Report Review: Donor information sharing - Preservation of personal liberty or the indirect control over people's private lives?

In its latest contribution to practical bioethics and policymaking, the Nuffield Council on Bioethics in its report on information sharing in donor conception recommends, among other things, that parents of donor-conceived children should not be mandated to inform them about their origins. It does, however, state that openness and transparency are positive values to be supported.

The recommendation was rightly not made for media headlines nor was it overtly ground-breaking - nor did it appease all those who advocate for the rights of donor-conceived people to know their origins, who have charged the report with not going far enough. The report's conclusions come across as measured and well thought through, and thankfully not a byproduct of compromise but of positive deliberation.

In a similar vein to what I have written about other Nuffield Council reports (see BioNews 630), the greatest potential impact of this report may be at the grassroots of bioethical thinking and policymaking in this area. Keeping within the same ethical deliberations as adopted with its previous definitions of solidarity and altruism, the report represents an attempt to generate bioethical debate and channel new ways of thinking to establish, in this case, a new discourse of relational interests and an ethos of openness and transparency.

In its understanding of social cohesion in the 'family' life as consisting not of simply of individual family members but of kinship networks - how people know themselves to be related to each other - the report is able to neatly capture the reality of interpersonal relations as involving sets of reciprocal responsibilities. It avoids the challenges of presenting individual rights-based arguments of the donor-conceived versus others, which often end in an uncomfortable compromise or one trumping the other. It instead establishes one coherent framework for the determination of issues regarding donor information that is responsive to the unique social arrangements created by donor-conception.

In my view the Council's greatest contribution here is - and has been lately - to explicitly adopt a means of deliberation that demonstrates ethical consistency first and foremost above practical outcomes. Its policy recommendations are therefore ethically defensible and coherently orchestrated according to principle.

However, I have some misgivings about the characterisation of interests in the private sphere as relational and as being mutually constructed by, rather than against, other people's interests. The presumption that people operate as social beings and possess social interests that are capable of being construed through a collective lens can detract from the importance of individual liberty and leave people exposed to the control of others. Unless it causes harm, behaviour should not be influenced directly or indirectly by other people's perceptions of correctness.

Although the report is at pains to make clear that parents should not be mandated to disclose (partly on basis to preserve parental autonomy but partly also because of legal issues that would arise and other factors), behind the ostensible veil of non-interference there resides a lurking possibility that individual liberty could potentially be undermined through the implicit idea of encouraging parents to tell - or the creation of an environment where is it considered 'positive' for parents to tell.

In the absence of clear evidence pointing to harm, the idea that it is a positive thing for parents to disclose personal and sensitive information - or indeed should be encouraged to do anything - is concerning. If not managed properly, in some situations it could effectively amount to a form of paternalism that infringes the parent's right to be sole decision maker about their child's upbringing. It can arguably make people the unwitting agents of overarching policy considerations determined at a state level that seek to implement modes of behaviour through indirect and non-coercive methods.

I do not find the evidence cited by the report to be entirely persuasive - in part because of the acknowledged lack of information in regard to the effect of non-disclosure to donor-conceived people.  I also find statistical or large scale qualitative studies unrepresentative of the true nature of harm which is often subjectively determined by each unique set of facts. The evidence, as it is, may then not justify measures that seek to promote particular modes of conduct even in the most non-coercive manner.

Looking forward, the potential challenge to personal individual liberty - in this case, for parents to determine what is best for their children - means that manner in which information is made available to parents and is managed is of crucial importance. Parents should be 'supported' in such a way as to preserve the decision making ability of parents - whether this is achievable in principle may be a concern.