Parent identity and ‘virtual’ children: why patients discard rather than donate unused embryos

Sheryl de Lacey

Research Centre for Reproductive Health and Repromed, Department of Obstetrics and Gynaecology, The University of Adelaide, South Australia 5005

Email: sheryl.delacey{at}adelaide.edu.au


    Abstract
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Acknowledgements
 References
 
BACKGROUND: Many patients prefer to donate unused embryos when surveyed. However, it is a source of frustration and curiosity that clinical audits of embryo outcomes show the majority changed their minds. In many clinics, the number of recipients continues to outweigh the number of donors. To plan effective counselling practices, it is important to understand the dynamics of decision-making for patients when determining outcomes for unused embryos. METHODS: Twelve couples and nine women (n=33) who had discarded unused embryos were interviewed using a narrative structure and various interview techniques. Interview transcripts underwent qualitative analysis through which data were grouped thematically according to similarities. Differences were also examined. RESULTS: Participants described their initial choice to donate embryos as an idealistic plan rather than a purposeful decision. Their change of mind was due to two factors: (i) a change in their standpoint from a childless couple to parents; and (ii) a change in the symbolism of the embryo from representing a chance to become pregnant to representing a ‘virtual’ child in cryo-storage. The meaning of embryo donation was likened to child relinquishment. CONCLUSION: Counselling and social policy need to take account of the symbolism of the embryo and reform current practices.

Key words: decisions/discarding embryos/embryo donation


    Introduction
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Acknowledgements
 References
 
Successful embryo cryopreservation and frozen embryo transfer (FET) have proved to be important technologies because they allow unused embryos to be stored for later use in pregnancy attempts. However, the capacity to cryostore human embryos indefinitely allows patients to defer a decision about the outcome of unused embryos. In Australia as in other countries, policy dictates the length of time that unused embryos can remain in cryostorage. This differs between states but cannot exceed 10 years according to national ethical guidelines (National Health and Medical Research Council, 1996Go). Patients can elect to donate their embryos to another infertile couple, donate them to research or discard them.

Findings from studies conducted pre-treatment of patients' attitudes to embryo outcomes indicate that many favour the option of donating embryos. It has been reported that 39% (Laruelle and Englert, 1995Go), 28.5% (Bangsboll et al., 2004Go) and 22.1% (Lornage et al., 1995Go) of patients respectively favoured donation to another couple. However, data that are based on intentions and not actual decisions are not predictive. A variety of clinic database audits shows that consistently lower numbers of patients finally elect to donate them and indeed, with the exception of Lornage et al., (1995)Go who demonstrated equivalence, the great majority choose to discard them (Cooper, 1996Go; Hounshell and Chetkowski, 1996Go; Darlington and Matson, 1999Go; Van Voorhis et al., 1999Go; Klock et al., 2001Go; Kovacs et al., 2003Go; Cattoli et al., 2004Go; Elford et al., 2004Go). For instance, in an 11 year period Kovacs et al. (2003)Go reported that 89.5% of patients discarded unused embryos. For those clinics that offer an embryo donation programme the demonstrably small numbers of patients who actually donate embryos is of concern since the demand for donated embryos is predicted to increase (Van Voorhis et al., 1999Go) and a 3 year waiting period has been recently reported (Kovacs et al., 2003Go).

The seeming disparity in client decision-making has been noted and discussed. Saunders et al. (1995)Go reported that only eight of 39 patients who indicated that they would donate their unused embryos to another couple, finally consented. The authors noted that many became uncertain after counselling during which they were asked to consider their feelings towards their embryos. A similar phenomenon was noted by Brinsden et al., (1995)Go. Other researchers report that 50% (Cooper, 1996Go) and 35% (Hounshell and Chetkowski, 1996Go) of patients changed their minds about embryo donation. Lornage et al., (1995)Go compared initial intentions with final decisions and reported that 37.5% of patients changed their attitude to embryo donation. Some used their embryos in FET while others discarded them. Similarly Klock et al., (2001)Go reported that only 29% of couples in a follow-up study had retained their original choice. Specifically, of 11 couples originally choosing embryo donation, nine changed their minds. What is surprising about these statistics, Cooper (1996)Go suggests, is not so much the low percentage of patients willing to donate their embryos, but their change of heart.

While studies using quantitative methodologies have been unable to extrapolate the reasons that lie behind these changes of attitude, they have illuminated a phenomenon that is potentially problematic in clinical practice. This phenomenon has emerged from qualitative data that was collected through open-ended questions in structured interviews or acquired as comments added to questionnaires.

Several authors have noted that increased awareness of feelings for an embryo may affect patients' final choice (Brinsden et al., 1995Go; Saunders et al., 1995Go; Cooper, 1996Go; Newton et al., 2003Go). In their survey of patients pre-treatment, Laruelle and Englert (1995)Go noted a relationship between definitions of parenting and a couples' choice between donation or destruction. They also noted that 30% of respondents considered an embryo to be a child already. The status of frozen embryos has been noted to be an important variable in existing research, but interpretation of responses to this variable is varied. For instance, in a study of 75 IVF mothers McMahon et al., (2000)Go reported that 90% thought of their embryos as ‘potential’ persons and siblings. Soderstrom-Antilla et al., (2001)Go also noted this phenomenon in comments made in the free space of their questionnaire. But Laruelle and Englert (1995)Go noted that their participants considered the embryo to be a ‘child already’. Brinsden also noted that patients thought of their embryo as a ‘tiny baby’ (Brinsden et al., 1995Go). Svanberg et al., (2001)Go coded responses to open-ended questions as ‘ethical and moral’ if they concerned thoughts of donation and ‘strange feelings about discarding human life'.

It is currently unclear how this phenomenon of parent and embryo status affects decision-making. While Laruelle and Englert reported that the status of the embryo only influenced decisions about experimentation, McMahon et al., (2000)Go reported that the view of an embryo as a potential child was influential in all decisions—delaying them, and manifesting as negative views of donating an embryo to research (McMahon et al., 2003Go).

In describing the experience for IVF mothers of making decisions about frozen embryos, McMahon et al. (2000)Go elaborated further the phenomenon of the status of unused embryos and decisions for their outcome. Many participants experienced decision dilemmas. The data suggested that feelings about unused embryos are influential and are related to the existence of a child conceived through IVF (McMahon et al., 2003Go).

Inconsistencies in patients' attitudes remain unexplained. Whilst some personal and cultural factors that may underpin and influence patients' changes of mind have been identified and discussed in quantitative studies, their meaning in decision-making remains unclear. Qualitative data has demonstrated that there is great complexity of reasoning inherent in decisions about unused embryos. Feelings for an embryo and its meaning within a family, and how these may play a part in decision-making are apparently vital. Phenomena such as this are best investigated using qualitative methods and analysis since this approach can ‘smooth out’ and make sense of contradictory findings, elaborate subtle differences, and map the complexities of lived experience (Morse, 1994Go) that have been elusive to variable testing.

The purpose of this study was to investigate, using qualitative methodology, the lived experience of patients who had selected various outcomes for unused, cryostored embryos.


    Materials and methods
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Acknowledgements
 References
 
Approval for this study was obtained from the Research Ethics Committee of the Adelaide Women's and Children's Hospital. In all, 101 patients in the clinic database who had requested in writing that their embryos be discarded after January 2002 were mailed an invitation to participate in an interview about their experience of making this decision.

Participants
The trail of decision-making for patient recruitment is outlined in Figure 1. To respect privacy and autonomy, non-responses were followed up by telephone contact from clinic personnel. Seventy-two patients did not enter the study. Of these patients, many declined and others agreed to contact the researcher but did not do so. For many the contact details were incorrect and two were unable to receive communication—one because of deafness and the other because the researcher did not speak their language. In total, 29 respondents agreed to participate but planning an interview with eight of these proved difficult and for ethical reasons they were not pursued. Twenty-one met the inclusion criteria and were interviewed face to face or by telephone in their homes. Twelve couples were interviewed and nine women were interviewed without their husbands. The 33 participants were aged 29–46 years and had elected to discard their embryos 6–17 months prior to interview. Ten couples and seven of the women had two or more children, one couple and two of the women had one child and one couple had no children at all. One couple had received an oocyte donation. All participants had completed their family with the exception of the couple who had no children.



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Figure 1. Patient recruitment trail: discarded embryos Jan 2002–May 2003

 
Interviews
Interviews followed a narrative style, i.e. the participants were encouraged to tell their story in their own words and place emphasis on what they considered important (Anderson and Jack, 1991Go). Typically an interview started with the researcher inviting the participant(s) to describe what it was like to have embryos frozen and to make a decision about their outcome. As their story unravelled, interview techniques such as open and closed-ended questions specific to the narrative content were used. In addition, hypothetical scenarios were used to help participants expand and clarify their narratives. Figure 2 displays how these techniques were used in an excerpt from an interview transcript.



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Figure 2. An example of interviewing techniques employed: a brief excerpt from a telephone interview with a participant.

 
It was apparent during data collection that many participants offered narratives that described and explained a shift in decision-making between their initial and final decision for the outcome of their embryos. According to verification strategies employed in qualitative research (Morse et al., 2002Go), this theme was noted as emerging.

Analysis
Interviews were transcribed verbatim. Transcripts were de-identified through the use of pseudonyms and checked for accuracy. The transcripts were subjected to multiple readings and sections of narrative pertaining to an analytical question: ‘why were embryos discarded rather than donated?’ were identified and coded. These thematic data were subjected to multiple readings and emerging sub-themes were developed. Conceptual diagrams were used to outline the emerging themes and map their relationship to each other. This was useful for grouping themes and also verbal consideration of possible meanings with a research advisor and clinical colleagues. The use of a metaphor of embryo donation as relinquishment was predominant and recurring.

Two primary conceptual themes emerged and were related in the rhetorical reasoning of participants associated with their change of mind between initial and final decisions: the meaning of parenthood and the meaning of the embryo. Ultimately these two themes influenced the meaning of embryo donation. The primary themes and associated sub-themes are presented and discussed using verbatim quotes to exemplify typical narrative concepts.


    Results
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Acknowledgements
 References
 
As patients begin IVF treatment they are informed about cryopreservation of embryos and are encouraged to consider options for their outcome if they are not used in their own pursuit of a family. The couples and women interviewed in this study indicated that at this point their intention was to donate them to another couple who, like themselves, were having problems in achieving pregnancy.

But after completing their family, or, as in the case of the childless couple, deferring their treatment, they all changed their minds and had discarded as few as one or as many as 15 unused embryos rather than donate them.

In our clinic, a particular counselling and consent process is only invoked when a couple indicate their preference to donate embryos in writing. None of the couples who were interviewed in this study had reached the point of formal counselling but three had indicated their wish to donate embryos in writing. They had therefore been contacted by the nurse co-ordinator. Two of these participants withdrew at this point after receiving information about the process and the issues to be considered. The remaining participant was informed that her donation could not be accepted because the embryos had been in storage for 10 years and legally there was no time to complete the process. With the exception of one couple who were unable to resolve conflict and initiated counselling, the majority had made the decision not to proceed in absence of further contact with the clinic.

The initial choice: ‘It seemed like a nice thing to do’
The intention to donate embryos to another infertile couple was typically explained as a wish to help other infertile couples or to reciprocate the services of the clinic. This wish was influenced by the experience of treatment that was taking place at the time this plan was developed. The couple's own experience of trying to become pregnant, the repetition of failed attempts to achieve pregnancy alone or with medical assistance, and the repetition of emotional experience of disappointment and, in some cases, early pregnancy loss was pivotal. At the point of initial decision-making, none were convinced that there would be any unused embryos in their case. However, some embryos were unused due to spontaneous naturally conceived pregnancies before they could be used in FET.

The women and partners who were interviewed in this study described treatment processes that were physically and emotionally intense. Through shared experiences of treatment they developed a sense of shared experience and empathy with other women/couples. They expressed this as ‘knowing how couples feel about not having babies’, ‘wanting to help somebody else get a baby’ and a general awareness of the degree of difficulty or ‘struggle’ involved in getting a baby when infertility is experienced.

The intensity of treatment was ascribed to the focus on conception and implantation. In IVF clinics embryos are created, handled very carefully and treated with great respect. As Deb explained: ‘Life in the making seemed so precious’. She continued:

We decided [to donate half to research and half to another couple] when [IVF] was all fresh and new and when we were watching other couples [in the clinic] going in and out and it [the embryo] was so precious. We were definitely going to do that [donate].

For participants in this study, embryos were visual evidence of conception and represented a very real possibility for pregnancy. The symbolism of the embryo to patients was most influential in their belief that they would donate them. A healthy embryo represented a heightened possibility for becoming pregnant and it was this experience that they sought to share with another couple through donation. None described having thought seriously about sharing an actual, biological child. It was apparent that their intentions were altruistic but their choice was at the level of an idealistic plan, i.e. a ‘nice thing to do’. It was not experienced as a truly serious decision with moral ramifications until much later. As Judith explained:

Originally I thought to myself if I didn't have them [for myself] I would donate them to somebody who desperately wanted a child. And I felt good about that whole thing until the time came when I had to make that decision and I found that [began weeping] ... I couldn't [donate them]. I never thought about that [someone else having my child] really. Not nearly enough about that.

When they had determined that they would not use the embryos themselves the decision was much harder than they imagined and fraught with moral ramifications.

The final decision:
Participants did not want to destroy their embryos but they now found the thought of donating their embryos unpalatable and this realization caused discomfort for them.

‘The worst decision I've had to make’
McMahon et al. (2000)Go noted that 70% of participants intended to delay their decision for as long as possible. Participants in this study described feeling ‘anguished’ and ‘agonizing’ over the decision. Many said they wished they could just keep the embryos in storage and never have to face the decision. Realizing they had changed their minds about donation, they faced the equally unpalatable alternative of destroying them. This was a very hard decision to come to and many participants described feeling ‘awful’ at the time and still feeling ‘bad’ about it. Distress was apparently due to conflicts in interests and/or moral values.

Conflict between wanting to help and donation
Several women and men talked about the physical, emotional and financial investment they had made in creating embryos and their sense of wasting something valuable. This is consistent with a previous finding that participants preferred to donate their embryos to research rather than waste them (McMahon et al., 2003Go). Several participants in this study used the word ‘selfish’ to describe their decision and all expressed a sense of regret at being unable to help another couple. For example, Sonia acknowledged that the world needed ‘other people who don't think like me to give infertile couples the opportunity to have children’. One couple talked about the wife's emotional reaction on completing the form to discard their embryos. She described posting the form and feeling ‘hit’ by it, i.e. becoming very upset. Anne-Marie's emotional reaction was due to conflicted thoughts. On the one hand she realized they had several options including using the embryos themselves. She described thinking about everything: ‘about other people that couldn't have babies and were we doing the right thing getting rid of it? Were we being selfish?’ The following excerpt from her narrative exemplifies the experience of other participants in this study.

Anne-Marie: I knew we weren't going to have any more babies but was that decision [to discard them] the right decision out of the options that we had? Like we could have kept it [and had FET] but that wasn't an option for us. But to actually say like I'm going to destroy this embryo that had taken so long to get there [come into existence], that is still a child to me? But the thing was to not donate. We couldn't donate it. I didn't feel I could donate it.

Conflicts of moral values within partnerships
One participant, Judith, was distressed. She wept as she described feeling caught between her husband's strong values against discarding (because of religious views and anti-abortion sentiment) and her own equally strong values against donating. Having reached this moral impasse she floundered emotionally, leaving the embryos stored for close to the 10 year time limit. Realizing this was a decision for which she wanted to take responsibility, Judith and her husband Ray sought counselling and eventually agreed they would discard the embryos.

Participants had all experienced a change of perspective between their initial intention to donate and their final decision to discard unused embryos. At the point of final decision-making, the decision to discard embryos rather than donate them was evidently driven by two factors: a change in their standpoint and a change in the symbolism of unused embryos.

Change of standpoint: becoming a parent
First, the standpoint of participants had changed. When they first considered the outcome for unused embryos the participants were situated as infertile and childless. Whilst the possibility for pregnancy seemed more reachable at embryo transfer, it remained an uncertain outcome. They therefore viewed embryo donation from this standpoint.

But having successfully completed their family they viewed embryo donation from the standpoint of parents. Caroline for instance spoke of the change in her thinking due to having had her daughter Katie—her deep love and pride in her, and her wish to protect her and any child like her. She said:

Until I had Katie I didn't think about those things. She's just a lovely, gentle ... such a wonderful child. I couldn't bear the thought that there's another child like that in a situation that's less than I would want it.

Deb spoke of her sense of having witnessed what beautiful children she and her husband could make. She said: ‘what if someone else gets these babies and they mistreat them or they're bad to them?’

Parenthood changed the status of the embryos and the way parents thought about them. Keith referred to the influence of becoming a parent on his thinking processes as being like a ‘change of universe’. When invited to explain this he emphasized:

Every decision you make from the moment you get up in the morning ’til the moment you go to sleep and usually the decisions you're making while you are asleep centre around your children, you know?

The symbolism of the embryo(s): virtual personhood
The situation of having potential human life outside the body and in cryostorage is unique. Participants found the unique status and relationship between themselves, their children and their embryos difficult to speak about because there is no language available that adequately portrays the experience or describes the relationship they clearly perceived. For the participants in this study, embryos were considered part of their family that existed yet simultaneously did not exist.

For instance, Martha described mentally greeting her embryos every time she drove past the clinic where they were stored. Steve said: ‘I used to go past it [the hospital] every day on the train and every day I'd look at the clinic and think ‘they're in there somewhere’. Kate wanted to keep their embryos indefinitely and described her embryos as being like ‘an extended family you don't see but have to pay for’.

Embryos were attributed a personhood that lacked physical presence but contained biology and spirituality. In this sense they acquired a virtual personhood.

Biological presence through genetic relatedness
The rhetorical construction of embryos as virtual persons and embryo donation as relinquishment emerged from knowledge of genetic relatedness and was metaphorically like giving a child away. For instance, Sonia who had twins from the same batch of embryos said: ‘Even though I'm not giving birth to it, it would be like a child I've adopted’ [relinquished]. In contrast, Gillian, who had two naturally conceived children, also said: ‘It [donation] was like adopting our two children out’. Personhood for cryo-stored embryos apparently emerged from ‘complete’ genetic relatedness. Several participants spoke about the embryos as ‘us’. Kate for instance had argued with her husband who wanted to donate embryos. ‘No’ she had said, ‘because that's me and you, that is us’. Trish echoed this when she said: ‘I just couldn't bear the thought [in considering donation] that it was ours. It had everything about us in it’.

Unlike sperm or oocytes, embryos were perceived to be full relatives. With oocyte donation Michael elaborated, the embryo would only be half theirs—half him and half a stranger. But their embryos were full relatives he believed because they were a mixture of both their genes in the same way their twins were. Michael continued ...

[with oocyte or sperm donation] you would get their [the donor's] looks and whatever. Whereas with ours [embryos] they would be the spitting image of them [points to twins playing on floor nearby] and like I said, they would be their full blood brother or sister.

The importance of recognizable appearance and characteristics was associated with genetic inheritance and ‘full-bloodedness’ and clearly influenced the perception that their embryo was one of their children, albeit virtual in existence.

Spitting images and the embryo–fetus–infant conceptual continuum
The notion of the embryo-child as a ‘spitting image’ of their parents or their siblings was common amongst those participants who had conceived embryos from the same batch. This was related to the timing of conception. Because the embryos were all conceived at the same time, participants believed that they would all have the same genetic make-up or mixture—rather like a batch of muffins would have the exact same ingredients. Participants used the words ‘twin sibling’ or ‘clone’ to illustrate their meaning. Many imagined their unused embryos as children that looked exactly like their existing children and contained the exact same characteristics and personality. Whether these children were conceived through IVF or spontaneously did not seem to matter. Rather the combined experiences of visualizing an embryo, then visualizing and becoming aware of a fetus and welcoming the newborn baby into the world, formed a potent conceptual continuum even if these experiences were related to different embryos and fetuses.

All but one of the participants in this study had had children from either successful IVF treatments and/or spontaneous pregnancy. They therefore described the experience of creating embryos, seeing them through the microscope, having a photo of them and sensing their presence inside their bodies during the tense waiting of the luteal phase. They linked this to seeing the fetus by ultrasound as early as 4 weeks gestation including its heartbeat, and of not only seeing the resulting infant but of getting to know their child(ren) intimately. Witnessing the continuum of human development from what several participants referred to as ‘potential life’ to ‘real, live children’ was powerful. As Rachael explained: ‘We've got a photo taken the day they [points to her twins] got implanted. So you look at it and you think ‘yeah, well there's Kylie and Jason sitting there’. Martha points out the impact of the visual: ‘They're real [the embryos], they're very real and not many people see their children at eight and ten cells’.

In participant narratives, donation came to be thought of as much more than the mere sharing of reproductive material and opportunity for pregnancy. Participants in this study constructed their embryos as full offspring and framed their narratives within a metaphor of relinquishment. This structure of their thinking and decision-making processes acted as a deterrent to donating the embryos because they were conceptualized as genetic or ‘full-blooded’ children.

When offered a hypothetical scenario that featured non-anonymous donation, none of the participants firmly believed they would have changed their mind had this been available.

The meaning of embryo donation
In Australia and other Western cultures, relinquishment of infants is unusual these days. Historically, relinquishment and adoption of infants was problematic and led to extensive legal reform in this country throughout the 1980s that resulted in open adoption. In the narratives of participants the following issues were raised. Though hypothetical and in some cases in lack of awareness of adoption reform, it was apparent from the following three rhetorical themes that participants considered embryo donation to be like relinquishment.

The best interests of genetic offspring
An outstanding concern for participants was the environment in which their embryos might be delivered and brought up. Several women were worried that their ‘children’ would be mistreated or abused, that they would be in an inappropriate family for their personality and/or intellect, that they may become ‘orphans’ through accidental death or that their recipient parents may have insufficient emotional or material resources to adequately provide for them.

Anonymity and secrecy of origins
Though anonymity and secrecy were broken down in Australian adoption reform, embryo donation and regulations such as the South Australian Reproductive Technology Act (1988) maintain anonymous gamete donation including embryo donation. This likeness to closed adoption bothered participants. Women and men alike voiced concern that they would be walking in a central part of the city in years to come and see a teenager that was the spitting image of their child and wonder whether it was theirs. Some women imagined looking in every pram for likenesses of their existing children or themselves. Several thought they would never experience closure because they would always be wondering about where the child is. Others were worried that they would answer the doorbell in 18 years to face an angry teenager demanding an explanation about why he was given away. One husband referred to himself as the ‘real’ father and was worried that if a child was unhappy in their recipient family they might choose to come and live with their ‘real’ family. Several participants worried that their children would meet and marry a full sibling. While this is also a concern for sperm and oocyte donors, these participants conceptualized this as a degree more incestuous—as if one twin were marrying another.

Legal reform and uncertain futures
Participants were uncertain that the conditions under which they would donate would remain static. For instance, Rachael expressed her concern that because offspring were full relatives they may be able to take inheritance from her ‘real’ children later.


    Discussion
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Acknowledgements
 References
 
Although participants in this qualitative study discarded their unused embryos, their preference was to donate embryos to another infertile couple. This finding is congruent with existing survey statistics indicating that the option of donating embryos is popular among patients pre-treatment (Laruelle and Englert, 1995Go; Bangsboll et al., 2004Go). However, like many other patients in previous studies, their final decision was different. It is important to note that the altruistic intentions of the participants remained strong but conflicted with other moral values about family and kinship. Having promised ‘in their hearts’ to help another couple, they found the realization that they could not follow through with this difficult and still regrettable 18 months later.

IVF couples have previously been noted to act generously out of a sense of solidarity with other couples (Laruelle and Englert, 1995Go) and/or reciprocity towards the IVF clinic (McMahon et al., 2000Go). In this study another important factor emerged. Evidently the culture of the IVF clinic and its primary focus upon embryo creation, observation and protection are highly influential. Nevertheless, the altruistic values of the well-meaning participants were ‘trumped’ by values concerning relinquishment of genetic offspring.

At both decision-points, the symbolism of embryos was influential. Before becoming parents, embryos symbolized a successful endpoint of ovarian stimulation and an opportunity for pregnancy. But after conceptualizing the developmental continuum of embryo–live child, their embryos came to symbolize ‘virtual’ children. Within this perspective they metaphorically associated embryo donation with relinquishment of a child and their moral reasoning led to a decision to discard.

The narratives of participants in this study bear remarkable similarity to the experiences and attitudes of IVF mothers described by McMahon et al., (2000)Go and further elaborates them. The decision to donate or discard unused embryos was troubled for participants in this study just as it was difficult for participants in Svanberg et al.'s (2001)Go study and a source of moral dilemma for IVF mothers (McMahon et al., 2000Go).

This study demonstrates that becoming a parent is an important and complex factor. The role of parenthood has been noted as being pivotal in previous studies and has been interpreted as being related to bonding (Laruelle and Englert, 1995Go). In this study it was apparent that this interpretation holds merit but is incomplete. Participants described becoming a parent as a life-altering experience that went beyond attachment and individual feelings for their children to include existential transformation of thinking and conduct. Embedded in this identity transformation, the symbolism of the embryos and the meaning of embryo donation altered so that embryo donation came to be metaphorically like relinquishing an existing child.

The presence of a real, live child has been noted to be influential in previous studies and interpreted to be related to the relationship between the embryos as arising from the same batch (McMahon et al., 2000Go, 2003Go; Elford et al., 2004Go). However, the findings of this study indicate a broader complexity of the ways in which the presence of children is related and demonstrates that this relationship is not solely due to the embryos being from the same batch. Rather, the lived experience of IVF, the visualization of an embryo and the transformative experience of becoming a parent all synchronize conceptually to change the standpoint of the decision-maker, whether IVF has been successful for them or not.

Ethical debates about the moral status of the embryo hinge upon a discursive binary that a human embryo is either equivalent to human tissue or holds ‘potential’ personhood (Robertson, 1994Go). But definitions such as this are embedded in cultural beliefs and values. The findings of this study indicate that because of their genetic relatedness to a couple and to siblings, the status of the embryo needs to be defined within discourses of family relationships.

In this study, participants spoke of their embryos as if they were existing children for whose welfare they were responsible. This is consistent with other studies where participants spoke of their embryo as if it were ‘another of their children’ (McMahon et al., 2000Go). But paradoxically participants in this study did not consider their embryos to be a child ‘already’ as Laruelle and Englert previously found. The dominant concept of genetic connectedness or full-bloodedness was related to a conceptual process, as an embryo was observed at 2–4 cells and then translated conceptually to the existence of a real, live child. Cooper (1996)Go suggested that intentions to donate embryos were choices made ‘in the abstract’. The findings of this study in relation to the participants' initial decision supports her view that when couples have ‘real, living examples of what an embryo can become’ the dynamics of the decision are very different.

Underpinning the construction of a meaningful relationship with an unused embryo is public or commonsense understanding of ‘spitting images’ and genetic likenesses as evidence of family relatedness or full-bloodedness. Cultural importance is attributed to complete genetic connectedness between parents and their children (Kirkman, 2004Go). This may explain why less anxiety was apparent in a previous study around decisions to donate embryos composed themselves of donated oocytes or sperm (Saunders et al., 1995Go).

A major finding of this qualitative study was the way in which embryo donation was likened to child relinquishment. This has evidently also struck other researchers (Van Voorhis et al., 1999Go; Soderstrom-Antitila et al., 2001Go; Kahn, 2002Go; Widdows and MacCallum, 2002Go) who have variously addressed the question of whether embryo donation should be characterized as adoption or tissue donation. Moreover, an apparent inconsistency in the decision-making of participants has been observed in a previous study. Laruelle and Englert (1995)Go noted with surprise that many of the couples who equated the embryos with a child accepted destruction. They warned that a couple's assertion that the embryo is a child ‘must be considered with caution’ (p. 1050). But there is indication in the findings of this study that this is indeed a reliable finding.

Metaphors are used in language to convey commonsense understandings in a way that familiarizes them and thereby normalizes them. But metaphors are also rhetorical strategies that serve a purpose (Fairclough, 1992Go).

The fluidity of a virtual personhood attributed to an embryo allowed the participants to construct themselves as good parents and their unused embryos as children ‘out there somewhere’ for whose welfare they were concerned. Simultaneously it allowed them to construct the embryos as not-yet-fully-constituted persons, making their destruction morally tolerable. The fluidity of this virtual personhood hinged upon the conceptualization and definition of ‘potential’ personhood. The potential nature of this personhood made possible the seeming paradox of considering an embryo to be a child and also ordering its destruction as if it were human tissue.

Reliability and verification of this study
The sample size for this study was small and may have been homogeneous—that is, composed of participants with particular characteristics (for instance they may collectively be less at ease with their decision or alternatively more emotionally resolved). Due to the constraints of the database, funding and privacy legislation, beyond the treatment demographics made available to determine purposive sampling categories, it was not possible to compare general demographic data of patients who did not participate with those that did. Nevertheless the participants described remarkably similar sentiments and issues to those participants whose comments were reported in quantitative studies that featured large purposive samples (Laruelle and Englert, 1995Go; McMahon et al., 2000Go, 2003Go; Soderstrom-Antitila et al., 2001Go). In addition within this group of participants, data saturation was reached. This increases the reliability of the findings.

The approach taken to recruitment in this study was one of invitation but not vigorous pursuit of participants. Qualitative interviewing invites disclosure of personal feelings and emotional ‘revisiting’ of experiences. There was indication in follow-up recruitment and data collection that the topic of unused embryos was a sensitive one. One woman declined an interview, saying ‘my life is not a video’. Another woman who agreed to be interviewed after telephone contact explained how initially she had not responded because the subject matter was ‘still raw’ for her. A number of participants wept while telling stories of indecision and final decision-making. Perhaps for those couples who did not respond, the topic of embryo destruction was too painful. It is notable that a higher number of patients was unable to be recruited from within the group whose treatment was unsuccessful. This is an important limitation to be addressed in the rigor of this study.

Donation of embryos by couples who remained childless has been reported in existing research (Lornage et al., 1995Go). However, it has also been suggested that childless couples may not be able to live with the possibility of their genetic child being raised elsewhere (Elford et al., 2004Go). Only one childless couple were able to be recruited in this study. This couple had discontinued treatment at least temporarily. Their infertility was unexplained and the woman was only 29 years old. They had therefore decided to continue trying to become pregnant naturally. Their decision to discard a single embryo was based in their belief that it was of poor quality and was therefore not worth the stresses of FET—a phenomenon noted previously (Laruelle and Englert, 1995Go; Svanberg et al., 2001Go). Their change of mind about embryo donation was due to reluctance to risk another couple having ‘their’ (genetic) child while they remained childless—an indication that genetic connectedness is also an important factor for participants who are not parents.

It is also apparent that a small but steady percentage of patients donate their embryos to another couple.

For the purposes of verification and reliability, this study is continuing with the pursuit of purposive samples of non-parents who discarded unused embryos, patients who chose to donate their unused embryos to another couple and patients who chose to donate embryos to research. According to the findings of this study, the categories of parent and non-parent are important to attend to in recruitment. This ongoing process of inquiry is consistent with verification procedures that ensure reliability and validity of the study (Morse et al., 2002Go). Whilst theories of patients' decision-making are still developing, the findings of this study raise some important issues for clinical practice and give substance to the findings of previous studies.

Clinical implications
It is important to note the role of moral reasoning, moral dilemma, moral conflict and culturally embedded beliefs and values in decisions about unused embryos.

Advance directives and consent for disposition prior to cryopreservation are promoted by some as a solution to loss of contact with patients and mass destruction of embryos (Dickey and Krentel, 1996Go). But apparently advance directives may not reflect final decision-making. Therefore advance directives should be considered a tool for stimulating patient reflection on the consequences of cryopreservation rather than as a reliable and legal consent process.

It has been suggested that counselling would be helpful to couples in deciding an outcome for their unused embryos (Klock et al., 2001Go). Though the participants in this study described their decision as difficult, as in McMahon et al.'s (2003)Go study the majority had not sought the services of a counsellor in making their decision. Even though these services are freely available, many patients live in rural areas of Australia so that distance and associated costs may prohibit access. With the exception of Judith, the difficulty of the decision was not primarily due to partnership conflict or emotional distress (though these were also present) so much as it was related to the dilemma of selecting one option from a range where none was suitable. This was a factor also noted by McMahon et al. (2000). Guidelines for counselling practice in embryo donation (American Society for Reproductive Medicine, 2002Go) are largely focused on the post-decision period but recommend a discussion of embryo disposition options prior to cryopreservation and an evaluation when reproductive attempts are concluded. Such practice is ideal but difficult to apply in a busy clinic with limited counselling resources. The findings of this study suggest that at the very least, patients should be prepared to experience a change in their intentions if they become parents. Moreover, counselling practice in Australia and elsewhere has been dominated by social concerns for the welfare of children that have emerged from harmful relinquishment practices of adoption in the past. Counsellors must walk a fine line between social policy that dictates conditions of anonymity for embryo donation and thereby emulate the secret relinquishment of an unwanted child of the past, and helping an individual couple to decide what is best for them and their family in a social context where openness about genetic relatedness is increasingly important.

Given the historical potency of practices of relinquishment, it seems unlikely that the numbers of patients who select embryo donation can be increased unless embryo donation can be metaphorically ‘re-framed’. One means of doing this is by adopting practices of openness either through known embryo donation or by introduction of donors and recipients. This would mirror adoption reforms and current openness in relinquishment.

But discursively, embryo donation sits somewhere between adoption and tissue donation. There is a need for further research to explore the cultural meaning of relinquishing/donating an embryo for gestation within a social context where genetic relationship is a dominant discourse. With increased understanding, debate and legal reform, effective counselling practices can be developed that are congruent with this unique practice.


    Acknowledgements
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Acknowledgements
 References
 
The author wishes to acknowledge the advice and support of Professor R. J. Norman.


    References
 Top
 Abstract
 Introduction
 Materials and methods
 Results
 Discussion
 Acknowledgements
 References
 
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Submitted on November 29, 2004; resubmitted on February 1, 2005; accepted on February 10, 2005.





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