Building extended families through embryo donation: the experiences of donors and recipients Free

Abstract

STUDY QUESTION

How do embryo donors and recipients understand and experience embryo donation (ED)?

SUMMARY ANSWER

Donors and recipients regard the genetic link between donors and donor-conceived child as significant, and draw on metaphors of ED as adoption and as building extended family networks in order to manage the complex interplay of genetic, gestational and social aspects of reproduction and family-building.

WHAT IS KNOWN ALREADY

The uptake of embryo donation internationally is relatively low and there has been little research into the outcomes and experiences of ED for donor and recipient families.

STUDY DESIGN, SIZE, DURATION

Embryo donors and recipients in New Zealand were interviewed between March and October 2012 as to their understandings and experiences of embryo donation.

PARTICIPANTS/MATERIALS, SETTING, METHODS

Participants were recruited from across New Zealand and interviews were conducted with 22 donors (10 couples, 2 individuals) and 15 recipients (5 couples, 5 individuals). Interview data were analysed thematically to identify factors that influenced their perspectives and affected their experiences.

MAIN RESULTS AND THE ROLE OF CHANCE

The genetic link between donors and offspring is regarded as bestowing immutable social ties by both donors and recipients. This makes ED a difficult choice for both donors, who experience a sense of ongoing responsibility for offspring welfare, and for recipients, who may have concerns about the donor-offspring bond. Disclosure of genetic background is regarded as critical for the welfare of both the donor-conceived child as well as siblings in the donor family. Both donors and recipients draw parallels between ED and open adoption practices, and draw on extended family constructs in order to describe their relationship to each other.

LIMITATIONS, REASONS FOR CAUTION

Donors and recipients were interviewed at various stages of the ED process, and experiences may change over time.

WIDER IMPLICATIONS OF THE FINDINGS

The comparison of ED with open adoption practice and the metaphor of extended family-building both help make sense of and complicate the ED experience. These concepts help to structure expectations for the assessment for ED, the disclosure of donor conception, and the nature of relationships, information-exchange and contact.

STUDY FUNDING/COMPETING INTEREST(S)

This study was funded by an AUT University Faculty of Health Environmental Sciences research grant.

Introduction

While embryo donation (ED) was first reported in 1983 (Trounsen et al., 1983), it remains a contentious practice. It has been described as offering a solution for those with the ‘problem’ of surplus embryos, providing them with an opportunity for their embryos to be used and thus valued, helping others who have similarly experienced difficulties with infertility, and expressing reciprocity towards the clinic that assisted them in having children (de Lacey, 2005, 2007b; Lyerly et al., 2010). For recipients, ED offers a chance of having a child with the advantages of experiencing pregnancy, childbirth and the parenting of a young child, and without the disadvantages of going through IVF and its associated expense and physical intrusion (Blyth et al., 2011; Keenan et al., 2012). Indeed, ED has been described as ‘technically straight-forward’ (Janssens, 2009, p. 502), as ‘very successful’ and ‘cost effective’ (Hill and Freeman, 2011, p. 942) and as less risky, less expensive, and possibly offering better chances of pregnancy than other options, particularly for those with ‘untreatable’ fertility issues, recurrent pregnancy loss or hereditary disorders, and for older women whose oocytes may not be viable (Anderson, 2006).

However, despite these positive portrayals of ED, some countries, such as Denmark, Brazil, Japan, Israel, Norway, Sweden, Switzerland, Turkey and Taiwan, restrict or prohibit practices such as ED (Urman and Yakin, 2010; Blyth et al., 2011; Frith et al., 2011; Takahashi et al., 2012). While ED is possible (under varying conditions) in Australia, Austria, Canada, the UK, Finland, France, Germany, Italy, New Zealand, Spain and the USA (Wanggren et al., 2013; Benagiano et al., 2015; Herzig, 2015; Netzwerk Embryonenspende, 2015), ED practices across jurisdictions also vary substantially, ranging from anonymous donation, which has historically been the most common form of donation, and is permitted in Denmark, Greece, Portugal, Bulgaria, Spain, South Africa, the Czech Republic and India (Garcia-Ruiz and Guerra-Diaz, 2012), to varying degrees of open donation. Canada, the UK (since 2005), Sweden, Norway, the Netherlands, New Zealand and some states in Australia allow donation in the context of registration of donor identity and access by donor-conceived children to their genetic information (Hammarberg et al., 2011; Garcia-Ruiz and Guerra-Diaz, 2012).

Further, while the prevalence of ED is difficult to ascertain, given that in some regions it proceeds anonymously and may not be rigorously reported, the number of individuals pursuing ED as an option either as donors and recipients generally appears low (Blyth et al., 2011). Many researchers have reported that patients may often indicate a willingness to donate their embryos as an initial preferred disposal option, with interest in this option ranging from 2 to 52% (Newton et al., 2003, 2007; Bangsbøll et al., 2004; Cattoli et al., 2004; Hammarberg and Tinney, 2006; Mohler-Kuo et al., 2009; Lanzendorf et al., 2010; Lyerly et al., 2010; Nachtigall et al., 2010; Hill and Freeman, 2011). However, it appears that ED remains more often contemplated than performed, with fewer than 10% ultimately going on to donate to others (de Lacey, 2005, 2007b; Blyth et al., 2011; Frith et al., 2011). Research has tended to focus on the decision-making of potential donors, rather than recipients, and there have been assertions that clinics are receiving ‘a large number of requests’ (Hurwitz et al., 2005, S235) and that there is a ‘substantial shortage of embryos available’ (Hammarberg et al., 2011, p. 180), but this does not necessarily appear to be the case with several researchers citing lower than anticipated interest from potential recipients. Low demand may partly be as a result of the desire of couples to use their own gametes, and because ED tends to be recommended only when both members of the couple are infertile or when previous IVF attempts using the couples' own gametes have failed (MacCallum, 2009; Richards et al., 2012). In New Zealand, the uptake of ED has been relatively low, with 55 applications processed by the Ethics Committee for Assisted Reproductive Technologies (ECART) between 2006 and mid-2012 (ECART, 2012).

ED has also been described less positively, with concerns expressed about the longer-term, unknown implications of the practice. Janssens (2009), for example, comments that there is ‘still much to be learned’ (p. 502); Eydoux et al. (2004) note that ‘too many questions remain unsolved’ (p. 1685), and Melamed et al. (2009) state that the ‘future societal consequences are not well understood’ (p. 189). ED has been described as one of the more complex and contentious forms of collaborative reproduction, raising significant psychological, ethical, moral and legal dilemmas (Applegarth, 2006; Blyth et al., 2011; American Society for Reproductive Medicine, 2013). Guichon et al. (2010) go as far as asserting that ED in Canada constitutes an ‘experiment’ on the health and well-being of children, and ‘there is no one to stop it, or at least, to slow it down by asking difficult questions’ (p. 1).

Indeed, there is little systematic evidence available regarding the outcomes of ED (MacCallum et al., 2007; Blyth et al., 2011; Frith et al., 2011). This stems partly from a lack of accurate recording and an inability to engage in follow-up studies, as well as the range of ways in which ED is practised and the novelty of the practice. Only a handful of studies have explored outcomes of ED and the development of families formed through ED (e.g. Söderström-Anttila et al., 2001; MacCallum and Golombok, 2007; MacCallum et al., 2007; MacCallum and Keeley, 2008, 2012; Paul et al., 2010; Frith et al., 2011). In MacCallum et al.'s (2007) study of 21 ED families, the children (aged between 2 and 5 years) were reported to be doing well, although parents tended towards higher emotional involvement and more defensive responses than adoptive parents. MacCallum and Keeley's (2008, 2012) follow-up studies of the children in middle childhood supported these findings. These studies were conducted in the context of anonymity however, and most parents had not or were not planning to disclose to their children, and thus, as the authors acknowledge, the longer-term implications may yet be uncertain.

In New Zealand, ED has been available since 2005 only (Advisory Committee on Assisted Reproductive Technology [ACART], 2008). The practice is regulated under the Human Assisted Reproductive Technology Act 2004 (hereafter referred to as HART Act); it must follow specific guidelines set by the Advisory Committee for Assisted Reproductive Technology (ACART) and must be approved on a case-by-case basis through application to ECART. Guidelines for ED include that the embryos must have been formed from the donor couples' own gametes, that they must be ‘surplus’ to requirements and remain after couples have completed their families, and that they may be used to create full genetic siblings in no more than two families. Guidelines also stipulate donor identity registration and recommend disclosure, so that donor-conceived offspring may have access to their genetic background.

Further, the New Zealand policy is unique in that counselling, in both separate and joint sessions (where donors and recipients and their families meet), is mandatory, and involves full implications counselling. In effect donor and recipient couples thus select each other for ED. Counselling considers both current and future issues that may arise for the donor-conceived children, and the donor and recipient families. Information-sharing and communication is encouraged between donor and recipient families, similar to the practice of open adoption that occurs in New Zealand (Lovelock, 2010), and is negotiated in the joint counselling sessions. No research to date has explored the experiences of those undertaking ED in this unique context. Further, in November 2014, the 10-year storage limit imposed for cryopreserved sperm, oocytes and embryos under the HART Act came into effect, thereby compelling decision-making for those with embryos approaching their storage deadline. With this deadline in mind, ACART has been in the process of reviewing ED guidelines.

In this paper, we report on the findings from the first study on ED in New Zealand, and highlight the major issues experienced by donors and recipients. The findings offer insights for those contemplating ED, and have implications for both New Zealand and international policy and practice.

Materials and Methods

Method

Data collection for this study occurred through in-depth interviews which were conducted with both embryo donors and recipients and addressed questions related to their understandings and experiences of embryo donation.

Recruitment

Recruitment occurred between March and October, 2012. Participant Information Sheets were sent by clinic staff from public and private fertility centres across New Zealand to patients who had experienced ED. The Information Sheets offered patients the opportunity to make direct contact with the researcher, and an accompanying letter made it clear that participation was voluntary, and that clinic staff would not have access to the information as to who had participated in the study. It is important to note that since all potential participants had completed the ED process and counselling, most were no longer patients of the clinics.

While both members of the donating couple (and where relevant) both members of the recipient couple were invited to participate, the choice of whether to participate as an individual or as couples was left up to the participants, and where both members of a couple wished to participate, they could choose whether to be interviewed separately or together. All participants had to give signed consent prior to the interview, with consent forms stipulating that participants had the right to withdraw consent at any time prior to and during the interview. The participants also had the rights to review the transcripts generated from the interview, to withdraw parts of the transcript or the transcript in its entirety, and to suggest amendments and additions. The identity of participants was protected by the use of pseudonyms and by the removal or disguise of potentially identifying information in the transcripts.

Particularly given the relatively low number of applications for ED in New Zealand, recruitment was very successful. There were 22 donors (10 couples, 2 individuals) who participated in the study, including 12 (6 couples) who had ‘successfully’ donated, i.e. their ED had resulted in births (7 children). There were also 15 recipients (5 couples, 5 individuals) who participated in the study. Of these, eight (three couples, two individuals) had had children through ED (seven children at the close of data collection and a further two born afterwards). Of the five individual participants, two were single women.

Data analysis

Interview data were transcribed, and analysed inductively following the rigorous interpretive thematic analytical method outlined by Braun and Clarke (2006). Interview data were first transcribed, and then each interview was read and re-read actively, with particular attention paid to and notes made of patterns and meanings of data. Following this familiarization with the data, the primary researcher then systematically generated initial codes across the entire data set, organizing the data into meaningful groups and manually highlighting and collating relevant data extracts. Once all of the data had been coded and excerpts collated, the third stage involved the sorting of these different codes into wider categories or themes by analysing the different codes and their relationships: commonalities and differences. In the fourth stage, and in consultation with the research team involved in this study, the themes identified were reviewed and refined with reference to the data, and their coherence and inter-relationships were considered. Next, names were assigned to the themes, discussed with supervisors, further refined and finally defined, resulting in the identification of three major themes (Braun and Clarke, 2006; Willig, 2013). These themes and the authors' interpretations are presented below along with supportive illustrations.

Ethical approval

Ethical approval for this study was granted by the Ministry of Health Regional Ethics Committee (dated: February 2012, Number CEN/11/12/07/071AM02).

Results

The significance of genetics

The genetic make-up of the donor-conceived child was considered important by donors and recipients in two ways. Firstly, the genetic link between the donors and donor-conceived offspring was regarded by both donor and recipients as bestowing immutable social connections and ties that all parties needed to be aware of. Secondly, genetic make-up was regarded as bestowing particular medical and/or psychosocial characteristics and conditions, i.e. most donors and recipients believed that genetics had some role to play in term of the child's development. For both these reasons, donors and recipients emphasized the rights and needs of donor offspring to have access to their genetic knowledge. This was seen as critical for physical as well as psychological well-being and to enable the offspring to establish a healthy sense of identity.

For donors, the investment in genetic ties implied that they continued to feel a sense of attachment to the donor offspring. Lance described this as, ‘It's not our chid. Sort of. Still feel a connection though’. Jonathan spoke of the struggle he had had in meeting the donor-conceived child for the first time, saying, ‘You can't dwell on, “this is your baby” really… but when you are holding the baby, it's a bit different.’

While donors reiterated that the donor-conceived child was not their child, and that they assumed no legal parenting rights, many regarded the child as still ‘sort of’ theirs, as part of their wider family, and as siblings to their existing children. Roy described the donor child as ‘still part of me’, and Grace commented that:

People say, ‘How many kids have you got?’ Well (my husband) will always say 3, and then you have to explain. Jack: And I say, ‘We've got 2 here, and 1 in (area) that's ours, or, sort of ours.

As a result, most donors in this study reported a sense of ongoing moral responsibility towards and interest in the child and in his or her well-being, as is evidenced below:

Grace: As much as we have no say in what happens with that child's life, we still have an interest, and we want to make sure that they are doing…that B is being well looked after, and stuff like that.

Within this context, many donors thus expressed a desire to be able to select suitable recipients that would make ‘good’ parents for what they regarded as still, in some way, their family members who would fit best within their family. Jonathan for example, commented that recipients needed to be people ‘you would like to have bring up your children’. Donors therefore expressed an interest in choosing recipients that would be ‘the most like us’ (Roy); ‘mimicked what we are like’ (Stephen); and were ‘as close to yourselves as you can: socially, economically, morally, everything really’ (Grace). Grace explained this as ‘wanting somebody who's going to raise your children in a way you would want them raised.’ Jack similarly said, ‘We wanted to choose us, because we would be the best people to bring up our children. They (recipients) were the nearest we could find to us.’

Furthermore, because of this belief that genetic connections are important and that genetic knowledge is central to well-being, donors in this study would not have donated under anonymous conditions and supported open identity donation. They were committed to donor offspring being made aware of their genetic background and having access to information about the donor family. This is evident in the comments below:

Mandy: I started doing a scrapbook telling the story, because obviously that baby might eventually come back and say, ‘Why did you give me away? What was that about?’ We had to be able to tell the whole story.

Grace: It's a proven fact that open adoption, where the kids know where they've come from, are much better accepting. They don't have that searching, ‘Who am I?’ identity, and so that's why we are prepared to be in B's life, so B will know. It will never be, ‘Let's meet these parents who we were created from.’ We have always been there. B's seen us, and will continue to see us.

Janet: It's the respectful or decent thing to do.

For many donors, this extended beyond the offspring having information about them, to include a degree of information-exchange between the donor and recipient families and opportunity for ongoing contact. Brian, for example, commented that:

We wanted to have contact with that child as it grew up, and we wanted that child to have contact with us as it grew up. We sort of envisaged that maybe once a month, we'd go over and see (the child) or (the child would) come and see us.

Similarly, Stephen wanted ‘contact every now and then… maybe 2 or 3 times a year, so we can keep in touch’, Nathan, ‘along those lines of birthdays, Christmas, those festival things’; and Mandy, ‘maybe for the kids' birthdays, maybe Christmas, special get-togethers.’

The contact was constructed as social and as non-intrusive, with appropriate respect for boundaries. For example, Lance said that ‘We never wanted to live in anyone's pockets’, and Jonathon that ‘We wanted to play a part in the baby's life, but not be overbearing or a nuisance.’ Donors were clear that recipients needed to occupy the position of the ‘real parents’. Rachel said that ‘We are not going to tell them how to bring X up’; Karen that ‘We didn't want her to have to second guess everything with us’; and Nathan that ‘It's their world and their family and we don't dictate in any form.’ Donors had given a great deal of thought as to the effect of their involvement as donors, both on the recipients and the donor-conceived child. Janet, for example, commented, ‘You don't want to confuse the child either. I mean the child needs to have a secure happy upbringing.’ Jack, discussing the recipients' use of a password protected blog explained:

They've got a website that they upload photos to, so whenever we feel like it, we can go and look. It's a really good tool to have, because you are not in their pockets, and you can look at it when you feel like looking at it. They can put up what they feel comfortable putting up, so we are not looking into areas of their life they don't want us to see.

Donors were thus aware of the challenges associated with seeing genetic connections as important and as bestowing ongoing social ties, the challenges such as their role in the child's life, and the need for the child to attach to the recipients. Donating in this context however, made ED a difficult decision for most donors in this study. While donors had been able to move past the challenge and proceed with donation, Frances described the donation as ‘heart-wrenching’, Janet as ‘such a hard thing to do’, and for Brenda, where the donation had not resulted in a child, she admitted that:

It was the saddest, saddest thing, but in my own heart, I was also so relieved. I kind of felt it was really selfish, but we would have a biological child out there… that is our own being brought up by someone else.

Recipients too regarded genetic make-up as important, and saw the genetic connection between donors and offspring as carrying with it ongoing social ties. Many recipients had initially experienced grief at the thought of not being able to share genetic ties with their prospective children, and had tried to have genetically related children prior to pursuing ED. As Deborah said, ‘Clearly, if you can have a child genetically, or that's half of you, that's what we will do.’ Some recipients spoke of needing to process the fact that the child would have no genetic relationship to them. Beth for example, recalls her ambivalence and concerns during the pregnancy:

When I did get pregnant, I suddenly had a whole lot of different thoughts. I thought, ‘Oh my God, I've got this life growing inside me that has absolutely no genetic connection at all.’ That took me a wee bit to get my head around… the other stuff (donor sperm), it was still going to be partly me. This child would be genetically nothing to do with me at all. I felt a bit like an incubator, and I didn't really know how I felt about that. So that was part of the thing where I said, ‘What have I done, what have I done?’

Olivia spoke of the need to work through her grief at not having a genetically-linked child, and her realization that, ‘It's OK to grieve for not having a biological (link). It doesn't mean I love them any less.’ While the lack of genetic connection was certainly not insurmountable, for some recipients the absence of a genetic connection and perceived need to acknowledge the donors was initially somewhat challenging, and a potential threat to their parenting role and authority. Kieran commented:

Yes, it's challenging, absolutely, and a lot of people just want their child, they want it to be just theirs, but you have to start off and say ‘Well, this is the way it is’.

And Zelda said:

I thought, ‘I'm going to get a child. It's going to be my child - end of story.’ And then all of a sudden it was, but that's not the way it is, of course it's not.

Recipients clearly perceived parenting through ED as necessitating the inclusion of the donors in some way, or even, as Kieran described it, as ‘sharing it (the experience) with somebody.’ For many recipients, ED was something they were offered, and attempted, as a ‘last option’ to have children. For some there was a degree of ambivalence about attempting ED, a sense of feeling compelled to try this as an option in spite of some misgiving. Beth reflected that,

I actually got a hell of a shock when I got a call from the clinic, and the first thing I thought was, ‘Oh, do I want to go through all that again?’ when I had put it behind me. There's always one more thing, and I didn't know if it was a good thing or a bad thing that there was one more thing because I had decided that that was it, over.

For these recipients, there was a mixture of grief, but also relief, when the ED had not been successful. Most recipients however, were able to process their feelings and concerns about parenting in this non-traditional manner. They achieved this by, for example, attempting to find out as much as possible about the donors: their characteristics, their existing children, and any medical conditions, so that they would be best prepared to parent the child born through ED. Michael spoke of how he had wanted to meet the donors' children to see ‘what we were going to get.’ Zelda spoke of how:

You give up something when you have a donor. You lose your genes, and you have someone else's genetic material, so in order to wrest back some of that control, you kind of want to know everything. You don't want unknown things! You want to know. So it was like, ‘What are they going to look like? What are they going to be like?’ all that sort of thing.

Most recipients also emphasized their role as gestational parents, highlighting the role of gestation in potentially influencing the development of the child, and thus his or her characteristics. The ability to experience pregnancy and nurture the new-born child was given great value in terms of promoting attachment between the parents and child. Wendy described it as ‘making the child part of our family’, and Kieran said, ‘(My wife) is going to be the birth mother, so in that sense and in every other sense that matters, she's mum, that's it.’

Nonetheless, recipients recognized that their child had genetic connections to another family that they believed were important to consider. For them then, the question became how best to parent a child given his/her unique background of having ongoing ties to another family. As for the donors, recipients believed that this involved open donation, and disclosure of the donor conception to the child from an early age. This is reflected in the following comments:

Jenna: Our main focus will be the welfare of our child, and both of us feel that keeping secrets and not knowing where they have come from is detrimental… (That's) not what we want for our child. They need to know to have a good quality of life, and have an understanding of who they are… And at some point it will come out; be it in ten years down the line, be it 50 years.

Kieran: Just from a point of who you are, your own personal identity, that can be absolutely devastating to some people. It unravels the true fabric of who you are. You couldn't do that to a child. By denying someone a part of their life; an opportunity to explore their life, and for me that's lying by omission. I think morally it's wrong. There's an overwhelming sense of betrayal.

Both donors and recipients made sense of and managed the significance of these genetic connections and the perceived need for openness and disclosure by drawing on an adoption metaphor, as discussed in the next section.

Embryo donation as embryo adoption

Many donors and recipients saw ED as quite different from gamete donation. Brenda (a donor), for example, commented that, ‘When you have egg or sperm donation, it's half of them, belonging to them. But with embryo, like adoption, it's completely not theirs.’ Wendy (a recipient) describes how ED should not be confused with gamete donation because in ED ‘the child will have fully-fledged, full genetic siblings, and that we might have an ongoing relationship with that family.’

Instead, donors and recipients drew strong parallels between adoption and ED, describing it as ‘no different from a normal adoption’ (Brenda, donor), ‘two or three steps off adoption’ (Isla, donor) or even directly as adoption, as is evident below:

Neil (recipient): While everyone calls it embryo donation, we call it embryo adoption. We've adopted a little life, or about to.

Tanya (recipient): We'd be growing it. Just a very small baby, an early adoption.

Deborah (recipient): Grow your own adoption!

The adoption metaphor was useful in that for many donors and recipients it provided a familiar model for family-building that they could relate to, and several made reference to their familiarity with open adoption practices in New Zealand as well as the consequences of New Zealand's previously closed adoption system. However, while the metaphor provided a helpful framework from which to make sense of ED as a family building mechanism, it also made transparent some of the longer-term implications of donation: of having a genetically related child separated from and raised in another family. This created some anxiety for donors, as the metaphor reinforced their construct of the embryo as future child, and they became concerned about the perceived discrepancies between donation and adoption practice. For example, donors expressed concern about the lack of formal assessment of recipients' suitability to parent in ED. Brian said:

We thought home studies would have been done. We just can't believe that a home study is not done for embryo donation. It's not a sperm or an egg—This is a human life that we have already created. … You just simply can't be entrusted with another person's child, albeit at embryo stage, unless you pass criteria.

Further, because ED offers the ability to conceal the genetic background of the child, several donors worried that the donor-conceived children would be able access information about their genetic background and the donors only if the recipients choose to disclose and permitted information-exchange. Jack expressed his concern as follows:

At the end of the day it doesn't mean squat does it? Because if (our recipients) move to Timbuktu, we can't do a damn thing about it.

Since adoption is more difficult to conceal, donors believed that adopted children would have greater ability to access information, and this further discrepancy was a source of concern. On the other hand, donors also regarded ED as potentially easier from an emotional perspective, as unlike adoption, ED did not involve the relinquishment of a child that the donors had gestated, given birth to, and formed an attachment to.

Recipients likewise drew parallels between ED and adoption, but for them, as expressed by Tim, it was an ‘adoption with benefits.’ He went on to explain:

It seemed to be full of pros and no cons. We still got to experience the pregnancy, being able to go through a birth like any other normal couple….

Deborah and Maggie expanded these points:

Deborah: You've had that chance to bond and grow with him, and you know exactly what you've put into your body to produce this baby.

Maggie: Physically everything that went into that child to grow its brain, to grow its fingernails, its skin, was going to come from me. So that was my child.

ED thus offered recipients the opportunity to experience pregnancy, birth, and the parenting of a young child. They could shape the development of the child from an early age, attachment and bonding could likewise begin early, and they could appear more ‘like any other normal couple’ (Tim). Further, by being the birth parents, their legal status as parents was reinforced. As is implied in Maggie's quote above, this led to a sense that recipients experienced themselves as ‘more the parent’ than was their sense with adoption.

ED as building an extended family

Both donors and recipients worked to define what it meant to engage in ED, and how the two families would relate to each other. Interestingly, both donors and recipients referred to each other by using extended family constructs. Donors were frequently described in terms such as aunts, uncles, god parents and in-laws. In other words, they described each other and positioned each other as extended family members. Donors such as Pamela, for example, explained that, ‘We don't want to be Z's parents. We want to be Uncle and Aunty that can watch Z grow.’ Lance described their role as ‘godparents….in the background’, and Roy described it as ‘a marriage of a family. Yeah, to me it's more like your in-laws’ (with whom you ideally have a good relationship, as just like with in-laws, ‘If you don't like them, then you need to be very aware that that's going to be a problem, and it isn't going to go away.’)

Recipients' comments revealed similar constructs. Tim, for example, explained that:

When we talk to others, we talk about our donor family…. X will always know that X has these genetic relations, and that X has kind of got two families I guess. But we are X's family, and these people are people that are there if X wants to get to know them, and we are friends…. Actually, we call them family.

The relationship was clearly one that donors and recipients envisaged to be an ongoing, permanent one, with comments such as ‘It's for the rest of our lives’ (Janet, donor), and ‘it's a lifelong commitment’ (Grace). The extended family metaphor provided a very useful framework for both donors and recipients to draw on to make sense of their relationship to each other. Just as for extended family members in more traditional families, extended family members have no particular rights in relation to each other. This was reassuring for recipients, who could assert their parenting authority and status, and yet the metaphor also offered the opportunity for both families being able to express an interest in, support for, and even have a degree of involvement in each other's lives. Lance (donor), for example, describes how they would step in and provide support for the donor-conceived child if necessary:

We have also said that if something ever happened to them, we would gladly take A as our own. And financially if A was in trouble, we would also certainly consider helping out.

Wendy, a recipient, describes:

The whole way through, our donor family were very supportive of us. We felt like we shared the journey with them. There are not very many other people who have done this, so we don't know any recipient families. We haven't met anybody who has been through this, but our own experience is that our donors have been with us through it.

Further, the metaphor allowed for the children in the two families to be referred to as full siblings, with the result that plans for ongoing, or future contact between the siblings was usually something the families had discussed or set up. Donor and recipient families had a range of information exchange and contact arrangements, including using social media, internet/email, phone calls, to the occasional contact e.g. for special occasions, a few times a year. Where there was contact and involvement however, this was carefully negotiated, with most donors being particularly mindful to respect boundaries. For example, Jack and Grace explain:

We definitely try not to be too intrusive or anything, but we let them know that we are really happy and proud of what they are doing to alleviate any fears that they may have that we are wanting B, or anything like that… . I try not to send birthday presents on B's actual birthday, because that's their time with B. That's B's family time, and we always take a present every time we see B. We don't want to steal their thunder.

For these families, their relationship was regarded as one that was ongoing, and mutually respectful and supportive. For both parties however, there was awareness that relationships are dynamic, that ED was a novel practice, and that they were in a sense, pioneers, having no clear blueprints as to how things would unfold in the future. For some, there was a degree of anxiety and uncertainty to ED that they needed to negotiate, and they spoke of the need to ‘have faith that it's going to be OK. And just be pioneers, and make it work’ (Mandy), to be ready for ‘all sorts of scenarios and possibilities and unexpected things’ (Janet) and to proceed cautiously.

Discussion

As Taylor (2005) comments, ED involves a unique way of forming families in that the three previously unified elements of reproduction: genetic, gestational and social, are separated out into distinguishable elements. ED offers the potential to ‘challenge previously held cultural constructions of kinship’ in which kinship ties are based on genetic ties (Taylor, 2005, p. 189). As in ED the recipients are gestational, birth and social parents, it is possible to conceal the genetic element of reproduction and relegate the donors' role to the background. In this study however, both donors and recipients regarded genealogy and genetic knowledge as critical for well-being and identity, and as bestowing immutable kinship ties between donors and offspring. Embryos were viewed not just as life forces, but as the donors' children, as has been the case in several other studies (de Lacey, 2005, 2007a; Nachtigall et al., 2005; Provoost et al., 2009; Paul et al., 2010; Stiel et al., 2010; Blyth et al., 2011; Kato and Sleeboom-Faulkner, 2011). By seeing the offspring as still ‘theirs’, donors also still assumed some parenting role, expressing interest in, and even moral responsibility towards ensuring the child's well-being was enabled. The concern of donors for the well-being of donor-conceived offspring has been cited in other donor conception studies, even where the donations were of sperm, and not embryos (de Lacey, 2005, 2007a; Mohler-Kuo et al., 2009; Lyerly et al., 2010; Paul et al., 2010; Daniels et al., 2012; Crawshaw et al, 2013) In this study, concern for donor offspring translated into a desire by donors to select ‘suitable’ parents (as for McMahon and Saunders, 2007; Paul et al., 2010; Collard and Kashmeri, 2011; Frith et al., 2011) and to ensure disclosure and access to genetic heritage. As in Frith et al.'s (2011) and Paul et al.'s (2010) studies, donors wanted the offspring to have information about them and their family, and regarded this as central to the well-being of not just the donor-conceived child but also of their children. However, donation in this context was emotionally challenging, as has been reported in other studies where embryos are viewed as children (Cattoli et al., 2004; de Lacey, 2007a; Fuscaldo et al., 2007; Lyerly et al., 2010; Kato and Sleeboom-Faulkner, 2011; Provoost et al., 2011). Furthermore, donation in the context of regarding the offspring as still connected to them and as part of their wider family, raises potential concerns about the ability of donors to sufficiently distance themselves from involvement in the recipient family and offsprings' lives, and thereby facilitate healthy recipient-offspring attachment and well-being.

Recipients likewise saw genetic ties as important for social bonds, and while they asserted their parenting rights, they regarded disclosure and access to genetic information as important. As for the donors, recipients did not see donation as a one-off, medical event. Rather, as Grace et al. (2008) have pointed to, the open nature of the donation reversed the negation of the donor, making it more difficult to position donors as relatively unimportant as was the case in MacCallum and Golombok, 2007's and MacCallum and Keeley, 2012's studies, where donation was anonymous. Instead, they saw themselves as parents that had to include the existence of another family in their parenting in order to ensure the child's well-being. For some, this form of family-building was challenging, and constituted a ‘last resort’ in their pursuit of parenthood (as also reported in Goedeke and Payne, 2009).

Kirkman (2008) has suggested that donors and recipients have to strategize to reconstruct the significance of genetic and social connectedness and negotiate a new script for what constitutes family. In this study, donors and recipients drew on both an adoption metaphor, and an extended family metaphor, to make sense of ED practice.

Rather than the adoption discourse inhibiting donation, as suggested in some studies (e.g. de Lacey, 2007a), the adoption metaphor served a useful purpose in that it operated as what Lovelock (2010) has described as a naturalizing strategy. It helped donors and recipients to see ED as a viable option and made sense of and structured their experiences, but also expectations. This may be because in the New Zealand legislative context of disclosure and donor registration, ED has more parallel with open adoption, which allows the possibility of information about and contact with the adopted child. Indeed, Lovelock (2010) suggests that open adoption practices have served as important antecedents for ED in New Zealand, and donors in this study reported that they would not have donated under anonymous conditions. However, the adoption metaphor also brought to the fore differences between ED practice and adoption that were of concern: for example, the lack of screening for suitable parents in ED practice, the greater inability to ensure disclosure of the conception, since as has been pointed out elsewhere (e.g. Blyth, 2002; Hammarberg et al., 2011), ED is more able to be concealed than adoption, and disclosure rests on a moral obligation of the recipients. However, donors also regarded the adoption metaphor as not quite fitting, emphasizing the distinction between an embryo and a child, and speaking of donation as easier emotionally than relinquishing a child that they had carried and given birth to.

As also reported in Collard and Kashmeri's (2011) study, recipients similarly drew on an adoption metaphor to develop a framework for ED. Seeing ED as adoption enabled it as a family-building option, providing a way to accept the parenting of a non-genetic child, and, in the context of open adoption, being ‘good parents’ by facilitating openness and information exchange. Recipients also saw ED as ‘adoption with benefits’, including advantages referenced in other research such as a greater likelihood of being selected, the opportunity to experience pregnancy, childbirth, and parenting from birth, as well as the ability to appear more like ‘other’ families (Johnson, 2003; Blyth et al., 2011; Hill and Freeman, 2011; Keenan et al., 2012). While the adoption metaphor allowed recipients to draw parallels between their position and that of adoptive parents, they also placed great emphasis on the role of gestation, seeing it as significant for attachment (as was the case in MacCallum, 2009 and as reported by MacCallum and Widdows, 2012), as well as offering control over the child's prenatal development, and even affecting genetic make-up. Through emphasizing gestation, recipients were thus able to achieve some distance from the genetic parents and assert their position as parents. This mirrors the findings of Kirkman (2008), who suggests that oocyte recipients downplay genetics and claim maternity through gestation; while they may not entirely locate themselves as the ‘real mothers’, they adopt a consoling plot, using biology to mediate genes and relationships.

In addition, in attempts to understand and manage ED, both donors and recipients referred to each other using family terms, such as aunts or uncles. By seeing each other as relatives or as extended family members, this allowed investment in the others' well-being and an interest in maintaining connections, but bestowed no legal rights or authority in relation to each other. It allowed for a degree of contact between donor and recipient families to be normalized, as is the case for extended families, but this could be flexible, and activated by choice (although mainly by the recipients). Indeed, several donors and recipients had a range of information-exchange and contact arrangements, from indirect contact (e.g. Facebook, email) to direct contact for significant family occasions such as birthdays. Contact was framed as healthy for all the children involved as well as reassuring for adults. It was constructed as non-intrusive (e.g. through social networking), and not necessarily frequent. As in Paul et al.'s (2010) study, both parties acknowledged the possibility of challenges in the relationship: donors did not want to interfere by making comments about the child or parenting; recipients were anxious about judgement of their parenting. But by locating each other as extended family, donors were afforded some involvement and degree of ‘family rights’, allowing them to express interest while staying on the periphery in relation to the child. Donors may become more comfortable with their lack of legal rights by drawing on a discourse that reinforces family ties as immutable even where these are not actioned through regular social contact.

As is the case in sperm donation recipients (see Indekeu et al., 2014), recipients in this study were confronted with the challenge of asserting their authority as parents in the absence of a genetic tie, while living in a culture where biogenetic connections between family members are valued. Like donors, recipients drew on extended family discourses which enabled them to bring the donor family into a form of relation with their family while simultaneously placing a distance between the donors and the child. This may have enabled them to inhabit a position of authority over their children, take on board or ignore any suggestions, and position the donor family in significant, but less threatening, even supportive, ways.

Thus, as in Grace and Daniels’ (2007) study of donor conception, donors and recipients in this study made use of a fluidity of concepts, encompassing both social and natural constructs, at times combining and at other times separating them in order to manage the network of relationships. They managed the implications and inherent tensions of a genetic/kinship discourse by drawing on an adoption discourse, which provided a framework for managing issues related to welfare issues and disclosure, and by simultaneously giving weight to a gestational discourse which underplayed the significance of genetic inheritance and strengthened the ties between recipients and donor offspring. They invested in a discourse of ED as building extended families, which allowed them to activate genetic kinship in a way that acknowledged and placed boundaries around the rights and responsibilities of each party. Rather than parenting and families being regarded as either biological (genetic), gestational or social in nature, donors and recipients drew on ways to hold the various elements together and recognize them all. While genealogy remained of importance in family constructs, they were able to hold on to this in ways that did not destabilize family relationships and boundaries.

Building family through ED has the potential to lengthen the chains of connectedness between people, and as Lovelock (2010) has pointed out, those who make up this chain may operate at different levels and have different priorities. This challenges the notions of what is natural, and may provide a foundation for families in terms of responsibilities and obligations in child-rearing. Indeed, Wallbank (2002, as cited in Grace and Daniels, 2007) suggests that technologies such as donor insemination and surrogacy do not necessarily have to lead to parental exclusivity. Grace (2008), in relation to sperm donation, has written that where both genes and environment are important, donor offspring potentially have two men in their lives that each represent facets of the paternal figure. Likewise, we suggest, in ED the offspring may be constructed to have two families. ED was characterized as shared parenting in Goedeke and Payne's (2009) study, and while this has the potential to be threatening, it was also framed as offering a unique way of building families.

Study limitations and implications

Participants for this study were recruited at various stages of the ED process: some had only recently been approved for ED, for some the donation had occurred a few years previously, some had had unsuccessful outcomes, others had had one or more children through ED, and for those with children, the children were still young. Part of the challenge in embarking on this study was the small number of ED cases that had proceeded by the time of recruitment, and thus recruitment was based on participants having achieved ECART approval. ED is however, not experienced as a static, one-off event. As Kirkman (2004) observes, meanings may change over time and circumstance, particularly as children mature, as disclosure becomes an issue, and as relationships develop. Further studies will be useful to research these developments, as well as to explore the outcomes for donor-conceived children, particularly given the lack of follow-up studies of families formed through donation (Blyth et al., 2011; Frith et al., 2011; Kirkman et al., 2014). On the other hand, it is also important to recognize the success of recruitment for this study, particularly given the low number of applicants for ED at the time of data collection. This may add to the generalisability of the study findings and insights.

The study findings must also be considered against a backdrop of New Zealand's particular legislative frameworks (HART Act, 2004) and ED guidelines (ACART, 2008), which emphasize the rights to access genetic knowledge and prohibit anonymous donation. Open adoption practices in Zealand, and the recognition in legislation of indigenous Māori beliefs around the centrality of whakapapa (the ability to be able to recount your genetic heritage), further underscore genetic knowledge as critical and as leading to social ties, and have set precedents for ED (Angus, 2012).

While the findings may be particularly relevant for other jurisdictions where genetic ties are equally valued, with the international trend towards open donation practices, the study findings may offer unique insights into how donors and recipients make sense of, and experience, embryo donation in open donation contexts. Several implications of open practices may be relevant. For example, since ED involves information exchange and possibility of contact, the establishment and maintenance of healthy donor-recipient relationships is important to consider. Information exchange arrangements, contact expectations, boundaries, and each party's rights and responsibilities need to be as clearly defined as possible from the outset, while acknowledging that these may change. Donors and recipients may also wish to have more opportunity to develop relationships with each other prior to making a decision about whether or not to proceed with ED, rather than the current practice of meeting only once in a joint counselling session. Donors and recipients may also benefit from access to ongoing support mechanisms, such as counselling, to assist them in managing the longer-term thoughts and feelings that may accompany donation, to help mediate relationships between donor and recipient families, and to assist in disclosure of donor conception with children in both families. Secondly, given the parallels drawn to adoption practice and the possibility of ongoing contact between the two families, it may be useful to consider whether the recipients' suitability to parent, as well as the donors' ability to manage the implications of ED, should be assessed prior to proceeding with ED. While de Lacey et al. (2010) and de Lacey et al. (2015) have pointed out that there is some debate as to whether assessment is warranted in such contexts given that there is ‘not yet’ a child to protect, Wilde et al. (2014) argue that the use of embryos should be recognized not just as a treatment pathway, but also as a family building process, and that there should thus be mechanisms in place to support this. Finally, since such importance is placed on the donor offsprings' needs and rights to access their genetic knowledge, measures to ensure disclosure of donor conception, such as a birth certificate annotation, should be introduced in the interests of donor offspring well-being. While some may argue that such measures would intrude on individual choices and on privacy, Allan (2010) highlights how asserting the psychosocial importance of genealogy and offsprings' right to access their genetic knowledge in the absence of mechanisms to ensure that this occurs is inherently contradictory. Further, as Blyth et al. (2009) have commented, the absence of such measures has the potential to make the state complicit in acts of deception and arguably undermines the ability to respect the best interests of children born from ART.

Conclusion

ED has the potential to offer hope to those struggling to have children, as well as to provide a viable solution for those with embryos that remain after IVF treatment. At the same time, however, ED brings new challenges as families are built in novel ways that involve the interweaving and transformation of biogenetic and social aspects of parenting and family formation, and that attempt to ensure the well-being of children and future generations. Some have suggested that ED is risky, even experimental (Guichon et al., 2010). Some jurisdictions have opted to prohibit cryopreservation or ED, or allow only those embryos that the couple will be able to use to be frozen. ED may indeed ‘bring about new kinds of social relations in which kinship boundaries are redefined’ (Taylor, 2005, p. 189). Such expanded constructs of family and kinship may involve ambivalence and complexity, and the implications for future generations may be uncertain. The social, ethical, legal, and psychological implications, both in the short and long term, need to be considered by all who undertake ED and help facilitate it. While we should not be afraid to seek new answers to the dilemmas associated with reproductive technologies, we should proceed carefully and cautiously. We should take into account the rights and needs of individuals, children and their families, and the cultural and social context within which reproductive technology occurs. We also need to draw on research and the experiences of those who proceed with ED to guide us. This means continuing to develop appropriate strategies, policies, and legislative frameworks through which to support donors and recipients in working towards novel, shared solutions both for unused embryos and for building families through valuing, combining and separating genetic, biological and social parenting roles.

Authors' roles

This article is based on PhD research conducted by S.G. who designed the study, collected, analysed and interpreted the data, and drafted the manuscript. M.T., E.d.P. and K.D. provided academic supervision and mentorship. K.D. assisted in drafting the manuscript, and M.T. and E.d.P. reviewed and approved the final draft.

Funding

This study was funded by an AUT University Faculty of Health Environmental Sciences Grant.

Conflict of interest

The authors have no conflict of interest to declare.

Acknowledgements

The authors wish to thank the donors and recipients who participated in the study and shared their understandings and experiences.

References