Nuffield report: Parents should decide whether or not to 'tell'

Last week, the Nuffield Council on Bioethics presented
its report on
ethical aspects of information sharing in donor conception.
Although the moral acceptability of third-party reproduction is still debated,
this report importantly starts from the position that there is nothing wrong
with services helping people to have children with donated gametes.

However, donor conception is much more than just
another reproductive option. Challenging issues related to compensation of
donors or payment for gametes were addressed in the Nuffield Council's earlier
report Human bodies:
donation for medicine and research. In this new report the Council looks in
depth at another ethically relevant aspect of donor conception: the fact that
the use of gametes leads to genetic connections between the future child and
the donor. These may or may not be regarded as socially significant by the
several parties involved, and that may or may not lead to actual relationships
between them and might have medical significance as well.

Clearly, the provision and control of information both
about the use of donor gametes and the identity of the donor are crucial issues
in this respect. Legislation has put an end to anonymous donation in a number
of countries including the UK (2005), Sweden (1984), and the Netherlands (2004).
Elsewhere, for instance in Belgium, France, Spain and Denmark, anonymity has
remained the norm, suggesting different views across Europe about the
differential weight of the interests at stake.

However, in the UK and other countries that have chosen to abolish anonymity, there is a continuing debate
about whether additional regulation is needed to ensure that the legal right to
know the identity of the donor does not remain a token right for those who are
never told by their parents how they were conceived in the first place. In
order to address this concern, it has been proposed that the birth certificate should
indicate that the child was donor conceived. This measure aims to make it more
likely that parents will 'tell'.

The Nuffield Council report rightly rejects this call
for pressurising parents into compliance, as this abstract ideal of openness
disallows them to make their own moral judgements about what is best in their
situation and for their family. On the basis of the available evidence, and especially
in light of the possibly adverse impact of inadvertent and late disclosure, the
Working Party came to the conclusion that other things being equal, it is indeed
better to tell and to do so early in the life of the child. According to the
report, this is what parents-to-be should be told as part of pre-treatment
implications counselling.

However, other things may not always be equal. The
report refers to specific situations, such as parents who may have reason to
fear that in their community, openness about donor conception will not be in
the interest of their child or family. It may be well the case that such fears
are unfounded, and that is also why parents should be offered support in making
decisions about information sharing. As observed in the report, it turns out
that those who find it difficult to tell their children about how they were
conceived and yet decide to take this step usually do not regret their
decision. Still, it should remain their decision.

This does not mean, as was suggested by some critical
voices from the audience at the report launch, that the interests of the
parents are given priority over those of their donor-conceived children. Do
those critics really think that the interests of families and children are
better served if mandatory openness is imposed from outside? We normally expect
that parents will take on the responsibilities that come with the parental
role. The flip-side of this expectation is that they should then also be allowed
to make their own decisions. Without autonomy, there is no responsibility. Only
where parental abuse of power exposes children to clear harm should third
parties step in. On the basis of the evidence collected in the report, there is
no ground for maintaining that this would be the case where parents decide not
to tell their children that they were donor conceived.

Does the report invite parents to be dishonest? No it
does not: it invites them to consider the evidence that telling is usually
better and to take that into account when making a decision about their
situation. As said by sociologist Carol Smart at the report launch, we are
already witnessing a sea change towards greater openness. The report may
further contribute to this with its recommendations that emphasise support,
encouragement and empowerment.

The report's many recommendations not only address
professionals and regulators, but also suggest that the state, in its 'stewardship role', can be expected to promote the environment in which the
creation of families through donor conception is seen as unremarkable: as just
another way to create a family.

Wybo Dondorp, ethicist
at Maastricht University, NL, and member of the Nuffield Council Working Party
on donor conception