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Telling is more important than ever: rights and donor conception

19 January 2010
Appeared in BioNews 542
The last five years have seen a fundamental change in public policy in the UK over gamete donor anonymity. In 2004 the law allowed donor offspring to have access to identifying information about their donor when they reach 18 and the revised Human Fertilisation and Embryology (HFE) Act 2008 now includes new provisions for disclosure of information for donor-conceived individuals and gamete/embryo donors. However, there is an important omission in these recent policy developments: there are still no mechanisms to ensure people are told that they were conceived by donor gametes. The increased focus on encouraging the disclosure of both identifying and non-identifying information mean that 'telling' people (if they were conceived with donor gametes) is more of an issue that it has ever been. Arguably, the cost of not being told is now even higher - they are, effectively, being denied information held about them by a public body. In this commentary I want to look at this issue from a rights perspective.

In considering the role that rights play in the practice of non-anonymous donation it has been common to refer to one single, all-encompassing right: the right of the person to know the identity of their gamete donor. However, this is in fact made up of two, quite different, rights. First, there is the right to know the circumstances of one's conception, to be 'told', and second, there is the right to identifying information about the gamete donor (1). This second right has been enshrined as a legal right whereas the first right, as the law stands, is left as a moral right - a right that exists independently of any legal rules (2).

In order to benefit from this legal right (to have information about their gamete donor), the person must have a prior moral right met - the right to be told - and the existence of such a right signifies the consequent imposition of a moral duty on others (3). Under the current system this moral duty falls upon the parents. This means that a child's legal right to information is contingent on their parent's fulfilment of a moral (rather than a legal) duty. With non-anonymous donation, although claims are made in respect of the rights of the child, in leaving the duty of telling to the parents there is an implicit recognition that it is the parent's right to privacy, rather than the child's right to know, which is ultimately seen as having the greatest importance (4). Although parents are encouraged to tell their child (the HFEA, Human Fertilisation and EmbryologyAuthority's Code of Practice, for example, has included an enlarged section on the importance of informing children of their donor origins, since its 7th Edition published in 2007) it is ultimately left up to the parents to decide if and when they will tell.

It is useful to compare this situation with adoption. The claim, that children have a right to know the identity of their genetic parents, is the same in both cases. However, the rights that adoptive children have in practice are quite different. This difference is based, I would argue, on the fact that for adoptive children the two component parts of their right to know the identity of their genetic parents - the right to know about the circumstances of their conception, and the right to information identifying their genetic parents - are both given legal status. The right to be told is not dependent upon care givers fulfilling a moral duty.

There is clearly an important contradiction at the very heart of the policy over non-anonymous gamete donation - only one part of the person's right to know the identity of their gamete donor is enshrined in law. In light of the revised HFE Act recently coming into force, it is now time to turn this moral right to be told into a legally enforceable right. There have been suggestions that some form of birth certificate annotation could be one means of doing this (5), although it is not without its detractors. However, whatever mechanism is chosen the time to ensure telling is upon us.

1) Frith, L., Beneath the rhetoric: the role of rights in the practice of non-anonymous gamete donation'
Bioethics Vol 15, No 5/6, p 473-484 |  2001
2) Feinberg, J., 'Social Philosophy'
Prentice Hall, NJ Engelwood Cliffs |  1 January 1973
3) Raz, J., 'On the nature of rights'
Mind Vol xciii, pp194-214 |  1984
4) Nathanson, V., 'More than a Gene Pool - Informing Children Born from Donated Sperm or Eggs Would Undermine the Real Job of Parenting'
The Guardian |  2 August 2007
5) Blyth, E., Frith, L., Jones, C., & Speirs, J., 'The role of birth certificates in relation to access to biographical and genetic history in donor conception'
Int Journal of Children's Rights, Vol 17 (2), pp 207-223 |  2009
29 October 2012 - by Dr Gillian Lockwood 
The recent case in which a woman called for legal changes to prevent men from donating sperm without their wife's consent has already drawn interesting responses. However, debates about whether gametes may be regarded as 'marital assets' fail to capture the essence of the woman's sense of injustice. The whole point is 'What do we tell the children?'...
27 June 2011 - by Professor Naomi Cahn and Wendy Kramer 
The fertility industry in the US state of Washington will be transformed in late July 2011, when a new law to recognise rights of donor-conceived people comes into effect. Under the changes, anyone who provides gametes to a fertility clinic in the state must also provide identifying information about themselves and their medical history...
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