There have been recent reports that the UK's assisted reproduction regulator, the Human Fertilisation and Embryology Authority (HFEA), is considering changing the law surrounding donor anonymity (see BioNews 1145), due to the growing use of consumer genetic testing.
The UK does not operate a system of donor anonymity, unlike other jurisdictions. Instead, the HFEA has suggested it is considering changing the age at which identifying information is accessible. Young people conceived since 2005 are now able to access non-identifying information about their donor at 16 and identifying information at 18. It was suggested in an interview with Peter Thompson, chief executive of the HFEA, in the Guardian that the Authority could be considering making identifying information about donors available to families from birth or even before, allowing parents to share this information with their child during childhood.
This is an interesting proposal; while the change in the law that lifted donor anonymity in 2005 was often seen as being concerned with the rights of donor conceived children to know about their origins, it is not actually about the protection of children's rights, since identifying information about donors is not available until the age of 18, and then, only to individuals who know they have been donor conceived.
A proposal to allow access to information about donors from birth would allow for the recognition of rights during childhood. The proposal rightly recognises children's rights in relation to identity: a child has a right to identity under both the European Convention on Human Rights and the United Nations Convention on the Rights of the Child. This right was interpreted by the European Court of Human Rights in 2002 as meaning that a child should be able to find out the identity of genetic progenitors in the context of paternity testing.
Restricting access to such information during childhood fails to recognise childhood as an important phase of identity development. Regarding disclosure of donor conception, a paper published in Human Reproduction over 20 years ago argued that disclosure from a young age could be beneficial in helping children incorporate donor conception into their sense of self throughout childhood, rather than requiring later adjustments. This approach is also supported by the HFEA and the Donor Conception Network. One study published in Human Reproduction reported that parents have had positive experiences of the disclosure process in pre-school years and that children responded with curiosity and sometimes pleasure.
While these studies relate to disclosure of the fact of donor conception, the use of known donation, where the identity of the donor is known to the family, is also seen in a positive light, due to the openness it allows (see BioNews 1064).
Allowing earlier access to identifying information about donors also recognises children's autonomy by recognising children as agents who can make their own decisions about accessing origin information. However, if a new system is to be truly respectful of children's developing autonomy, as I have suggested in the Medical Law Review that the possibility of accessing donor information should be presented to children at various points to ascertain their interest in accessing this information. Decisions about access to information and contact with donors should be based on the views of the child with appropriate support and guidance from parents.
In line with this, identifying information should be retained by the HFEA or clinics and released on the basis of the consent of the parent/s and the consent or assent of the child, rather than allowing release of identifying information to parents at birth or before. This would recognise that the information pertains to the child's origins and therefore decisions about its release should be based on their views. This would be compliant with Article 12 of the UNCRC, which requires that children's views should be given due weight in accordance with their age and maturity, and with Article 5 of the UNCRC which recognises the need to respect the rights of parents to provide appropriate guidance to children in the exercise of their rights 'in a manner consistent with the evolving capacities of the child.'
However, the above proposal only works if parents are willing to tell children they are donor conceived. Therefore, since all children should be treated equally in the enjoyment of their rights (Article 2 UNCRC), measures to encourage disclosure or a system of mandatory disclosure would need to be considered. Of course, given the availability of anonymous gamete donation in other jurisdictions, complete parity in the enjoyment of children's rights is not possible. Whether children should be able to access identifying information without parental consent and knowledge is also an important question. I have also suggested in the Medical Law Review that this could be addressed in the same way as healthcare decision-making: those over 16 could consent to access such information and those under 16 would need to be Gillick competent, ie, have 'sufficient understanding and intelligence to enable him or her to understand fully what is proposed.'
Not everyone agrees that a change in the law is the correct way forward: some argue it will cause a drop in donor numbers. However, as noted by HFEA chief executive Peter Thompson, this concern proved to be unfounded in 2005 when the law changed, with donor numbers dipping and then recovering. Even though the current proposal goes further than the 2005 changes, he argues that 'there's no hard evidence that you would lose donors.'
Second, some argue the availability of such information to children at a young age might not be in the best interests of the child; this system might disrupt bonds within the family, cause confusion about identity or be seen as placing too much emphasis on genetic links. However, given the positive implications of this proposal for the recognition of children's rights, these challenges are not insurmountable. Support for the disclosure process and guidance on how to resolve potential conflicts about access to information would be needed from the HFEA, clinics and support bodies In addition, it can be argued that allowing children to access information about genetics origins does not valorise genetic links, but rather allows children to make their own decisions about their importance.
In sum, allowing access to donor information at birth is a step in the right direction from a children's rights perspective; it recognises the donor-conceived child as an independent rights-holder, who will have their own desires about access to information and their own identity which develops throughout childhood. It moves away from seeing adulthood as the point at which rights to autonomy and identity crystallise. However, there are many elements which need to be carefully considered, as outlined above.
While this would be a positive development, it does not seem to have been sparked by arguments about children's rights; it has been driven by the fact that the rise in consumer genetic testing means that securing anonymity is no longer possible. Thompson notes: 'You can see a position in the future where confidentiality just becomes impossible, whatever the attitude of families…'. If it is decided that this proposal is the right way forward, it should be reframed as a move towards a children's rights compliant framework, and, to be truly compliant, children, in particular those who are donor-conceived, should be consulted on its development.
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