- Email: [email protected]
Attitudes of couples with stored frozen embryos toward conditional embryo donation
Attitudes of couples with stored frozen embryos toward conditional embryo donation Catherine A. McMahon, Ph.D.,a and Douglas M. Saunders, M.D.b a
Psychology Department, Macquarie University, North Ryde, New South Wales; and b IVFAustralia, Sydney, Australia
Objective: To survey clients with stored frozen embryos regarding intention to donate embryos to other couples and attitudes toward conditional donation. Design: Anonymous postal questionnaire. Setting: A private IVF clinic in Sydney, Australia. Patient(s): Clients with embryos stored for 3 or more years. Intervention(s): Patients completed a survey regarding attitudes to embryo donation and conditional embryo donation. Spontaneous written comments were also analyzed. Main Outcome Measure(s): Intentions regarding embryos, attitudes toward conditional donation, extent to which conditional donation would influence decision-making. Result(s): Of the clients surveyed, 99 women (35%) and 66 men (23%) responded. Only 4% indicated it was likely they would donate to other couples; 48% thought donors should be able to specify characteristics of recipients; and 41% indicated they would be more likely to donate if donation was conditional. A sense of ownership and responsibility for the well-being of the offspring underpinned reluctance to donate. Perceived control over the caretaking environment was seen as an advantage of conditional donation. Concerns were also raised about the need for donors to relinquish control and the potential for discrimination. Conclusion(s): An empirical understanding of the views of infertility patients regarding stored embryos is critical to informing public discourse, policy debates, and clinical practice as well as counseling, policy, and protocols on embryo donation. (Fertil Steril 2009;91:140–7. 2009 by American Society for Reproductive Medicine.) Key Words: Embryo donation, conditional, infertile couples
Studies consistently show that in assisted reproduction technology (ART) practice the number of couples requiring donor gametes (sperm, eggs, or embryos) to conceive continues to greatly outweigh the number of donors (1), and that present donor recruitment and treatment services are less efficient than they should be (2). The success of recruiting altruistic donors is likely to be associated with the attitudes of the broader community as well as the specific culture and protocols of the reproductive technology unit (3, 4). An empirical understanding of the views of infertility patients regarding stored embryos is critical to informing public discourse, policy debates, and clinical practice (4, 5). Although recent research shows most couples indicate that they would prefer embryos to be used rather than destroyed (6, 7), in reality the majority opt to dispose of their embryos (1, 8, 9), relatively few report an inclination to donate to other infertile couples (6, 10), and even fewer actually donate (1, 6, 7).
now confirm that the subjective conceptualization of frozen embryos as potential children and siblings of their existing children (7) and a related concern about the lack of control over what happens to the embryos after donation contribute to ambivalence (4, 6, 8, 10–12) and distress regarding decision making (6, 8).
To plan effective counseling practices and donor recruitment services, it is important to understand the dynamics of decision-making for potential donors (5, 7). Several studies
Consent processes that give donors explicit control over the ways in which their donated embryos will and will not be used may facilitate the decision-making process (12, 13). To our knowledge, only one study to date has examined attitudes toward conditional versus unconditional embryo donation (13). In this Canadian sample, attitudes were polarized, with most of those inclined to donate holding views congruent with a model of embryo adoption rather than organ donation. Twenty-four percent of respondents indicated they would only participate in embryo donation if they were allowed to attach conditions to their donation, leading the investigators to conclude that protocols allowing conditional donation could increase the acceptability of embryo donation for a substantial subset of potential donors.
Received April 27, 2007; revised July 25, 2007; accepted August 1, 2007. Financially supported by Macquarie University and IVFAustralia. D.S. is Director of the Research and Development Committee of IVFAustralia and a shareholder in the company. Presented in part at the 25th Annual Scientific Meeting of the Fertility Society of Australia, Sydney, Australia, 23-25 October, 2006. Reprint requests: Catherine Anne McMahon, Ph.D., Psychology Department, Macquarie University, North Ryde, NSW, Australia, 2109 (FAX: 61-2-9850-8062; E-mail: [email protected]).
CONTEXT FOR THE CURRENT STUDY In Australia, the most recent available figures indicate that in 2003 there were 104,917 embryos in storage (14). Couples have four options with respect to their frozen embryos: to use them in subsequent treatment cycles, to dispose of them, to donate them for research, or to donate them to
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another infertile couple. A fifth option is to defer the decision and leave the embryos in storage. Regulatory guidelines and protocols for embryo storage and donation vary from state to state (1). In New South Wales, where the current study was conducted, couples have a maximum storage time of 5 years with an option to renew for a further 5 years. Victoria is the only Australian state that has legislation giving offspring that result from gamete donation the right to identifying as well as nonidentifying information at 18 years. In South Australia and Western Australia, there is a legislative right to nonidentifying information in mature offspring, and identifying information can be provided if all parties consent. There is currently no legislation in Tasmania, the Australian Capital Territory, or New South Wales, where the current research was conducted, although draft legislation is under discussion in New South Wales. In the absence of legislation, the New South Wales clinic involved in the current study follows guidelines from the National Health and Medical Research Council (NHMRC) (15) and the code of practice of the Reproductive Technology Accreditation Committee (RTAC), both of which recommend that clinics facilitate conception using donated gametes only if donors consent to being identified to donor offspring in the future. The most recent NHMRC ethical guidelines (15) have also noted the importance of respecting the donor’s wishes and approve unknown but directed donation of embryos in states and territories where such a practice is not illegal. Consequently, the current study surveyed clients with surplus embryos stored for 3 years or longer regarding [1] the likelihood that they would donate embryos to other infertile couples; [2] their attitudes toward conditional donation; [3] the recipient characteristics that potential donors thought it reasonable to specify, and [4] whether the capacity to specify recipient characteristics would influence their decision about embryo donation. MATERIALS AND METHODS The study was approved by the ethics review committees (human research) of IVFAustralia and Macquarie University, New South Wales. Selection of Participants The protocol at the clinic from which participants in the current study were recruited offered options of a 1-year or 3-year storage plan, after which patients with stored embryos received a letter regarding their intentions. At this point, they could elect continued storage (with a storage fee) for up to 10 years. Potential participants were identified as those who had embryos stored at one clinic in northern Sydney, New South Wales, Australia, for 3 or more years. Letters of invitation to participate in the study by completing a questionnaire were sent to 576 eligible individuals (283 couples). In an attempt to boost response rates, a second copy of the survey accompanied by a reminder letter was sent to all identified eligible participants after a month, irrespective of whether forms had been returned. Fertility and Sterility
Questionnaire The written questionnaire included questions about demographics, including education, ethnic background, religion (commitment to practice), and infertility treatment history (number of embryos stored, time embryos had been stored, whether couples had completed their families, likelihood of using embryos in subsequent treatment). Respondents were asked to indicate how likely it was that they would donate their surplus embryos to another infertile couple (three response options: very unlikely, possibly, or probably), with ample space provided for written comments. Subsequent questions explored whether donors should have the right to specify characteristics of recipients (three response options: yes, no, or unsure), with an invitation to add written comments. A list of attributes donors may wish to specify followed, and respondents were asked to indicate on a Likert scale how reasonable they thought each was ranging from 1 (not at all reasonable) to 6 (very reasonable). The final question asked whether the capacity to specify recipient characteristics would influence their decision to donate (three response options: ‘‘would not influence my decision at all,’’ ‘‘would make it somewhat more likely that I would donate,’’ or ‘‘would make it much more likely that I would donate’’). Once again, written comments were invited. Statistical Analyses All statistical analyses were performed using the Statistical Package for the Social Sciences (SPSS version 15; SPSS, Inc., Chicago, IL). P<.05 was considered statistically significant. After analyzing the quantitative questionnaire data, all written comments regarding [1] intentions to donate to other infertile individuals and [2] attitudes toward conditional donation were reviewed by the first author to identify major themes. These thematic data were then grouped according to subthemes. A second coder then reviewed the major themes and subthemes identified in the context of the range and variability of all written comments made. Overall, agreement between coders was high, and where there were differences in interpretation, the themes were revised to better reflect a consensus between the two coders. RESULTS There were 576 eligible individuals (283 couples). One hundred and sixty-five questionnaires (29%) were returned: 99 women (35%) and 66 men (23%). Although only patients whose records indicated embryos had been stored for 3 years or more were approached, a number of respondents indicated they had embryos that had been stored for less than 3 years. The most likely explanation for this discrepancy relates to clinic protocols if just one embryo is stored. In such cases, when couples resume treatment, they are advised to have a full stimulation cycle, whereby more embryos may be produced. Thus, some couples may have one embryo stored longer than 3 years and others stored for less time. These cases were excluded from data analysis, leaving a total of 133 respondents (78 women and 55 men). 141
Sixty-nine percent (n ¼ 91) of eligible respondents were born in Australia, 82% (n ¼ 109) were Caucasian, and 44% (n ¼ 58) were tertiary educated. Respondents had on average four stored embryos (standard deviation [SD] 3.03; range: 1–18), and the average time the embryos had been stored was 66 months (SD 36.10; range: 36–215). Respondents did not differ from nonrespondents with regard to number of stored embryos or time embryos had been stored. Comparative data were not available regarding number of children for nonrespondents. Although embryos had been stored for 3 or more years, just 56% (n ¼ 74) of respondents indicated that they viewed their family as complete. Nine percent of respondents (n ¼ 12) had no children. Twenty-two percent (n ¼ 29) indicated that it was probable they would use the embryos themselves in subsequent treatment. Sixty-three percent (n ¼ 84) reported low religious commitment (none to moderate), and 37% (n ¼ 49) reported strong religious commitment. Likelihood of Donating Embryos to Other Infertile Couples and Attitudes toward Conditional Donation Table 1 summarizes respondent intentions regarding embryo donation and views on conditional donation. Embryo intentions were first considered for the whole sample, and then with those who had indicated it was likely they would use the embryos in treatment excluded. As the table illustrates,
few were open to donation. There were 40 couples in whom both partners responded to the questionnaire. Of these, there were seven couples open to donation; three in whom both agreed donation was possible, and four in whom one indicated donation was possible and the other probable. Forty-eight percent agreed that couples should be able to specify donor characteristics. The extent to which a capacity to specify would influence the decision to donate was considered for the whole sample, for those who indicated that it was unlikely they would donate, and for the subsample who endorsed conditional donation. Table 2 summarizes the responses regarding which characteristics respondents thought it reasonable to specify. Predictors of Inclination to Donate and Attitude to Conditional Donation A series of logistic regression analyses were then conducted to explore predictors of inclination to donate (those who indicated it was possible or probable versus those who indicated it was very unlikely) and the attitude to conditional donation (those who approved versus those who did not or were unsure), respectively. The following groups of variables were tested: demographics (gender, age, education, ethnicity, commitment to religion); treatment variables (number of frozen embryos, time embryos had been stored, whether
TABLE 1 Respondent intentions regarding donation of embryos to an infertile couple and attitudes to conditional donation. Likelihood of donating to another infertile couple
Unlikely n (%)
Possible n (%)
Probable n (%)
99 (74)
29 (22)
5 (4)
90 (86)
13 (12)
1 (1)
All eligible respondents (n ¼ 133) Subsample excluding those who indicated use in treatment probable (n ¼ 104) Should donors be able to specify recipient characteristics?
Disagree n (%)
Unsure n (%)
Agree n (%)
25 (19)
44 (33)
64 (48)
All eligible respondents (n ¼ 133) Would capacity to specify influence likelihood of donating?
No influence n (%)
Somewhat more likely n (%)
Much more likely n (%)
78 (59) 71 (61)
32 (24) 29 (24)
23 (17) 18 (15)
31 (48)
17 (27)
16 (24)
All eligible respondents (n ¼ 133) Respondents who indicated that they were unlikely to donate (n ¼ 128) Respondents who endorsed conditional donation (n ¼ 64) McMahon. Attitudes to conditional embryo donation. Fertil Steril 2009.
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more treatment was envisaged); and family variables (number of children, whether family was complete). There were no statistically significant predictors (all P>.05). Comments Regarding Embryo Donation Fifty-eight participants (44%: 45 women and 13 men) wrote comments on the questionnaire regarding donation of embryos to other infertile couples. Respondents who wrote comments did not differ from the remainder on demographic or treatment history variables. The major theme identified was a strong sense of ownership of the embryos and a view of them as ‘‘our own children.’’ Related subthemes included the difficulty of having ‘‘our children living elsewhere,’’ an ongoing sense of responsibility for the well-being of the embryos, and concerns about consanguinity. A second theme was guilt about the reluctance to donate in the context of empathy with the plight of others who were unable to have children (Table 3). Forty-two participants (31%: 32 women and 10 men) wrote comments regarding conditional donation. The major theme to emerge from these comments was control, but there were different views about this. Subthemes included a desire for control over the fate of the embryos in the belief that this would reduce anxiety for donors, along with a view that specification would achieve a better match between children and recipient families. There was also, however, a recognition of the limits to what could be controlled, and some respondents expressed the view that donation required relinquishing control. Finally, some expressed concerns about the potential for discrimination (see Table 4 for examples). DISCUSSION The response rate in this study (29%) is at the lower end of poor response rates commonly reported in studies regarding
TABLE 2 Attitudes to specifying recipient characteristics. Reasonable n (%) Age of recipient mother Age of recipient father Education level of family Couple status Location—where recipient family lived Ethnicity of recipient family Religion of recipient family Sexuality of recipient couple
74 (48) 72 (47) 72 (47) 93 (60) 53 (35) 75 (49) 70 (45) 90 (58)
Note: Numbers vary as not all participants completed all items. McMahon. Attitudes to conditional embryo donation. Fertil Steril 2009.
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attitudes toward embryo donation, and it is a substantial limitation in interpreting study findings. Nonetheless, the mixed quantitative methodology and thematic analysis of comments allowed us to describe attitudes toward conditional donation in a reasonably large sample and to explore the thinking underpinning these attitudes. Study findings are consistent with a growing body of literature confirming that very few individuals with stored frozen embryos are positively inclined toward donating their surplus embryos to other infertile couples. Only 22% percent of respondents were willing to consider the option, and only 4% indicated it was a likely outcome. It is important to note that there were no cases where both partners agreed that donation was a probable outcome. Findings also suggest, however, that protocols allowing directed conditional donation may result in a modest to moderate increase in donors, but this needs to be confirmed empirically. The study is limited by examining intentions and attitudes but not behavior. Recent Australian data from the state of Victoria indicate that rates of donation to other couples range from 11% to 16% (1, 6); however, in the clinic from which data were collected for this study, just six embryos were donated to four couples in 2005. The results need to be interpreted in the context of an option to store embryos (albeit with a storage fee) for up to 10 years in New South Wales, and also in the context of the protocols and attitudes that operate at the clinic where the embryos were stored. Although it has been noted that clinic attitudes and counseling styles may influence inclination to donate (3, 4), practitioners at the clinic in this study neither encourage nor discourage donation to infertile couples. Nonetheless, the process of arriving at informed consent to donate to other couples is comprehensive and may be daunting. Couples must undertake a series of steps that include blood screening, genetic counseling, and usually several counseling sessions. Furthermore, at the required counseling sessions, couples are encouraged to think about the longer term implications of their decision and are made aware that identifying information could be provided to offspring on request at 18 years of age. Barriers to Donation Written comments indicate that reluctance to donate was related to a view of the embryo not only as a potential child but as a full sibling to existing children, and a feeling of ongoing responsibility for the well-being of the offspring. There also was concern expressed about consanguinity. These findings are consistent with other recent research identifying deeply personalized conceptualizations of stored frozen embryos (8, 10, 12), an attribution to embryos of virtual personhood, a related view of donation as analogous to the relinquishment of a child (8), the assumption of an ongoing protective responsibility for the offspring that result from donation, and uneasiness with the thought of the development of another genetically related human being without the donors knowledge or participation (4, 8). 143
TABLE 3 Themes regarding difficulties in contemplating embryo donation. OWNERSHIP Our children living elsewhere I do not feel comfortable donating embryos to another couple as I perceive the embryos as my/our children. When I think of donating the embryos, I envision them as whole children and have trouble coping with the idea of someone else bringing up our children. I don’t know if I could ever rest easy knowing that my child was being brought up by someone else (even if it was a long shot). I don’t want someone else raising my flesh and blood. The embryo is part me and part my wife. To have it taken to term by someone else would not sit well with me. I feel guilty that I have five embryos in storage and that I am unwilling to donate them. But I see the embryos as my children, and them being raised by someone else would be something I would never get over. I see it as like adopting out one of my twins. They were mine, and the thought of seeing a ‘‘little one’’ of my kids with an acquaintance in the future was too sad. Ongoing sense of responsibility for embryos I have a huge problem with donation to anyone else because I believe I would feel full responsibility for their care and well-being, no matter who the recipients were. I worry about the caliber of the people and their parenting ability. I would always wonder if the child was OK and being cared for. I could not bear the thought of another couple bringing up my child in a way that might not be acceptable to me. Concerns about consanguinity—implications for existing children I am scared about the possible repercussions later in life. For example, one of my children meeting up and getting together (highly unlikely but possible). I don’t believe there should be a population running around that are possibly related and don’t know it. Dilemma of having our ‘‘kids’’ (embryo origin) in an unknown community without our knowledge and subsequent consequences. The issue of donation is made hard by the fact I have two children who would have a genetic brother or sister living in a different family. GUILT REGARDING RELUCTANCE TO DONATE I personally feel this option would be like adopting your child/ren out, and I would never do that. At the same time I feel selfish for these thoughts as I know what it is like to have to consider a future without children. I would never donate my embryo because I would always think of the child as my child. I could not detach myself from what I consider part of my husband and me, regardless of who the recipients are. I wish I felt differently as I have great sympathy for infertile couples. Having struggled with infertility for 6 years I would love to be the sort of person who could donate my embryos to help another couple struggling with infertility. But I’m not sure I can. McMahon. Attitudes to conditional embryo donation. Fertil Steril 2009.
In the current study, it was striking how many couples referred to frozen embryos as ‘‘our children,’’ and references to genetic relatedness were common. A number commented that they found it difficult, even painful, to think about their ‘‘own children’’ living elsewhere and that they would 144
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continue to worry about the quality of the caretaking environment. Also consistent with other research (8, 11) is the guilt expressed by participants about their reluctance to donate in the context of an altruistic sense of responsibility related to their empathy for other infertile couples.
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TABLE 4 Attitudes regarding whether donors should be able to specify recipient characteristics. CONTROL Control would reduce donor anxiety Donating embryos is like adopting out a child—it would greatly reduce the anxiety about this if you knew your wishes for that child could be catered for. Consider that you are looking for a lifelong home for your child; those choices are your responsibility, and the last choice that you make that will affect your child’s well-being. Donors need to feel they have made the best possible decision regarding the offspring’s well-being and future life chances/security/happiness. I think I would worry less if I thought the child would be in an environment that was similar to what it would be in if with the donor parents. By far the biggest concern with donation is concern for the child’s future well-being. The more confident I could be on this point the more likely I would be able to donate. I don’t think it is unreasonable for donors to want detailed information about recipients or even meet them, although I can imagine this would be difficult for the potential recipients. Desirability of ‘‘matching’’ children to recipient families Would be logical to match child’s traits to recipient parents. This would save the child feeling very different. However, one must consider the race or ethnic background of the embryo or recipient couple. How will the child be affected when growing up with a family who may look and act differently? Acknowledgment of the limits of what can be controlled Statistically specifying characteristics would give the child a more reliable environment to grow up in, but education, finance, religion, sexuality, etc., will not determine the level of love they will give that child. I think many of the factorsa above are irrelevant; it is the suitability of a couple to provide a loving, caring environment that is important. What’s important is how dedicated the potential recipients are going to be to the potential child. The characteristics abovea do not reflect the amount of love a child would receive having been born to the recipients. Donors need to relinquish control I believe that if you made the choice to donate you would need to trust the system to donate to appropriate recipients, and the biological parents would need to release any control over their fate. It’s worth the very small risk that a couple may not be ‘‘suitable.’’ You just have to believe in the ‘‘goodness’’ of people (‘‘the couples’’) when you have no control as to who the embryos go to. I could understand a couple happy to donate unwanted embryos to an ideal family, but it brings up a lot of questions. If you are going to donate any embryos/genetic material, you have to give up any influence over that child’s life. It should not be up to donors to specify personal characteristics or lifestyle choices as the potential children will not be their children. However, given the choice, if I were a donor I would like to specify that the recipients did not live in the same city as me and my family. CONCERN ABOUT POTENTIAL FOR DISCRIMINATION To be able to specify characteristics would make me feel better about the decision, which is probably more of a control thing than anything. I would feel like I know a little bit about the people my genetic offspring were being brought up by. I like the idea that the couple would have similar interests, etc., to me. In saying that, I can also see the problems this could cause, including discrimination. And as my husband is from one side of the world and I am from another, it would be more difficult to specify. Yes, I think that the capacity to specify specific characteristics would influence me. I would be concerned with the discrimination issues that would arise from this, so an ethical limit to the information needs to be implemented. I can imagine some ‘‘unreasonable’’ choices could be made based on the abovea (e.g., specifying Religion A, not Religion B). But ultimately all these things are/may be important to the donating parent(s). The fact that parents are donating does not mean they are any less interested in the child’s welfare than if they were using the embryos themselves. But with a limit. If you are giving away a puppy, you would like to know it’s going to be looked after well. So I think it’s reasonable that a child would be placed into an atmosphere that the genetic parent deems suitable for whatever reasons. I do feel however a waiting infertile couple shouldn’t be discriminated against. a
Refers to factors listed in Table 2, which were presented as forced choice options in the questionnaire.
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Attitudes toward Conditional Donation To our knowledge, only one other study to date has explored attitudes toward conditional donation of embryos (13), and our findings are largely consistent with findings from that Canadian sample. Both studies suggest that attitudes toward conditional donation are polarized. In our study, 48% endorsed the idea of conditional donation, 20% were opposed, and one third of the sample was unsure. Twentyfour percent of respondents who thought conditional donation reasonable indicated that they would be much more likely to donate their embryos if they had the capacity to specify recipient characteristics, a figure similar to that previously reported by Newton et al. (13), and a further 17% indicated that they would be somewhat more likely to donate. In both studies, albeit with somewhat different predictors, regression analyses failed to predict factors associated with attitudes toward conditional donation or inclination to donate. Responses varied regarding factors potential donors would like to specify, but a predominant theme was the desire that the embryo should go to a family similar to the donors’ own family, and this was associated with a view that this would allow greater confidence about the quality of the caretaking environment and that the child would be well ‘‘matched’’ to the recipient family. Newton et al. (13) concluded that those who were most likely to participate in embryo donation held views more congruent with embryo adoption than a model of traditional medical donation. Although our study did not directly address attitudes about adoption models, a number of respondents indicated that they saw embryo donation as analogous to adoption. Views were polarized, however, as more than half (52%) were not clearly in favor of conditional donation. Some commented that, although finding a recipient family that ‘‘matched’’ one’s own was desirable, this could also be complicated in practice, particularly for mixed race couples; others expressed concerns about the potential for discrimination. Some respondents took the view that relinquishing control was central to embryo donation, and a number acknowledged limits with respect to what can be controlled, pointing out that criteria that are easily specified may not, in fact, be reliable indicators of the quality of the caretaking environment or the dedication of the recipient parents. This view was supported in other commentaries on the difficulties of applying principles regarding the welfare of the child in practice (16), given the absence of a reliable evidence base and the potential for arbitrary and prejudiced decision making (17). CONCLUSIONS Our findings suggest that policies that give donors more control over the fate of donated embryos may improve the acceptability of embryo donation and the willingness of couples to participate, and may result in a modest to moderate increase in willing donors, but this needs to be confirmed empirically. Given current and prior evidence that decisions about surplus embryos are difficult and distressing (6, 8, 146
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11), these findings also confirm that any changes in protocol involving conditional donation would need to be coupled with appropriate education and counseling to assist donors in managing their ongoing feelings about the potential offspring in the context of the need to ultimately relinquish control and the limits regarding what can actually be controlled. Further, some investigators (18) have suggested that such counseling and education programs should also encourage reflection on beliefs about the central importance of genetic relatedness with regard to what constitutes a family and what underpins ties between parents and children. The current data provide some support for views that embryo donation needs to be metaphorically reframed if the numbers of patients who opt to donate embryos is to be increased (8, 18) and suggest that open or directed embryo donation may have the potential to ease some of the anxiety that couples feel about the future of the offspring by offering some assurance about the suitability of recipient couples (18). There are, however, some substantial challenges in implementation. Difficulties in specifying criteria for parental ‘‘suitability’’ and the potential for discriminatory practices have already been noted (16, 17). Further, the implementation of conditional donation protocols raises complex ethical, legal, and philosophical issues around the moral status of the embryo as equivalent to either human tissue or a potential person (8, 19, 20). Implicit in protocols that treat embryo donation as analogous to adoption rather than to tissue or organ donation is a view that the embryo is a child with rights, a stance at odds with policies permitting donation for research or discarding embryos (5). Different and often coexisting or fluid representations of embryos as potential persons on the one hand and biological material that can be destroyed on the other (8, 21) are challenging, not just for potential donors but also for practitioners and regulators. While potential donors note the parallels with adoption, several commentaries have noted the complexity and comprehensiveness of adoption laws and the absence of any comparable legal framework for embryo adoption (20, 21). Future research could compare rates of donation in clinics with different protocols (conditional or not) and employ longitudinal designs to examine the psychological well-being of donors, recipient parents, and offspring over time. The use of forced choice categories to establish the characteristics donors may wish to specify was a limitation in our study. Future studies using in-depth interview methodologies may provide a better understanding of the aspects that potential donors wish to control as well as the dilemmas they face and the decision-making process. Finally, research to date is consistent regarding why people do not donate, but little is known about those who do donate, how they adjust psychologically after the decision is made, and what distinguishes donors from nondonors. Acknowledgments: The authors thank Fiona McKinlay for assistance with recruitment, Danielle Ellis for assistance with data coding and thematic analysis, and Cherie Borosh for thoughtful discussion of clinic protocols regarding embryo donation.
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Psychology Department, Macquarie University, North Ryde, New South Wales; and b IVFAustralia, Sydney, Australia
Objective: To survey clients with stored frozen embryos regarding intention to donate embryos to other couples and attitudes toward conditional donation. Design: Anonymous postal questionnaire. Setting: A private IVF clinic in Sydney, Australia. Patient(s): Clients with embryos stored for 3 or more years. Intervention(s): Patients completed a survey regarding attitudes to embryo donation and conditional embryo donation. Spontaneous written comments were also analyzed. Main Outcome Measure(s): Intentions regarding embryos, attitudes toward conditional donation, extent to which conditional donation would influence decision-making. Result(s): Of the clients surveyed, 99 women (35%) and 66 men (23%) responded. Only 4% indicated it was likely they would donate to other couples; 48% thought donors should be able to specify characteristics of recipients; and 41% indicated they would be more likely to donate if donation was conditional. A sense of ownership and responsibility for the well-being of the offspring underpinned reluctance to donate. Perceived control over the caretaking environment was seen as an advantage of conditional donation. Concerns were also raised about the need for donors to relinquish control and the potential for discrimination. Conclusion(s): An empirical understanding of the views of infertility patients regarding stored embryos is critical to informing public discourse, policy debates, and clinical practice as well as counseling, policy, and protocols on embryo donation. (Fertil Steril 2009;91:140–7. 2009 by American Society for Reproductive Medicine.) Key Words: Embryo donation, conditional, infertile couples
Studies consistently show that in assisted reproduction technology (ART) practice the number of couples requiring donor gametes (sperm, eggs, or embryos) to conceive continues to greatly outweigh the number of donors (1), and that present donor recruitment and treatment services are less efficient than they should be (2). The success of recruiting altruistic donors is likely to be associated with the attitudes of the broader community as well as the specific culture and protocols of the reproductive technology unit (3, 4). An empirical understanding of the views of infertility patients regarding stored embryos is critical to informing public discourse, policy debates, and clinical practice (4, 5). Although recent research shows most couples indicate that they would prefer embryos to be used rather than destroyed (6, 7), in reality the majority opt to dispose of their embryos (1, 8, 9), relatively few report an inclination to donate to other infertile couples (6, 10), and even fewer actually donate (1, 6, 7).
now confirm that the subjective conceptualization of frozen embryos as potential children and siblings of their existing children (7) and a related concern about the lack of control over what happens to the embryos after donation contribute to ambivalence (4, 6, 8, 10–12) and distress regarding decision making (6, 8).
To plan effective counseling practices and donor recruitment services, it is important to understand the dynamics of decision-making for potential donors (5, 7). Several studies
Consent processes that give donors explicit control over the ways in which their donated embryos will and will not be used may facilitate the decision-making process (12, 13). To our knowledge, only one study to date has examined attitudes toward conditional versus unconditional embryo donation (13). In this Canadian sample, attitudes were polarized, with most of those inclined to donate holding views congruent with a model of embryo adoption rather than organ donation. Twenty-four percent of respondents indicated they would only participate in embryo donation if they were allowed to attach conditions to their donation, leading the investigators to conclude that protocols allowing conditional donation could increase the acceptability of embryo donation for a substantial subset of potential donors.
Received April 27, 2007; revised July 25, 2007; accepted August 1, 2007. Financially supported by Macquarie University and IVFAustralia. D.S. is Director of the Research and Development Committee of IVFAustralia and a shareholder in the company. Presented in part at the 25th Annual Scientific Meeting of the Fertility Society of Australia, Sydney, Australia, 23-25 October, 2006. Reprint requests: Catherine Anne McMahon, Ph.D., Psychology Department, Macquarie University, North Ryde, NSW, Australia, 2109 (FAX: 61-2-9850-8062; E-mail: [email protected]).
CONTEXT FOR THE CURRENT STUDY In Australia, the most recent available figures indicate that in 2003 there were 104,917 embryos in storage (14). Couples have four options with respect to their frozen embryos: to use them in subsequent treatment cycles, to dispose of them, to donate them for research, or to donate them to
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another infertile couple. A fifth option is to defer the decision and leave the embryos in storage. Regulatory guidelines and protocols for embryo storage and donation vary from state to state (1). In New South Wales, where the current study was conducted, couples have a maximum storage time of 5 years with an option to renew for a further 5 years. Victoria is the only Australian state that has legislation giving offspring that result from gamete donation the right to identifying as well as nonidentifying information at 18 years. In South Australia and Western Australia, there is a legislative right to nonidentifying information in mature offspring, and identifying information can be provided if all parties consent. There is currently no legislation in Tasmania, the Australian Capital Territory, or New South Wales, where the current research was conducted, although draft legislation is under discussion in New South Wales. In the absence of legislation, the New South Wales clinic involved in the current study follows guidelines from the National Health and Medical Research Council (NHMRC) (15) and the code of practice of the Reproductive Technology Accreditation Committee (RTAC), both of which recommend that clinics facilitate conception using donated gametes only if donors consent to being identified to donor offspring in the future. The most recent NHMRC ethical guidelines (15) have also noted the importance of respecting the donor’s wishes and approve unknown but directed donation of embryos in states and territories where such a practice is not illegal. Consequently, the current study surveyed clients with surplus embryos stored for 3 years or longer regarding [1] the likelihood that they would donate embryos to other infertile couples; [2] their attitudes toward conditional donation; [3] the recipient characteristics that potential donors thought it reasonable to specify, and [4] whether the capacity to specify recipient characteristics would influence their decision about embryo donation. MATERIALS AND METHODS The study was approved by the ethics review committees (human research) of IVFAustralia and Macquarie University, New South Wales. Selection of Participants The protocol at the clinic from which participants in the current study were recruited offered options of a 1-year or 3-year storage plan, after which patients with stored embryos received a letter regarding their intentions. At this point, they could elect continued storage (with a storage fee) for up to 10 years. Potential participants were identified as those who had embryos stored at one clinic in northern Sydney, New South Wales, Australia, for 3 or more years. Letters of invitation to participate in the study by completing a questionnaire were sent to 576 eligible individuals (283 couples). In an attempt to boost response rates, a second copy of the survey accompanied by a reminder letter was sent to all identified eligible participants after a month, irrespective of whether forms had been returned. Fertility and Sterility
Questionnaire The written questionnaire included questions about demographics, including education, ethnic background, religion (commitment to practice), and infertility treatment history (number of embryos stored, time embryos had been stored, whether couples had completed their families, likelihood of using embryos in subsequent treatment). Respondents were asked to indicate how likely it was that they would donate their surplus embryos to another infertile couple (three response options: very unlikely, possibly, or probably), with ample space provided for written comments. Subsequent questions explored whether donors should have the right to specify characteristics of recipients (three response options: yes, no, or unsure), with an invitation to add written comments. A list of attributes donors may wish to specify followed, and respondents were asked to indicate on a Likert scale how reasonable they thought each was ranging from 1 (not at all reasonable) to 6 (very reasonable). The final question asked whether the capacity to specify recipient characteristics would influence their decision to donate (three response options: ‘‘would not influence my decision at all,’’ ‘‘would make it somewhat more likely that I would donate,’’ or ‘‘would make it much more likely that I would donate’’). Once again, written comments were invited. Statistical Analyses All statistical analyses were performed using the Statistical Package for the Social Sciences (SPSS version 15; SPSS, Inc., Chicago, IL). P<.05 was considered statistically significant. After analyzing the quantitative questionnaire data, all written comments regarding [1] intentions to donate to other infertile individuals and [2] attitudes toward conditional donation were reviewed by the first author to identify major themes. These thematic data were then grouped according to subthemes. A second coder then reviewed the major themes and subthemes identified in the context of the range and variability of all written comments made. Overall, agreement between coders was high, and where there were differences in interpretation, the themes were revised to better reflect a consensus between the two coders. RESULTS There were 576 eligible individuals (283 couples). One hundred and sixty-five questionnaires (29%) were returned: 99 women (35%) and 66 men (23%). Although only patients whose records indicated embryos had been stored for 3 years or more were approached, a number of respondents indicated they had embryos that had been stored for less than 3 years. The most likely explanation for this discrepancy relates to clinic protocols if just one embryo is stored. In such cases, when couples resume treatment, they are advised to have a full stimulation cycle, whereby more embryos may be produced. Thus, some couples may have one embryo stored longer than 3 years and others stored for less time. These cases were excluded from data analysis, leaving a total of 133 respondents (78 women and 55 men). 141
Sixty-nine percent (n ¼ 91) of eligible respondents were born in Australia, 82% (n ¼ 109) were Caucasian, and 44% (n ¼ 58) were tertiary educated. Respondents had on average four stored embryos (standard deviation [SD] 3.03; range: 1–18), and the average time the embryos had been stored was 66 months (SD 36.10; range: 36–215). Respondents did not differ from nonrespondents with regard to number of stored embryos or time embryos had been stored. Comparative data were not available regarding number of children for nonrespondents. Although embryos had been stored for 3 or more years, just 56% (n ¼ 74) of respondents indicated that they viewed their family as complete. Nine percent of respondents (n ¼ 12) had no children. Twenty-two percent (n ¼ 29) indicated that it was probable they would use the embryos themselves in subsequent treatment. Sixty-three percent (n ¼ 84) reported low religious commitment (none to moderate), and 37% (n ¼ 49) reported strong religious commitment. Likelihood of Donating Embryos to Other Infertile Couples and Attitudes toward Conditional Donation Table 1 summarizes respondent intentions regarding embryo donation and views on conditional donation. Embryo intentions were first considered for the whole sample, and then with those who had indicated it was likely they would use the embryos in treatment excluded. As the table illustrates,
few were open to donation. There were 40 couples in whom both partners responded to the questionnaire. Of these, there were seven couples open to donation; three in whom both agreed donation was possible, and four in whom one indicated donation was possible and the other probable. Forty-eight percent agreed that couples should be able to specify donor characteristics. The extent to which a capacity to specify would influence the decision to donate was considered for the whole sample, for those who indicated that it was unlikely they would donate, and for the subsample who endorsed conditional donation. Table 2 summarizes the responses regarding which characteristics respondents thought it reasonable to specify. Predictors of Inclination to Donate and Attitude to Conditional Donation A series of logistic regression analyses were then conducted to explore predictors of inclination to donate (those who indicated it was possible or probable versus those who indicated it was very unlikely) and the attitude to conditional donation (those who approved versus those who did not or were unsure), respectively. The following groups of variables were tested: demographics (gender, age, education, ethnicity, commitment to religion); treatment variables (number of frozen embryos, time embryos had been stored, whether
TABLE 1 Respondent intentions regarding donation of embryos to an infertile couple and attitudes to conditional donation. Likelihood of donating to another infertile couple
Unlikely n (%)
Possible n (%)
Probable n (%)
99 (74)
29 (22)
5 (4)
90 (86)
13 (12)
1 (1)
All eligible respondents (n ¼ 133) Subsample excluding those who indicated use in treatment probable (n ¼ 104) Should donors be able to specify recipient characteristics?
Disagree n (%)
Unsure n (%)
Agree n (%)
25 (19)
44 (33)
64 (48)
All eligible respondents (n ¼ 133) Would capacity to specify influence likelihood of donating?
No influence n (%)
Somewhat more likely n (%)
Much more likely n (%)
78 (59) 71 (61)
32 (24) 29 (24)
23 (17) 18 (15)
31 (48)
17 (27)
16 (24)
All eligible respondents (n ¼ 133) Respondents who indicated that they were unlikely to donate (n ¼ 128) Respondents who endorsed conditional donation (n ¼ 64) McMahon. Attitudes to conditional embryo donation. Fertil Steril 2009.
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more treatment was envisaged); and family variables (number of children, whether family was complete). There were no statistically significant predictors (all P>.05). Comments Regarding Embryo Donation Fifty-eight participants (44%: 45 women and 13 men) wrote comments on the questionnaire regarding donation of embryos to other infertile couples. Respondents who wrote comments did not differ from the remainder on demographic or treatment history variables. The major theme identified was a strong sense of ownership of the embryos and a view of them as ‘‘our own children.’’ Related subthemes included the difficulty of having ‘‘our children living elsewhere,’’ an ongoing sense of responsibility for the well-being of the embryos, and concerns about consanguinity. A second theme was guilt about the reluctance to donate in the context of empathy with the plight of others who were unable to have children (Table 3). Forty-two participants (31%: 32 women and 10 men) wrote comments regarding conditional donation. The major theme to emerge from these comments was control, but there were different views about this. Subthemes included a desire for control over the fate of the embryos in the belief that this would reduce anxiety for donors, along with a view that specification would achieve a better match between children and recipient families. There was also, however, a recognition of the limits to what could be controlled, and some respondents expressed the view that donation required relinquishing control. Finally, some expressed concerns about the potential for discrimination (see Table 4 for examples). DISCUSSION The response rate in this study (29%) is at the lower end of poor response rates commonly reported in studies regarding
TABLE 2 Attitudes to specifying recipient characteristics. Reasonable n (%) Age of recipient mother Age of recipient father Education level of family Couple status Location—where recipient family lived Ethnicity of recipient family Religion of recipient family Sexuality of recipient couple
74 (48) 72 (47) 72 (47) 93 (60) 53 (35) 75 (49) 70 (45) 90 (58)
Note: Numbers vary as not all participants completed all items. McMahon. Attitudes to conditional embryo donation. Fertil Steril 2009.
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attitudes toward embryo donation, and it is a substantial limitation in interpreting study findings. Nonetheless, the mixed quantitative methodology and thematic analysis of comments allowed us to describe attitudes toward conditional donation in a reasonably large sample and to explore the thinking underpinning these attitudes. Study findings are consistent with a growing body of literature confirming that very few individuals with stored frozen embryos are positively inclined toward donating their surplus embryos to other infertile couples. Only 22% percent of respondents were willing to consider the option, and only 4% indicated it was a likely outcome. It is important to note that there were no cases where both partners agreed that donation was a probable outcome. Findings also suggest, however, that protocols allowing directed conditional donation may result in a modest to moderate increase in donors, but this needs to be confirmed empirically. The study is limited by examining intentions and attitudes but not behavior. Recent Australian data from the state of Victoria indicate that rates of donation to other couples range from 11% to 16% (1, 6); however, in the clinic from which data were collected for this study, just six embryos were donated to four couples in 2005. The results need to be interpreted in the context of an option to store embryos (albeit with a storage fee) for up to 10 years in New South Wales, and also in the context of the protocols and attitudes that operate at the clinic where the embryos were stored. Although it has been noted that clinic attitudes and counseling styles may influence inclination to donate (3, 4), practitioners at the clinic in this study neither encourage nor discourage donation to infertile couples. Nonetheless, the process of arriving at informed consent to donate to other couples is comprehensive and may be daunting. Couples must undertake a series of steps that include blood screening, genetic counseling, and usually several counseling sessions. Furthermore, at the required counseling sessions, couples are encouraged to think about the longer term implications of their decision and are made aware that identifying information could be provided to offspring on request at 18 years of age. Barriers to Donation Written comments indicate that reluctance to donate was related to a view of the embryo not only as a potential child but as a full sibling to existing children, and a feeling of ongoing responsibility for the well-being of the offspring. There also was concern expressed about consanguinity. These findings are consistent with other recent research identifying deeply personalized conceptualizations of stored frozen embryos (8, 10, 12), an attribution to embryos of virtual personhood, a related view of donation as analogous to the relinquishment of a child (8), the assumption of an ongoing protective responsibility for the offspring that result from donation, and uneasiness with the thought of the development of another genetically related human being without the donors knowledge or participation (4, 8). 143
TABLE 3 Themes regarding difficulties in contemplating embryo donation. OWNERSHIP Our children living elsewhere I do not feel comfortable donating embryos to another couple as I perceive the embryos as my/our children. When I think of donating the embryos, I envision them as whole children and have trouble coping with the idea of someone else bringing up our children. I don’t know if I could ever rest easy knowing that my child was being brought up by someone else (even if it was a long shot). I don’t want someone else raising my flesh and blood. The embryo is part me and part my wife. To have it taken to term by someone else would not sit well with me. I feel guilty that I have five embryos in storage and that I am unwilling to donate them. But I see the embryos as my children, and them being raised by someone else would be something I would never get over. I see it as like adopting out one of my twins. They were mine, and the thought of seeing a ‘‘little one’’ of my kids with an acquaintance in the future was too sad. Ongoing sense of responsibility for embryos I have a huge problem with donation to anyone else because I believe I would feel full responsibility for their care and well-being, no matter who the recipients were. I worry about the caliber of the people and their parenting ability. I would always wonder if the child was OK and being cared for. I could not bear the thought of another couple bringing up my child in a way that might not be acceptable to me. Concerns about consanguinity—implications for existing children I am scared about the possible repercussions later in life. For example, one of my children meeting up and getting together (highly unlikely but possible). I don’t believe there should be a population running around that are possibly related and don’t know it. Dilemma of having our ‘‘kids’’ (embryo origin) in an unknown community without our knowledge and subsequent consequences. The issue of donation is made hard by the fact I have two children who would have a genetic brother or sister living in a different family. GUILT REGARDING RELUCTANCE TO DONATE I personally feel this option would be like adopting your child/ren out, and I would never do that. At the same time I feel selfish for these thoughts as I know what it is like to have to consider a future without children. I would never donate my embryo because I would always think of the child as my child. I could not detach myself from what I consider part of my husband and me, regardless of who the recipients are. I wish I felt differently as I have great sympathy for infertile couples. Having struggled with infertility for 6 years I would love to be the sort of person who could donate my embryos to help another couple struggling with infertility. But I’m not sure I can. McMahon. Attitudes to conditional embryo donation. Fertil Steril 2009.
In the current study, it was striking how many couples referred to frozen embryos as ‘‘our children,’’ and references to genetic relatedness were common. A number commented that they found it difficult, even painful, to think about their ‘‘own children’’ living elsewhere and that they would 144
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continue to worry about the quality of the caretaking environment. Also consistent with other research (8, 11) is the guilt expressed by participants about their reluctance to donate in the context of an altruistic sense of responsibility related to their empathy for other infertile couples.
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TABLE 4 Attitudes regarding whether donors should be able to specify recipient characteristics. CONTROL Control would reduce donor anxiety Donating embryos is like adopting out a child—it would greatly reduce the anxiety about this if you knew your wishes for that child could be catered for. Consider that you are looking for a lifelong home for your child; those choices are your responsibility, and the last choice that you make that will affect your child’s well-being. Donors need to feel they have made the best possible decision regarding the offspring’s well-being and future life chances/security/happiness. I think I would worry less if I thought the child would be in an environment that was similar to what it would be in if with the donor parents. By far the biggest concern with donation is concern for the child’s future well-being. The more confident I could be on this point the more likely I would be able to donate. I don’t think it is unreasonable for donors to want detailed information about recipients or even meet them, although I can imagine this would be difficult for the potential recipients. Desirability of ‘‘matching’’ children to recipient families Would be logical to match child’s traits to recipient parents. This would save the child feeling very different. However, one must consider the race or ethnic background of the embryo or recipient couple. How will the child be affected when growing up with a family who may look and act differently? Acknowledgment of the limits of what can be controlled Statistically specifying characteristics would give the child a more reliable environment to grow up in, but education, finance, religion, sexuality, etc., will not determine the level of love they will give that child. I think many of the factorsa above are irrelevant; it is the suitability of a couple to provide a loving, caring environment that is important. What’s important is how dedicated the potential recipients are going to be to the potential child. The characteristics abovea do not reflect the amount of love a child would receive having been born to the recipients. Donors need to relinquish control I believe that if you made the choice to donate you would need to trust the system to donate to appropriate recipients, and the biological parents would need to release any control over their fate. It’s worth the very small risk that a couple may not be ‘‘suitable.’’ You just have to believe in the ‘‘goodness’’ of people (‘‘the couples’’) when you have no control as to who the embryos go to. I could understand a couple happy to donate unwanted embryos to an ideal family, but it brings up a lot of questions. If you are going to donate any embryos/genetic material, you have to give up any influence over that child’s life. It should not be up to donors to specify personal characteristics or lifestyle choices as the potential children will not be their children. However, given the choice, if I were a donor I would like to specify that the recipients did not live in the same city as me and my family. CONCERN ABOUT POTENTIAL FOR DISCRIMINATION To be able to specify characteristics would make me feel better about the decision, which is probably more of a control thing than anything. I would feel like I know a little bit about the people my genetic offspring were being brought up by. I like the idea that the couple would have similar interests, etc., to me. In saying that, I can also see the problems this could cause, including discrimination. And as my husband is from one side of the world and I am from another, it would be more difficult to specify. Yes, I think that the capacity to specify specific characteristics would influence me. I would be concerned with the discrimination issues that would arise from this, so an ethical limit to the information needs to be implemented. I can imagine some ‘‘unreasonable’’ choices could be made based on the abovea (e.g., specifying Religion A, not Religion B). But ultimately all these things are/may be important to the donating parent(s). The fact that parents are donating does not mean they are any less interested in the child’s welfare than if they were using the embryos themselves. But with a limit. If you are giving away a puppy, you would like to know it’s going to be looked after well. So I think it’s reasonable that a child would be placed into an atmosphere that the genetic parent deems suitable for whatever reasons. I do feel however a waiting infertile couple shouldn’t be discriminated against. a
Refers to factors listed in Table 2, which were presented as forced choice options in the questionnaire.
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Attitudes toward Conditional Donation To our knowledge, only one other study to date has explored attitudes toward conditional donation of embryos (13), and our findings are largely consistent with findings from that Canadian sample. Both studies suggest that attitudes toward conditional donation are polarized. In our study, 48% endorsed the idea of conditional donation, 20% were opposed, and one third of the sample was unsure. Twentyfour percent of respondents who thought conditional donation reasonable indicated that they would be much more likely to donate their embryos if they had the capacity to specify recipient characteristics, a figure similar to that previously reported by Newton et al. (13), and a further 17% indicated that they would be somewhat more likely to donate. In both studies, albeit with somewhat different predictors, regression analyses failed to predict factors associated with attitudes toward conditional donation or inclination to donate. Responses varied regarding factors potential donors would like to specify, but a predominant theme was the desire that the embryo should go to a family similar to the donors’ own family, and this was associated with a view that this would allow greater confidence about the quality of the caretaking environment and that the child would be well ‘‘matched’’ to the recipient family. Newton et al. (13) concluded that those who were most likely to participate in embryo donation held views more congruent with embryo adoption than a model of traditional medical donation. Although our study did not directly address attitudes about adoption models, a number of respondents indicated that they saw embryo donation as analogous to adoption. Views were polarized, however, as more than half (52%) were not clearly in favor of conditional donation. Some commented that, although finding a recipient family that ‘‘matched’’ one’s own was desirable, this could also be complicated in practice, particularly for mixed race couples; others expressed concerns about the potential for discrimination. Some respondents took the view that relinquishing control was central to embryo donation, and a number acknowledged limits with respect to what can be controlled, pointing out that criteria that are easily specified may not, in fact, be reliable indicators of the quality of the caretaking environment or the dedication of the recipient parents. This view was supported in other commentaries on the difficulties of applying principles regarding the welfare of the child in practice (16), given the absence of a reliable evidence base and the potential for arbitrary and prejudiced decision making (17). CONCLUSIONS Our findings suggest that policies that give donors more control over the fate of donated embryos may improve the acceptability of embryo donation and the willingness of couples to participate, and may result in a modest to moderate increase in willing donors, but this needs to be confirmed empirically. Given current and prior evidence that decisions about surplus embryos are difficult and distressing (6, 8, 146
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11), these findings also confirm that any changes in protocol involving conditional donation would need to be coupled with appropriate education and counseling to assist donors in managing their ongoing feelings about the potential offspring in the context of the need to ultimately relinquish control and the limits regarding what can actually be controlled. Further, some investigators (18) have suggested that such counseling and education programs should also encourage reflection on beliefs about the central importance of genetic relatedness with regard to what constitutes a family and what underpins ties between parents and children. The current data provide some support for views that embryo donation needs to be metaphorically reframed if the numbers of patients who opt to donate embryos is to be increased (8, 18) and suggest that open or directed embryo donation may have the potential to ease some of the anxiety that couples feel about the future of the offspring by offering some assurance about the suitability of recipient couples (18). There are, however, some substantial challenges in implementation. Difficulties in specifying criteria for parental ‘‘suitability’’ and the potential for discriminatory practices have already been noted (16, 17). Further, the implementation of conditional donation protocols raises complex ethical, legal, and philosophical issues around the moral status of the embryo as equivalent to either human tissue or a potential person (8, 19, 20). Implicit in protocols that treat embryo donation as analogous to adoption rather than to tissue or organ donation is a view that the embryo is a child with rights, a stance at odds with policies permitting donation for research or discarding embryos (5). Different and often coexisting or fluid representations of embryos as potential persons on the one hand and biological material that can be destroyed on the other (8, 21) are challenging, not just for potential donors but also for practitioners and regulators. While potential donors note the parallels with adoption, several commentaries have noted the complexity and comprehensiveness of adoption laws and the absence of any comparable legal framework for embryo adoption (20, 21). Future research could compare rates of donation in clinics with different protocols (conditional or not) and employ longitudinal designs to examine the psychological well-being of donors, recipient parents, and offspring over time. The use of forced choice categories to establish the characteristics donors may wish to specify was a limitation in our study. Future studies using in-depth interview methodologies may provide a better understanding of the aspects that potential donors wish to control as well as the dilemmas they face and the decision-making process. Finally, research to date is consistent regarding why people do not donate, but little is known about those who do donate, how they adjust psychologically after the decision is made, and what distinguishes donors from nondonors. Acknowledgments: The authors thank Fiona McKinlay for assistance with recruitment, Danielle Ellis for assistance with data coding and thematic analysis, and Cherie Borosh for thoughtful discussion of clinic protocols regarding embryo donation.
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