Nothing if not family? Genetic ties beyond the parent/ child dyad

Internationally, there is considerable inconsistency in the recognition and regulation of children's genetic connections outside the family. In the context of gamete and embryo donation, challenges for regulation seem endless. In this paper, I review some of the paths that have been taken to manage children' being closely genetically related to people outside their families. I do so against the background of recognising the importance of children's interests as moral status holders. I look at recent qualitative research involving donor ‐ conceived people and borrow their own words to make sense of a purported interest to know (of) their close genetic ties. I also review ways in which gamete donation may have facilitated new kinds of kinship, which are at the same time genetic and chosen. In short, in this paper, I explore what meaning there could be in genetic connections that is not about parenthood. Further, I argue that the focus on parenthood in previous work in this area may be detrimental to appreciating some of the goods that can be derived from close genetic connections.

their parents' better judgement.However, if we look at genetic links specifically, recent studies of donor-conceived people do not seem to confirm the expectation that their interest in the donors is exclusively about parenthood, nor that it is a threat to the legal parents' parental status.These insights raise new questions: what is the significance of the relationship between a child and her genetic relatives outside the family?If a child's genetic relatives are not her family, what are they to her?Is it problematic for parents not to allow children to know their genetic relatives or to develop relationships with them, and if so, why?My aims in this paper are twofold: to analyse the meaning of biological relatedness from donor children's perspective and to identify how biological connections can be described meaningfully beyond the exclusive language of family and parenthood.Throughout the paper, I use terminology such as biological relatives, genetic siblings and biological parents.Words such as relatives, siblings and parents are family-related and may contribute to the tensions that I will be exploring.This may indicate a need to develop our terminology further, in order to be able to denote properties and connections to children without recourse to normatively loaded concepts.I will also talk about children having an interest in knowledge of or acquaintance with biological relatives.I do however not here build the case for there being an objective or primary interest in a philosophical sense.Instead, I use the word 'interest' in the looser sense of 'being interested in', in order to explore the meaning that genetic connections may have for donor-conceived individuals from their own perspective. 2e paper is situated at the intersection of the ethics of close personal relationships, family ethics and reproductive ethics.Discussions in reproductive ethics tend to focus on new and prospective reproductive technologies and the challenges they raise.Reproductive ethicists have been concerned primarily with the interests of prospective parents or states and have yet to fully incorporate philosophical conceptualisations of children's interests. 3In this paper, I will draw these areas together: I will address changes brought by new technologies in their societal context and in the context of contemporary philosophical views on the moral status of children, close personal relationships and caring relationships in general.
In a much-cited publication, the philosopher David Velleman refers to gamete donors as the child's parents and deems gamete donation immoral because of its negative effects on self-knowledge and ultimately on the process of identity formation. 4Responding to Velleman, Sally Haslanger suggests that knowledge of one's biological relatives 'can be a good thing' but that it is not a basic good such that it would create a duty on others to facilitate it.If anything, parents should work to counter the narrative that presents biology as important for family relations. 5cording to John Robertson, people have a right to reproduce, which covers specifically biological reproduction irrespective of whether there is an intention to parent the resulting child. 6Robertson's account is in line with a core assumption behind the fertility industry: that people wishing to become parents always seek (or should seek) to do so via genetic reproduction, with gamete donation only considered if the goal of genetic reproduction fails.Although Robertson's concept of reproductive autonomy is very influential in reproductive ethics, his commitment to the value of genetic reproduction is not.Reproductive ethicists tend to criticise the association of genetic connections with parenthood.Some consider it irrational and caution that we should not encourage people to pursue genetic parenthood. 7Even if the desire to have offspring may be benign, it does not warrant medical support, and offering such support reinforces prejudice. 8For others, the desire itself is objectionable. 9ainst this background of representing genetic connections as either indicative of family relations (and especially parenthood), or meaningless and irrational, I specifically look at whether there can be value in such connections that is not about family or (genetic) parenthood.
In order to do so, I will first review where we are now in the recognition and regulation of children's biological connections outside the family.I then centre the paper on the recognition of the moral status of children and the importance of their interests.I then review qualitative research involving donor-conceived people and use their own words to make sense of the purported interest to know (of) their close genetic ties.This part of the paper should also make clear the importance of incorporating their perspective in any discussion of whether there is such an interest and what it requires of whom.

| WHERE WE ARE NOW
The issue of how children's interests should be balanced against the interests of adults (parents, extended families, donors, or others) in the area of third-party reproduction is highly contested.Ethicists, social scientists, healthcare professionals, policymakers and donor-conceived people themselves disagree on the significance of genes in third-party reproduction, on whether anonymity and secrecy are justified and on how regulations should change. 10Regulatory management of children's 2 Groll calls these 'worthwhile significant subjective interests'; In Groll, op.cit.note 1.
3 biological connections outside the family varies significantly across Europe and beyond.Egg, sperm and embryo donations are allowed in Sweden; however, surrogate motherhood is forbidden.In Germany, sperm and embryo donations are allowed, but egg donation is not; a recent legislative initiative would have had women 'confess' the names of their past lovers if there were reasons to believe that their husbands were not their children's biological fathers. 11ile gamete donation used to be practised in conditions of anonymity and confidentiality, this has been challenged throughout Europe and beyond.Some states enforce anonymity for gamete donors, while others forbid it.In 2015, the state of Victoria in Australia removed anonymity retroactively, to great controversy.In 1985, Sweden was the first country internationally to ban anonymity. 12Since 2019, in Sweden children who were donor-conceived have (in principle) a legal right to know, and parents 'shall as soon as appropriate inform their children that they were conceived as a result of such a treatment'. 13However, according to a Swedish court decision, a sperm donor can be proved '99,999% the child's father' and shall be the child's legal father if the donation did not follow the legal route and unless another man is to be acknowledged as such. 14Decisions such as these reveal the association that is still made in the law between biological parentage and legal parenthood, outside the nuclear family.
At the same time, internationally, gamete donors and other participants in fertility treatments are often said to provide nothing more than a service or treatment, in a way similar to blood donation. 15In countries where gamete donation is nonanonymous, children can find out their donors' identity, but only if their parents disclose the donation to them.Often parents do not disclose it, although disclosure rates are increasing. 16In Sweden, children can only access identifying information about their donor after they are 'sufficiently mature'. 17In the United Kingdom, they can access it only once they turn 18 18 : thus, only when they are no longer children.
They will not know that they have this choice unless their parents have informed them of their donor status.This raises the question of whether children's interests as children are served by these policies.
As we will see later in this paper, evidence from social science suggests that children can benefit from being allowed to reach out to genetic relatives as children-and some of these benefits may no longer be accessible to them if they can only do so as adults.
Lastly, but importantly, these provisions only concern identifying information about the donor: not about donor siblings.In several countries, there are databases where donor-conceived children could find each other if they wish.And, of course, donors and other genetic relatives can be found with the help of direct-to-consumer DNA testing.However, it is only identifying information about the donor that is made accessible by law to donor-conceived people in nonanonymous jurisdictions.

| THE MORAL STATUS OF CHILDREN AND THEIR PLACE IN THE FAMILY
Not long ago in the Western world, it was considered inappropriate for women to interact with people outside the family without the permission of their husbands.The legitimacy of such expectations came under scrutiny with the acknowledgement of women's moral status and their moral equality with men.Likewise, the recognition of children's moral status has come a long way.In the words of one historian, '[t]he history of childhood is a nightmare from which we have only recently begun to awaken'. 19Progress in natural and social sciences reveals the endemic underestimation of children's moral and rational properties. 20e idea that children have moral status is a modern development in the Western world.Philosophers referred to children as their fathers' property, and it is only since the 18th century that concern for children as morally worthy independently of the wishes of their parents has taken hold.The development of this conception of the moral status of children really took off during the 19th century 21 and is reinforced by regulatory instruments such as the UN Convention on the Rights of the Child.The convention frames societal concern for children in terms of 'the best interests of the child', which should be 'a primary consideration' in 'all actions concerning children'. 22ilosophical understandings of parental rights and responsibilities have shifted dramatically, from a focus on the parents and their interests to children and their interests. 23Such changes in how the moral status of children is conceptualised impose new obligations for others to behave in ways that promote children's well-being, both as children and as future adults. 24 the Western world, it has been taken as axiomatic that children should be born within wedlock and raised by their (biological) parents. 25But recent work in psychology, sociology and other disciplines now points towards attachment, relationship quality and social support as essential factors for children's well-being 26 -rather than whether the family unit conforms to a certain form.Children can no longer be relegated to the family come what may, and new perspectives on the justification of parental rights have emerged, as grounded partly or entirely in children's interests. 27actices such as gamete and embryo donation and surrogate motherhood increase the number of people involved in the conception and birth of children.Many children nowadays acquire and lose a number of connections with adults: their genetic, gestational, birth parents, the romantic partners of their parents and actual legal guardians.The question of which of these adults ought to be recognised as a child's legal parents, and how (if at all) the others' relationships with that child should be recognised and protected, has no straightforward answer.Currently, throughout Europe, the legal decision to recognise certain adults as a child's parents enables the exclusion of others who may be connected to the child in some way.Parents can exclude others from their children's lives, regardless of the wishes or interests of anyone involved (with some hard-won exceptions, such as grandparents who obtained contact rights 28 ).This exclusivity renders invisible connections that may be important for children. 29However, if children have legitimate interests in knowledge of their biological ties, then enforcing parental discretion in these matters may not be justified.
Harm to children is an important consideration.Parental responsibility requires that parents protect their children.People outside the family may threaten children's well-being, whatever connection they may have to them, and especially where there are expectations involved.Reaching out towards people with whom they share biological ties may hurt children.They may experience rejection 30 or shame.They may uncover unpleasant, hard-to-cope-with truths: genetic relatives may not be as they imagined them; they may be ill, or they may be deceased.
Yet parents may also have a moral responsibility to allow their children to develop and maintain connections that are meaningful for them, even when this is uncomfortable or risky.For example, in the context of surrogate motherhood, researchers have indicated that severing contact between surrogate mothers and the children they give birth to can harm both parties. 31As we will see in the next section, there are arguably goods that donor-conceived children can only access if allowed to interact with genetic relatives.
In the following, I will briefly review some findings from qualitative research with donor-conceived people to get an idea of what they may be experiencing, looking for-or finding-in their genetic relatives.

| 'I ALSO WANT TO MIRROR MYSELF BACKWARD'
The interest in knowing one's genetic relatives has been construed in several ways.In one categorisation, possible avenues are divided into medical, identity, relational and parental disclosure. 32In this section of the paper and the next, I will look at the latter three of these aspects-with the twist that the interest to seek contact and form a relationship may regard genetic relatives other than the donor: namely, genetic siblings.
Historically, qualitative research on children's interests in the knowledge of biological connections has concentrated on family relations. 33In recent years, however, work has moved towards exploring the meaning of genes in relation to identity. 34Contra Velleman cited above, social science researchers tend to disassociate biological connections from the family and take a view of identity as relational in nature. 35cial scientists have coined new terminologies for biological connections outside of the family: from 'relative strangers' 36 to 'genetic strangers' 37 to 'curious connections'. 38They note the complexity of donor-conceived people's interest in their donors and 'donor siblings' and the fragility of parents' expectation that they can control their offspring's interest in and knowledge of their genetic connections. 39They also show how, against the background of thinning family branches throughout the Western world, donor-conceived people forge close relationships with their 'donor siblings' across geographical areas, ages, and social and educational backgrounds. 40Many of these close relationships are formed early in children's lives-which requires the involvement and support of their parents.
In one study of genetic siblings conceived with donor embryos being raised in different families, researchers found that all parents supported communication and contact between the children.As they matured, children themselves determined the fate of these interfamilial relationships. 41Some chose to maintain their bonds into adulthood and state that they were formed in childhood.This may be a good that would not have been achieved had they only been able to seek their donor siblings as adults.If so, then regulations that allow children access to information only once they become adults will prevent them from experiencing this good.Regulations that only provide information about the donor(s) and not about any genetic siblings do not address this interest to relate to donor siblings.
According to one report, sperm donors who have contact with the children they helped create refer to those children as being 'like a family member'. 42The donors in Hertz et al.'s study reported that 'establishing boundaries and defining the relationship can be very difficult'. 43Some of them felt they were perceived as a threat by the male parents 44 (that fathers can feel threatened has also been found by Widbom et al. 45 ).They did not see themselves as parents of the donor-conceived children, nor did they see these children as a part of their own family in a narrow sense: but many did see both children and their parents as members of their extended families. 46terestingly, this is not consistent across the reports of this group and especially across generations.One interviewee said 'I went from zero to grandfather faster than anyone ever, and I really enjoy the grandkids.I feel like I hit the jackpot and didn't earn it'. 47nor-conceived adults have referred to donors as 'part of my story'.They claimed that 'those who do share a genetic link with their parents cannot know what it means not to have it'.They wished to do 'away with the mist'. 48They experienced analogies made between gamete and blood donation as offensive, and the rejection of the legitimacy of their interest in genetic connections as humiliating: unlike blood, gametes are 'your starting package for the rest of your life'.
In the words of the interviewees, "I can mirror myself in the future in my children, but I also want to mirror myself backward, in the past.""I want to know (…) what makes me 'me,' but a piece of them makes 'me' too." 49dekeu and Hens found that the importance attributed to genes by donor-conceived people varied both between different respondents and in the same participant over time or within a specific context.All those they interviewed thought that genes had some significance.Although they did not see genes as determinative of family relations, they regarded knowledge about their genetic origins as important for their identity and something they were entitled to. 50This is in line with findings in other studies. 51is perspective contrasts both with parents' concerns as captured in previous qualitative studies (e.g., fear that the children will perceive the donors as their 'real' parents 52 ) and with policymakers' inconsistent attitudes towards the meaning of biological connections.

| GENETIC JEALOUSY
The fact that children wish to 'mirror themselves backwards' in strangers to the family can be difficult for parents to cope with.
Parents can hope to influence but cannot control how their children will relate to the donor.In one study, researchers found that some donor-conceived children may refer to their donor as their 'father' or 'daddy', against the wishes of their parents. 53Some parents worry that the donors might replace them in the hearts of their children.
In another study, one donor-conceived person expressed interest in their genetic background, 'but by talking about it, I hurt people, so in a sense I cannot talk about that part of me'. 54This sentence captures the problem of parents' unease with the genetic otherness of their children.
In a study on semiopen embryo adoption, parents who had "we feel that whatever is in the best interest of our children should come first, regardless if it's awkward or uncomfortable for us"; "we are the adults and should be mature enough to put our children's needs and desires above our own"; "we are all family now….They are great folks and the girls are sisters which is what is most important to me". 55ese parents acknowledge their own discomfort but at the same time chose to act in what they believed was in the interest of their children.This study regards specifically relationships between genetic siblings.Interest in donor siblings may be less provocative as siblings cannot as easily be seen as competition for parenthood as gamete donors themselves may be.And yet the interest may be just as strong or even stronger.Genetic siblinghood of this sort does however raise an unfamiliar issue for parents.Ordinarily, children become siblings via their parents, biologically or socially.In the case of donor-conceived genetic siblings raised in different families, the connection is between the children directly: what connects them is their donors' contribution.Any bond between them is generated by exactly that which is external to the family: the donor, the traits that they share because of sharing a donor, and the experience of being donor conceived.What makes them 'siblings' is what the parents could not provide.
For many years, prospective parents availing themselves of gamete donation were encouraged to see it as a one-off event, a microscopic contribution to the creation of the child they longed for.
However, minimising the donation can backfire in many ways, depending on how the parents deal with the information: do they hide it?Does the child discover it by accident?It will depend on the child's inclinations: is she interested in knowing more about or even meeting the donor or other genetic relatives?It will also depend on the family environment: are others in the family or surrounding social circle comfortable with the donation?Do they invest biological parenthood with special, 'real' parenthood status?Do the families of the donors do so?As noted above, family members of the donors may perceive the donor children as their own family (e.g., their grandchildren).The society in which these events transpire will also influence which relationships are perceived as important, and this may present challenges for the parents.In a world of mixed signals about the meaning of genetic connections, parents have historically been discouraged from reflecting on these complications. 56Gamete donors have likewise been discouraged from exploring the long-term consequences of their donation, especially in legislatures promising them anonymity.Too much thinking could discourage them from donating and thus contribute to the shortage of gametes.
Should children be able to form bonds with their donors, the donors and the parents may be thrown together in an uncomfortable intimacy that never goes away.If they already know each other, they may not initially foresee the implications of their arrangement.
Whether or not one values genetic links as indicative of family relations, these links are an undercurrent of human connections, and we have limited control over how other parties perceive them.One cannot reliably predict relationships with and expectations of extended families, gamete donors and their families.Some children may come to regard the donors as their parents and prefer them to their rearing parents.Some donors may overstep their boundaries and try to compete with or replace the parents.They may get attached to the children, and the children may get attached to them.As tends to be the case with close personal relationships, it would be surprising if this never happened.Interestingly, however, researchers have found statistically significant associations between secure attachment and curiosity on the one hand and insecuredisorganised attachment and negative attitudes about donorconceived status on the other. 57Children who were already comfortable with their parents were more likely to be curious about the donors, while children who had a difficult relationship with their parents were less interested in the donors.
The heavy weight that has traditionally been given to genetics in determining parenthood (especially outside the nuclear family) may explain why parents feel anxious about irresistible 'competition' from their children's genetic kin.If these connections are valued but at the same time are not to be described in parenthood and family language, how can they be described?

| NEW TYPES OF CONNECTIONS?
Family language is normatively loaded and provocative.Some donorconceived people and their families have forged new terminologies to denote the relationships they are building.In some communities, the terms 'diblings' or 'halfies' have been coined to denote the relationship between donor siblings. 58Donor siblings (or diblings) may meet not at family reunions, but at 'network meetings', as they are a 'network' (or a clan), not a family. 59Some children see their diblings as their friends, but better ('I like these friends more better than my regular friends.' 60 ).This kind of 'networking' is an innovation in close personal and family relationships.