytes, and perhaps even to tell others of their donor involvement, despite the fact that some fundamental religious groups have oppositional views on third-party conception (Purewal and van den Akker, 2006). Our findings do not suggest any association between religious beliefs and the donation decision for these subjects.
Recruitment of known oocyte donors
Reports from oocyte donation studies found that the reasons for recipient couples to choose known donation over anonymous donation are mainly because of trust in the personality of the donor, fear of passing undesirable traits of the donor which may be transmitted genetically, fear associated with anonymity and not knowing who that donor is and what she is like, and the availability of the donor's genetic history, medical information and social background which could be critical to the resulted child's long-term health and development (Greenfeld et al., 1998; Baetens et al., 2000; Greenfeld and Klock, 2004; Winter and Daniluk, 2004). In this study, it is important to note that all the intra-familial donations were self-initiated by the donors to help the recipients who were either their sister or cousin, whereas friends were mostly approached and asked by the recipients of oocyte donation. Over three-quarters of the donors indicated that one of the most influential reasons for donating oocytes was their personal knowledge of how the recipient couples were being affected by failed treatment cycles. This suggests that their altruistic desire to help is based on their feelings of compassion and empathy towards the infertile couples, and their wish to do something to alleviate their pain of involuntarily childlessness.
It was not clear when and how the recipient couples shared the infertility problem and failed cycles with their donor, and whether such information was disclosed in seeking emotional support during their infertility journey, or if it was shared intentionally for the purpose of donor recruitment. Regardless of how the donors were recruited, the use of known oocyte donation does not allow the recipient couples to keep a secret of their own infertility, nor keep private their wish to pursue oocyte donation. Therefore, the donor recruitment process may add undue pressure on the infertile couples if there is pre-existent stigma attached to third-party conception in their family and social environments. These couples may even face unfair judgment and unsympathetic reactions from others regarding their desire for pregnancy and childbearing at their mature age through donor oocytes. The indirect disclosure of their infertility could cause personal embarrassment and a sense of abnormality, which could further induce emotional injury from their incapacity to have children (Hershberger et al., 2007).
There are several things the fertility clinics can do to assist the recipient couples in recruiting potential donors. They can provide orientation or counselling services for potential donors who are curious about gamete donation but are not ready to make any donation commitment. Clinics can also prepare educational materials to provide information on the distress that infertility could cause, and that something can be done to help the infertile couples. Written materials describing the procedure and the possible psycho-social implications of oocyte donation would be helpful in providing the potential donors with some preliminary information on the programme requirements, rather than relying on the recipient couples to explain the procedure to the potential donors.
Altruistic donation
Oocyte donation entails greater personal costs and medical risks for women than semen donation does for men. It exposes the donors to possible physical risks, and emotional and psychological burdens they would otherwise not face. Intra-familial donation presents the possibility of coercing or manipulating disadvantaged family members to participate because of a differentiated power structure and undue family pressures (Saunders and Garner, 1996; Ahuja et al., 1997; Marshall, 1998). This study found no evidence that any of the donors felt pressured or obligated to donate oocytes. Instead, our findings suggest that the likelihood of a woman becoming an altruistic donor is influenced by her personal relationship and emotional bond with the recipient couple, her motherhood status, her own experiences with parenting and the wish to help the recipient couple in a concrete way to alleviate their pain of infertility. This is consistent with findings from other studies (Baetens et al., 2000; Kalfoglou and Gittelsohn, 2000; Winter and Daniluk, 2004), which indicated that altruistic donors were willing to go through the invasive oocyte donation procedure only for a known recipient with whom they have a relationship with, or are biologically related to them, and none were willing to donate oocytes to other unknown parties who had no emotional ties with them.
Findings from anonymous oocyte donation studies have clearly indicated that the majority of these donors were motivated primarily by the financial incentive, although some had found the donation experience quite rewarding and had acquired a more altruistic desire to help at the end of the cycle (Rosenberg and Epstein, 1995; Kalfoglou and Geller, 2000; Kalfoglou and Gittelsohn, 2000; Klock et al., 2003). However, this does not appear to be the case for the altruistic donors in this study, and the initial motivating factors for them are clearly different. Our findings showed that none of the subjects regretted their decision to donate oocytes and most felt positive about their donation regardless of the cycle outcomes. More than half of the donors stated that their altruistic desire remained the same at the end of the cycle. This is significant considering the personal inconvenience, time investment, emotional costs and possible medical risks they endured, for no financial reward. It is speculated that these donors must have possessed a very strong sense of altruism to help the recipients, so as to turn this altruistic desire into an altruistic act by agreeing to go through the physically invasive procedure of donating oocytes. The findings seem to suggest that the act of donation may be intrinsically rewarding for these women, who felt reaffirmed as the result of their acts of feminine solidarity, kindness and generosity.
With regard to the decision to donate again, studies on anonymous paid donation suggested that the willingness to re-donate is related to the donor's satisfaction in prior cycles, although financial incentive is still the dominating factor in influencing such decision (Soderstrom-Anttila, 1995; Kalfoglou and Geller, 2000; Kalfoglou and Gittelsohn, 2000). Fielding et al. (1998) reported that 40% of anonymous donors did not want to donate again because of advancing age, the side effects of treatment, service dissatisfaction, practical difficulties and poor medical care. In this study, only three donors (23%) indicated that they were willing to donate again to the same recipient couples, whereas five said definitely ‘no’ and five were ‘unsure’ if they would consider re-donation due to various reasons, such as side effects of the medication, age and the previous donation outcome. Most donors did not feel obligated to donate again despite the distress the recipient couples faced following unsuccessful donation cycles. Not surprisingly, none of them would consider donating oocytes to unknown parties, even if they were more knowledgeable and experienced after the initial cycle. The findings suggest that altruism serves only as a driving force for the donors to initiate the first donation cycle, but the likelihood of donating again is most likely based on multiple factors other than a purely altruistic desire to help the known recipient couple. This shows that the altruistic donors will engage in self-appraisal of evaluating the worthiness of their altruistic act and the intrinsic rewards as a result of their donation.
The word ‘donation’ implies an altruistic act based on free will and it precludes payment and coercion in its definition (Shenfield, 1998). Altruism usually means helping someone without expecting renumeration at the end, although it may entail other immaterial personal gains on the unconscious level for the donor, such as advancing the psychological well-being, feeling good and valuable and having a sense of satisfaction and fulfilment (Purewal and can den Akker, 2006). Although a donor can exhibit altruistic behaviour of donating oocytes, pure altruistic moviation is almost impossible in the absence of empathy and concerns for the welfare of the recipient within a relationship context. Paid donation involves renumeration when there is no emotional and relationship ties involved, whereas altruistic donation involves immateral gains that are not quantifiable in financial terms. In social exchange theory, both financial compensation and immaterial personal gains have philosophically similar rewards for the donors, pending on the abstract meanings and values attached to the donation. Thus, the dichotomy between altruistic donation and paid donation might oversimplify the motivation and incentive behind the donation act. Moreover, the definition of, and the socially constructed meanings ascribed to, altruistic donation is also likely to vary across different social and cultural contexts.
Donor satisfaction
Oocyte donation is a very physically invasive procedure. Being well cared for and being treated with respect were commonly cited by respondents in this study as important components of the medical care. It is not surprising that donors who were quite satisfied with the service felt that their physical concerns were taken seriously and promptly, and emotional needs were handled sensitively. The donors' satisfaction is dependent on multiple factors, including the time involvement, level of personal inconvenience, actual donation experience, quality of medical care, availability of support services and follow-up care (Klock et al., 1998; Kalfoglou and Gittelsohn, 2000; Klock et al., 2003). Our findings have practical relevance for strategies on improving donor satisfaction. In this study, less than half of the donors said they had a good understanding of the IVF procedure when they first agreed to donate. Some of them were quite unprepared for the intense physical and emotional experiences during and after the cycle, especially in cases where the donation failed. These women emphasized the importance of providing ongoing psycho-social support services throughout the procedure to deal with the emotional experience accompanying gamete donation. Similar to findings reported by Partrick et al. (2001), the respondents felt it would be valuable to speak to former donors who had gone through the experience in order to obtain a more thorough understanding of the donation procedure. Such connections between former and potential donors should not be difficult to arrange for most infertility clinics.
One main factor that influences the donor satisfaction is the time involvement during the donation process. Recipients may have a limited choice of donors when it comes to altruistic donation. The presumed fertile donors may volunteer to donate but not all of them will successfully pass the medical screening to proceed with donation. Some of them may change their minds after realizing the emotional ramifications and the long-term psycho-social implications pertaining to gamete donation. A study on oocyte donor recruitment by Gorrill et al. (2001) found that only 12% of potential donors who enquired about the possibility of donating oocytes eventually entered the active donor pool. Murray and Golombok (2000) reported that three-quarters of potential oocyte donors were lost after initial contact with the clinic. Another study by Marina et al. (1999) reported a 38.8% rate of oocyte donor selection from 554 candidates. It is possible that the logistics associated with oocyte donation are contributing factors to the high attrition rate, such as the time commitment, frequent clinic visits and travelling distance. Proximity to the clinic is certainly a concern for some potential donors if they live far away from the fertility clinic. In this study, the time commitment involved in the actual donor cycle was a significant concern for the majority of subjects. Clinics can be more innovative in overcoming the pragmatic issues of accommodating potential donors, such as minimizing trips to the clinics to reduce travelling time, planning around the donors' schedules to make the donation procedure easier for them and arranging satellite clinics to do cycle preparation and provide follow-up care (Kalfoglou and Geller, 2000). By addressing pragmatic issues of accommodating potential donors, there might be an improvement in donor satisfaction and a potential increase in the number of women willing to donate altruistically.
Counselling
Known ooctye donation is often regarded as a joint project by two women to conceive a child at the end of the procedure. Although the IVF cycle is shared between the donor and the recipient, each of them may experience the impact of a failed treatment differently. The recipients have already experienced prior cycle failures before moving to oocyte donation. On the other hand, the donors have no infertility history and have no prior experience of IVF. As a result, the donors may be more optimistic of the success rate and may face greater disappointment after a failed IVF cycle.
Under the AHR Act, counselling prior to the donation cycle is mandatory as part of the informed consent, to ensure the donors are fully aware of the possible psychological aspects and implications (Health Canada, 2007). Although the majority of donors in this study reported the counselling session to be beneficial, the findings support the importance of providing psychological support services not only as donor preparation, but also at each stage of the donation process. Current counselling practices on third-party reproduction is dominated by pre-donation implicational counselling, which targets informed consent by walking the oocyte donor through possible future scenarios arising out of the donation procedure, and making sure all pertinent clinical domains are discussed, and that all emotional and relationship ramifications are considered (Applegarth and Kingsberg, 1999; Boivin et al., 2001). During this time, the donors are usually very motivated but they may not have fully conceptualized and understood the implications of their donation decision. However, ongoing and follow-up counselling services are not routinely offered by clinics. In this study, several donors felt they were unprepared for the failed outcome, and they felt they were left alone to deal with the feelings and to make sense of their experience. The findings suggest that post-donation counselling is equally important in helping donors to cope with possible personal and familial issues, which arise as a result of the oocyte donation.
Boundary negotiation
Soon after successful conception, the donors need to draw appropriate boundaries by renegotiating the role she plays in the recipient's family and in the child's life. Known oocyte donation is not without challenges and potential complexities because of the existing relationship and/or ongoing families ties between the donor and the recipient. Sometimes, complications could arise along role boundaries if they are blurred and not clearly defined. The plan of disclosing information could be problematic if the donor and the recipient couple have different views and different personal styles of information sharing. In cases of successful intra-familial donations, the genetic relationship and the socially defined role of the donor in relation to the resulted child could also create additional challenges (Saunders and Garner, 1996; Fielding et al., 1998; Winter and Daniluk, 2004). In this study, one donor had a difficult time when seeing the resulted child and had ambivalent feelings towards her decision of oocyte donation. It is not surprising that the donor may have special feelings and perhaps even maternal bonding with the conceived child because of the genetic lineage. In cases with successful donations, there is a unique challenge for known donors in redefining personal boundaries, and not bearing the feelings of maternal attachment and responsibility towards the resulted child.
Disclosure decisions
Often, oocyte donation is seen to be less of a threat to the femininity of infertile women because of the assumption that gestational parentage and prenatal bonding could compensate the lack of genetic lineage (Greenfeld et al., 1998; Baetens et al., 2000; Englert et al., 2004). Previous reports on oocyte recipients suggest that women are more open than men about gamete donation, and they are more likely to disclose the use of oocyte donation to others and the resulted child if they use known donors (Kirkland et al., 1992; Greenfeld et al., 1998). In contrast, studies by Fielding et al. (1998) and Baetens et al. (2000) showed that couples who opted for known donation tended to be more reticent towards the social environment and more inclined towards secrecy. This might reflect the discomfort of recipient couples in not knowing what the implications of disclosure would be when they have continuous contact with the known donors. Moreover, disclosing to others their oocyte donation could be a challenging decision when the donors are also well connected with the recipients' family or social network. Difficulties could arise if the recipient and the donor have different perceptions of information disclosure, such as who, when, how and what should be shared and told.
Disclosure may also be influenced by the attitudes of the clinics and the mental health counsellors with whom the donors have consulted, and the extent of self-perceived acceptance on the use of gamete donation within the cultural and social contexts. Additionally, feelings and relationships may change in the future and donors may have different personal reflections on the disclosure plan after the child is born (Greenfeld and Klock, 2004). In recognizing that donors and recipient couples may have different values and beliefs in disclosure decisions, the mental health counsellors have a unique role to play in facilitating the donors' decision-making by providing information and guidance. Undoubtedly, openness towards the child can have unintended consequences which may affect the dynamics in both the donor's and the child's family. Conversely, secrecy places limits on communication, adds pressure to those who are keeping the secrets and causes stress within the family system (Frith, 2001; Daniels, 2002). For donors who have children, disclosure may be necessary because the resulted child is also half-genetically related to their own children. It is interesting to note in this study that the majority of the donors were in favour of disclosure and they had told others of their oocyte donation, but all of them had yet to tell their own children of their donor involvement.
For an anonymous donation, disclosing the truth about his/her conception puts the child in the position of never knowing the donor and the genetic identity. This is certainly not the case for a known oocyte donation. The use of a known donor would respect the child's right to know his/her genetic origin, and would allow them to communicate with the donor and have full access to her personal health information and genetic history. Nevertheless, having access to this information is useful only if the child is told about the use of oocyte donation, which means the provision of genetic information is at the discretion of the parents. Inconsistency of information given could cause discordance in relationships, and confusion of roles and identities within the family. Consequently, it is crucial for both the donors and the recipients to have a shared plan of disclosure to avoid the risk of accidental disclosure, especially if there is an ongoing relationship and continued contact between the donor and the recipient's family.
Methodological considerations
Altruistic oocyte donation is a relatively new practice in Canada under the new AHR act. However, its implementation is not without pragmatic and clinical challenges. This study has several limitations and the results should be interpreted with caution. All the research participants were from a single IVF facility. Those who had difficulties in the donation experience may choose not to participate; therefore, it was not possible to compare the differences between respondents and non-respondents in their oocyte donation experience. Retrospective reporting of the oocyte donation experience is also subject to recall bias. Additionally, the sample size of our study is rather small to be representative and replication of the study to obtain a larger sample size would provide greater confidence in data representation. Lastly, the ODQ was constructed specifically for this study and the use of a non-standardized questionnaire limits the validity of the data. The quantitative nature of this study did not allow the provision of contextual data to capture the personal meanings and social realities confronting their altruistic ooctye donation decision, nor the influences of social and cultural factors in their choices of disclosure.
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Recruiting oocyte donors has been a major challenge under this new culture of altruistic gamete donation in Canada. Legislation alone is unlikely to achieve societal attitudinal changes without complementary measures to raise the public awareness of the need for, and the value of, gamete donation. Central to the delivery of an effective clinical service is an understanding of the clients' experience. Currently, there is a dearth of evidence-based clinical knowledge to guide the development of an altruistic oocyte donation programme, and there is very little research exists that could enhance understanding in this area. Data generated from this study provide preliminary clinical materials for conceptualizing the dynamics entailed by known oocyte donation with regards to motivation, relationship implications, donor satisfaction and plans for disclosure. To further enhance our understanding of altruistic oocyte donation, the next phase is to conduct semi-structural interviews on known donors to elucidate more in-depth personal accounts of their altruistic acts of donating oocytes, as well as the subsequent challenges faced by these women in negotiating relationship boundaries with the recipient couples post-donation.
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Supplementary data are available at http://humrep.oxfordjournals.org/
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Submitted on February 13, 2007; resubmitted on March 18, 2007; accepted on March 29, 2007.
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