Donor Conception and (Dis)Closure in the UK: Siblingship, Friendship and Kinship

Donor conception and (dis)closure in the UK: siblingship, friendship and kinship

Jeanette Edwards

University of Manchester

Draft article for Special Issue of Sociologus:

Imaginations and Bodily Substances: Making Kinship in Switzerland and Beyond

Editors: Nolwenn Bühler and Anika König

ABSTRACT

As many aspects of assisted conception become familiar, others emerge not only as unfamiliar, but also unpredicted. This article focuses on a newly emergent kin figure - the donor sibling. It suggests that the anthropology of friendship might have as much to tell us about the significance of the donor sibling in Euro-American kinship thinking as the anthropology of kinship. The article locates the donor-sibling in changes in UK legislation and policy that have increasingly promoted more transparency and ‘openness’ in donor conception.

donor conception, donor sibling, friendship, kinship, siblingship

There has been a steady trend towards more openness and transparency in the field of assisted reproductive technology (ART) in the UK. Away from an era when parents were told prosaically to 'go away, enjoy your child and forget the treatment', towards an insistence that children should be informed, at an early age, about the facts of their conception. This trend is exemplified in a 2004 amendment to The Human Fertilisationand Embryology Act of 1990[i] that abolished anonymous gamete and embryo donation in the UK and entitled children conceived with donated gametes or embryos after 1 April 2005 to obtain identifying information about their donor when they reached the age of eighteen. Prior to this, donor-conceived adults could obtain non-identifying information about their donor (for example, age, ethnicity and occupation) from a central and compulsory register held, since 1991, by The Human Fertilisation and Embryology Authority (HEFA).[ii] The kind and quality of information collected about donors differed markedly from clinic to clinic, and the HEFA have increasingly sought to improve and extend the biographical information that clinics obtain. Since 2003, its Codes of Practice place an expectation on clinics to provide as much information as possible about donors. The age at which donor-conceived people can obtain non-identifying information about their donor was reduced from eighteen to sixteen in 2009.

The changes that have occurred in legislation and the establishment, in 1991, of a compulsory register of all births from fertility treatment, including information about gamete donors, means that, at present, the situation in the UK of what donor-conceived people can know about their donor, and when, is uneven and complicated. As noted above, people born after 2005 will have access to the identity of their donor when they reach the age of eighteen and to non-identifying information when they are sixteen; people born after 1991 and before 2005 have access to non-identifying information about their donor but not usually their identity; and those born before 1991 are unable, for the most part, to obtain any details about their donor. This tripartite situation is complicated further by the emergence of voluntary registers. There is the possibility, for example, for those who were anonymous donors prior to 2004 to re-register with the HEFA and indicate that identifying information about them can be released. In other words, they can waive their right to remain anonymous. Thus some donor-conceived people born after 1991 and before 2005 are able to obtain information about the identity of their donor if they seek it - although it is likely (from the few donors who have voluntarily re-registered thus far) that the numbers will remain small. As mentioned earlier, those born before 1991 do not have access to any information about their donors via the HFEA nor, for the most part, from clinics which, even if still operating, were not obliged to store records of donors in an accessible form indefinitely. However, in 2004 a voluntary register, then called DonorLink, was funded by the Department of Health to facilitate contact between donor-conceived adults (conceived prior to 1991) and donors, as well as between ‘half-siblings’.[iii]Donor Link was replaced by the Donor Conceived Register in 2013 and as of March 2015, 267 people were on the Register: 186 donor-conceived offspring,[iv] 78 donors, 1 daughter of a donor and 2 siblings of donor-conceived offspring.[v]

This complicated and uneven terrain is made even more bumpy by the parallel possibilities for people seeking fertility services to travel abroad for treatment and consequently to use donated gametes or embryos that may be more, or less, anonymous than in the UK (see for example, Deech 2003; Whittaker and Speier 2010; Inhorn 2011; Pennings and Gurtin 2012),[vi] or to make informal arrangements to procure semen through personal networks or Internet connection sites.[vii] It is complicated even further by the burgeoning facilities for donor-conceived people, or their parents, to make their own extra-clinical searches, via the Internet, for those who were, at the time, anonymous donors (Freeman et al. 2012). Much of theInternet activity, research and commentary on this latter phenomenon focuses on sperm donation rather than egg or embryo donation, and I will follow that lead and do the same here. However it is worth noting that the search for sperm donors appears to be more common and acute than the search for egg donors. Perhaps this is purely by virtue of numbers; there are, after all, many more sperm donor offspring than egg donor offspring and they are older.[viii] But I would argue that it is also shaped by the fact that kinship ties, in this kinship logic, are made to the paternal body through genetics (commonly rendered as ‘biological’) and/or through care (‘social’), while motherhood is additionally forged through gestation (also rendered as ‘biological’) (see for example, Edwards 2000; Thompson 2001; Konrad 2005).[ix]

It is in this context of a contested and unbounded, and perhaps unboundable, field that the UK’s Nuffield Council of Bioethics constituted a working party (WP) in 2012 to collate and consider the ethical issues surrounding 'disclosure’ and 'non-disclosure' in donor conception.[x] It carried out an extensive consultation exercise and published a report in 2013 entitled Donor Conception: ethical aspects of information sharing. In what follows, I use the idioms in which some of the arguments were aired without scare quotes, but note the particular ethos that idioms such as disclosure and non-disclosure reflect and shape. The strong case made to the WP for disclosure pivoted on the 'right' of children to know both the means of their conception and the identity of their donor.And calls were made for the state to step in and compel parents to tell their children that they were donor conceived, or to take the decision away from them: to insist, that is, on an imperative to disclose.

This article highlights the limits to state regulation and looks at the increasingly available extra-clinical routes through which people can obtain information that was originally not intended to be available to them. Citizen-run networks, or voluntary registers such as the Donor Conceived Register in the UK, mentioned above, or the Donor Sibling Registry in the United States,[xi] or less formal and more personal searches on the Internet and through social media, are circumventing clinical, regulatory and administrative bodies. These together with the increasing availability of relatively low-cost genetic tests are giving 'citizens' the unprecedented means of doing their own research. Thus while the paper records for people conceived in the UK prior to 1991 may be inadequate for linking up donors with subsequent offspring, a match can be facilitated with an additional DNA reading. For example, applicants to the Donor Conceived Register are asked to lodge DNA samples which can then be used to confirm links between registrants (who, in this case, may be donors, donor-conceived ‘offspring’ and their ‘half-siblings’).[xii] It is increasingly possible for individuals to combine online DNA testing with the non-identifying information they have of their donor and the information they can gather through their own searches on the Internet and via social media to identify connections that are not voluntarily or mutually sought.[xiii] This paper, then, is concerned with what cannot be contained within national legislation and policy: with what spills over and out of attempts at containment. It focuses on a new and emerging kin entity - the donor sibling - and suggests that an anthropology of friendship as much as kinship might help us understand the attraction of this new kin figure. I start by locating the donor sibling in anthropological kinship.

In kinship

It appears that even with pushes towards more openness and transparency and burgeoning means of identifying donors, the majority of parents in the UK, albeit a small majority, do not reveal the use of donated gametes to their donor-conceived children.[xiv] Whether or not parents tell or do not tell their children that they were conceived using donated gametes or embryos, and their reasons, is of anthropological interest.[xv] Marilyn Strathern, writes of how scientific knowledge is embedded in Euro-American kinship thinking and of how it has its own consequences. In certain contexts, it matters and can be used to verify who are and who are not kin. In her words:

Knowledge about how persons are related to one another is acquired from, among other things, information about biological processes. With the new technologies have come new techniques of verifiability. Now such knowledge is integral to the recognition of persons as kin, and has its built-in impact on personal identity (Strathern 1999: 65).

It is this built-in capacity that is of interest here. How 'facts about birth imply parentage' (Strathern 1999: 68) and how information about the means of one's conception can be constitutive of the self. However, we also know that there is more to Euro-American kinship than this and that it cannot be confined or delimited by the scientific facts about conception or birth. Kinship is also forged over time, with parental influence emerging not only through gestation but also before and after.[xvi] If the scientific and technological facts of conception do have the potential to displace and demote the kind of kinship that is built over time through care and attention, then it is understandable that a significant number of parents of donor-conceived children are unwilling, reluctant or just not interested in telling their children that donated gametes were used in their conception. For campaigners lobbying for ‘full disclosure’, such reticence denies the rights of donor-conceived children to ‘know’ their origins and for them there is no reason to believe that such knowledge, gained appropriately and at the right time, will compromise the relationship between ‘non-genetic parents’ and their children.[xvii]

At the same time as a majority of UK parents are not revealing the means of conception to their donor-conceived children, there is a counter move towards expanding kin networks by adding new kin figures such as donors and donor siblings. Donor siblings are genetically connected to each other via a donor in common and people are using the Internet, and more specifically ‘people finding sites’, to search for them. An addition to the numerous databases and indexes that allow people to find ancestors, old classmates, love matches and so on, are those which aim to match donors and donor conceived people, as well as the families of each. The Donor Conceived Register in the UK and the Donor Sibling Registry in the USare enabling individuals conceived with gametes from the same donor to locate each other, as well as the children of the donor. These kinds of searches for donor siblings do not require the permission of the clinic nor indeed the donor. In the US, where donor anonymity is preserved and where there is no federal obligation for sperm banks to report the number of donations from any one person, the code on each vial of semen that was used by the sperm bank to anonymise it is now being used to locate other people conceived from the same batch of semen(Hertz and Mattes 2011; Nelson et al. 2013): a move that some commentators describe as an unforeseen and unpredicted twist.

It may seem, for some, a bit of a stretch to call persons who have a sperm donor in common, but who are otherwise unrelated and unknown to each other, siblings. However the idiom alerts us to look closer at the social relationship that is being indexed by this term. In a recent and timely collection on the anthropology of sibling relations, we are reminded of how the relationship between siblings is gendered, shaped by birth order and more or less significant in different parts of the world: the collection alerts us to the different ways in which meaningful siblingship is forged, maintained and broken (Alber et al. 2013). Siblings are such, we are told, through shared parentage, shared childhood experiences, or through mutual care and/or exchange, and the intensity and depth of sibling relationships may change through the life course and be marked as much by antipathy and competition as amity (and see also Lambek 2011). While siblings have emerged as central figures in the literature on South Asia and the Middle East, where the bonds between brothers and sisters are considered to be closer and stronger than conjugal relations, they have been noticeably absent from the ethnography of Europe and North America (Alber et al. 2013), where the focus has been more on the centrality of conjugal and parent-child relations. So what are we to make of the emergence of the donor sibling as a new kin figure in what I am referring to as Euro-American kinship (with all the caveats that such an idiom requires)?

In the United States the kin term ‘dibling’ has been coined as an affectionate appellation for donor siblings who are understood as half brothers or sisters (and see Edwards 2013). Diblings are a distinct and distinctive category of kin: different not only from step-siblings (who are not, in this kind of kinship thinking, genetically related), but also from conventional half brothers or sisters who are genetically related via one of their parents. Diblings share neither a childhood, nor a household, nor live-in (or hands-on) parents, and they need not know their shared donor but trace their connection through him (Edwards, 2013).Furthermore, ‘donor-conceived families’ who identify with a donor in common are connecting themselves in a wider kinship collectivity that some are referring to as a clan.[xviii] While such clans appear to constitute themselves predominantly on the Internet, postings also describe, in warm and positive kinship terms, ‘family reunions’ and ‘clan get-togethers’.[xix]The use of this well-worn, and somewhat discredited concept in anthropology, issignificant. In this instance it combines a genealogical connection with a family 'of choice' and, I argue, brings kinship back into the fold of friendship from where it originated (a point to which I return below).

Another variation on the theme is the 'batch sibling'. This refers to the siblingship between embryos that have been created at the same time, in the same petri-dish, and with gametes from the same persons. In the language of members of Snowflake, a Californian, Christian and pro-life organisation that matches 'spare embryos' and recipient parents, embryos are put up for ‘adoption’ rather than donated (Blyth et al. 2011; Collard and Kashmeri 2011). Some couples placing embryos created from either their own or donated gametes (or a mixture of the two) express a preference for 'their embryos' not to be dispersed too widely and for them to be placed together with just one other family. Their desire is to keep tabs on the genetically related siblings of their own children. At the same time, however, for other members of Snowflake, the full genetic siblingship between children in placing and adopting families is much less significant than the meta-siblingship they share as sons and daughters of God.[xx]In the words of Delia, a member of Snowflake:

… [embryo adoption] is new and I’ve had a long time to think about this, and a lot of people would say that they are sisters and brothers, and, ok, let me tell you my take on that. When a placing family relinquishes, they are relinquishing parenthood and the child[,] … parenthood is both the responsibilities and the blessings . . . So what they have relinquished as well is sister, brother, aunt, uncle, mother, father. So, just because they share genes [-] you and I share genes (Collard and Kashmeri 2011: 316).

For Delia, the genes that two embryos (with the same genetic parents) share become as irrelevant as the genes that unrelated people share when one of them is placed for adoption. In relinquishing the embryo, the parents also relinquish their kinship to the embryo and the tie that might otherwise have made the embryos siblings is broken.

On first glance, the search for donor siblings and the use of the language of clanship to describe loose associations between nuclear families connected by a male genitor seems to support two central and commonly expressed ideas; the first, that Euro-American kinship is the cultural construction of natural facts and those natural facts form a biological substratum from which culture is elaborated; the second, that the biological substratum of kinship is increasingly rendered as genetic. The first is the foil that anthropologists have been accused of using to reveal the alterity of other kinship systems across the world which do not privilege biology in the same way (Schneider 1984) and the second is recognisable from the important work of many social scientists who have tracked the privileging and increasing dominance of genetic explanation for all kinds of social phenomena (see for example, Lippman 1991, 1992; Finkler 2000; Schramm et al. 2012). I want to take up the first in this article and, regarding the second, point only to an extensive literature that questions the idea that genetics has become a dominant way of explaining social phenomena: literature, that is, that is critical of the geneticisation of social life thesis(see for example, Hedgecoe 1998; Edwards 2006; Hedgecoe 2006; Edwards and Salazar 2009; Egorova 2009; Wade et al. 2014).