I attended the launch of the Nuffield Council on Bioethics report
on 'Ethical aspects of information
sharing in donor conception' on 17 April 2013. At the meeting, the report
was not universally welcomed and some of the audience were disappointed that it
did not champion more forcefully children's rights and related measures to
mandate and regulate the flow of information in families and between kin.
However, from my point of view as a sociologist carrying out
research in this field, the report is to be welcomed as a scholarly and
balanced contribution to current debates. I think it is important therefore to
understand the basic premises of the report before considering the value of
some of the recommendations.
There are three foundational concepts which frame the
thinking of the report. Firstly, there is a shift away from the language of
individual rights to a consideration of interests and values which in turn need
to be weighed and balanced. This thinking is of course not new in areas
concerning family life. For example, the Children Act 1989 emphasised a
move away from 'rights thinking' as being inherently unhelpful in the field of
Secondly, there is an emphasis on webs of relationships (or
kinship) rather than the view that sees families as separate individuals who
operate independently of one another.
Finally, the report places emphasis on the importance of reciprocity and
the assumption of responsibilities in family life, noting that love and care
are constructed through these everyday qualities. This point is particularly
significant in face of the increasingly popular assumption that the
relationships that matter most are genetically determined rather than
painstakingly built through everyday acts of attentiveness and care.
It is in this context that the report addressed the vexed
question of disclosing to children that they are conceived through donor
conception. While there was a clear consensus based on existing empirical
research that 'telling' is the most appropriate course of action for parents,
the report did not embrace the idea of mandatory measures which would force
parents to follow a particular course. Given the conceptual starting points of
the report, it would have been startling had they come to any other conclusion.
The idea of a legally enforceable mandate that would require
parents who had received donor gametes to tell their children the exact details
of their conception simply could not fit with an understanding of family life
based on ideas of mutually entangled values, interests, responsibilities and
care. The report's approach was therefore more of an invitation to parents to
participate in the growing consensus on the positive value of 'telling'
children about their origins. This may seem feeble to those who are ardently
committed to a children's rights perspective, but from the point of view of the
findings of our ongoing research on disclosure in donor conceived families, I
find myself hugely relieved that the report does not espouse draconian measures
against parents. This is because our research has found how hard it is for
parents to tell, even where they are committed to doing so.
Telling involves not just the parent and child — as if they
were an isolated unit — but potentially both sets of grandparents, siblings,
aunts and uncles, friends including members of community or religious groups,
and even the parents of the child's school friends. To undertake to do this
requires a particular fortitude which, arguably, parents need help to achieve
rather than being faced with the threat of enforced disclosure.
It is clear that at present, not every parent can follow
what has become the dominant script in this new parenting narrative, just as
not all followed the 'rules' back in the 1960s when infertility doctors
virtually swore them to secrecy. However, the tide seems to be running in
favour of this kind of openness and the report's emphasis on encouraging this
tide is to be welcomed.
As part of the aim of furthering this kind of cultural
shift, the report also bravely tackles the complex, but crucial, question of
identity. To put it simply, a division appears to exist — there are those who
think that genetic inheritance determines one's identity or, at the very least,
is the essential component of identity and hence an inalienable human right. There are also those who understand the construction of
identity as an ongoing process which combines elements taken from genes,
biology, culture, history, place, family relationships and so on. In the latter,
genetic inheritance becomes one factor among others rather than the primary
definer of the 'self'.
In other words, the report acknowledges that genetic
relatedness matters to people but rejects arguments based upon one-dimensional
genetic determinism. This thinking is behind the Working Party's hope that
donor conception will eventually become 'no big deal'. Their premise is based
on the idea that silence and secrecy surround matters that are painful,
shameful or simply too hot to handle. In seeking to 'normalise' donor
conception (for example in the way that illegitimacy has been normalised and
de-stigmatised) the report aims to make the whole process easier for both
parents and children. In this respect, I find the report to be a most welcome
contribution to ongoing debates on how contemporary British society should
respond to this new reproductive revolution.