1 London Health Sciences Centre and 2 University of Western Ontario, London, Ontario, Canada and 3 Mayo Clinic, 200 First St SW, Rochester, MN 55905, USA
4 To whom correspondence should be addressed at: Reproductive Endocrinology and Infertility, London Health Sciences Centre, 339 Windermere Rd., London, Ontario, Canada, N6A 5A5. e-mail: christopher.newton{at}lhsc.on.ca
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Abstract |
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Key words: cryopreservation/embryo donation/patient attitudes
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Introduction |
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In the published literature, attention has been given to the ethical and legal aspects of embryo donation (Robertson, 1995) and to a description of the procedures of different clinics where ED is offered (Marcus and Marcus, 1999
; Van Voorhuis et al., 1999
; Kingsberg et al., 2000
). However, there has been little information available about patients attitudes towards ED, other than reports of the percentage of patients willing to donate embryos to another couple. Estimates of patient receptivity to ED have varied widely and responses may be influenced by both cultural factors and the stage of infertility treatment at which couples are approached. For example, before beginning IVF treatment, 39% of couples in a Belgian study chose donation as their preferred option for disposition of unused embryos (Laruelle et al., 1995
). However, when couples are approached after embryos have been stored for between 2 and 6 years, they seem less receptive to this option. Patient willingness to donate unused embryos has been variously reported at 2% (Cooper, 1996
), 4% (Hounshell et al., 1996
) and 11% (Van Voorhuis et al., 1999
) in the USA, 17% in France (Lornage et al., 1995
) and 18% in Finland (Soderstrom-Anttila et al., 2001
). It has been speculated that donation in the abstract before treatment may be quite different from making this choice after successful treatmentwhen the couple have real living examples of what this embryo can become (Cooper, 1996
). To further complicate the issue, most studies that have assessed patient attitudes to ED fail to indicate whether patients were given information about the medical and genetic screening process required, or the ethical, legal and psychosocial implications of ED, before opinions were solicited. When such information has been provided in detail, 31% of prospective embryo donors changed their minds and withdrew from the programme (Marcus et al., 1998
).
The lack of information about patient attitudes to medical, psychosocial and ethical aspects of ED represents an important omission because embryo donation appears unique among infertility treatment options. With ED, a child born from donation has no genetic link with the rearing parentsas in adoption. Yet unlike adoption, the rearing parents have the opportunity to experience pregnancy and childbirth. This has raised questions about whether treatment should be viewed as being akin to the donation of gametes or other human tissue and rightly termed embryo donation, or closer to the process of adopting a child and more suitably characterized as embryo adoption. From a legal perspective, the process may be closer to gamete donation than postnatal adoption, since in most legal systems embryos are not considered persons (Robertson, 1995). From a psychosocial perspective, there are clear parallels to the adoption experience for the donor couple, the recipients and the child. Thus ED might be unconditional (available to any individual or couple contingent upon completion of required screening). Alternatively, consistent with current adoption practices, embryo adoption might be conditional where the providing couple is permitted input concerning the preferred characteristics of the recipient couple. Currently, North American ED programmes employ both conditional and unconditional models with
24% of clinics allowing donors some control over who receives their embryos (Kingsberg et al., 2000
). The policies and practice of ED in other countries may well differ. However, no reports of donor attitudes to different models of donation have yet been published.
The present study was conducted to assess IVF patients attitudes to ED, after patients had been informed about the key issues and the process involved. Study goals were to assess patient reactions to different models of ED, to the various procedures involved in ED and to determine which attitudes predict willingness to serve as embryo donors.
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Materials and methods |
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Sample selection
Since 1992, all patients participating in IVF treatment at this university teaching hospital have been offered the option of cryopreservation and storage of embryos not used in their treatment cycle. Cryopreservation is offered for 5 years, but in reality embryos have remained in storage beyond this time period. Patients complete a signed consent choosing from two disposition options if embryos remain unclaimed: (i) destruction of embryos or (ii) donation for research. There is an initial flat fee for storage.
Potential participants in the study were selected by first identifying a total of 105 couples who had not returned for their frozen embryos for between 3 and 8 years since their last IVF treatment cycle. Of these 105 couples, 51 couples were successfully located and invited to participate in the study by completing a written questionnaire. Forty-nine couples agreed to participate and 36 women and 31 men returned questionnaires (a 68% response rate).
Information about embryo donation
Participating couples received a written brochure describing the process of ED and who might be eligible to be donors and recipients. It was emphasized that ED would be available to eligible heterosexual and lesbian couples and single women of diverse racial, religious and socioeconomic background. Two possible models of embryo donation were described: (i) unconditional donation, where embryos would be donated without conditions attached; and (ii) conditional donation, where couples would be permitted to limit their donation to persons or couples according to the donor couples preferences. Also, the procedure of ED was described, including the need for screening for both infectious and genetic diseases, psychological screening and counselling. Couples were informed of the various sorts or non-identifying personal information that would be shared with a recipient couple and potential child including donors race, age, height and weight, hair and eye colour and complexion. Couples were informed about optional additional information that might be shared including family health history, special abilities, interests and hobbies, a photograph, or personal letter. Implications of donation were reviewed including current and future psychological risks to the donors and their own children and future risks if contact was made with the potential child. Current and future legal uncertainties were described, including the assumption of parenting responsibilities by the recipient couple, future claims of financial support and the protection of the donors identities. (This brochure is available from the senior author upon request).
Measures
Both the female and male partner of each couple completed a 26 item written questionnaire. The questionnaire elicited information about number of biological and non-biological children in the home, satisfaction with current family size, reasons for not returning for frozen embryos and plans for having future children. Patients were then asked to rate their attitudes to different aspects of ED on a series of 5 point rating scales, for example, from 0 (very uncomfortable or very unreasonable) to 4 (very comfortable or very reasonable). Patients reported their reactions to different models of ED, to the screening procedures for potential donors and to sharing different forms of non-identifying and identifying information with recipients. Finally, patients rated their support for ED in principle and their interest in donating embryos if an embryo donation programme was offered.
Statistical analyses
Data were analysed using SPSS software (SPSS Inc., USA). For each questionnaire item, the percentage of respondents endorsing each of the five anchor points was calculated. Questionnaire items employing Likert scales were treated as interval scales of measurement and male and female responses were compared through a series of Students t-tests for paired samples. The strength of association between responses to different questionnaire items was assessed by means of Pearson correlation coefficients. Forward linear regression was used to examine the predictive utility of variables.
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Results |
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The majority of respondents (68.5%) reported being either very or extremely satisfied with their current family size and only 9% indicated feeling either very or extremely dissatisfied. However, 26.4% planned to have more children and 22.4% indicated that they very likely or definitely planned to return for frozen embryos.
Couples were asked their primary reason for not returning to claim frozen embryos from a list of 11 possible factors generated by the authors of the study. Men and women offered similar responses. In order of most frequently reported, these reasons were: (i) having completed family size, (ii) being busy with childcare or (iii) the return of frozen embryos was emotionally too stressful (Table I). Not surprisingly, a significantly negative association was found between the number of biological children in the home (from either present or previous relationships) and an individuals intentions to return for unclaimed embryos. Those with more children at home were less likely to have intentions of returning for their embryos (r = 0.235, P = 0.05). Similarly, those who described greater satisfaction with current family size reported being unlikely to return (r = 0.60, P < 0.001). Among those who cited having completed our family as the primary reason for not returning, 100% indicated being very unlikely to return for embryos at any future time. By contrast, of those who cited childcare demands or work stress as a primary reason, 73 and 60% respectively indicated a definite plan to return for embryos at some future date.
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Similarly, support for unconditional and conditional models of ED appeared quite polarized, although men and women did not differ significantly in their opinions. As Figure 1 shows, almost one-half (45%) of the respondents indicated that donation should probably or definitely be unconditional. When asked their reactions to a conditional model of donation, a similar split was evident. Exactly 50% felt that donation should probably or definitely be conditional. (Mirroring this division of support, one subgroup of respondents was firmly opposed to unconditional donation, while another subgroup firmly opposed conditional donation.) Those who most strongly supported an unconditional model of donation indicated that the option of attaching conditions to a donation would not be an important factor in their decision-making (r = 0.80, P < 0.001). In contrast, those favouring conditional donation were more likely to view donation as contingent upon having this option (r = 0.85, P < 0.001). For example, 24% of respondents said that a decision to donate embryos definitely would depend upon being able to attach conditions to their donation.
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Support for a model of unconditional donation was significantly associated with support for the idea of ED in principle (r = 0.29, P < 0.02). However, support for an unconditional model did not significantly predict personal willingness to donate embryos. Dissatisfaction with current family size was also a significant predictor of support for ED (r = 0.24, P < 0.05). Those more dissatisfied were more supportive of ED in principle, but no more willing to donate. However, neither the number of biological children, the number of children born from IVF, nor the total number of children living at home predicted individual attitudes to ED or willingness to donate.
Those individuals who expressed greater comfort with the disclosure of personal information appeared to be more willing to consider embryo donation. Willingness to donate was significantly associated with greater comfort in providing; a description of abilities and interests (r = 0.39, P = 0.001), a personal letter to the child (r = 0.56, P < 0.001) and a photograph (r = 0.52, P < 0.001). Although couples seemed equally divided in their wish to be informed or not informed about the outcome of ED, those willing to consider donation were significantly more likely to prefer knowing the outcome (r = 0.256, P < 0.04). Also, those willing to consider donation were significantly more likely to agree to future contact with a potential child (r = 0.45, P < 0.001).
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Discussion |
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Couples who do not return for their frozen embryos appeared to do so either because their needs to be parents had been at least partially met or due to ongoing child care demands. Among couples that did not return for frozen embryos for >3 years, the majority (61%) had one or more children born through IVF and an even larger proportion (85%) had a biological child from their present or prior relationships. Only 15% had no children living at home. Success in achieving family goals and childcare responsibilities were cited as the most frequent reasons for not returning for frozen embryos. In the same vein, family size and satisfaction with current family size appeared to be a strong predictive factor in decision-making. Those with more children at home and those who felt more satisfied with their family size indicated being less likely to return for frozen embryos. Although concerns have been expressed that couples might feel some moral or ethical obligation to return for embryos, even if their planned family size has been achieved, this did not seem to be the pattern for the majority of couples. These reasons seem quite consistent with explanations offered by European couples for not utilizing their embryos. For example, among Swedish couples who chose not to return for embryos, practical reasons dominated; such as a positive outcome of IVF or a feeling that it was too soon to have another child (Skoog-Svanberg et al., 2001). Also among French couples, those who abandoned plans for further parenthood were more likely to have experienced a multiple pregnancy (Lornage et al., 1995
).
Somewhat surprisingly in our study, 17% of women and 10% of men reported their primary reason for not returning was due to a perception that the thawing and transfer of frozen embryos would be emotionally stressful. While there is evidence that failed IVF treatment following fresh transfer can be highly stressful to a subset of couples (Newton et al., 1990), there has been little information about couples reactions to the unsuccessful return of frozen embryos. The results suggest a need for follow-up and support of these couples to facilitate further treatment efforts.
Patient attitudes to the typical screening procedures required for embryo donation were overall quite positive. Patients expressed high support for donor screening for infectious diseases and moderate support for both genetic and psychological screening, suggesting that these requirements are perceived as reasonable by the majority of patients. In contrast, patient comfort with the sharing of various forms of non-identifying information with a recipient couple or child was more variable. Only about one-half would feel very comfortable sharing even general physical characteristics such as height, weight, and hair and eye colour or family health history. A diminishing percentage would feel comfortable providing even more personal information such as a description of abilities and interests, a photograph or a letter. Responses suggested that many couples might be uncomfortable with the degree of personal involvement either required or suggested with ED. Similarly, about one-half would not wish to know the outcome of donation even if they chose to participate.
This study represents the first attempt to compare patient attitudes to different models of embryo donation. When patients were asked for reactions to models of unconditional and conditional donation, attitudes were quite polarized, although men and women did not differ significantly in their opinions. When presented with a description of an unconditional model, 45% supported it but nearly one-third were strongly opposed. When a conditional model was described, 50% supported it but 19% were strongly opposed. Not surprisingly, among those who strongly supported an unconditional model of donation, having the option of attaching conditions to a donation appeared to be largely irrelevant in making a decision whether or not to donate embryos. In contrast, those favouring a conditional model reported being less likely to donate embryos unless offered this option. Nearly one-quarter of respondents (24%) would only participate in an ED programme if allowed to attach conditions to their donation. Considering that a substantial proportion of couples (26% in one study) consider the embryo as a child already, this polarization of opinion is not surprising (Laruelle and Englert, 1995).
Unfortunately, regression analysis failed to identify a group of factors, which predicted comfort with either conditional or unconditional donation. Comfort in providing highly personal information in the form of a letter was associated with a preference for conditional donation, and discomfort in providing a letter was associated with a preference for unconditional donation. However, other tested predictors failed to provide additional unique information. Nevertheless, the pattern of significant bivariate correlations between tested predictors and support for conditional and unconditional donation raises interesting hypotheses worth further exploration. Those who preferred unconditional donation tended to be less comfortable sharing a variety of personal information with a recipient couple and less comfortable about future contact with a potential child. In contrast, strong support for a conditional model of donation was associated with greater comfort in sharing personal information and greater openness to contact with a potential child. This division of opinion seems to tap a strong preference in some individuals to maintain a psychological distance from the process, and the equally strong desire of others to have input and participate in both the process and outcome of donation. Future research might investigate whether other factors better predict attitudes toward conditional and unconditional donation.
To date, there has been little discussion in the literature of different models of donation and while unconditional donation may be the norm, clinics seem to have adopted one model or another in idiosyncratic fashion. For example, one clinic offers conditional donation, but might be inadvertently discouraging the practice by requiring donors to find their own suitable recipients (Van Voorhuis et al., 1999). These results suggest that having the option of conditional donation could increase the acceptability of ED for a substantial subset of potential donors.
Support for the idea of embryo donation was strong among participating couples. However, strongest support came not from couples who had achieved success in parenthood goals and who wanted to share the wealth, but from couples dissatisfied with their own family size and empathetic to the desires of potential recipient couples. Stronger support for ED in principle also came from respondents who favoured unconditional donation. These individuals are less concerned about knowing the circumstance of a recipient couple and appear more willing to place confidence in the individual programme to locate suitable recipients.
Although support for ED in principle was strong, far fewer (12%) were willing to seriously consider donation. The provision of detailed information about the procedures and implications of ED did not result in appreciably fewer couples willing to consider donation in comparison with figures reported in other North American studies (Hounshell et al., 1996; Van Voorhuis et al., 1999
). Although it was possible to identify patient characteristics predictive of support for an ED programme, it proved more difficult to identify predictors of a personal willingness to donate embryos. The latter seemed to be a more subtle and complex decision. For example, support for unconditional donation was associated with support for ED in principle, but it did not predict individual willingness to serve as a donor. Similarly, those dissatisfied with their current family size supported the notion of ED, but were no more willing to serve as donors. While it might be tempting to think that those who have completed their family and who have more than one biological child might be more willing to consider ED, neither past success in IVF, nor the number of children in the home, predicted willingness to consider donation.
At the same time, potential donors do appear to possess certain characteristics. It appears that comfort in sharing information with a recipient couple is more important than acceptability of screening procedures. Those individuals more comfortable with sharing personal non-identifying information such as a letter, photograph or written description of themselves were more likely to express interest in donation. Those willing to consider ED were more likely to want information about the outcome of any donation and more receptive to the idea of future contact with a child. These attitudes were more prevalent among those who favoured a model of conditional donation. In summary, those most likely to participate in ED hold views more congruent with a model of embryo adoption than with a model of traditional medical donation. Those who view embryo donation as embryo adoption highlight the fact that (as in traditional adoption), children born via this procedure are raised by two genetically unrelated parents and that the donating couple might have an interest, and wish to participate, in the choice of rearing environment. Rather than preferring an anonymous, disinterested gift, typical of tissue and organ donation, individuals in our study who were willing to consider ED, wanted to be part of a potential childs life in terms of providing information about themselves that might be important to the child, and were more open to some form of future relationship with the child. This approach has much in common with the growing movement toward open adoption whereby birthparents and adoptive parents exchange identifying or non-identifying information (Baran and Pannor, 1990). Such attitudes also seem consistent with the shift toward a more open model of third party reproduction, which has emerged in the past 20 years. Couples are now more likely to be open about the use of donor insemination than in the past (van Berkel et al., 1999
) and the use of known rather than anonymous egg donors is commonplace (Mechanick Braverman, 1993
).
The conclusions of the present study are limited by the fact that only the reactions of Canadian couples that could be successfully located were studied. Whether the couples that could not be found have similar attitudes is unknown. Similarly, couples from other countries and cultures may well have different views. In addition, because embryo donation was not offered at the time of the study, it was not possible to isolate and study the attitudes of an actual group of donors. However, the present study does provide preliminary information about potential donor attitudes towards different models and procedures of ED. It also suggests that potential embryo donors will not necessarily be found among couples who have attained family goals through treatment success, but among couples who are comfortable with the sharing of personal, non-identifying information and who have a personal interest in the outcome of their donation efforts. Programmes may wish to consider these factors in considering both the model of donation offered and donation procedures.
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Acknowledgements |
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FOOTNOTES |
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References |
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Submitted on August 28, 2002; accepted on January 2, 2003.