I attended a meeting of the board of the Human Fertilisation and Embryology Authority (HFEA) yesterday. Over the last few months they have been doing some complex work examining the quality of the information they gather and how this is made available and presented to the public. There was a public consultation and focus groups for stakeholders plus input from several ‘expert’ groups that fed recommendations for changes into an overall Advisory Group. I took part in a focus group for parents of donor conceived children and Walter and I were part of one of these ‘expert’ groups, as was the co-ordinator for solo mums at DC Network. One of the strong recommendations to the Advisory Group from the group I was part of was that information about the availability of donors should be included by clinics in their entry on the HFEA site.
DC Network hears virtually every day from people who have been told by their fertility doctor that the waiting list for egg donation in the UK is about two years, but, hey ho, they happen to have a link to a lovely little clinic in Spain (or wherever but it usually is Spain or Cyprus) where egg donors are freely available. Why not go there instead? No explanation about the differences, particularly for the child, about having treatment in the UK or abroad is usually given and some people end up very shocked to find that their child’s information will not be on the HFEA register and they have no rights at all to contact, at any age, with the donor or half-siblings.
If availability of donors was mandatory information that clinics had to provide, potential recipients could understand much better that some clinics don’t bother to recruit donors themselves and always send people abroad but other clinics put a lot of effort into finding good donors and many have no or very short waiting lists. Going abroad for egg donation, or for that matter sperm donation, is absolutely not necessary unless there is some reason particular to that individual or couple, for doing so.
So when I saw in the Authority papers that the Advisory Group were not recommending information about donor availability to be included I was shocked (and pretty angry to be honest). I had briefed a couple of Authority members about this issue and they spoke up well to support the inclusion of the information. They were supported by two other members, one of whom works in a non-medical capacity at a fertility clinic and understands the problem only too well. What was fascinating was hearing from Dr Alan Thornhill who chaired the Advisory Group. He agreed that everyone on the Group understood how important this information was for patients but that in the end they had decided that a) the information was too complex to collect, even a six monthly average as had been suggested, because the situation with donor availability was so fluid, and b) that it was thought that it gave an opportunity for clinics to ‘game’ the figures in their favour! As if they weren’t ‘gaming’ by giving mis-information now. Sensible Chair Sally Cheshire suggested that the Authority proceed boldly in this area and referred the matter to be reconsidered.
I will be watching.
Update at 10th February: HFEA Update, the eNewsletter circulated by the Authority stated that information about availability of donor gametes to be included in clinic information was one of the agreements made at the January meeting. As I clearly heard it being referred back for further consideration I asked Peter Thompson, CEO of the HFEA for clarification. This is what he said –
“The discussion of this issue was not straightforward but let me try to summarise the decision that was reached: – The IFQ advisory group agreed that information about the availability of donor gametes and embryos was useful for patients, but were concerned that accurate information on average waiting times might be difficult to achieve. For that reason, they recommended that ‘only self-reported information on a clinic’s type of donors, and source, is provided on Choose a Fertility Clinic.’ (see page 22) – That recommendation was endorsed in the covering Authority paper (see para 5.14) – However, at the meeting on 21 January the Authority asked the Executive to think again. While the detail has to be worked out, the Authority has in effect asked us to be a bit bolder than the recommendation in the paper. So we will be providing information on donor availability on the new CaFC website. That information will include self-reported information but we also plan to include some indicator of average waiting times, while accepting that such information can only be indicative rather than definitive.”
This is almost exactly the recommendation that had been made by the IFQ04 expert group that I had been part of. A small victory I think.