Abstract
This article asks how well new developments in family life are reflected in law and policy, with a particular focus on donor conception. There has been an unprecedented ‘opening up’ of family life in recent decades; this increased diversity is, at least in part, linked to developments in reproductive technologies, including gamete donation. In family lives touched by donation, genetic relations with ‘donor connections’ take genetic connectedness beyond traditional notions of kinship. There is not yet an established social script for how to understand what constitutes meaningful connectedness in reproductive donation. Focussing on the UK context specifically, where assisted conception is highly regulated, this article examines on the one hand, how UK law and policy portray meaningful connectedness in the context of donation, and, on the other hand, how well this fits with connectedness as experienced within egg and sperm donor communities. Drawing on original data from UK law and policy analysis, and empirical interview data with egg and sperm donors and their kin, our analysis shows important disparities between law and policy, and the empirical evidence, suggesting a need for an overhaul of UK donor conception law and policy.
Keywords
There has been an unprecedented ‘opening up’ of family life in recent decades (Morgan, 1996; Stacey, 1998). Same-sex marriage, step-parent families, solo motherhood and other ‘non-normative’ family forms are increasingly supported and protected in law. This change in social and legal attitudes has been coupled with developments in human reproduction (Waldby, 2019), including in-vitro fertilisation (Franklin, 2013) often used in combination with egg and sperm donation (Golombok, 2015; Hertz & Nelson, 2019; Nordqvist, 2014).
New family forms introduce new forms of connectedness that go beyond the bounds of the ‘traditional family’. For example, a step-parent arrangement, where a child may gain one or two new parents (and grandparents and so on), sets in train a whole ‘new’ set of connections for all involved. Similarly, a child born as a consequence of donor conception is connected to their parent(s) and immediate family of course, but may also be understood as connected to the donor and others conceived using his or her donated gametes, known as ‘donor siblings’. The donor, may, in turn, have their own children, partner and parents.
Looking at donor conception in particular, there is no established social script for how to understand the ‘new’ connections it engenders, or, indeed, what constitutes meaningful connectedness in this context (Nordqvist, 2021). Consequently, important questions emerge for families, and societies: How should the connection between a child and their egg or sperm donor be understood? Does the connection between the recipient parent(s) and the donor carry meaning? Does the donor-conceived person have a connection to the donor’s family, and vice versa? Should these connections be recognised in some way in law and policy? If so how, and why?
This article asks how well current policy understandings of connectedness, regulating ‘new’ family forms, fit with experiences ‘on the ground’. UK law and policy is of interest here, in part because assisted conception is highly regulated in the UK, and in part because, since regulation was introduced, law and policy has specifically been updated to better recognise forms of meaningful connectedness. In 1982, the British government set up the Warnock Committee; its recommendations were embodied in first the Human Fertilisation and Embryology Act 1990 (the 1990 Act) and in the subsequent regulatory and licencing body, created by the legislation: the Human Fertilisation and Embryology Authority (HFEA) (Richards, 2014). The Warnock Committee felt that it was a matter of good practice that donors should remain anonymous (Richards, 2014, p. 28f). However, ‘donor anonymity’ came under increased scrutiny in the 1990s and early 2000s, and subsequently, new UK regulation was introduced to end donor anonymity and introduce what became known as ‘identity-release’ donation. Through the UK Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004, the law changed such that people conceived via donor-assisted conception in HFEA licenced clinics after the 1st of April 2005, were able to access identifying details about their donor when reaching legal maturity. This amendment to the HFE Act 1990, means that young donor-conceived people, on turning 18, can access identifying information about their donor, should they choose to do so (assuming they have been informed of their conception). Along with a growing number of other jurisdictions, including, for example, Sweden, The Netherlands and France in Europe and the states of British Columbia (Canada), Colorado (USA) and Victoria (Australia), who also have versions of identity-release legislation, UK legislation illustrates an emerging sentiment suggesting that third party reproduction give rise to meaningful forms of connectedness. 1
Taking the example of UK policy, we ask how law and policy, written to regulate and define connections arising from donation, construe their meaning. We then bring this into conversation with empirical data evidencing everyday understandings of connectedness in egg and sperm donor communities. Law (and its ensuing forms of policy) both constructs and reflects social actions and imagination (Geertz, 1983). Legal and policy decisions likely reflect the dominant social norms, values and assumptions of the social and cultural context to which they apply. But law also produces meaning and shape possibilities – both imagined and enacted (Gilman & Nordqvist, 2018). As such, our article contributes to the wider debate about how ‘new’ family forms are reflected in law and policy, examining the extent to which legal frameworks, when updated to keep pace with social, medical and technical developments in family life, represent an adequate fit with everyday life. Our purpose here is not to make specific policy recommendations, but rather to use the empirical evidence to deepen understandings of how ‘donation connectedness’ may figure in personal life, and for whom. Showing the need to consider its relational impact, we make the argument that UK policy makers (and those in other jurisdictions with forms of ‘identity-release’ policies) need to consider formulations of ‘donation connectedness’ currently in place.
Existing Research
This paper adds to literature on donors’ experiences overarchingly, and specifically, debates on identity-release donation policy. In terms of the former, early social science interest in reproductive donation focused on the recipient family, and the ‘new kinship’ of assisted conception (e.g. Carsten, 2004; Edwards, 2000). Early research on donors in particular tended to be questionnaire-based, surface mapping donor’s attitudes (e.g. Daniels & Lewis, 1996; Svanberg et al., 2003), and research exploring sperm donors’ experiences was largely missing (Van den Broeck et al., 2013). Early studies into egg donation were rare, but tended to focus more on experiences (Konrad, 2005; Shaw, 2007). Since the mid-2000s, research into egg and sperm donors’ experiences has expanded with important emerging foci being around potential exploitation, reproductive labour and racialised and economic inequalities (Nahman, 2013; Waldby, 2019); donation and enactments of gender (Almeling, 2011; Mohr, 2018); and also the relational consequences of donation, particularly between the donor and the recipient family (Andreassen, 2019; Gilman, 2020; Hertz & Nelson, 2019; Petersen, 2019). The latter is also the home of our study, which is the first qualitative study to situate donation in the context of donors’ own relationships.
In terms of debates on donor conception policy, this is, to our knowledge, the first that brings donation experiences into conversation with UK law and policy. As such it adds to existing debates on UK donor conception policy, which has to date focused on constructions of parenthood, sexuality and gender in law (e.g. Donovan, 2006), and its management of ‘openness’ and information sharing (Crawshaw et al., 2017; Gilman & Nordqvist, 2018; Klotz, 2014; Nordqvist, 2014). Nordqvist (2014), Klotz (2014) and Turkmendag et al., (2008) specifically compare empirical data with policy in terms of recipient families; Konrad (2005) contrasted experiences of ova donors, recipients and policy at the time of anonymity.
Approaching ‘Connectedness’ Theoretically
The idea that a kinship connection is brought into being through shared bodily substance – be it conceptualised as genetics, biology, blood or, more recently, DNA – is central to Euro-American cultures of relatedness (Carsten, 2004; Edwards and Strathern, 2000). Such understandings emerge from heteronormative ideas and ideals of kinship (Nordqvist, 2015; Petersen, 2019), and hold that bodily material ‘connect people together’. As such, they underscore a range of kinship ideas, including notions of belonging, heritage and inheritance/passing down (Nordqvist, 2017). This is recently and powerfully reflected in the increased popularity of mapping family history in what Barnwell (2013) calls a ‘genealogy craze’. This is, at least in part, fuelled by an increased accessibility of DNA testing in the form of Direct-to-Consumer-Genetic-Testing (DTCGT). This increased emphasis on genetic links has been documented in donor conception communities, for example, in research on queer families seeking contact with ‘donor siblings’ (Andreassen, 2019; Hertz & Nelson, 2019) and in donor-conceived people’s engagements with DTCGT (Newton et al., 2023).
In recognising the cultural importance placed on genetic relatedness, we emphasise that this is socially produced. Studies of relatedness in everyday life have demonstrated that genetic links have no intrinsic meaning and that how they are defined, understood, acted upon and come to shape relationships in particular ways, is negotiated with personal circumstance and vary over time and space (e.g. Carsten, 2004; Finch & Mason, 1993). Newton et al.’s (2023) study, for example, confirms what sociologists and anthropologists have argued for a long time, namely that a DNA test is unable to resolve the question of ‘who counts as family’ (see also e.g. Edwards & Strathern, 2000; Nordqvist & Smart, 2014; Novas & Rose, 2000). Rather than suggesting that genetic connections would represent ‘real’ kin connectedness in some way, we see genetic connectedness as something that people ‘do’ (increasingly) and as something that becomes meaningful (sometimes) through processes of living, doing, feeling and negotiating connectedness. It is the ‘doing’ of them, that produces such connections as in/significant, and ‘real’.
In saying this, we would not want to presume that the sense of connection that can come into play in donation can necessarily be reduced to genetic links. As we argue elsewhere (Nordqvist & Gilman, 2022), we suggest that the sense of affinity that can follow from donor conception is much more complex and multidimensional in nature. It is linked to cultures of gift-giving, issues of birth/life/death, transitions to parenthood, the ordinary combined with the extraordinary, as well as genetic imaginaries (Nordqvist, 2017), all of which carry their own charged dimensions of meaning. Hence, overarchingly, we approach donation connectedness by drawing on Mason (2018) conceptualisation of affinities. Mason defines affinities as ‘potent connections that rise up and matter. They are encounters where it is possible to identity a spark or a charge of connection that makes personal life charismatic, or enchants or even toxifies it’. (Mason, 2018, p. 1). Drawing on Mason, we suggest that donation, for a combination of reasons, can give rise to ‘potent connections’, the impact of which can be felt to be deeply positive, and also, by the same token, deeply problematic.
Methods
The data discussed in this paper were produced as part of a study at the University of Manchester 2017–2021, led by Dr Petra Nordqvist which aimed to explore the impact of sperm and egg donation for donors and their relatives, and was approved by the University of Manchester's Research Ethics Committee. The study included analysis of (current and historic) UK laws and policies relating to donation (as accessible in 2017), interviews with 18 clinic staff (mostly fertility counsellors) and in-depth interviews with men and women who had donated eggs (n = 25), embryos (n = 1) or sperm (n = 26) and/or who were relatives of donors (n = 23) (some in these groups overlapped).
In terms of the policy analysis, between January and May 2017, we identified 61 documents in which the rights and obligations of donors, or donors’ families, were either directly discussed or implicated (for full list see Nordqvist & Gilman, 2022). These included legal documents, public consultations, transcripts of parliamentary debates, professional guidance to infertility counsellors and a range of documents published by the HFEA. The documents were identified and selected via prior knowledge of the regulatory context, consultation of socio-legal academic studies in this area, browsing the HFEA website, discussion with HFEA staff and through contacts with British Infertility Counselling Association (BICA) members. The documents were read and coded using Nvivo. The first stage of coding was descriptive, identifying which aspects of policies were relevant to different actors involved in donor conception and categorizing how exactly they were implicated. Next, we compared how different actors were positioned and framed in the policies. Finally, we looked for justifications, explicit and implicit rationales, as well as notable absences within the documents with a view to explaining the final policy decisions made and particularly the differential positioning of people impacted by donor conception within these documents.
In terms of the interviews, multiple strategies were adopted to recruit donors: contacting past donors with the help of staff across three English fertility clinics, reaching out to personal and professional networks, advertising via online networks for donors and through support organisations. This was for both pragmatic (donors constitute a ‘hard to reach’ population) and theoretical (in order to include a wide range of experiences) reasons. The overall focus of the project was on donors’ and their relatives’ experiences in the context of increased openness and traceability. Consequently, recruitment targeted people who had donated at least once in the UK since April 2005; since this date, all persons who donate in UK licenced clinics must consent to their identity being disclosed to any person conceived from their donation. Donor kin were predominantly recruited through donors; in cases where donors and kin from the same family took part, we decided not to analyse the data by family group, in order to protect the anonymity of participants.
Most of the donors we interviewed had experienced or pursued ‘identity-release’ donation, but others knew their recipients and some got to know recipients for the purposes of donating, often via online networks or agencies. A small number had also donated anonymously, either prior to 2005 or abroad. About half of the sperm donors interviewed had donated outside of clinics, facilitated through online or personal networks. Eleven of the egg donors had donated as part of a so-called egg-sharing programme, where women donate half their eggs in exchange for reduced cost IVF treatment. Many donors had experienced more than one of these ‘donation pathways’ (Nordqvist & Gilman, 2022). In terms of the donor kin, we interviewed 15 partners, five parents and three siblings.
The donor sample was diverse in relation to many demographics. Sperm donors were between 22 and 58 years of age at the time of first donation and egg/embryo donors between 21 and 40. Approximately one-third of both male and female donors identified as gay/lesbian or bisexual and the remainder as heterosexual; 31% of male donors and 69% of female donors had their own children at the time of interview and both groups included a wide range of socio-economic backgrounds. However, in relation to ethnicity, the sample was notably white; all donors identified as white European or white British, except two who identified, respectively, as Black and Asian. The socio-economic background and ethnicity of the donor kin tended to resemble that of the donors, due to our recruitment method.
The interviews were conducted between 2018 and 2020 and lasted between one and three hours. In the vast majority of cases, interviews were conducted by the second author, with a minority conducted by the first author or a research assistant. The vast majority of the interviews were face-to-face, with a small proportion conducted over the telephone. We took an in-depth, loosely structured approach to interviewing donors and donor kin, allowing them to tell their stories in their own terms, and using a topic guide to probe further for areas of interest (e.g. responses of family and friends, thoughts about recipients). Interviews were audio recorded, transcribed verbatim (removing identifying information) and subsequently analysed with the support of Nvivo software to code the data by both descriptive and analytic themes.
The findings and themes reported in this article emerged as salient themes within our data set as whole. It should be noted, however, that donors and their kin took a mixed approach to ‘donor connectedness’; not all participants desired to ‘realise’ all such connections, nor did all experience connections positively (especially over time). Moreover, such connectedness was fundamentally marked by negotiations of closeness and distance (for a fuller discussion of other research findings, see Nordqvist & Gilman, 2022; see also e.g. Hammond, 2018; Mohr, 2018; Petersen, 2019). The data selected here, in which we show a range of experiences of connection, are brought to the fore however, because the nuanced, complex, networked and ‘messy’ understandings of ‘how donation connects’ evidenced in our study provide important commentary on current policy.
UK Law and Policy On Information Sharing in Licenced Donor Conception
As noted in Gilman and Nordqvist (2018), when analysing current policy to understand how it configures donation connectedness, it quickly becomes apparent that policy recognises three ‘parties’ as being involved: the donor-conceived person, the recipient parent(s), and the donor. It is between these three that information sharing is currently discussed and supported (or hindered) in various ways. To summarise current UK policy, since 2005, the donor-conceived person 2 is able to access identifying information about their donor from age 18. From age 16, they are able to access non-identifying information about them, including, for example, information about, for example, their ‘ethnic group’ and interests. At this age, the child can also access their donor’s so-called ‘good will message’ – a message UK donors are encouraged to write at the time of donation to any potential donor offspring – as well as an anonymous personal description of themselves (a ‘pen portrait’). From age 16, they also have the right to access basic information about any ‘donor siblings’. Then, at age 18, they can apply to register with the Donor Sibling Link (DSL), a facility through which donor-conceived people can, by mutual consent, make contact with ‘donor siblings’.
In contrast, the rights to access information about the other parties afforded the recipient parents and donors are much more restricted. Recipient parents are only ever permitted access to the same anonymous information available to 16-year-old donor-conceived children, which they can access prior to treatment, as well as afterwards (Nordqvist & Gilman, 2022). They can also apply to the HFEA to access basic information about the number, approximate age and sex of any ‘donor siblings’ to their own child/ren. Policy documentation suggests that this is so that they can tell their children about the donor (Ibid.). Unlike the donor-conceived person, however, parents do not have the right – at any point – to apply for identifying information about the donor. In terms of donors’ rights to access information, these are very restricted. Following the HFE Act 2008, donors can request information about the number of donor offspring, their year of birth and sex. Unlike donor-conceived offspring and recipients, they cannot access any further information. At no point can they access identifying details about the recipient family. 3
This means that current policy prioritises the ability for donor-conceived adults 4 to access information, should they choose to seek it. There is a certain popular appeal in the donor-conceived person’s right to make their own decisions about finding out information about ‘their’ donor. We do not seek to deny that doing so can be significant; nor do we seek to deny that it is important to account for the delicate formation of relationships within recipient families when considering disclosure decisions (Dempsey et al., 2021). What we do wish to suggest however, is that current policy fails to adequately account for some of the other significant dimensions of connectedness at play in these constellations.
Experiencing Connectedness in Donation
Our empirical data suggests that the way in which people experience egg and sperm donation (either as donors or donor kin) does not necessarily fit with policy makers’ view of connectedness. In particular they highlight three areas of discrepancy: the donor-recipient connection; understandings of agency; and constructions of ‘origins’.
The Donor-Recipient Connection
Policy constructs a pathway of information sharing between the donor-conceived person and the donor (as outlined above) and notwithstanding that it is one-directional (it is only the donor-conceived person who can seek identifying information about the donor and not vice versa), it suggests that a connection of importance is perceived to exist here. Recipient parents do have access to some information about the donor, but, the application to request this makes it clear that this was for the benefit of the child, not for the parents per se (Gilman & Nordqvist, 2018; Nordqvist & Gilman, 2022). Donors cannot access any information (anonymous or identifying) about their recipients. Hence, current policy affords no recognition to the idea that a connection, that carries meaning in its own right, might exist between donors and recipients. On a practical level, this policy translates into a clinical system of ‘separateness', aimed at preventing any contact between donors and recipients during treatment. This is true for policy in the UK and for most other identity-release jurisdictions, including Sweden, Denmark, and Victoria, Australia, with New Zealand being a notable exception.
Our empirical data brings a new perspective on this because we found that a sizeable proportion of identity-release donors experienced connectedness very differently. Consider Rachel and Louis’ accounts: The connection that I feel the most is with the mother, and I would love to meet her one day. (Rachel, egg donor, egg-share identity-release donation) It’s not even about the child. I hope that the parents […] who opted to go down this route are as fulfilled as they hoped to be and as happy as they hoped to be. (Louis, sperm donor, altruistic identity-release and anonymous donation)
These accounts suggest that, at least from donors’ point a view, a sense of affinity can exist with their recipient(s) (see also e.g. Shaw, 2007; Petersen 2019). It might be surprising to note that to Rachel and Louis (above), the connection with the recipient parent(s) is felt to be the most significant arising from donation. This is not to suggest that donors did not carefully consider the connection vis-à-vis donor offspring (Nordqvist & Gilman, 2022), nor is it to say that all donors shared this view; but it does suggest that significant connections can be experienced here, and sometimes they trump any connection felt with the child. 5
For those who felt an affinity with their recipient, this expressed itself in varied ways: I’m curious about them [the recipients], if they ever wanted to contact me independently […] yeah I’m reachable straight away, yeah. (Vincent, sperm donor, altruistic, identity-release donation) I’ve got like a mental picture that I have in my head of the recipient […]. I’m curious, I wouldn’t mind knowing about her actually. (Maria, egg donor, egg-share identity-release donation) I think I was quite sad [when it didn’t work] […] I think I kind of grieved for a woman that I’ve never met and that was a very bizarre feeling. (Paige, egg donor, altruistic identity-release and known donation) The clinic were just adamant around the anonymity and I was like ‘well do they [the recipients] want to know [who I am] because if they want to know, I am happy for them to know’. (Tess, egg donor, altruistic identity-release donation)
It is worth noting the range of sentiment here, from light-hearted reflections through to grief, with egg donors more likely to express being profoundly impacted. Such impact is made explicable when we bring into view donation experiences as individually situated and negotiated in personal life. Rachel’s (quoted above) story provides an illustrative case. She was married with a young son but had been struggling for a long time to conceive a second child. After several miscarriages and having access to only limited free treatment on the UK National Health Service, she and her husband started to look at paying for IVF privately. This is when they first came across the possibility of egg-sharing. Her treatment, and donation, were successful and this meant that whilst Rachel carried her baby, she was also aware of the other woman – her recipient – being at a similar stage in her process of having a baby. Some UK clinics will anonymously forward small gifts or ‘thank you’ notes from recipients to donors, and Rachel had received a gift from her recipient:
6
[I received a letter from the recipient] and the letter was just wonderful, if the house was on fire it’s something I would try and take because it’s something – sorry it really gets me [Rachel wells up] – that when [my son] is older I would like to share with him. She [the donor] [also] sent me that necklace and I wore the necklace [in labor] because I just...that’s why I said I would like to meet her more than the baby, I just feel this really strong – […] And I guess I feel like I have an affinity to her in that we have an understanding perhaps of the journey that we’ve been on. So yeah it’s the kind of thing where I think maybe we’ll both be in our 50s and we’ll sit around and have a coffee and she can tell me about the things that I’ve wondered about over the years, and maybe she’s wondered similar things about it, I don’t know. Sorry [cries]. (Rachel, egg donor, egg-share identity-release donation)
We discovered that, for a proportion of donors, this depth of affinity, which went unrealized (and unrealizable) in identity-release donation because of ‘official’ systems of separateness, pushed them into pursuing known donation (thus navigating a new ‘donation pathway’, as discussed above). As with previous studies (e.g. Hammond, 2018; Konrad, 2005) in different regulatory contexts, our data suggest that a meaningful sense of connectedness exists here. However, current law, which acknowledges no possibility of donor-recipient affinities, poorly accounts for these experiences.
Understandings of Agency
The second dimension our findings suggest needs critically assessed is current policy’s construction of agency, that is, to whom it confers choice and recognises as deserving of access to information. Klotz (2014) suggests that one of the key social values shaping current UK policy is its aim to create agency for donor-conceived people to decide whether information about people genetically related through donor conception matters to them or not. We agree with Klotz’s analysis that policies, such as enabling donor-conceived people to access identifying information about their donor, are rooted in a commitment to enabling them, as individuals, to make choices about their lives, identities and relationships. Our analysis suggests that this is because they are understood to ‘lack control’ in the context of their birth, and so it is specifically formulated to prioritise ‘giving them back’ agency and self-directedness (Nordqvist & Gilman, 2022). This can be seen in the donor-conceived person’s elevated rights to access information compared to recipient parents and donors, should they choose to do so and in the ways in which information flows towards the donor-conceived person (from parents and donors) and between donor-conceived people (if they register with the DSL). The information available to donors and parents is also in service of the donor-conceived person’s ability to choose.
Current policy is thus grounded in the social values of individual choice, reserved for the donor-conceived person. We do not wish to suggest that options should be removed from donor-conceived people, however, our data indicate that there are other ‘goings on’ here too. The data encourage us to shift our gaze slightly beyond ‘the triad’ recognised in policy because they suggest that there are people who can feel themselves to be affected by donation but, similarly to donor-conceived people, they had no decision-making powers: donors’ parents, siblings, and children. We found that whereas donors are likely to consult partners about plans to donate before going ahead (and UK fertility counsellors often insist on meeting them, Nordqvist & Gilman, 2022), when it comes to telling their children or family of origin, donors are much less likely to discuss their decision before donating. Many donors had told relatives, but this was done selectively and retrospectively (Ibid.).
The lack of agency conferred to kin was not necessarily felt to be straightforward amongst the kin we interviewed. Louise, whose sister had donated eggs, provides an noteworthy example. As with most relatives, she and other family members had been told retrospectively. Everyone in the family had been told at once; the news had been delivered in such a way that anything but a positive response was precluded. Louise found herself in a situation where she, as sister, was seen to be affected (she was informed), but she was not given any authority to influence the decision, nor to express any negative feelings.
Siblings have a stake in each other’s reproductive choices, not least because their children also become kin (as nieces and nephews, and, vis-à-vis one another, as cousins) (Lahad & May, 2021); our study suggests that such ‘kinship thinking’ carry meaning in donation. Louise had children of her own, and her children did not have any cousins; Louise felt they were unlikely to ever materialise. This made the existence of her sister’s donor offspring very significant for her. Thinking on behalf of her own children, especially, she felt a strong sense of loss at not knowing them; she cried as she spoke about them and said: I start to wonder about these little [donor-conceived] children and what kind of lives they have and all this but then I think ‘but they’re not supposed to be our family’. I’m quite emotional about it. (Louise, sister of egg donor)
She also pondered on when and how she was going to tell her own children about the existence of the ‘donor cousins’, feeling unsure and lacking guidance. At the same time, Louise felt under a certain amount of pressure to not consider the donor offspring as family; a sentiment that was incongruent with her own feelings. Louise’s story was not unusual in our interviews with kin, even if the strength of feeling was particularly pronounced for her. The existence of donor offspring could be and was felt to matter (sometimes a lot) to relatives: feelings ranged from mildly curious, to a deep sense of emotional affinity. I definitely would like to know how [the donor-conceived children] were getting on, but I’m not allowed to so it’s a stressful thing I guess. (Louise)
The point we wish to make here is that similarly to donor-conceived children, a relative like Louise, had no say in the donation, but unlike donor-conceived people (born after 2005 in the UK 7 ), no choice or agency is conferred to them.
We may explain the prioritisation of the agency of the donor-conceived child as drawing on the idea that children have a special status. Given the historical timing of the policy, it is reasonable to assume that is underpinned by the increased emphasis in law placed on children’s needs emerging around this time (e.g. Smart & Neale, 1999). If we agree with the idea that policy should focus on creating agency for children, we might assume that this regards all children. However, current policy is dramatically inconsistent in this regard. As already discussed, the children of siblings of donors – the ‘cousins’ of the donor-conceived offspring – are unaccounted for. Perhaps even more conspicuously, donors’ own children are also unaccounted for. The salient asymmetry comes into particularly sharp relief for the group of families in our study where one parent was a donor and one or more children were donor conceived. For example, Nate had male factor infertility and the couple’s children were donor-conceived using donor sperm; his wife was also an egg donor. Moreover, Becky, a lesbian solo mother of choice who had a child through donor insemination, and who during the process of IVF donor treatment also became a donor through egg-sharing, reflected on this inequality. As a donor, she felt that her lack of rights vis-à-vis the donor-conceived child was as it ‘should be’ (a sentiment the overwhelming majority of donors we spoke to agreed with), but felt ambivalent about her child’s lack of agency in terms of tracing their genetic ‘half siblings’ born as a result of her egg donation: My child may grow up very interested in my recipient’s child, but she will never be the one who can make that decision [to reach out for contact]. […] I’ve made a decision which leaves my child with relatively few rights, the decision to be a donor. […] As a donor-conceived child, she can seek her sibling, she can seek her donor as and when she wants to [sic]. As the child of a donor she does have another genetic half-sibling out there but there is nothing she can ever do about that. And equally, she may feel really strongly that she doesn’t want to know anything about that child or their family. But I’ve made a commitment to that child and family that I will be available to them if that’s what they want. (Becky, egg donor, egg-share, identity-release donation)
As with the vast majority of participating donors with children, Becky considered it important to tell her own child about her donation: non-disclosure was not considered morally acceptable in the context of parent–child relationships (Nordqvist & Gilman, 2022). Becky was committed to making her child aware of the donation from a young age, but she also believed that her donor offspring should be ‘in charge’ of the nature of any future relationship (Ibid.). The challenge was that by confining herself to a passive stance of ‘holding back’, she also stripped her child of any agency vis-à-vis her donor offspring – their ‘donor sibling’. As Becky explains, whilst, as a donor, her own lack of decision-making powers felt appropriate, the position of passivity forced upon her own child felt less morally straightforward. In contemporary Britain, the moral imperative to ‘put children first’ (especially your own children) is almost beyond question and a key marker of a moral adult identity (McCarthy et al., 2003). For Becky, there was an uncomfortable juxtaposition then between her daughter’s rights as a donor-conceived person to trace her (sperm) donor and ‘donor siblings’ (through him), and her inability to exercise those same rights in relation to equally genetically related ‘half siblings’ conceived from her mother’s eggs. Whilst we do not disagree with the principle of extending agency to children, current policy’s approach of selectively extending agency to children, is inconsistent and creates inequalities.
A further issue to do with agency evidenced in our data, is that decisions about, for example, tracing a donor, should not be considered individual but relational in nature (Mason, 2004). This is to say that people do not operate as ‘free-floating’ individuals in making decisions, but decisions emerge from their embeddedness in relational networks (Smart, 2007). For example, the donor-conceived person may have a sibling by the same donor, or there may be sets of ‘donor siblings’ across different families. The decision of one in the group will affect the others because they live embedded lives. Whereas policy prioritises the rights of the donor-conceived person to decide if and how donor connections matter, it does not account for the fact that this position might be plural. The first children born after the introduction of identity-release donation in the UK will reach legal maturity by the end of 2023, and so, at the time of our interviews, the situation where they can trace their donor was yet to come to fruition. However, donors themselves are alive to these issues. Gill, for example, was an anonymous egg-share donor who had donated just before the law change in 2005, and she was now considering re-registering as an identity-release donor so that she could be traced. Her own children were now teenagers, and they felt very differently about her donor offspring: whereas one was curious, the other wanted no contact. Gill was caught in something of a catch 22 because by facilitating the wishes of one child (e.g. by re-registering) she cancelled out those of the other: their agency with regards to their mother’s donor offspring was intrinsically linked.
Similarly, ‘donor siblings’ may exist over a number of different families, and this further highlights the problems with an individualised approach to choice/agency. Abby donated eggs several times, with two donations resulting in births to two known recipient couples. Over the years, it became clear that, although she was in contact with these two recipient families, each wanted to manage their connection to her in very different ways, and each felt that they had the authority to do as they wished. One couple were very vocal about the egg donation, publicly celebrating Abby as their child’s donor and referring to her children and their own as ‘brothers and sisters’. The other couple were much more secretive about the donation and had not told their son that he was donor-conceived, nor identified Abby as the donor (despite ongoing contact with the family). At the time of the interview, relationships had become extremely fraught on all fronts as the couple who were more open sought contact, via Abby, with the couple who were secretive, leaving Abby with the moral conundrum of wondering whose authority to follow. Abby’s situation is perhaps a little ahead of its time, because until 2023, the official systems (identity-release and the DSL) have not supported this level of contact between individuals. Nevertheless, her situation highlights the wider issue, also applicable to identity-release donation in the future, which is that most of the donors we interviewed, had more than one donor offspring, in more than one family. The assignment of agency that underpin the current policy approach to ‘choice’, is not sophisticated enough to grapple with the reality of life after donation because it fails to account for agency in these matters as necessarily relational.
Constructions of ‘Origins’
The emphasis in policy on donor-conceived people’s exclusive access to information-seeking is usually explained through perception of origins and ‘the potential significant impact the release of [donor] information could have on their sense of identity’ (HFEA 2009). This speaks to Euro-American cultural ideas of kinship which holds that for a person to know ‘who they are’, and to become a ‘self’, they need to know ‘where they came from’ (Carsten, 2004; Edwards, 2000). For persons inhabiting this cultural universe, finding out about one’s genetic ancestry is assumed to have automatic implications for kinship, identity and self. We have previously suggested that while the exact nature of ‘origins’ in current policy might be something of an open question (Gilman & Nordqvist, 2018), there is no doubt that the donor-conceived person knowing about their donor is construed as the key concern, and that such knowledge means knowing, or knowing about, the person whose gametes went into the mix at conception. Whilst UK policy does enable contact between lateral ties (between genetically connected ‘donor siblings’), at the time of our policy analysis there was a much stronger emphasis placed on the vertical ties (between the donor-conceived person and the donor). Although the same application enabled access to information about both ‘half siblings’ and donors, what was portrayed as emotionally complicated was largely framed in terms of information about the donor (Nordqvist & Gilman, 2022). Similarly, when policy makers consider ‘future contact’, they tend to describe donor-conceived people seeking contact with their donor (HFEA, 2016). Hence, ‘origins’ are constructed as to do with the person whose gametes went into the mix. Moreover, they are vertical and individualised in that they are perceived to start and stop with the donor; potential future contact is envisioned as a dyadic event.
Our empirical data provides interesting food for thought here because we found that, empirically speaking, the meaning of ‘origins’ in donation is far more complex. Alison was unique in our sample as the only embryo donor and also the only donor who was not a direct genetic relative of any person born from her donation. She was a mother through ‘double donation’, where both donated sperm and donated eggs were used. She was a donor in the sense that after she had her child, she donated the ‘spare’ embryos to an unknown recipient. She spoke about her experiences as both an embryo donor and a recipient of donated eggs and sperm, continually moving between the two since both were intrinsically linked. In the country where she donated, all donors are anonymous, but she insisted that a note was kept on her file, stating that she would like to hear from her recipient(s) if they wanted to contact her, or if the law changes here in the future. Although she herself had no genetic connection with the donated embryos, they were part of the same ‘batch’ from which her son grew. This meant that she had a strong attachment to them; she worried that the child born would be unable to trace her. Alison’s interest in contact with her recipients and donor offspring relates to ideas about origins (and genetic connectedness), but not in the way law imagines it; for her connections are routed through her own life history (the circumstances that had led her to donate), and, genetically speaking, via her son. Her story indicates that personal biographies as well as relationships, are important ingredients when we consider the meaning of ‘origins’.
Whereas our analysis suggest that policy tends to construct donors as self-directed, ‘free-floating’ individuals (Nordqvist & Gilman, 2022), in the way in which ‘origins’ is constructed mainly through one vertical step, we found that for a significant proportion of donors, donating was intimately bound up in their own relational lives, especially with partners – same and different sex. From an early stage of their relationship, partners Claire and Iona had planned to have children together and agreed that Iona would carry the pregnancies using Claire’s eggs.
8
They accessed an egg-share programme; Claire donated half her eggs to an anonymous recipient, the remainder were fertilised with sperm from their selected donor, and the resulting embryos was transferred to Iona’s uterus. At the time of interview, the couple had two children born in this way. In terms of the analysis presented here, what is important about their case, was that it was clear that Iona (who had no genetic connection to the donor offspring) was notably more curious about the recipient family than Claire (the donor), and also more enthusiastic about the idea of future contact. Iona and Claire’s story was not unusual in the sample because a proportion of donors and their partners experienced donating as a ‘couple event’. Consider Ewan’s story: I do feel invested in [the egg donation], I want to know what happens as much as [my partner] does. You know, because you find out if these people have a baby and stuff. So yes, I want to know, […] I’ve tried to be a part of it all the way, you know. I don’t think she’s been to an appointment on her own […] Yes, it wasn’t just the sort of thing that was just for her […] I suppose we were both doing it in a way. (Ewan, partner of egg donor)
Ewan had taken time out of work to drive his partner to all the appointments, time he then had to make up for later by working evenings and weekends. For the periods that she was injecting herself with hormones to stimulate egg production and stopped drinking alcohol, he stopped drinking too. So donation could be experienced as a ‘joint project’, and in some cases the donor’s couple relationship underscored the entire enterprise.
These stories raise questions about the current construction of ‘donor origins’ in policy, because they suggest that donors and their families may well see themselves as originators of the donation, which in turn suggests that potential future contact will be anything but a dyadic event. In addition to partners, we found that donors’ parents could take an interest in their children’s donations. Stella, for example, whose son was an identity-release sperm donor, was quite vocal about feeling herself to be connected to his donor offspring: If anything happened to [my son] it would be nice if I could carry on and find out about [the donor-conceived children]. (Stella, parent of sperm donor)
But also, going back to Rachel’s story (who felt a very strong affinity with her recipient, above), it is clear that if her donor offspring ever contacts her, she will want to meet the mother. Similarly, for Becky (egg donor with a donor-conceived child, as above), if ever her donor offspring gets in touch, her child’s feelings will likely shape her response. The stories of Abby (who had two known recipient families wanting different things), and Louise (whose sister was a donor), illustrate how donation might set in train not just one dyad but extended networks of connections (see also Hertz, 2021; Hertz and Nelson, 2019). Nordqvist 's (2014) previous study suggests that the same can be true for recipient families. Taken together, our data then bring into view ‘origins’ as at least potentially relational, interconnected, ‘messy’, dynamic, polyadic and inter-generational, in turn suggesting the need to reconsider the current policy stance.
These sociological discoveries suggest that the way in which origins and ‘who the donation is about’ in policy bears limited resemblance to the way in which donation figures in donors’ own lives and relationships. Whose gametes went into the mix at conception might be one answer to the questions of ‘origins’, but as our data show, it is hardly the only answer. If we follow policy’s line of thought, Alison, who has no genetic link to the embryos that was created following her received double donation, has nothing to do with the donor-conceived person’s ‘origins’. But Alison thinks differently, and wants her details added to the file. For her, donating was an emotional and practical compromise where she considered the embryos siblings of her own son, but where she, as a single mum, were unable to carry them. Even so, they held a huge emotional charge for her. She knew that future contact was unlikely, but hoped for it (see also Hertz, 2021). Similarly, the stories of Iona and Ewan (partners experiencing having a strong involvement in donation, above) highlight that partners may see themselves as deeply involved, picturing themselves as being part of how it came about (Nordqvist, 2012). These findings can be explained by sociological and anthropological studies showing that identity is not as an individual achievement but emerge through relationships with others (May, 2013; Newton et al., 2023). Similarly, studies show that people ‘live’ kinship and understand ‘where they come from’ not as to do with one or two persons, but people, and the way they (inter)connect (e.g. Mason & Tipper, 2008). ‘Origins’ has to do with both ‘people and places’; with being ‘born and bred’ (Edwards, 2000). The point that origins are about connections with people, as opposed to an individualised person, is one that is poorly reflected in policy.
Conclusion
We started this article by asking if and to what extent law and policy has kept pace with social, medical and technical developments in family life. Taking the example of donor conception, seeing this from the viewpoint of donor communities, we set out to explore how well policy formulations of meaningful connectedness capture and reflect the experiences of donors and their personal communities. With family life diversifying, and where involvement of some kind in third party reproduction is becoming increasingly common, law and policy play a significant role in both regulating and protecting, as well as shaping and reflecting, the lived, everyday experience of this ‘new kinship’.
Overarchingly, our analysis shows that current UK law and policy fails to account for many of the ways in which affinities flow around and within donor communities. Where current policy discounts the donor-recipient connection as a connection that matters in its own right, our data suggest that for many donors, this connection can and does carry (sometimes profound) meaning. Where current policy extends agency and choice regarding accessing donation related information to donor-conceived people only, our data show that other people, who completely lack power therein, are affected too; donors’ own children is perhaps the most eye-catching group here. Where current policy configures choice and agency as individual (conferred onto the donor-conceived person), our data suggest that it needs understood as relational. And where current policy imagines ‘origins’ as one vertical step (to the donor), our data shed light on an array of others, partners especially, who experience themselves as being fundamentally implicated.
How can we understand these empirical discoveries? Sociological theorists understand the self as constituted in relation to others; people experience life relationally (Abbott, 2020; May, 2013). This means to say that the form, shape and meaning of a person’s life and identity are constituted through their relationships with other key people in their lives, for example, partners, parents, siblings, friends and so on (Nordqvist, 2019; Smart, 2007). Mason (2004) suggests that in order to understand individual life, and how it unfolds, we need to go beyond the individual and explore processes of relating shaping people's lives.
Recognising personal lives as relationally constituted, brings connections, relationships, reciprocal emotion, entwinement, memory, embeddedness and history into view. These dimensions operate in multiple, multi-layered ways within relationships (Smart, 2007); as our data demonstrate, people are entangled in complex and messy networks of connected relationships. Such notions of messy, networked entanglements are integral to kinship (Edwards, 2000). The empirical data suggest that at least for some (e.g. Louise or Stella) donation gives rise to a kind of kinship. Current policy needs to develop in ways that engage with knowledge that the making of a person is an infinitely complex and a multidimensional coming together of people, processes, experiences, places and so on.
This being the case, how might we explain current law and policy? Our analysis highlights that they are underpinned by the social values of agency, choice and self-actualisation, combined with notions of ‘origins’ defined as whose gametes went into the mix at conception. All of this is packaged in broader ideas of individualism where donor-conceived people, and donors specifically, are envisioned as ‘free-floating’ individuals. Put succinctly, current law and policy frames donation as a matter of the donor-conceived person’s individual right to know ‘their origins’, understood as to do with the donor. It acknowledges only one vertical step of kinship and it de-emphasises (or disregards) any other (lateral or horizontal), other than connections with same-donor siblings. The starkest and most extreme version of individualism is to be found in policy constructions of the donor, seemingly imagined completely without connections of their own. It is intriguing that a policy, so fundamentally about the importance of connection, remains framed by individualised assumptions of personhood and personal life (Carsten, 2004).
From the point of view of current policy, the decision to become a donor is framed as a light one that leaves little to no trace in donors’ own lives. 9 Our data highlight that for many donors, as well as their kin, this is far from reality. Our argument is not necessarily one of extending individual rights to donor kin, nor is it that all involved in donation desire more connectedness. Rather, our argument is that current law and policy, so firmly rooted in an individualised framework, fails to account for a key aspect of donation, namely that, experientially, it can give rise to affinities, which are multidimensional and complex in nature. These affinities are relational and ‘messy’ in their consequences. UK law and policy would do well to find ways of better accounting for the multiple affinities and relationalities that frame how donation is experienced by those whose personal lives are touched by it.
Footnotes
Acknowledgements
This article draws on original data from the ‘Curious Connections’ study (Nordqvist, PI), University of Manchester, generously funded by the UK Economic and Social Research Council 2017-2021. We would like to express our utmost thanks to the funder, to everyone who participated in the study, as well as to our Morgan Centre colleagues, University of Manchester, for support throughout.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was generously supported by the ESRC (Award ES/N014154/1). It also benefitted from UKRI Co-A covid-19 disruption funding 2021.
