29 April 2013
Professor of social work at the University of Huddersfield and co-chair of the Project Group on Assisted Reproduction (PROGAR)Appeared in BioNews 702
Donor-conceived individuals might justifiably feel short-changed by the Nuffield Council on Bioethics' report 'Donor conception: ethical aspects of information sharing' (1). The British Medical Journal, deciding journalistic hype to be unnecessary, headlined a key recommendation of the report as: 'Donor conceived children shouldn't have right to be told of their origins, says Nuffield Council' (2).
What the report actually stated was: 'Other things being equal, it will usually be better for children to be told, by their parents and at an early age, that they are donor-conceived. The Working Party takes the view that the parents of donor-conceived children thus have a responsibility to give careful consideration to the question as to whether or not they should be open with their children about how they were conceived'.
This allows for situations in which parents might well feel justified in not telling their donor-conceived children about their conception.
Contrast this with the explicit message in the Human Fertilisation and Embryology Act 1990 (as amended) that unequivocally advocates 'the importance of informing any resulting child at an early age that the child results from the gametes of a person who is not a parent of the child'. (3)
In this regard the report has taken a step backwards from the position already achieved in the UK.
Elsewhere the report provides a catalogue of missed opportunities. Take, for example, the situation of around 30,000 children and young adults conceived following donor conception in the UK between 1992 and 2006. The Human Fertilisation and Embryology Authority (HFEA) holds records of the donor procedures that resulted in their births, including the identity of their donor. However, as the law stands, donor-identifying information will not be disclosed to donor-conceived persons.
The report barely mentions these individuals, although it is hard not to imagine that some of them at least will consider the law has given them a poor deal in withholding personal information from them. Of course, retrospective disclosure of the identity of donors who were either assured of anonymity or were given no choice about being anonymous, with or without their consent, is a complex and contentious matter (4, 5), albeit not given much consideration in this report.
However, a 'softer option' of clinics contacting their anonymous donors to enquire if they would be willing to disclose their identity is dismissed out of hand on the grounds of 'entail[ing] serious concerns about breach of confidentiality'.
This assertion is patently absurd. I have conducted research with anonymous sperm donors, for which it was possible to devise sufficiently sensitive and discreet methods of approaching donors to the satisfaction of both my own university and an NHS Research Ethics Committee (6, 7).
Self-evidently, if this can achieved for research purposes it can also be done for what in my view is the far more important reason of enabling a donor-conceived person to find out more about her or his biographical heritage. The report conceives of an alternative strategy, recommending that the HFEA and the Donor Conceived Register (the new entity responsible for the voluntary register formerly run by UK DonorLink) initiate a public information campaign about donor conception and the possibility for past donors to make themselves identifiable if they wish.
If this is to have any chance of success, it is to be hoped that the host organisation for the Donor Conceived Register, the National Gamete Donation Trust, which has shown adroitness in past donor recruitment campaigns, will take the lead role in this. We should not have too high expectations of the HFEA, a body which previously refused to take on responsibility for the voluntary register and thus – albeit inadvertently, perhaps – cast a shadow on the register's future viability (8). The HFEA further prevented fertility clinics from sharing donor codes with recipient parents (see BioNews 498) and failed to promote the development of professional support and intermediary services despite a commitment to doing so a decade ago when responding to 'Opening the Record' (9), a report from the British Infertility Counselling Association.
The UK has deservedly gained an international reputation as a leader in promoting transparency and openness in donor conception. Nevertheless many issues remain, in addition to those discussed earlier: such as whether donor conception should be recorded on birth registration documentation; the promotion and facilitation of information-exchange and contact between donor half-siblings; the interests of children of donors; the interests of descendants of donor-conceived people; the age at which donor-conceived people should be able to access information about their donor, and the development of counselling and intermediary services to support information-sharing and contact.
The Working Party that compiled this report was disproportionately dominated by academics and was handicapped from the outset by the failure to include among its membership either a donor-conceived person or the parent of a donor-conceived child. It has done little to advance meaningful debate relating to information sharing in donor conception, which begs the question 'what was the point'?