I’ve just been dipping into Naomi Cahn’s book The New Kinship: Constructing Donor Conceived Families. Naomi is a professor of law at George Washington Law School so she writes about the topic from an American perspective, but her propositions are far-sighted and universal. She proposes a system of regulation, in a country where there is currently no federal legislation whatsoever with regard to donor conception, based on “A normative vision of promoting affective ties, fairness and other public goods associated with respect for the dignity of donor-conceived families” as opposed to “A normative vision associated with protecting patient autonomy, privacy and the domesticated family”. Such a system would recognise the links between families created via donor conception. She writes, “Even under a system of full disclosure, there certainly remains a critical distinction between “parenting” a child and contributing gametes to the creation of the child. The parents have strong rights to make their own decisions concerning the care, custody and control of their children. Gamete providers, having sold genetic material to create the child, are not, of course the parents, and thus (in the absence of an agreement otherwise) do not have enforceable rights in courts. (Consequently, donor-conceived children are not in the same position as children of divorce with various parents able to go into court to fight about visitation). Allowing information disclosure to adult offspring values parental rights to raise children as they see fit while the children are minors, but respects the “children’s” rights once they are mature”.
Cahn identifies the most important change that needs to take place is a paradigm shift towards donor conceived families; “they must take their place in the jurisprudence of family and constitutional law, not solely in the administrative jurisprudence of technology, health and safety regulation. They have been medicalised rather than humanised. ….Future regulation must develop from the perspective of family law, which focuses on the interests of all involved as individuals, rather than as patients or producers or products. This grounding provides a more coherent and cohesive justification for moving toward recognition of these new relationships.” America, are you ready for this?
Inevitably perhaps, the HFEA is held up as a model for regulation. And all the principles enshrined in the HFE Act are of course right…a registry where all information relating to the stakeholder triangle is held; access to parts of that information depending on when conception took place and being able to prove that you have a legitimate interest in it. But recognition of the inevitable connection between the families of donor and recipient or between families with children conceived from the same donor? I don’t think so. And certainly no imperative to foster connections between these families as Cahn believes benevolent legislation should allow. In fact the HFEA set out to prevent connections being made between donors and recipients by not allowing clinics to give out donor numbers to either party. There was a problem with the same numbers being used by different clinics but this was sorted out by giving a unique HFEA reference code to each donor. This code could have been revealed to recipients and donors alike but defensive legal advice labelling these figures as ‘identifying information’, led to a ban on clinics giving the numbers out. What was really going on was that donors and recipients were finding each other on the internet, usually by mutual consent, and the HFEA was terrified that if comparison of donor numbers formed part of this connection they could be sued for revealing the donor’s identity. As it is, potentially life-enhancing links between siblings and families are being prevented by a bureaucracy that does the very opposite of foster connections. There is a down as well as an upside to regulation.
Meanwhile there is a move to set up a completely separate registry for those in the donor conception world in the UK who wish to make connections and families continue to find each other or at least attempt to do so. I am currently involved as an intermediary between an egg recipient and her donor whom she identified on the forum of the clinic they both attended. Also party to very tentative and thoughtful steps being taken by a donor conceived adult to get her donor to respond to her. This is the future. Is the HFEA ready for it?
The New Kinship: Constructing Donor-Conceived Families by Naomi Cahn and published by New York University Press 2013