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

22 April 2013
Appeared in BioNews 701

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

SOURCES & REFERENCES
Donor conception: ethical aspects of information sharing
Nuffield Council on Bioethics |  17 April 2013
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HAVE YOUR SAY
Comment (User:110981 - 23/04/2013)
I was unable to be at the report launch, but the report does prioritise the interests of parents over those of their donor-conceived children and, yes, the interests of families and children would be better served if mandatory openness was imposed from the outside. Not telling puts children at risk of accidental incest. I think that counts as exposing them to "clear harm". If parents can't be relied on to do the right thing of their own accord then they should be made to do it (you talk about the ideal of openness as though ideal is a dirty word! I just thought it meant 'best').
Comment (User:110981 - 23/04/2013)
Furthermore, I wish to point out that family policy in every field apart from donor conception considers children's welfare paramount where interests and rights between adults and children are disputed. Yet this report says "Donor-conceived people have a responsibility, commensurate with their age and understanding, to do their best to understand the reasons why their parents chose to create a family through treatment with donated gametes, and why they made the decisions they did about disclosure: in short to be aware that parents, too, may be vulnerable"(p.20)! I was flabbergasted when I read that - apparently we have to parent our parents!
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