Millbank, Jenni --- "Numerical Limits in Donor Conception Regimes: Genetic Links and "Extended Family" in the Era of Identity Disclosure" [2014] UTSLRS 9; (2014) 22 Medical Law Review 325

Last Updated: 7 March 2017

NUMERICAL LIMITS IN DONOR CONCEPTION REGIMES: GENETIC LINKS AND ‘EXTENDED FAMILY’ IN THE ERA OF IDENTITY DISCLOSURE

This article has been accepted for publication in (2014) 22 Medical Law Review © Jenni Millbank Published by Oxford University Press. All rights reserved.

Summary

This article critically examines the setting of limits on the number of children or family groups that may be formed with a single donor in assisted conception regimes. Originally, under conditions of anonymity, numerical limits were said to contain the risk of inadvertent consanguinity between offspring who would not know, and could not know, that they were genetic half siblings, and also between donor and offspring. The increasing embrace of identity disclosure regimes has led to calls for stricter numerical limits based on the purported harm of being exposed to ‘too many’ genetic relatives in the future. This article asks: how many is too many? And how do we know? The UK and Australian positions are examined, and placed alongside a discussion of qualitative research involving interviews with 20 parents of donor conceived children.

Keywords: donor family limits; donor identity disclosure; assisted reproduction; donor conception; non-traditional family forms; genetic links.

Jenni Millbank^[±]

I think that’s when it starts to get a little bit creepy and when it starts to get really bad publicity and things get a little bit, perhaps, scarier for the offspring; the thought that their donor donated just openly to hundreds of families or what have you and that their genetic family is so huge... I get images of − what’s the right word? You know, like wacko priest type prophet cult sort of numbers. You know, like that one bloke can create 100 children.

... I would hate for my daughter to find 100 siblings. But then, that said, she may not hate that. That’s only my thoughts. She may − you know, if that happened to her she may be really excited by the fact that there was so many of her around. I don’t know.

Rose (single mother)

INTRODUCTION

This article critically examines the setting of limits on the number of children or family groups that may be formed with a single donor in assisted conception regimes. The rationale for numerical limits is in the process of being reframed as a result of the shift away from anonymous donation. Originally, under conditions of anonymity, numerical limits were said to contain the risk of inadvertent consanguinity between offspring who would not know, and could not know, that they were genetic half siblings, and also between donor and offspring. Geographic spread was therefore given prominence in such policies. The increasing embrace of identity disclosure regimes^[1] has meant that fears about chance relationships with closely related others is now a less significant rationale. Increasingly, calls for stricter numerical limits are based on the purported harm of being exposed to ‘too many’ genetic relatives.^[2] Even in regimes without formal identity disclosure rules, reports of people discovering large numbers of genetic connections through informal registers have been used to argue for lower and more tightly regulated family limits.^[3] Thus in a very real sense the search for ‘more’ family turns into a quest for ‘less’ families. This article asks: how many is too many? And how do we know?

Australia and the United Kingdom (UK) often look to each other in the development of assisted reproduction policy^[4] and on this issue make fascinating comparators. While on a similar trajectory with disclosure, the UK and Australia appear to be pulling in opposite directions on family limits. In the UK, the use of identity disclosure donors have been required since 2005.^[5] In Australia, while the state of Victoria required identity disclosure in 1998,^[6] nation-wide implementation of identity disclosure did not occur until 2004/5, as a result of national ethics guidelines and licensing standards which required all clinics to only use gametes from donors who have consented to identity release.^[7] In 2011, an Australian federal parliamentary inquiry recommended the lowering of family limits to a nationally applicable level of four families per donor and expressed a ‘preference’ for only one family per donor despite having no power to achieve either number because this is a matter of state jurisdiction.^[8] In contrast, in the consultation in the UK into donation issues held in the same year by the Human Fertilisation and Embryology Authority (HFEA), the question concerning donation limits was framed around consideration of whether the family limit of 10 per donor should be raised, in part in response to the increasing number of Britons travelling abroad for reproductive treatments and the use of informal unlicensed donation services through websites.^[9] While the Australian government declined to implement the Senate Report^[10] and in the UK the HFEA ultimately determined to leave the number unaltered and instead examine ways to better utilise existing donor supplies, the issue remains a live one. In the Australian state of New South Wales (NSW) the family limit was reduced in 2010 but a 2013 government review has invited submissions on raising and/or redefining the limit.^[11] Debate has raged in the Netherlands with competing proposals to raise or lower the limit since the move to identity disclosure in 2005,^[12] while Sweden in 2010 removed their statutory limit altogether.^[13]

The goal of lower limits has been vociferously harnessed by those who believe that children should only be born to, and raised by, their genetic relatives, and thus oppose donor conception and same-sex family formation more broadly.^[14] This article focuses instead on the views and interests of those who are involved in assisted conception rather than those who are opposed to it.

In reviewing the evolving policy rationales for donor family limits, I draw upon the views and experiences of 20 parents who were recipients of donor sperm in licensed treatment in Australia. While the focus is on the perspectives of a set of parents, I seek to avoid the framework of ‘competing rights’ and oppositional placement of (potential) parents and (potential) children’s interests in assisted reproduction policy development. My research works from the relational premise that the interests of parents and children are intertwined.^[15] Parents are the people most directly invested, and specifically concerned with gauging and acting upon, both existing and potential future children’s anticipated needs in the lived context of their family life. This is not to suggest that offspring views and interests are unimportant; rather, that children’s rights or best interests, while proclaimed by virtually all who work in this field, are neither singular nor self-evident.^[16] This is demonstrated not least of all by the recent history of ‘best interests’ in assisted reproductive technology (ART) regulation, involving a complete reversal of policy in the space of 20 years – from anonymity and secrecy to open disclosure.^[17] Even in the present time the best interests principle in ART law and policy frequently leads to, or is used to rationalise, contradictory approaches.^[18]

Public submissions to Australian inquiries from some adult offspring of donor conception and their support groups in recent times have favoured lower numerical limits, variously preferring five, three and one family per donor.^[19] However, in the Australian Senate Inquiry, which specifically asked for views on the family limit, a number of groups and most of the donor conceived individuals who submitted did not address the issue of numerical limits at all (and instead proposed marked birth records or a national identity register as their major goals).^[20] In contrast in the HFEA Review, the 20 donor conceived respondents who gave answers on the issue of family limits were equally divided between those who wanted the limit to remain at 10 families and those who would prefer it to be lowered.^[21] From this very limited evidence base it is hard to draw any general conclusion about the views of donor conceived people as to what limit they prefer. The HFEA Review consultation documents differentiate between the views of donor conceived adults who had ‘always known’ about their conception and those who ‘found out as adults’. All those who found out as adults argued in the HFEA Review for a lower number, while those who had always known were generally more laissez faire.^[22] The views of adult donor conceived people are essential to this discussion, but those drawn from the era of anonymity may be deeply impacted by the inability to access donor identity and even offspring numbers, as well as common experience of deception and/or late disclosure.^[23] The views from past eras may therefore not be a good predictor of current and future offspring views or the ‘best interests’ of children that arise in the era of open disclosure.^[24] Further research into the experiences and views of offspring from the modern era concerning family limits and the utility of formal identity disclosure regimes is urgently needed.

The Study

The participants were drawn from a larger empirical study of the impact of law and policy on in-vitro fertilisation (IVF) users in Australia with a particular focus on decision-making concerning stored embryos.^[25] The sole inclusion criterion of the broader study was that participants currently or previously had stored embryos created through IVF.^[26] Among a total of 54 interviewees were 20 who had received donor sperm and a further four who had received donated embryos. In this article I address only the views of the sperm donor recipients: 19 women and one man,^[27] comprising seventeen different family groups. There were seven single women, four members of heterosexual couples and nine members of lesbian couples.^[28]

In semi-structured interviews, participants were asked how they came to select their donor, whether they felt they had sufficient choice, if they knew what the numerical limit and identity disclosure rules were that applied to them at the time they undertook treatment, and what they thought of those rules. Interview duration of donation recipients varied between 60 minutes to 90 minutes, with most lasting around one hour. Eighteen interviewees had children as a result of the donation at the time of the interview, ranging in age from a few months to 20 years, and the other two were pregnant at the time of interview. The only couple to conceive with a known sperm donor were heterosexual, and the donor was a close friend of the male member of the couple:^[29] all others conceived with an unknown donor.^[30]

The majority of past studies of donor conception families have focused upon the issue of whether,^[31] and more recently how,^[32] parents will disclose the fact of donor conception to their children. There are comparatively few recent studies of parents’ experiences of seeking information or making contact with the donor or other families formed through the same donor,^[33] and even fewer on the views or experiences of mature offspring.^[34] Most of these studies were survey based and few have qualitative dimensions that examine parents and offspring’s accounts of relatedness.^[35] None squarely address the issue of family numbers. Moreover, almost all were undertaken in the US, with very limited research coming from the open disclosure context in which ‘parental disclosure is both advocated and practised’ and ‘where the donor identity is accessible’.^[36]

The sub-set of parents under discussion is drawn from a larger study and is comparable to participant numbers in other qualitative research concerning donor conception families, which often draw on cohorts of 20-40 participants.^[37] This qualitative research provides important insights into the lived experience and understanding of numerical limits and genetic relatedness in open disclosure regimes of a kind that cannot be generated through large scale survey studies. This cohort is particularly valuable for the fact that it largely comprises parents who were considering family limits in light of anticipating their child’s access to donor information and potential future contacts with the donor or other offspring. In addition there was an acute experience of the impact of law reform: seven interviewees were in the process of IVF treatment when legislation in two states changed to reduce and redefine the numerical family limit.^[38]
While some aspects of the findings are localised in that they reflect particular dimensions of Australian law not common elsewhere and may not be representative of broader trends, I suggest that many of the themes that appear from these interviews are relevant across comparable jurisdictions grappling with these issues. Legal and policy issues posed by donor conception are increasingly internationalised challenges which must be addressed outside of jurisdictional frameworks. Both gametes and patients increasingly cross domestic and international borders in ART treatment. In the UK in 2010, 24 per cent of donated sperm used in licensed clinics was from overseas,^[39] with a comparable proportion likely in Australia.^[40] In addition, families may join informal disclosure registers hosted on the internet regardless of their geographic location or the operation of formal identity disclosure registers in their home jurisdiction. Interviewee experiences of joining international donor registers, travelling for treatment and importing gametes bear out these global trends, and suggest that research and law reform in this area must take place as part of a trans-jurisdictional dialogue.^[41]

The paper next examines overarching policy rationales for numerical limits before reflecting on how the experiences of interviewees in the study refract, contradict and complicate such rationales in the hope of informing further reforms with a more nuanced account of relatedness.

NUMERICAL LIMITS

Many jurisdictions set a statutory limit for the contribution of a single donor to the number of families formed. Numerical limits are generally expressed to cover all forms of donated reproductive material, that is, donated sperm, eggs and embryos, but in practice the issue is usually only applicable to sperm donation. Few egg donors contribute to more than one recipient family^[42] and moreover appear more likely to donate to a known recipient, while embryo donation is restricted by the number of available embryos and also appears to be limited by clinic and donor preference to donate to a sole recipient family.^[43] This article therefore reflects the literature in focusing on sperm donation in addressing numerical limits.

Australian national ethical guidelines have required since 2004 that each clinic take ‘reasonable steps to reduce the numbers of genetic relatives created through donor gamete programs’.^[44] In licensing conditions issued by the federal accrediting body in the early 2000s, the number was set at 10, in the absence of state law setting a lower limit.^[45] Of the three states which subsequently set statutory limits, only Victoria maintained a limit of 10;^[46] Western Australia lowered it to five in 2004;^[47] and NSW lowered it to five in 2010.^[48] The lower limit in both Western Australia and NSW coincided with reforms that mandated identity disclosure and government held central registers. South Australia is in the process of establishing a central register, leading one researcher to conclude that it is ‘likely’ family limits in that state ‘will reduce from 10 to 5, given the likely psycho-social effect on individuals and their families in later contact should the number remain so high’.^[49] Like Victoria, the UK did not lower the family limit despite the move to open disclosure. In the United Kingdom the limit is set at 10 families, a limit that has remained unchanged for over 20 years (with minor changes in definition).^[50]

Many regimes defer to the donor’s own sensibilities in allowing them to set a lower numerical limit. Legislation in the UK, and in the Australian states of New South Wales and Victoria (and national ethical guidelines) allow donors to specify a lower family limit based on the founding principle that gametes should only ever be used in a manner consistent with the provider’s consent.^[51] Interestingly, it appears that in the UK the option to elect a lower number is rarely exercised.^[52]

In the US there is no legislated limit, however since 2006 the American Society for Reproductive Medicine has recommended no more than 25 pregnancies in any population of 800,000 to avoid the ‘risk of inadvertent consanguineous conception’.^[53] The permissiveness of this limit is best illustrated by reference to cities: in Sydney this would be 140 pregnancies per donor, London would be 250, New York as a whole city would allow for nearly 600, or 70 pregnancies in Brooklyn alone. In fact most major US sperm banks appear to set far lower limits: those with limits publicly available on their websites set between 10 and 40 families worldwide.^[54]

The jurisdictional application of limits is increasingly porous. In the UK the HFEA has consistently held that the family limit applies to treatment that takes place in the UK.^[55] In recent years in Australia, some parents and donor conceived people have voiced concern about ‘serial donators’ and raised examples of men who were able to donate in more than one state to argue for a limit that reached beyond jurisdictional boundaries.^[56] Australian state regulators and the federal licensing authority have in recent years all purported to set global family limits.^[57] The practical enforceability of this move is questionable. Clinicians are under a duty not to provide treatment with a donated gamete if it is likely to exceed the limit, and at the time of treatment are under legal obligations to check their own records and make reasonable inquiries of the donor but must only request information on offspring numbers from other fertility providers if it appears necessary.^[58] For a clinic utilising imported sperm this means that they must ensure that their usage falls within the first five or 10 families (depending on the limit in their own jurisdiction), but they are under no obligation, nor could they be, to ensure that more families are not created elsewhere. Only one US sperm bank appears to set its limit at 10 families, with most ranging from 20 to 30. Many US and international sperm banks engage in export and in recognition of this their family limits are commonly set as a worldwide limit. As these providers make reporting of pregnancies and births by clinics a contractual condition of supply, they may ironically be better placed than domestic regulators to ensure that purported global limits are actually adhered to.

The way that numerical limits are defined varies considerably. Some jurisdictions set the limit by reference to the number of children born, while others are based on the number of families formed, thus permitting a flexible upper limit of the number of children, a number unknowable in advance.^[59] Setting the limit by reference to the number of families rather than children allows recipient parents to decide the number and spacing of their children without undue interference and time pressures. In addition, basing a limit on the number of families prioritises the genetic link between siblings in the recipient family,^[60] who might otherwise be prevented from utilising the same donor for later children.

There is further variation in statutory definitions concerning whether the donor’s own family, or families, are included within the number. This may have a significant impact. HFEA figures for example indicate that the proportion of newly registered sperm donors who already had their own children almost doubled in the decade to 2005, to 41% (due in part to the aging demographic of donors, a trend reflected in Australia).^[61] All three Australian states with legislated limits include the donor’s own family/ies in the numerical limit, effectively lowering the number in many cases, whereas clinics in others states are free to include or exclude the donor’s family in their calculation as they see fit. In contrast, in the UK the donor’s own family is not included.^[62]

POLICY RATIONALES FOR NUMERICAL LIMITS

As early as 1984 the Warnock Committee in the UK, when considering ‘the remote possibility of unwitting incest between children of the same donor,’ and ‘the risks of transmission of inherited disease’, recommended a limit of 10 children per donor but frankly acknowledged that there was ‘no conclusive argument for any particular figure’.^[63] The lack of evidence base for electing any particular figure resounds through parliamentary debates and briefing papers.^[64] In extensive comparative research into donor family limits Sawyer and MacDonald found that, while the consanguinity rationale is constantly used to justify a limit,^[65] it has never been applied in any thoroughgoing or defensible manner to determine what that limit should actually be. In some jurisdictions numbers were originally based loosely on statistical models taking into account population size and birth rates, while in others the number was simply set at whatever another jurisdiction had done, regardless of whether population sizes and spread or other factors were comparable.^[66] Wang and colleagues conclude in their survey that limits have generally been set by reference to cultural and social perspectives rather than any evidence base.^[67]

In identity disclosure regimes rationales, when offered, appear more focused on intentional social contact rather than inadvertent sexual contact, although they are often blurred together.^[68] Rather surprisingly, having argued for higher family limits in anonymous regimes on the basis that the consanguinity rationale is not demonstrated by evidence, Sawyer goes on to argue that in the absence of evidence, family limits should be lowered in identity disclosure regimes^[69] as a matter of urgency:

The quality of the future relationships between donors, their DI offspring and their respective families will be directly affected by the number of DI offspring each donor fathers ... the number of potential familial contacts needs to be contained, as soon as possible, to give donors and their offspring the best possible chance of having positive, sustainable and manageable relationships with their extended DI family members in the future.^[70] (Emphasis added)

Scholars, commentators and policy-makers commonly use the language of ‘protection’ from ‘risk’ and ‘harm’ in framing discussion of numerical limits^[71] and, conversely, promote the importance of ‘meaningful relationships’^[72] with genetic relatives as a positive objective. Thus identity disclosure is utilised as a principal justification for lower family limits by providing the prospect of knowing about, and consequently knowing, ‘too many’ genetic relatives.

This raises the question: how ‘many’ genetic relations is ‘too many’? This is not an issue that has been squarely addressed; rather, policy development and debate have largely proceeded on the assumption that identifying information will inevitably be sought and lead to direct contact between donor and offspring, from which an intimate and on-going relationship will be developed.^[73] Through such slippage, genetic relations become family members, and what is ‘excessive’ is implicitly determined by reference to existing family forms. So, for example, one professional group submission to the HFEA Review argued for a limit of four families on the basis that it ‘more closely resembles the number of “kin” fairly common in today’s society, including reconstituted families’.^[74] In response to Sawyer’s claims, Janssens et al note that ‘What is perceived as too many (or too large) is determined by culture and time’ and add that whether any number is experienced as ‘burdensome’ is highly variable among individuals.^[75] Janssens et al conclude that ‘there is no reason prematurely to view an ‘extensive family’, which may be compared with the extended family arising from donor offspring, as a burden.’^[76]

Below I reflect on interviewee experiences of family limits to illustrate the impact of law on this issue in terms of family formation decisions and treatment options and the dynamic meaning of numbers of genetic links to different individuals.

THE IMPACT OF LIMITS ON FAMILY FORMATION DECISIONS

Seventeen of the 20 interviewees in the current study had undertaken treatment in the context of donor identity disclosure (although for some this information was held by government registers and for others it was held by clinics). Three interviewees representing two families (one woman from a heterosexual couple and two members of a heterosexual couple) conceived in the late 1980s and early 1990s in the era of anonymity. It is striking that both of these families defied prevailing clinical advice at the time in disclosing the fact of donor conception to their children early in life. Kat and Toby, the couple interviewed together, went so far as to challenge their clinic’s policy in order to be able to use a known sperm donor because they believed in making this information and relationship available to their children. For all other interviewees, open disclosure was established as an expectation at the time of treatment, reinforced through the counselling and consent processes, and all those with children old enough to understand had already told them about the circumstances of their conception. Thus, in contrast to studies from the UK, none of the 17 families in the current study intended to keep this secret from their children.^[77] This may reflect the high proportion of single mothers and lesbian couples in the interviews, as they appear in other studies to be much more likely to disclose than heterosexual couples. (However, it is notable that the four members of heterosexual couples in this study were also pro disclosure.) It may also reflect a trend whereby those who create their families under identity disclosure regimes appear more likely to be comfortable in discussing the issue with their children. ^[78] Overwhelmingly, interviewees reflected that information about their donor’s identity was an important resource for their child, regardless of their own views or feelings. Yet the sense of the donor as a person of significance in the context of open disclosure was undermined by practices that appear to arise as a result of donor scarcity. At the same time that the donor is represented as a figure of increasing importance − as a man that their child would ‘very likely want to meet’ (Interview 34 quoting a clinic counsellor) − recipients were presented with a small range of donors and had very limited information upon which to make their choice. Some were unable to continue with the same donor following an unsuccessful treatment cycle, and others were prevented from using the same donor for subsequent children.

Scarcity and Significance: The Donor as Someone Your Child Will Very Likely Want to Meet

In the 2011 HFEA donation review, the Authority acknowledged that ‘demand for treatment with donated eggs or sperm continues to outstrip supply, resulting in long waiting times at some clinics particularly when patients want a donor from a minority ethnic group’ and noted that ‘Long waiting times for suitable donors is one of the main reasons people give for going abroad.’ ^[79] There have been continuous press reports of sperm shortage in Australia,^[80] a finding reflected by other researchers.^[81] While this study did not directly seek information on the availability of donor sperm, a number of aspects of spontaneously reported interviewee experiences concerned the impact of shortages. The study did not seek to quantify the degree or cause of scarcity; rather it noted a number of qualitative effects upon family formation decisions and options, including the choice of donor, duration of waiting times for treatment with local sperm, incidence of importation of sperm, and invasiveness and expense of treatment offered.^[82] In NSW, seven participants’ experience of scarcity was exacerbated by the fact that legislation was implemented while they were undergoing treatment which reduced the limit from 10 families to five women. The change in definition also had unintended consequences for lesbian couples, discussed below.

Several interviewees reported that having a small number of local donors to choose from, and limited information about each donor, rendered the process of decision-making stressful or difficult. Of those who utilised local sperm, the waiting time was between six and 14 months for treatment. Women in their thirties who spoke of waiting times frequently referred to their ‘biological clock’ ‘ticking’ or ‘running out’. Two women from ethnic minorities reported that it was impossible to find a match with local donor sperm.
The prospect of future identification of an unknown donor and the possibility of the child’s later contact with that man was extremely influential on women’s choice of donor.

I think for us that made a real difference in terms of the kinds of things we wanted to know about the donor and the way we thought about them. Not because we imagine that necessarily, you know, our child is going to have some kind of important relationship with that person. But if our child does turn 18 and wants to look for her biological father and may be in contact with this person, we kind of felt we wanted to know something about him as a person. We wanted to know more than the fact that he was 5' 11" and had brown hair and, you know, we wanted to be able to say to the best of our ability we chose someone who we thought sounded like a nice person. So that was important I think.

Sam (lesbian couple)

Virtually all interviewees reported choosing a donor who seemed like a ‘good’ person and one whose values were broadly in accord with their own, in the hopes that any future contact would be a positive experience for their child.^[83]

[The donor] represents that for us, someone who we've chosen, who we'll probably be friends with, just from reading his stuff on paper, and that we're kind of proud − he seems like a good role model − in some things that he wrote, we thought that sounds good. He sounds interesting. He sounds dynamic. He sounds like someone worthy to have on earth and maybe get to know in future. But even if we don't like him, at the moment on paper he seems like a good sort that we're proud that we've chosen. It was a big thing to choose a donor.

Jacqui (lesbian couple)

One recipient, Olivia, relayed that ‘coming to terms’ with open disclosure meant a re-ordering of priorities in donor choice.

So we looked at [the international donors essays] in detail and just sort of wanted to see what they were as a person ... when we changed donors we actually − I guess we’d come to terms a bit more with the fact that we were using a donor and that fact that we would be upfront about it. Obviously we knew that from the beginning so I guess we had had more time to come to terms with it. So we thought well there’s no point choosing a donor that resembled my husband because that’s not what we’re looking for anyway. We don’t want it to be it’s something we have to keep hidden and therefore they have to look like us or anything like that. So the physical characteristics didn’t really come into it, it came down to their personality as far as we could judge it.

Olivia (heterosexual couple)

The range of local donors to select from was very limited. One woman reported that she was only offered one donor once she reached ‘the top of the list’ and that his profile was read to her over the phone, while most others utilising local donor sperm were offered between three and six donors with fairly brief written profiles from which to select.

I think when we started the process there might have been about half a dozen donors ... and that number sort of dwindled a bit over time as we were looking at Australian donors ... it was more a case of discarding people who we didn’t like ... there was one ... we discarded on the basis that he sounded so awful that we would never want our kids at 18 knocking on his door. ... I thought no, no we don’t need this man to be related to us.

Kate (lesbian couple)

Others spoke of ‘ruling out’ donors they felt had opposing values to themselves or whose profiles they were ‘repulsed’ by, settling on their donor by a process of elimination as he was the only one left of the five or so presented. Having settled on a donor, some women were then surprised to find that after an unsuccessful treatment cycle they could not use the same donor subsequently, as either the supply had been exhausted or the recipient family limit had been reached in the meantime. A number of women referred to the additional stress this created in IVF, reflecting that it felt as if they were in a ‘race’.

One day ... I turned up in the morning to do my [treatment] and they said at the counter in front of everyone — well, not in front of everyone but, you know, in plain view of the waiting room — ‘oh, we can't use your chosen donor, you have to pick another one’. I went, ‘okay, that's not cool’. I've got five minutes to pick a donor, it's a big decision ... I couldn't make them see that that was not cool. I stood there in the hallway with a handful of profiles, and there were a couple of new ones, trying to pick.

Danielle (single mother)

Eight women had utilised sperm imported from the US because their Australian clinic was unable to supply local sperm at the time of their treatment.^[84] Those who had utilised international sperm were generally positive about the fact that they were able to choose from a larger pool of donors, with a broader and more detailed range of medical and social information about each man, and to ‘reserve’ a supply in order to be guaranteed the same donor for subsequent children. As discussed below, the importation of sperm from other jurisdictions may complicate the issue of family limits.

Limiting Pregnancies, Live Births, Families or Women

Legislative changes in NSW and Victoria which commenced operation in 2010 appeared to make only a semantic change when they replaced the previous category of ‘families’ with wording specifying ‘women’ in setting the numerical limit. However, lesbian couples suddenly found themselves counted as two ‘women’ rather than as one ‘family’. A number of couples in the study had planned for both women to give birth using the same donor. Two couples were denied access to donor sperm and two other couples were refused treatment with their own stored embryos to have additional children within the same family unit, because the ‘woman’ limit had been reached for their donor. Mothers reported feeling singled out, excluded and ‘punished’ by this change. This was particularly galling because those same states had very recently amended parentage laws to legally recognise both female parents in lesbian-led families formed through ART.^[85]

Look I don’t understand the legal basis for it, making a distinction between families and women because as far as I can see the only thing that it does is exclude lesbian families. I don’t see the reason to do that. Like our kids are legally siblings, they’re on each other’s birth certificates, they have the same parents. There’s no ... possibility of these children growing up and accidentally marrying and creating monsters, it’s never going to happen because our kids have the same parents on their birth certificate. So they’re as legally related as if they were full genetic siblings. So yeah, I think that it seems punitive except that it also seems careless.

Kate (lesbian couple)

The same effect would occur for infertile men who re-partnered with another woman and were prevented from using the same sperm donor for further children. For these families the only option left to have another child is to move on to use an additional donor unrelated to their first child. Thus a smaller number of ‘women’ per donor perversely translates into a larger number of donors per family. Law’s role in this scenario is arguably to undervalue genetic connectedness within the family unit because of its singular focus on policing the number of genetic links taking place outside of it. It is surprising that this change in wording took place without any apparent consideration of its effect on diverse family forms.^[86] In contrast, in the UK the HFEA SEED Report in 2005 specifically recommended the use of ‘a careful definition of family’ to provide ‘for the creation of siblings and half siblings in non-traditional families (step-families, same-sex families etc.) where a genetic link between siblings might be thought to be beneficial’.^[87]

All of the interviewees who discussed the issue of further siblings expressed the desire to have the same donor; often this was framed in terms of making them ‘more of a family’ (Jacqui).^[88] Although women in lesbian relationships and single mothers had elected to create a family unit in which their child is not raised by two genetic parents, this did not mean that they did not value genetic links, in particular between siblings. Indeed the reverse was arguably the case as a number of women expressed the significance of a ‘full’ or ‘100%’ genetic link between siblings as more important because it simplified already ‘complex’ relationship constellations.^[89]

He might struggle as he gets older, like particularly being a boy ... feeling a little bit isolated, a little bit different, all that kind of stuff. I think if he’s got a 100 per cent sibling, then the two of them can feel isolated together. Like they’ve always got someone by their side. If there’s different donors, it’s not the same thing. Like it’s just – you know I think the families where there’s children from two different fathers, perhaps struggle at times with that situation. I think our situation is going to be difficult enough without introducing that in it as well ... I just think it’s important they’re the same.

Apple (single mother)

Again it came back to that complexity. Like life is, for us, a bit more complex anyway. It felt important that our children were genetically linked ... So that, yeah, our kids would be the same family.

Jess (lesbian couple)

This link was not necessarily seen as inherent but rather a function of the value placed by others on genetics. The socially valued aspects of such links appeared significant.

I think it’s important particularly for our kids to have a sense of connectedness as a family. So it was quite important to me that they all have the same surname. If they can have a family resemblance or a sense of all coming from the same place, I think that’s important from the point of making them feel like siblings. Because when they go to school, they’ll have a sense of difference with other kids. If they have a sense of being siblings just like the other kids have siblings, then I think that that’s socially important.

Kate (lesbian couple)

These findings accord with those of Petra Nordqvist in her recent qualitative study of the conception pathways of lesbian families in the UK in which couples understood the genetic link between siblings, in conjunction with shared surnames and formalised relationship status through civil partnerships, as signifiers which bound their family together.^[90] While Nordqvist concludes this reflects a desire to ‘fit in’, I suggest that such findings may also demonstrate a perception by lesbian and single mothers that they must assert the validity of their family structure against a potentially hostile or unreceptive social environment. In doing so, they anticipated challenges ahead, of which interaction with the donor and other offspring was one, and this highlights the inter-relation of numerical limits and disclosure regimes.

As parents contemplated their children seeking out a donor later in life, several stated that it was a major factor in their preference for the same donor, because they wanted their children to be able to share in that experience, to support each other, and to be similarly situated.

Just we'd like the genetic link for Johnnie. We thought it would be lovely for him to have that genetic link with his brother or sister, it would be something they would share, that they could both look or not look, commiserate or not commiserate, depending on what happened at 18, whether the guy turns out to be a total twat, or whether he's really lovely, that they could share that and that would be a bit of a bonding experience for them.

Kylie (lesbian couple)

In particular, a number of women volunteered that they would be worried if one child could find their donor and the other child was not able to do so. Two parents went so far as to say that they would not have a subsequent child if they were unable to utilise the same donor to do so.

THE NUMBER OF GENETIC RELATIVES: HOW MANY IS TOO MANY?

In Australia, national ethics guidelines implicitly posit that a large number of genetic relatives is harmful when they preface the policy on donor limits, ‘persons conceived using donor gametes, and the donors of gametes need to be protected from the consequences of having many genetic siblings and offspring, respectively.’^[91] The following discussion addresses participants’ individualised understandings of what numerical limits meant to them as parents in order to unpack such ‘consequences’ and analyse the terms of ‘protection’. I explore interviewees’ sense of how many was ‘too many’ and how they understood limits to operate.

All but one interviewee believed that there should be an upper limit to the number of offspring who could be born from a single donor. Notably, two interviewees reported that they had been unaware that there was a family limit when they underwent treatment. For one woman this meant that she had deliberately chosen a donor she felt would be ‘unpopular’ as she wasn’t ‘hugely comfortable with having thousands of siblings’ and ‘didn't think that very many people would choose him’ (Danielle, single mother). Several other interviewees were not sure of what the relevant upper limit in their jurisdiction was and also appeared to be confused about which body set that limit (law or clinic).^[92] In addition there was considerable slippage between an understanding that there was a family limit in the abstract and actually having any specific information. A number of interviewees did not know how many other families had been formed at the time of their treatment, how many families had been formed since, nor that they were able to request this information from their clinic. This is surprising given that the national ethics guidelines instruct that clinics must ‘allow recipients of donated gametes access’ to information on the number and sex of persons conceived using the same donor’s gametes.^[93] These findings suggest that such information is provided on request rather than offered to patients as a matter of course.

When asked directly what the family limit should be, most favoured either five or ten families. These responses mirror the two options in place at present in Australia, and arguably reflected what respondents had experienced as ‘the norm’. Only one participant expressed a preference for a lower number of families – three; this being the number of families she was aware had already been created through her donor in addition to his own family.

Only one participant in the study absolutely rejected any numerical limit. Olivia, although herself in a heterosexual relationship, argued that numerical limits were motivated by prejudice and unjustified:

[Limits] come from this suspicion about people that need to do it. And there’s this assumption that either it’s lesbian couples and they’re not entitled to have children the same way that any other woman is. Or that it’s for women who left it too late or that kind of thing. Any of those people deserve to have a family if that’s what they want, in my view, regardless of their situation. ... And I think there’s an assumption that kids are going to marry and not know that they came from donated whatever and that they might meet and have in-bred children. I think in this day and age where there’s a requirement that you have to use open ID donors it’d be pretty rare I would think for children not to know where they came from. So I would think the risk would be really minimal that that would happen. Then I think there’s plenty of married men or single men who are going around and having lots and lots of children with people [laughs] and maybe not telling people. So there’s that risk equally in the population of people that don’t use donations. So I do think it’s unjustified actually.

Olivia (heterosexual couple)

It was apparent that some parents felt a level of anxiety about the prospect of unknown or very large numbers of genetic half siblings to their children; this was expressed in terms of creepiness, cults and the unnatural. As a reference point of excess, the number frequently cited was ‘100’.

... I really don’t like the idea of so many siblings being created from the one man. Obviously 10 to 15 children is a lot for one person if it was one family but it’s not crazy numbers. I think that one person creating say 100 children and then them all having three of their own children, it just spreads one person’s DNA perhaps wider than it was ever intended to be spread.

Rose (single mother)

At the same time, some participants actively sought this information out.

I’ve also joined the donor sibling registry so he’s got a chance to know other kids in the same situation and particularly his half siblings. There’s already six in the US, that we know of, six individuals who have used the same guy. So who knows how many siblings there are? ... I think that’s a little – it’s not frightening but I think that needs to be controlled.

Apple (single mother)

It emerged that many took the family limit and assumed multiple children per family; so a 10 family limit was commonly assumed to mean 30 to 40 children. This was also apparent in the HFEA Review where participants in focus groups ‘interpreted this as the donor being able to create up to 30 children’^[94], as have some submissions by donor conceived adults and their support groups to Australian inquiries.^[95] In fact it appears that this is very unlikely, because family limits are often not met, and moreover donor recipient families have somewhat fewer children than either other IVF patients or the national average.

Data on the actual outcomes of particular family limits is very limited. In Australia there are no national records of donors or offspring (only numbers of treatment cycles and births) so there is no way to determine average family numbers. Fertility Society of Australia data indicates that each donor recipient family in Australia averages 1.25 to 1.8 children^[96]; ie the most common outcome appears to be one or at most two children per family.^[97] If this average is accurate and the family limit was reached for every donor this would mean 6 to 9 children per donor in states with family limits of 5, or 12 to 18 children per donor in states with family limits of 10.

Three Australian states have central registers of donors. In Western Australia the register has been in place since 2004 and in NSW since 2010, both coinciding with a reduction in the family/woman limit to five. However, neither register has a reporting function so there is no public data indicating whether the family limit is generally reached.^[98] The Victorian register does have a reporting function and has been in operation since 1988, meaning that it is the most comprehensive central record in Australia.

The data from Victoria demonstrates that the limit per donor has not been consistently reached over a long period. The Victorian register shows an average of only 4.3 children per sperm donor. This is so even though the family limit of 10 only came into operation in the early 2000s, meaning that for half of the life of the register the limit did not apply.^[99]

In the UK centralised data is available dating back to 1991. The UK utilisation rate of donors appears even lower than in Victoria: on average most donors created only one or two families.^[100] Furthermore, in its recent donation review the HFEA noted that their data from the late 2000s showed that, like Australia, most recipient families had only one or two children.^[101]

Thus while parents and offspring appear to commonly assume 30 or 40 children follow from a family limit of 10, it appears that the outcome of a 10 family limit to date is a far smaller number of offspring: between two and four in the UK and around four in Australia. Future decision-making by policy makers and parents could be better informed by more reliable data if actual family numbers and average numbers of children per family were known.

An Experience of a Limit Exceeded

One interviewee, Anne, had experience of discovering that the local numerical limit had been exceeded. Having been advised by the clinic counsellor to choose a local donor so that it would be easier ‘when’ her children wanted to meet him, Anne was somewhat dismayed to then find that the clinic had only overseas donors to choose from. Anne was told that donors are ‘not meant to have more than five families’ but alerted to the prospect that the clinic’s local limit might not be infallible when a staff member added ‘but who knows?’ After having her first child Anne heard of the US Donor Sibling Registry when watching the Oprah show on television and, on joining, discovered that there were 12 other families from her donor:

When I got onto that donor sibling registry I was really shocked. I was actually ashamed that I had done this to my first son back then. I thought, oh my God, I've just put him into a big family, like an extended family and I did feel ashamed. Then I connected with the other families and I just − I see their children, they've got their photos of their children up and you can sort of see the similarities between the kids.
We're all sort of really attached to each other now and they actually − because most of the families are over in America or Canada − and they actually met ... So it actually feels like an extended family now ... We've got a Yahoo group so we do talk about it together. It's more about what it's going to mean to our children than what it means to us. I just think it's really lovely that we're all connected. It does feel like this extended family ... It sort of feels like they're cousins in a way.

Anne (single mother)

In this quote ‘a big family’ in the abstract was felt by Anne to be inherently harmful to her child, and a shameful dereliction of her duty as a parent, she added that it ‘almost seemed careless’. Yet once Anne connected to and felt herself to be a part of that extended family, it was experienced as a supportive and positive environment. Whereas ‘half siblings’ or ‘siblings’ may suggest a close genetic relationship which has been rendered asunder by placing children in different families, characterising the children as ‘like cousins’ − a designation elected by a number of participants − allows for a warm familial connection across different households as a normal incident of that relationship.

When Anne had a second child she decided that the significance of a genetic link between her children was more important to her than the number of other families created elsewhere (at that time 15), and chose to use the same donor again. Subsequently, through communication with other offspring families, Anne discovered that the limit set by the sperm bank she had used was 40 families worldwide. While the leap from a local limit of five families to a worldwide limit of 40 is a dramatic shift and one for which she had been wholly unprepared at the time, Anne did not regret her decision and her reflection on the experience a few years later was quite philosophical:

... my sort of feeling about it now, retrospectively, is that I'm glad there were 40 families because I was one of the last of the 40 families and so I wouldn’t have the family I got. Obviously, I assume I would have had a different family which I obviously would have loved as much but this is the family I've got and I adore it. So I'm glad that I was able to benefit from that limit.

Anne (single mother)

As with other participants who utilised overseas sperm, Anne felt reassured that there were only a few families who had been born locally, so there would be no ‘bumping into’ other families and any contact was something which she would be able to manage at her own rate. The geographic distance meant less chance of inadvertent contact but was not seen to impede intentional contact. Her considered view was that clear disclosure and understanding of the implications of differential family limits was much more important than the actual number.

Inadvertent Contact in a ‘Small Town’

There were several factors which contributed to participants’ sense of ‘many’ or ‘few’ genetic relatives. In particular, whether parents were mostly concerned about avoiding inadvertent contact or with making deliberate contact with the donor or half siblings influenced their sense of what the number meant. In tandem with these concerns was a varied experience of nearness (commonly expressed as ‘it’s a small town’) involving consideration of geographic spread as well as cultural dimensions of proximity such as the concentration of particular community groups.^[102]

Particularly for those parents who anticipated making deliberate contact with other recipient families from the same donor, the family limit was directly translated into a potential number of half siblings who had to be ‘tracked down’:

Let’s say 10 families and let’s say average two to three kids each. That’s 30 siblings ... Then it’s harder to find them all, harder to track them down. Yeah, it just gets exponentially harder.

Scoot (single mother)

My daughter’s genetic family, if she manages to track them down if she wants to track them down, at the end of the day there is probably only 20 children being created in five families, I would have thought, maximum. They should ... not [be] that different to her.

Rose (single mother)

For those focused on the prospect of inadvertent, rather than deliberate, contact, the actual number was less significant than the geographical spread of the offspring:

If there’s 10 or 5 or we’re the only ones it’s not really an issue to me ... But we quite like that [the donor] is from overseas so the chances of seeing him on the street or anything are just that bit more removed ... We were really comfortable with that.

Olivia (heterosexual couple)

Three other recipients echoed that the actual number was less important to them than the geographical spread of families. This suggests that while geographic spread was prioritised in the era of anonymity as a way of avoiding consanguinity, it may be of continuing relevance in the era of identity disclosure.

What is ‘small’ in a town can reflect more than objective population size. While ethics guidelines specify ethnic communities as groups which may require particular attention in setting lower limits, this study found that other communities may require similar attention.

Being in a lesbian community, it’s a pretty small community, and we know four other couples that have used the same clinic as we do, and we don’t even live in that state. So it really does worry me that one day we’ll have a child and actually [the children of those other couples] will be genetically related to my child.

Jess (lesbian couple)

Another woman added that the small number of available donors at such clinics further increased her sense of nearness:

The thought of taking my child to kindy and having all these other lesbian couples who could've chosen the same donor is a bit weird. ... it was a pretty small pool to choose from so the chance of other families having the same father − and just the fact you can't know. What do you say? Who's your donor, and you'd say the number. That's not something people talk about.

Jacqui (lesbian couple)

The Experience of Contact and Family Numbers
Intentional contact between offspring and previously unknown donors and between offspring from the same donor is a very recent phenomenon,^[103] with a small body of developing research, almost all of which comes from the US context involving voluntary informal registers.^[104] Research on mature offspring is drawn from survey based assessments, largely drawing on expressed wishes rather than actual experiences of contact.^[105] It is apparent from these studies that many donor offspring are curious about the donor, and virtually all of them believe that they are entitled to have identifying information about him.^[106] Donor conceived young people also express curiosity about other offspring families from the same donor. However not all donor offspring respondents express a desire for contact. The HFEA consultations with donor conceived adults in the UK found a marked difference in the attitudes of those who had known since birth and those who had found out as adults, with those who had always known expressing ‘little interest’ in identifying their donor.^[107] Of available research on contact experiences, most studies have addressed recipient parents, largely mothers. It appears that single mother and lesbian couple recipient parents in the US are more likely to pursue early contact with other recipient families.^[108] Applications to formal voluntary registers in Australia thus far are more commonly made by parents than offspring.^[109] As yet there is no qualitative research available on these experiences in the UK or Australia.

Naomi Cahn’s assessment of this evolving research is that ‘people are primarily searching for information’ related to self-identity, not for ‘replacement or “real” parents’ or families.^[110] For those with an interest in having access to information about genetic relatives through donation, this does not always translate into a desire for contact, and not all contact gives rise to a meeting, much less to an on-going social relationship. Indeed, while the studies to date suggest that contact is generally reported as a positive experience, the most common modes of contact in all studies were emails and phone calls, with only a minority of those who made contact ever meeting face to face.^[111] Thus to treat every genetic link as necessitating a subsequent on-going relationship of intimacy − ie, a family limit of less than 10 based on the idea that ‘a relationship with 30 siblings is too much to manage’ − is an unfounded assumption.^[112]

Neroli Sawyer refers to ‘risks associated with multifamily contact’ and the ‘possible negative psychosocial impact of multiple families interacting within the donor insemination network’ in a manner that suggests having several genetic relatives is inherently and inevitably harmful.^[113] This totally overlooks the prospect that there may also be benefits to having a number of different offspring families.^[114] One US based study of families who made voluntary contact found that although all of the 14 participant families were drawn from a clinic with a 10 family limit, only four had been matched to more than one family through the voluntary register (two had been matched to two families and two were matched with three families). All of the families had only one child. Interestingly, some participants made multiple contacts: when families made contact and didn’t ‘click’, they went on to find other offspring families with whom they felt a better sense of connection.^[115] It is possible that a lower family limit could disappoint donors, offspring and recipient parents who desire contact by reducing the possibility that it will occur at all.^[116]

Five interviewees in the current study had joined voluntary formal and informal registers and all of them provided some reflection on the issue of family numbers as a result. Of these five women, four had done so in order to make contact with other recipient families while their children were still very young (ages < 3 years). The exception was Gwen, a married woman who had conceived her children in the era of anonymity. At the time of the interview Gwen reported that her three now adult children showed little or no interest in knowing about the donor and that she herself had no interest in contact beyond thanking him. However, Gwen continued to be bothered by the fact that she did not know how many other children had been born either to the sperm donor or other recipient families and she was not aware that she was entitled to seek this information from her clinic. Thus information concerning offspring numbers was her prime motivation in seeking to know more about the donor.

The other four women who had joined voluntary registers were all single mothers by choice, a trend in keeping with the available research. All had undertaken treatment under either legislation or clinic practice which set the family limit at five. Scoot and Danielle had both utilised local donors. Scoot was aware of three other families (two single women and one heterosexual couple), she had attempted contact with all and had responses from the two single mothers, but had met only one of them face to face. Danielle had made contact with only one other woman who had utilised the same donor as herself and was disappointed to find that she had not yet been successful in becoming pregnant. Apple and Anne, by contrast, had utilised imported sperm. Apple had made contact with six families and reported emailing and swopping photos ‘every six months or so’. As discussed earlier, Anne had email contact with a group of 15 other families.

Within this quest was a greater sense of common experience and stronger social dimensions than that expressed in desiring contact with donors. Women sought out similarly situated families as part of a broader quasi-familial network in which some form of in person contact was anticipated even if it had not yet occurred:

In the ideal world, I think it would be nice to all meet up and go to Disneyland or do something like that. Because they’re scattered all over the US. For all of us to meet up and go somewhere or do something, make a holiday out of it, when they’re, I don’t know, maybe eight or nine or something.

Apple (single mother)

Mothers pursued these connections because they felt the genetic link between the children was, or could be, important to their children. But they did not consider themselves to be family members as such, and struggled to articulate new categories of relation.^[117] In addition to referring to the children as ‘half siblings’ they also referred to them as ‘like cousins’ or as ‘special’ siblings.

One of the other families, she started referring to my boys, to her daughter, as ‘your special brothers’. So that was fine with me. You know, she’s got her own brother but these are your special brothers. I hadn’t been using that term but when she was using it I felt, okay, well she can be your special sister.

I don’t know [the other offspring] well enough [to feel a particular connection]. Like if we saw them regularly and they were more involved in our lives and that, maybe I’d feel a strong connection in maybe a sense of love or protectiveness towards them. But you know, I love my godson and I don’t see him a lot ... But these children, one of them I’ve met a couple of times so I haven’t built a bond or anything with her. But the fact that she’s my child’s half sibling, there’s a connection just in that, or an affection, I suppose. But it wouldn’t be an affection of love at this point, if that makes sense.

Scoot (single mother)^[118]

Interestingly, two of these four women had discussed gamete exchange with other mothers who had offspring from the same donor in a way that suggests a new kind of family relation. When Apple wanted to have another child but found that there were no further supplies of sperm available from her donor, another recipient mother from the US offered a reserved supply that she no longer intended to use herself, and they were in discussion with the sperm bank about how to achieve this. Anne had initially considered donating her remaining embryos to an infertile friend. On discovering that she could not do so (by virtue of the donor having met the family limit), Anne was pursuing the idea that she ‘might be able to donate within the family, within the extended family’ – by which she meant one of the other 40 families worldwide formed with the same donor as herself.

CONCLUSION

This article has examined evolving policy rationales for the imposition of fixed upper limits on the number of families or offspring created from a single donor, focusing in particular on recent debates on this issue in Australia and the United Kingdom. The rationales for limits are in the process of shifting as a result of changes in these and many other jurisdictions, away from anonymity towards regimes of donor identity disclosure and cultures of openness concerning the fact of donor conception.

While the original premise of family limits in avoiding the objective risk of consanguinity was never well founded in fact, a subjective sense of such risk has continued to dominate policy development and debate. At the same time, a new rationale for family limits has arisen in anticipation of future contact following donor identity disclosure, both between donor and offspring and between offspring. This new rationale posits containing the number of genetic relatives so that the number of available contacts is manageable, in particular to protect the psychological well-being of offspring. Some versions of this rationale have slipped over from anticipation of possible contact to embedded assumptions about the kinds of relationships that will ensue, with some proposing lower family numbers so that ‘meaningful relationships’ can be created and maintained or traditional families resembled. The limited available research on the experiences of donor conceived individuals and families in seeking contact through voluntary registers to date does not bear out these latter assumptions. Not all offspring desire contact with donors or other offspring. Of those who did pursue contact, and whose parents pursued it early on their behalf, in existing studies most contact was limited or periodic and made through email rather than face to face meetings. Seeking information and a sense of understanding the connection or link appears to be the dominant motivation for those initiating contact in previous studies, rather than the desire for an intimate or on-going relationship. This was also true of the five mothers in this study who had sought information and contact with the donor and other offspring families, in which other offspring were seen as ‘like cousins’ rather than close family members. Social and cultural perspectives on genetic links, as well as actual experience of such relationships, must be carefully unpacked in order to determine what number is likely to be ‘burdensome’.

The translation of policy goals into actual family limits has been hampered by the scant evidence base available. There is very limited research evidence on the number of genetic links that donors, donor conceived individuals and their families would, in the context of open disclosure, desire, and even less on their experience of how the actual number of such links has impacted upon them. This limitation reflects both the small pool of such research and the fact that open disclosure norms and identity disclosure regimes are very recent. Because identity disclosure requirements were introduced in the UK and in most Australian states less than 10 years ago, there are no donor conceived adults yet using central registers to access identifying information about their donor as of right.^[119] There are also very few people on formal voluntary registers in Australia and the UK, with low rates of matches and no qualitative research data as yet on those experiences in either country.

Perhaps more surprisingly there is also scant data on what the relevant family limits to date have produced in terms of actual offspring numbers. There is no national register of donors in Australia and no publicly available information on the numbers of donors or offspring from two states of the three Australian states which do have central registers. While press reports focus on the spectre of the irresponsible donor producing dangerous, even grotesquely, excessive numbers of offspring,^[120] the limited information available from Australia and the UK suggests that family limits are far more likely to be underutilised than they are exceeded.

The Victorian central register dates back to 1988 and shows an average of 4.3 children per sperm donor, covering roughly equal periods in which a 10 family limit applied and in which there was no externally imposed limit. In the UK the HFEA Review found low utilisation rates of donors to date, such that a family limit of 10 since 1991 had resulted in an average of only one to two families per donor, with one to two children in each. Thus assumptions that 10 family limits produce 30 to 40 children per donor do not appear to be well founded based on the available evidence to date from both the UK and the Australian state of Victoria. In addition to more accurate data about outcomes, future policy makers need to think more carefully about what numbers mean in different contexts (including but not limited to, those of geographical or cultural concentration and dispersal).^[121]

The 20 parents interviewed in this research all consciously anticipated their child’s future interests and needs concerning knowledge of their genetic relations, including donors and donor half siblings, irrespective of, and indeed sometimes in opposition to, their own view of the significance of such links. All bar one of the interviewees supported an upper limit on the number of offspring from any donor as a result. I suggest that parents’ informed judgments about the number of genetic connections they think will be beneficial to their child ought to be given attentive consideration and their individual circumstances weighed in the balance. This is especially so given that legislated numbers to date have, to all intents and purposes, been plucked out of the air.

An illustration of the exclusion of parents’ decision-making capacity appears in the fact that the only flexibility concerning numerical limits built into current regimes is unilateral: it is available to the donor but not the recipient. Because the number itself has very different meanings for different people, recipients should also have the option of consenting to lower family limits.^[122] In addition, it is worth considering whether both donors and recipients could be given the option of giving informed consent to slightly higher family limits.^[123] Families formed through assisted conception, just like those with children through unassisted conception, may involve those who desire to have, and have contact with, a large network of genetic relatives, as well as those who do not. The current approach appears to assume that recipients are incapable of making an authentic assessment of their own^[124] and their potential children’s needs and interests. Yet this study suggests that parents were very mindful of these concerns.

The interest of donor conceived people in keeping the family limit set at a number where contact with the donor and other offspring, if made, could be managed is a very important one. But it is hard to see how this determines a number of three or five families as opposed to ten or fifteen. Further empirical research on the experience of connection and contact between adults and offspring from donor conception families in open disclosure regimes, rather than assumptions about the ‘likely’ effect of contact or ‘risks’ of a burdensome number of genetic links, is vital to assist in this understanding.

---

^[±] Professor of Law, University of Technology, Sydney. This research was supported by Discovery Project Grant 0986213 from the Australian Research Council. An earlier version of this paper was presented at the 2012 Law and Society Conference, Honolulu, with thanks to UTS: Law for financial support and panel participants for discussion. Thanks to Sonia Allan, Eric Blyth, Isabel Karpin, Anita Stuhmcke and the journal reviewers for their thoughtful comments on earlier drafts and Emma Butler and Eloise Chandler for research assistance.

^[1] In this article I use the term ‘identity disclosure regimes’ to refer broadly to laws which require the release of the donor’s identity at the request of the donor conceived person. These systems vary significantly, for example, concerning the age at which the donor conceived person can access information. For an overview of such systems see: E Blyth and L Firth, ‘Donor-Conceived People’s Access to Genetic and Biographical History’ (2009) 23 International Journal of Law Policy and the Family 174; Sonia Allan, A Cross-Jurisdictional Study of Regulatory Requirements and Practice Regarding the Recording of Donor Information and its Release to Donor Conceived People: A Report Prepared for the Winston Churchill Trust of Australia (Churchill Trust, Canberra 2012).

^[2] See eg J Scheib and A Ruby, ‘Beyond Consanguinity Risk: Developing Donor Birth Limits that Consider Psychosocial Risk Factors (2009) 91 Fertility & Sterility e12, a position taken further by Sawyer who posits ‘an obligation to control for potential risks associated with multiple interfamily contact’ and the need to investigate ‘the epidemiological impact of these extended donor insemination family relationships’: N Sawyer, ‘Prospective Application of a Five-Step Regulatory Assessment Model to Proposed Federal Sperm Donor Registry in Australia: Is it in the Public Interest?’ (2010) 17 Journal of Law and Medicine 608, 608. See also N Sawyer, ‘Sperm Donor Limits that Control for the “Relative” Risk Associated with the use of Open-Identity Donors’ (2010) 25 Human Reproduction 1089. See also Crawshaw, below n 49.

^[3] See eg M Duell, ‘Sperm Donor Revealed to Father 150 Children as Fears Grow for Spread of Disease and Incest’ Daily Mail (London, 6 September 2011). Naomi Cahn argues for an identity register in the US in order to enforce family limits: N Cahn, ‘Necessary Subjects: The Need for a Mandatory National Donor Gamete Databank’ (2009) 12 DePaul Journal of Health Care Law 203.

^[4] Note that the UK has unitary regulation of assisted reproduction, while Australia has a cumbersome mix of state law and federal ethical guidance (backed by national licensing conditions). While the UK has the much larger population, the number of IVF cycles undertaken in recent years in licensed clinics appears roughly the same in both countries, as is the proportion of cycles undertaken with donor sperm and eggs: Human Fertilisation and Embryology Authority (HFEA), Fertility Treatment in 2011 Trends and Figures (HFEA, London 2013), 14; A Macaldowie, Y Wang, G Chambers and E Sullivan, Assisted Reproductive Technology in Australia and New Zealand 2010, Assisted Reproduction Technology Series, cat. no. PER 55 (AIHW, Canberra 2012), vi, 47 and Supplementary Table S2.

^[5] Human Fertilisation and Embryology Authority (Disclosure of Information) Regulations 2004 (UK).

^[6] In Victoria the central register had consent-based donor identity disclosure from 1988-1998. For a detailed overview, see L Johnson, K Bourne and K Hammarberg, ‘Donor Conception Legislation in Victoria, Australia: The “Time to Tell” Campaign, Donor-Linking and Implications for Clinical Practice’ (2012) 19 Journal of Law and Medicine 803.

^[7] National Health and Medical Research Council, Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research (Australian Government, Canberra 2004, rev 2007) [6.1] (‘NHMRC, Ethical Guidelines’). Western Australia introduced a legislative regime for identity disclosure in 2004 and NSW did so in 2010. South Australian legislation to enable a donor register was passed in 2009 but has languished unimplemented since. These legislative regimes differ from the obligations imposed by national ethics guidelines in that the records are held in a central government register rather than in individual clinics. See Allan, above n 1, 49-52.

^[8] Senate Legal and Constitutional Affairs References Committee, Donor Conception Practices in Australia: Report (Commonwealth of Australia, Canberra 2011) (‘Senate Report’), Recommendation 29. The Committee also recommended the prohibition of imported gametes in order to ensure compliance: Recommendation 17.

^[9] See HFEA, Donating Sperm and Eggs, Have Your Say (HFEA, London 2011) (‘Have Your Say’) <http://www.hfea.gov.uk/docs/2011-01-13_Donation_review_background.pdf> accessed 16 October 2013; HFEA, F-2011-00232 – ‘HFEA Guidance on Sperm Donor Family Limit and Sperm Donation Outside HFEA Licensed Clinics’, 24 August 2011 <http://www.hfea.gov.uk/6794.html> accessed 23 October 2013.

^[10] The recommendation on numerical limits was ‘noted’ as a matter of state law and the recommendation on the importation of gametes was rejected: See Australian Government, Government Response to the Senate Legal and Constitutional Affairs References Committee Report, Donor Conception Practices in Australia (August 2012). The Response indicates that many of the other recommendations concern state law or have already been implemented in state law or federal ethics guidance.

^[11] NSW Department of Health, Assisted Reproductive Technology Act 2007 Statutory Review, Discussion Paper (NSW Government, Sydney 2013), 16-18, <http://www.health.nsw.gov.au/legislation/Documents/art-act-2007-statutory-review.pdf> accessed 23 October 2013.

^[12] P Janssens, A Nap and L Bansci, ‘Reconsidering the Number of Offspring Per Gamete Donor in the Dutch Open-Identity System’ (2011) 14(2) Human Fertility 106.

^[13] Ibid, 107.

^[14] See eg My Daddy’s Name is Donor, a report by Elizabeth Marquardt for the ‘Commission on Parenthood’s Future’, which concludes by urging parents not to conceive a child at all using donor gametes (Institute for American Values 2010), 79. Marquardt gave oral evidence to the Australian Senate Inquiry, as did Family Voice Australia and the Australian Christian Lobby. While making specific claims for lower family limits, each organisation acknowledged that their overarching objective was to prevent donor conception in toto: Senate, Legal and Constitutional Affairs References Committee, ‘Donor Conception in Australia Inquiry’, Transcripts, 29 October 2010, 19, and 2 November 2012, 15, 42. See also the views of religious organisations submitting to the HFEA Review, all bar one (the Church of England) argued for lower family limits and some for the prohibition of donor conception altogether: Human Fertilisation and Embryology Authority, ‘Donation Review Annexes’, 13 July 2011, 192-4, (‘HFEA Donation Review Annexes’) <http://www.hfea.gov.uk/6516.html> accessed 18 October 2013.

^[15] For a thoughtful discussion of the inter-relation of adult and child interests and relationships in donor conception, and the role of clinicians and the State in considering the well-being of children yet to be born, see Nuffield Council on Bioethics, Donor Conception: Ethical Aspects of Information Sharing (Nuffield Council, London 2013).

^[16] See also J Tobin, ‘Donor-Conceived Individuals and Access to Information About Their Genetic Origins: The Relevance and Role of Rights’ (2012) 19 Journal of Law and Medicine 742; G Cohen, ‘Beyond Best Interests’ (2012) 96 Minnesota Law Review 1187.

^[17] In this paper I use ‘open disclosure’ broadly to refer to legal and cultural contexts in which identity disclosure donors are mandated and parental openness about donor conception is prioritised, encouraged and facilitated, for example via ethical guidance and clinical licensing conditions. This is true of both Australia and the UK, see eg Human Fertilisation and Embryology Act 2008 (UK) s13(6C) licensing condition (a): providers must inform patients using donor conception of ‘the importance of informing any resulting child at an early age that the child results from the gametes of a person who is not a parent of the child’. In Australia the NHMRC Ethical Guideline 6.1.2 provides that ‘Clinics should help prospective recipients to understand the significant biological connection that their children have with the gamete donor. Recipients should be advised that their children are entitled to knowledge of their genetic parents and siblings; they should therefore be encouraged to tell their children about their origins’: above n 7. See also the ‘Time to Tell’ campaign by the Victorian Reproductive Treatment Authority (VARTA) <http://www.varta.org.au/telling-your-child-about-their-conception/> accessed 16 October 2013.

^[18] See discussion in R Thorpe, S Croy, K Petersen and M Pitts, ‘In the Best Interests of the Child? Regulating Assisted Reproductive Technologies and the Well-being of Offspring in Three Australian States’ (2012) 26 International Journal of Law, Policy and the Family 259. Notably one study of parental disclosure found that disclosing and non-disclosing parents used welfare of the child reasoning to opposite effect; in addition finding that these interests were understood as part of a web of wider current and future family and social relationships: D Shehab, J Duff, L Pasch, K MacDougal, J Scheib and R Natchtigall, ‘How Parents Whose Children Have Been Conceived With Donor Gametes Make Their Disclosure Decision: Contexts, Influences and Couple Dynamics’ (2008) 89 Fertility and Sterility 179 , 183.

^[19] See eg Senate Report above n 8 [5.25]-[5.26]; Parliament of Victoria Law Reform Committee, Inquiry into Access by Donor-Conceived People to Information About Donors – Final Report (Victorian Government, Melbourne 2012) (‘Parliament of Victoria Report’), [8.1].

^[20] See eg TangledWebs, ‘Submission 61 to Senate Inquiry’ (2010); International Donor Offspring Alliance, ‘Submission 115 to Senate Inquiry’ (2010); W and L Hewitt (founders of the Donor Conception Support Group), ‘Submission 155 to Senate Inquiry’ (2010). Submissions are online at <http://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Legal_and_Constitutional_Affairs/Completed%20inquiries/2010-13/donorconception/submissions> accessed 22 October 2013.

^[21] HFEA, ‘Have your Say’ above n 9, 9-10. See also, HFEA Donation Annexes above n 14, 164-166, [6.8]. Likewise of two organisations representing donor conceived people, one responded that the limit should remain at 10 while the other opted that it should be lowered: HFEA Donation Annexes, 189-190.

^[22] HFEA Donation Annexes above n 14, 165.

^[23] See eg V Jadva, T Freeman, W Kramer and S Golombok, ‘The Experiences of Adolescents and Adults Conceived by Sperm Donation: Comparisons by Age of Disclosure and Family Type’ (2009) 24 Human Reproduction 1909 (finding a correlation between late disclosure and negative feelings about donor conception) and AJ Turner and A Coyle, ‘What Does it Mean to Be A Donor Offspring? The Identity Experiences of Adults Conceived by Donor Insemination and the Implications for Counselling and Therapy’ (2000) 15 Human Reproduction 2041. See also the observation that ‘large numbers’ of those seeking information under a UK voluntary register had learnt of their origins ‘as adults and in adverse circumstances (family arguments; following a death)’: M Crawshaw, C Gunter, C Tidy and F Atherton, ‘Working with Previously Anonymous Gamete Donors and Donor-Conceived Adults: Recent Practice Experiences of Running the DNA-Based Voluntary Information Exchange and Contact Register, UK DonorLink’ (2013) Human Fertility online 1, 3.
^[24] So, for example, all of the donor conceived individuals who argued for a family limit of one to the Australian Senate Inquiry did so based on their inability to identify their donor or other offspring; thus they argued that having no other family was the only way that the risk of consanguinity could be completely eradicated. See eg K Dempsey, ‘Submission 114 to Senate Inquiry’ (2010); N Grech, ‘Submission 107 to Senate Inquiry’ (2010). This concern does not translate across to an identity disclosure regime, where, even if some offspring are unaware of their donor conceived origins, those who are aware can access the sex, month and year of birth of other offspring from the same donor. Nor does a family limit of one account for the interests of donor conceived people who have a positive desire to make contact with other offspring from the same donor.

^[25] The study was undertaken by three investigators from UTS: Law, Jenni Millbank, Anita Stuhmcke and Isabel Karpin with the assistance of Eloise Chandler. Ethics approval to conduct this research was obtained through the University of Technology, Sydney Human Research Ethics Committee (UTS HREC Reference Number: 2009-262A). For findings related to the broader study, see Special Issue: Law, Policy and Practice Concerning Stored Embryos in Assisted Reproduction (2013) 20 Journal of Law and Medicine 701-711, 759-830.

^[26] The study utilised a multi-method recruitment process, using both clinical avenues and broader advertising to the public and drew responses from all Australian jurisdictions except the Northern Territory. Data was collected over the two-year period beginning in July 2010 and concluding in July 2012. The study utilised a survey to gauge broad trends and then in-depth semi-structured interviews to explore participant views and reasoning. Quantitative data collected through the surveys was statistically analysed with the aid of SPSS. Qualitative data both in surveys and interviews were subject to thematic analysis. Each member of the research team undertook multiple readings of interview transcripts and survey open responses both throughout the data collection period and afterwards, coding emergent themes. Identified themes were then subject to comparative analysis among the entire research team to ensure uniformity of interpretation. All interviewees are represented by a pseudonym.

^[27] The dramatic under-representation of men in social studies of infertility is common, see discussion in K Throsby and R Gill, ‘It’s Different for Men: Masculinities and IVF’ (2004) 6 Men and Masculinities 330; A Greil, K Slauson-Blevins and J McQuillan, ‘The Experience of Infertility: a Review of Recent Literature’ (2010) 32 Sociology of Health and Illness 140. The low participation rate of men in the study was in large part due to the fact that the clinic recruitment avenue involved contact with ‘the patient’, ie the woman who was undertaking IVF. It may also be a reflection of the declining proportion of heterosexual couples utilising donor sperm, and/or the fact that it was an all-female research team. Notably, in the larger research project from which this subset is drawn, a total of nine men were interviewed, seven of whom experienced male infertility. Five of these men had utilised ICSI and their own sperm and one had utilised donor embryos, meaning only one male interviewee among nine had utilised donor sperm in the course of IVF (in contrast to 19 of 45 women).

^[28] Two heterosexual participants were interviewed as a couple and four lesbian participants were interviewed as two couples.

^[29] The pervasive use of unknown donors reflects the fact that the cohort had all undertaken IVF, and indeed several of them had entered the clinic system in order to access donor sperm. Known donors are more likely outside of the clinic context.

^[30] Issues of donor choice, identity disclosure and numerical limits canvassed in this article were not pertinent to the sole male interviewee, as he was in a close on-going relationship with the donor; thus the discussion below focuses on the views of the women.

^[31] See eg K Daniels, W Gillett and V Grace, ‘Parental Information Sharing with Donor Insemination Conceived Offspring: a Follow-Up Study’ (2009) 24 Human Reproduction 1099; M Crawshaw, ‘Prospective Parents’ Intentions Regarding Disclosure Following the Removal of Donor Anonymity’ (2008) 11 Human Fertility 95; J Readings, L Blake, P Casey, V Jadva and S Golombok, ‘Secrecy, Disclosure and Everything In-Between: Decisions of Parents of Children Conceived by Donor Insemination, Egg Donation and Surrogacy’ (2011) 22 Reproductive BioMedicine Online 485.

^[32] See eg M Kirkman, ‘Parents’ Contributions to the Narrative Identity of Offspring of Donor-Assisted Conception’ (2003) 57 Social Science and Medicine 2229; K MacDougall, G Becker, J Scheib and R Natchtigall, ‘Strategies for Disclosure: How Parents Approach Telling Their Children that They Were Conceived with Donor Gametes’ (2007) 87 Fertility and Sterility 524; E Blyth, D Langridgen and R Harris, ‘Family Building in Donor Conception: Parents’ Experiences of Sharing Information’ (2010) 28 Journal of Reproductive and Infant Psychology 116.

^[33] See eg J Scheib and A Ruby, ‘Contact Among Families Who Share the Same Sperm Donor’ (2008) 90 Fertility and Sterility 33; T Freeman, V Jadva, W Kramer and S Golombok, ‘Gamete Donation: Parents’ Experiences of Searching for their Child’s Donor Siblings and Donor’ (2009) 24 Human Reproduction 505.

^[34] See P Mahlstedt, K LaBounty and W Kennedy, ‘The Views of Adult Offspring of Sperm Donation: Essential Feedback for the Development of Ethical Guidelines Within the Practice of Assisted Reproductive Technology in the United States’ (2010) 93 Fertility and Sterility 2236; D Beeson, PK Jennings and W Kramer, ‘Offspring Searching for their Sperm Donors: How Family Type Shapes the Process’ (2011) 26 Human Reproduction 2415; V Jadva, T Freeman, W Kramer and S Golombok, ‘Experiences of Offspring Searching for and Contacting Their Donor Siblings and Donor’ (2010) 20 Reproductive Biomedicine Online 523; Jadva et al above n 23. For an overview see E Blyth, M Crawshaw, L Frith and C Jones, ‘Donor Conceived People’s Views and Experiences of their Genetic Origins: A Critical Analysis of the Research Evidence’ (2012) 19 Journal of Law and Medicine 769.

^[35] For an exception, see E Blyth, ‘Genes R Us? Making Sense of Genetic and Non-Genetic Relationships Following Anonymous Donor Insemination’ (2012) 24(7) Reproductive BioMedicine Online 719. The eight offspring were aged 44-65 at the time of the email interview.

^[36] See Blyth et al above n 34, 787.

^[37] See eg P Nordqvist, ‘“I Don’t Want Us to Stand Out More Than We Already Do”: Lesbian Couples Negotiating Family Connections in Donor Conception’ (2012) 15 Sexualities 644; M Kirkman ‘Genetic Connection and Relationships in Narratives of Donor-Assisted Conception’ (2004) 2 Australian Journal of Emerging Technologies and Society 1; V Grace and K Daniels, ‘The (Ir)Relevance of Genetics: Engendering Parallel Worlds of Procreation and Reproduction’ (2007) 29 Sociology of Health & Illness 692.

^[38] The interviewees also represent a range of experience of different laws and clinical practices, drawn from all Australian states and territories except the Northern Territory. Moreover, six interviewees had travelled from their home state to another state for treatment as a result of laws which discriminated on the basis of marital status, and three had undertaken treatment internationally as a result of temporary residence overseas. Five among 20 interviewees had experienced treatment in more than one jurisdiction.

^[39] HFEA, ‘UK and Overseas Donors’ <http://www.hfea.gov.uk/3413.html> accessed 23 October 2013. This increased from 12 per cent in 2005: HFEA, ‘Have Your Say’ above n 9, 4.

^[40] See discussion below n 56 and n 80.

^[41] In North America the conversation is radically different. Neither the US nor Canada has State regulation of family limits, which are set instead by professional bodies and entail individualised clinical interpretation and observance: See D Snow, ‘The Judicialisation of Assisted Reproductive Technology Policy in Canada: Decentralization, Medicalization and Mandatory Regulation’ (2012) 27 Canadian Journal of Law and Society 169. There are no government held donor identity registers (although many clinics offer open disclosure donors on a voluntary basis) and the most major step to date has been an amendment to Washington State law in 2011 requiring clinics to retain and disclose donor identity at offspring majority if requested: Uniform Parentage Act RSW §26.26.750. Thanks to Eric Blyth for bringing this latter development to my attention.

^[42] Compare for example the number of registered egg and sperm donors in Victoria to the number of children born through egg and sperm donation: as at June 2013 this was 955 sperm donors and 4154 births (ie 4.3 offspring per sperm donor), 1260 egg donors and 1488 births (ie 1.2 offspring per egg donor): VARTA, Annual Report 2013 (VARTA, Melbourne 2013), 14. See also Parliament of Victoria Report above n 19, 131.

^[43] See J Millbank, E Chandler, I Karpin and A Stuhmcke, ‘Embryo Donation for Reproductive Use in Australia’ (2013) 20 Journal of Law and Medicine 789.

^[44] From 2007 the guidelines included a list of factors to be considered in setting a family limit without actually prescribing what that number should be: NHMRC, Ethical Guidelines, above n 7, [6.3].

^[45] In 2002 the Reproductive Technology Accreditation Committee, Code of Practice for Assisted Reproductive Technology Units (Fertility Society of Australia, 2002) (‘RTAC Code’) stated that donor gametes would ‘normally not be used’ for more than 10 families ‘in a particular geographic area’: RTAC Code (2002) [5.10]. In 2008 and 2010 versions no number was specified: RTAC Code (2008); RTAC Code (2010), <http://www.fertilitysociety.com.au/rtac/> . In 2011 the RTAC advised that in the absence of state legislation there should be a ‘maximum of ten donor families per sperm donor’ and added that this ‘includes all families wherever the donor’s sperm is used, not just the number of families from one unit, in one city, or in one country’: RTAC, Advice to Units, Technical Bulletin 3 (April 2011), 2, <http://www.fertilitysociety.com.au/rtac/technical-bulletins/> accessed 23 October 2013.

^[46] Prior to 2010 there was no legislated limit in Victoria, however the Infertility Treatment Authority recommended a maximum of 10 families per donor as part of its licensing conditions from 2002: Johnson et al above n 6, 808.

^[47] Human Reproductive Technology Act Directions 2004 (WA) 8.1.

^[48] Assisted Reproductive Technology Act 2007 (NSW) s 27 (1).

^[49] M Crawshaw, ‘Report on Trip to Australia and New Zealand’ (University of York, 2011), 22, <http://www.york.ac.uk/media/spsw/documents/research-and-publications/CrawshawReportOnAustraliaNewZealandTripJanuary2011.pdf> accessed 23 October 2013.

^[50] Originally the UK limit was expressed as the number of children but was accompanied by an ‘exception’ for siblings; thus it was in effect a family limit: see note 87.

^[51] See eg Human Fertilisation and Embryology Act 1990 (UK) Sch 3; HFEA, Code of Practice 8^Th Edition (HFEA, London rev 2013), 11.39, 11.40; Assisted Reproductive Technology Act 2007 (NSW) s 27(1); Assisted Reproductive Treatment Act 2008 (Vic) s 17(1)(b); NHMRC, ‘Ethical Guidelines’ above n 7, [6.3.1].

^[52] Of UK donors registered between 2006 and 2008, 80% did not specify a lower limit, while 16% specified just one family (likely to be a known recipient): HFEA ‘Have Your Say’ above n 9, 19.

^[53] Practice Committee of the American Society for Reproductive Medicine (ASRM), ‘2006 Guidelines for Gamete and Embryo Donation’ (2006) 86 Fertility and Sterility (Supplement 4) S38, S43. This recommendation persists in the current guideline with the qualification that, ‘This suggestion may require modification if the population using donor insemination represents an isolated subgroup or if the specimens are distributed over a wide area’: ASRM, ‘Recommendations for Gamete and Embryo Donation: A Committee Opinion’ (2013) 99 Fertility and Sterility 47, 53.

^[54] Sperm Bank of California (10 families); Pacific Reproduction Services (20 families); California Cryobank (20-30 families); Fairfax Cryobank (25-30 families); Xytex (40 families); Cryos International (observance of national limits and no more than 1 pregnancy per 200,000 citizens in country of use). Cryos argued for a family limit of 50 at the HFEA Review: HFEA Donation Annexes above n 14 at 195. In Canada, ReproMed, the major sperm bank, limits donors to 3 births (plus siblings) per 100,000 population.

^[55] See eg HFEA, ‘Have Your Say’ above n 9.

^[56] This was identified as one of three ‘key concerns’ of the Senate Committee: Senate Report above n 8, [2.58].

^[57] See Human Reproductive Technology Act Directions 2004 (WA) 8.1; NSW Department of Health, ‘Information for ART Providers’ (2009), <http://www0.health.nsw.gov.au/resources/art/pdf/info_for_art_providers_a4.pdf> accessed 23 October 2013; RTAC Technical Bulletin above n 45.

^[58] See eg Assisted Reproductive Technology Act 2007 (NSW) s 27(2),(3).

^[59] See discussion in Janssens et al above n 12. The differences in eventual numbers of offspring per donor may be minimal: Janssens et al found that in identity disclosure systems the median limit on number of offspring was 20 and the limit of families was 5.5 (in anonymous regimes the median limit on offspring was 10 and families was 3); ie only if the families had more than three children each would family limits exceed offspring limits. As we will see in later discussion, families using donor conception appear unlikely to have more than two children on average.

^[60] A further instance of this priority is the exception made in identity donation regimes for the continued use of anonymous donors to create siblings for existing children: see eg HFEA, T54 Licensing Condition; Assisted Reproductive Treatment Regulation 2009 (NSW) Reg 20.

^[61] HFEA, Who are the Donors, Donor Analysis Report (HFEA, SEED Review, London 2005), 6: from 21% to 41%, <http://www.hfea.gov.uk/534.html> accessed 22 October 2013. In Australia it appears that the largest group of sperm donors currently are men in their 40s: Reproductive Technology Council of WA (RTC), Annual Report 1 July 2011 to 30 June 2012 (2012), 30; VARTA above n 42, 12.

^[62] See eg HFEA, 8^th Code of Practice above n 51, which is directed to keeping track of the families created in treatment, up to 10: 11.40; 11.44-50.

^[63] Emphasis added. Cited in N Cahn, ‘Accidental Incest: Drawing the Line – or the Curtain? – For Reproductive Technology’ (2009) 32 Harvard Journal of Gender and Law 67, 83. In Canada the Royal Commission echoed the original wording of UK legislation in recommending no more than 10 live births per sperm donor: Proceed With Care: Final Report of the Royal Commission into New Reproductive Technologies (Minister of Government Services Canada , Ottawa 1993), 1027.

^[64] In 2008 the Attorney-General of Victoria stated that the ‘10 woman’ provision would ‘limit the pool of people who are closely related to each other’ and ‘protect the well-being of donor conceived persons’: Victorian Parliamentary Library, Current Issues Brief No 5 of 2008, Assisted Reproductive Treatment Bill (Parliament of Victoria, Melbourne 2008), 6. There was no discussion of the family limit in the law reform inquiry which preceded the legislation: Victorian Law Reform Commission, Assisted Reproductive Technology & Adoption, Final Report (VLRC, Melbourne 2007). In NSW, the Attorney-General stated that the Act ‘recognises the interests of people involved in treatment by limiting the number of women who can be provided with gametes from the same donor to five. This allows families to have several genetically related children whilst reducing the risk of donor offspring unknowingly entering a relationship with a blood relative’: NSW Legislative Council, Debates, Assisted Reproductive Technology Bill 2007, 27 November 2007, 4384-4385 (John Hatzistergos). In Western Australia the Reproductive Technology Council states that the limit of 5 families is ‘to minimise the risk of genetic disease arising from inadvertent marriage of half siblings’ and because ‘Feedback from donor conceived adults suggests that it may be less bewildering to know that you are related to others in up to 5 other families’: ‘Questions and Answers About the Donation of Human Reproductive Material’ (2012), 16, <http://www.rtc.org.au/events/docs/2012Q & A.pdf> accessed 23 October 2013.

^[65] N Sawyer and J MacDonald, ‘A Review of the Mathematical Models Used to Determine Sperm Donor Limits for Infertility Treatment’ (2008) 90 Fertility and Sterility 265.

^[66] Ibid.

^[67] C Wang, M-Y Tsai, M-H Lee, S-Y Huang, C-H Kao, H-N Ho and C K Hsiao, ‘Maximum Number of Live Births Per Donor in Artificial Insemination’ (2007) 22 Human Reproduction 1363.

^[68] See eg a chapter entitled ‘Risk of Consanguinity and Limits on Donations’, which introduces the issues as, ‘the risks of consanguine relationships and, in particular, the impact on the ability of donor conceived people to have meaningful relationships with donors and half-siblings’: Senate Report above n 8, [5.1]. See also n 64.

^[69] The reverse is presently the case, with family and offspring numbers on average higher in open disclosure regimes: see Janssens et al above n 12, 107. This argument is flawed for a number of reasons. It does not take into account perceived risk, ie, that not knowing who may be a genetic relative may cause genuine apprehension regardless of objective likelihood of a genetic link. This appears to be a significant issue for donor conceived individuals from the era of anonymity: see eg Senate Report, ibid and submissions above n 24. Further, it is not tenable to treat any anonymous regime as if it will always remain so: inadvertent, voluntary and retrospective disclosure, are all possibilities.

^[70] Sawyer above n 1, ‘Sperm Donor Limits’, 1093. To the contrary, both the British Fertility Society and Janssens and colleagues have argued that in the absence of evidence of harm current limits should be maintained, see: British Fertility Society Working Party on Sperm Donation Services in the UK, ‘Report and Recommendations’ (2008) 11(3) Human Fertility 147; Janssens above n 12.

^[71] See eg n 64.

^[72] See eg Scheib and Ruby above n 2, NSW Department of Health above n 11, 19.

^[73] See for eg NSW, ‘If donated gametes are not used until an extended period of time after donation, the potential for contact, or for the person to develop a meaningful relationship with their donor is substantially compromised, due to increasing age of the donor. The Act therefore imposes time limits on the storage and use of the donate gametes’: above n 11, 19. The major rationale provided by the Australian Senate Inquiry for its recommendation to ban the importation of gametes was that this would ‘enhance access ... to information about their donor ... and enable donor conceived people to establish relationships with any genetic siblings and the donor’: Senate Report above n 8, [7.37].

^[74] Project Group on Assisted Reproduction (PROGAR), a professional body of social workers: HFEA Donation Annexes above n 14, 194. The arbitrary nature of selected figures is also illustrated by the fact that PROGAR had advocated for six families per donor in the previous SEED Review only five years earlier: see British Fertility Society above n 70.

^[75] Janssens above n 12, 111, 109.

^[76] Ibid 111.

^[77] See eg Readings et al above n 31; HFEA Annex, above n 14, 97.

^[78] See S Isaksson, G Sydsjo, A Skoog Svanberg and C Lampic, ‘Disclosure Behaviour and Intentions among 111 Couples Following Treatment with Oocytes or Sperm From Identity-Release Donors: Follow Up at Offspring Age 1-4 years’ (2012) 27 Human Reproduction 2998. Among a small study of parents in the US who chose open identity donors, heterosexual parents were as likely as lesbian and single mother families to disclose. Moreover the authors concluded that single mother and lesbian households were ‘more different than alike’: J Scheib, M Riordan and S Rubin, ‘Adolescents With Open Identity Sperm Donors: Reports from 12-17 Year Olds’ (2005) 20 Human Reproduction 239, 249.

^[79] HFEA, ‘Have Your Say’ above n 9, at 5 and 3, respectively. In 2012 HFEA created a National Donation Strategy Group with the aim of increasing donation: <http://www.hfea.gov.uk/7138.html> accessed 23 October 2013.

^[80] See eg P Thomson, ‘Shortage of Sperm Donors’ Canberra Times (Canberra, 16 June 2013); ‘Critical Sperm Shortage in NSW’ The Daily Telegraph (Sydney, 12 April 2010); ‘Australia Facing Sperm Donor Shortage’ ABC News (Sydney, 17 July 2008). Waiting times of 18 months were recently reported for treatment in Western Australia: C O’Leary, ‘Donor Dads Sought Offshore’ The West Australian (Perth, 15 July 2013). See also reports of chronic shortages and long waiting times on the webpage of a major Australian clinic: <http://ivf.com.au/fertility-treatment/donor-program/require-a-sperm-donor> accessed 23 October 2013. A licence was recently granted for the importation of eggs into Victoria: J Medew, ‘IVF Deal Sees American Eggs Heading Down Under’ The Sydney Morning Herald (Sydney, 10 March 2013).

^[81] In fieldwork around Australia in 2010, Marilyn Crawshaw found an average 12 month waiting period for donor treatment, above n 49.

^[82] A number of women initially sought intrauterine insemination (IUI), a relatively low cost low tech process of transferring tested sperm in order to attempt pregnancy because their fertility was untested. Several reported that clinics either restricted them to a small number of IUI attempts (between 1 and 3) before ‘moving on’ to IVF or began with IVF. The emphasis on IVF was explicitly framed in terms of the lack of available donor sperm. Cf National Institute for Health and Clinical Excellence, ‘Fertility: Assessment and Treatment for People with Fertility Problems’ (2013) (‘NICE Clinical Guideline 156’) which recommends six cycles of IUI before IVF if a woman’s fertility is untested, 10. Some women also reported the use of ICSI to ‘conserve’ donor sperm.

^[83] This was an explicitly child-centred process, contrary to the ‘mating by proxy’ ‘evolutionary’ thesis proposed in I Rodino, P Burton and K Sanders, ‘Mating by Proxy: A Novel Perceptive on Donor Conception’ (2011) 96 Fertility and Sterility 998.

^[84] In addition respondents indicated that two major clinics did not provide donor sperm at all and would only treat them if they self-recruited a donor.

^[85] See Status of Children Act 1996 (NSW), s 14; Status of Children Act 1974 (Vic), s 13.

^[86] The 2013 review has flagged this issue as one for reconsideration following reports of its impact: NSW Department of Health above n 11, 16-18.

^[87] HFEA, SEED: A Report on the Human Fertilisation & Embryology Authority’s Review of Sperm, Egg and Embryo Donation in the United Kingdom (HFEA, London 2005), 11. Note that prior to 2005 the UK legislation had specified 10 ‘live births’ but contained an ‘exception’ for later siblings.

^[88] Not every interview raised this point, as some had completed their families, or had multiple embryos still in storage and so had not turned their minds to it. See also C Jones, ‘Looking Like a Family: Negotiating Bio-Genetic Continuity in British Lesbian Families Using Licensed Donor Insemination’ (2005) 8 Sexualities 221, discussing this finding among lesbian couples in the context of (then) donor anonymity in the UK.

^[89] On the complex ways in which parents and children situate themselves in relation to ‘canonical narratives’ of genetic connection, see M Kirkman ‘Genetic Connection and Relationships in Narratives of Donor-Assisted Conception’ (2004) 2 Australian Journal of Emerging Technologies and Society 1.

^[90] Nordqvist above n 37.

^[91] NHMRC, ‘Ethical Guidelines’ above n 7, [6.3], emphasis added.

^[92] Other findings of our study suggested that confusion over family limits was worse in states without legislation. Limits set by national ethics guidelines are particularly oblique in Australia in that they appear in licensing conditions, not the guidelines themselves.

^[93] NHMRC, ‘Ethical Guidelines’ above n 7, [6.10].

^[94] HFEA, ‘Donation Annexes’ above n 14, 164 and 165.

^[95] See eg Donor Conception Support Group, ‘Submission No DCP10 to Victorian Inquiry’ (August 2010).

^[96] Fertility Society of Australia, ‘Submission No 106 to Senate Inquiry’ (October 2010).

^[97] Indeed this was also true of the interviewee cohort, for whom the average number of children per family at the time of the study was 1.3; although eight interviewees were hoping for a second child. Scheib and Ruby note that a review of the files of all donor insemination families at the Sperm Bank of California found that 69.7% had only one child: J Scheib and A Ruby, ‘Contact Among Families Who Share the Same Sperm Donor’ (2008) 90 Fertility and Sterility 33, 38.

^[98] In NSW the register records births through donor gametes or surrogacy (835 as at August 2013) but does not keep a separate tally of donors: Email from G MacCallum, NSW Department of Health, 21 August 2013, on file with author. While the Reproductive Technology Council of Western Australia plans to draw this data together in the future it is not available at the time of writing: Email from M Harris, RTC, 13 August 2013, on file with author.

^[99] See above n 42. Further, some insight about offspring numbers from the pre-disclosure era may be gleaned from a recent donor consultation conducted by VARTA in collaboration with Monash University: VARTA, Consultation With Donors Who Donated Gametes in Victoria, Australia before 1998: Access by Donor-Conceived People to Information about Donors, Report to the Victorian Government (VARTA, Melbourne 2013) <http://www.varta.org.au/donor-consultation/> accessed 16 October 2013. Monash University researchers interviewed 42 donors (6 egg donors and 36 sperm donors) who had donated prior to 1998 in order to seek their views on the issue of retrospective identity disclosure. Ten donors did not know whether any births resulted from their donation, while the other 32 reported numbers of offspring ranging from none to 36: at 14. In response to inquiry from this author, Monash and VARTA provided a detailed breakdown of these figures (‘Number of children born’): Email from VARTA, 11 September 2013, on file with author. Taking the 32 donors who knew of births, the average number of offspring was 6.3. Twenty donors reported less than five offspring, seven donors reported between six and 10 offspring and five donors reported a number of offspring over 10 (being 12, 13, 15, 21 and 36 respectively). Excluding the egg donors, the average number of offspring for sperm donors was 7.1 with a median of five offspring per sperm donor. It is notable that these are figures from a time when there was no externally imposed family limit in that jurisdiction. Although this is a small sample and it is impossible to know whether or not it is representative, it is a valuable source of information given that there are no public records of donor or offspring numbers from that era.

^[100] HFEA, ‘Have Your Say’ above n 9, 19.

^[101] Ibid.

^[102] One woman utilising an ethnic minority donor quickly realised that she had a child with the same donor as a distant acquaintance of the same minority group when they bumped into each other in the clinic waiting room while both were undertaking treatment in the hope of having a second child.

^[103] Naomi Cahn proposes ‘donor-conceived family communities’ as a term to cover these connections in ‘The New Kinship’ (2012) 100 Georgetown Law Review 367.

^[104] See eg V Jadva, T Freeman, W Kramer and S Golombok, ‘Sperm and Oocyte Donors’ Experiences of Anonymous Donation and Subsequent Contact with their Donor Offspring’ (2011) 26 Human Reproduction 638; Scheib and Ruby, above n 85. For an overview see Blyth et al above n 36.

^[105] See eg Beeson et al above n 34; Mahlstedt et al above n 34; Scheib et al above n 78.

^[106] See eg Mahlstedt et al above n 34.

^[107] HFEA Donation Annexes above n 14, 150. See also the submission by an Australian health journalist to the Victorian Inquiry: ‘I have never met my donor “father”, and I have no desire to do so. I do not see this lack of contact with my biological father as something missing in my life, and I have no hurt at the fact of my creation. What does cause me hurt, however, is the idea, constantly repeated by small numbers of donor-conceived children, and in popular media representations of the issue, that there must be something wrong with your life if you do not know your biological father. ... What a tragic and fruitless search is being pushed onto donor-conceived children by the idea that the only place they can find such personal and cultural meaning is through a biological connection rather than cultural and personal connections’: A Corderoy, ‘Submission 77 to Victorian Inquiry’ (October 2011).

^[108] See eg Freeman et al above n 33; Beeson et al above n 34.

^[109] See eg VARTA above n 42, 14; Parliament of Victoria Report above n 19 at 132; RTC above n 61, 21. For further discussion see J Millbank, ‘Identity Disclosure and Information Sharing in Donor Conception Regimes: The Unfulfilled Potential of Voluntary Registers’ forthcoming.

^[110] N Cahn, ‘Legal Parent Versus Biological Parent: The Impact of Disclosure’ (2012) 19 Journal of Law and Medicine 790, 795, and further discussion 796-798.

^[111] Note that in Jadva et al above n 34, of the 22 ‘meetings’ only eight were in person; in Scheib, above n 104, of the 14 families in contact only two had met in person.

^[112] See eg Neroli Sawyer arguing for lower family limits (in identity disclosure regimes only) to ‘optimize the quality of the relationships in these new “families”’: Sawyer, ‘Sperm Donor Limits’ above n 1, 1093.

^[113] N Sawyer, ‘Prospective Application of a Five-Step Regulatory Assessment Model’ above n 1, 608 and 609.

^[114] Janssens et al also note that contacts are likely to be spread over time: above n 12, 110.

^[115] Scheib and Ruby, above n 33. In the proverbial sense, other offspring families appear to be more like friends than family: you can choose them.

^[116] Note that the VARTA consultation reported on several donors who had joined voluntary registers and were disappointed that no contact has been made, above n 99.

^[117] Note also Blyth’s recent study of several donor-sibling adults in the UK in which interviews were conducted by email: most participants used ‘brother’ and ‘sister’ in quotation marks and collectively referred to themselves as a ‘clan’ rather than family: Blyth above n 35.

^[118] Note that ‘special sister’ was also a term used with their children by embryo donors regarding genetic siblings born to other families as a result of the donation: Millbank et al above n 43.

^[119] In Victoria the 1998 register requires identifying information to be released at the request of the offspring: the first of whom will reach 18 in 2016. The preceding 1988 register requires the consent of the donor before identifying information is released. This process was successfully managed in the past by a specialist agency, see Johnson above n 6. In the near future consent based access to identity disclosure is likely to be made available for offspring born before 1988: see Victorian Government, Response to Inquiry into Access by Donor-Conceived People to Information about Donors (Victorian Government, Melbourne 2013) <http://www.parliament.vic.gov.au/lawreform/article/1468> accessed 22 October 2013.

^[120] See eg SK Templeton, ‘Incest Rules Breached as Sperm Donor Fathers 17 Families’ The Sunday Times (London,18 September 2011); R Smith, ‘British Man “Fathered 600 Children” at Own Fertility Clinic’ The Telegraph (London, 8 April 2012).

^[121] The HFEA notes that based on its data the median distance between families created from the same donor in the UK is 36 miles and number of donor conceived families for those donors who created 10 families was 2.7 families per town (with a maximum of five families occurring in three major UK cities): HFEA ‘Have your say’ above n 9, 21. There is no comparable information for any Australian jurisdiction.

^[122] In their submission to the HFEA Review, the Cambridge Centre for Family Research suggested this option: HFEA Donation Annexes above n 12, 196.

^[123] This would need to be addressed through the counselling and consent processes, and would require, at a minimum, information about how many families and offspring had already been created by the donor, the number of the donor’s own children as well as information on median family and offspring numbers in the current context.

^[124] See eg J Madeira, ‘Woman Scorned? Resurrecting Infertile Women’s Decision-Making Autonomy’ (2012) 71 Maryland Law Review 339.