Some of us were left with rather bemused expressions on our faces following a meeting called by the HFEA yesterday to discuss various matters to do with donor conception. Many of us present had been battering for years at what felt like a tightly shut door on issues such as counselling and intermediary support services for applicants to the Register, improving the collection and sharing of donor information, re-registration of donors and generally improving information about donation. Now, led by the splendidly orange-shoe shod Juliet Tizzard, here they were about to put a paper to the July meeting of the Authority on all these issues…and more…but looking to consult with representatives from all the major organisations involved beforehand! What were we to make of it? Tucking my cynical tendencies carefully out of sight, I joined the others in applauding this fresh breeze blowing through our regulator, now finding a new energy following it’s release from the uncertainty over it’s future. It even seemed possible to raise questions such as the inclusion of children in the family of a donor on, if not the main register, the Donor Sibling Register, so that they could have the chance of finding half-siblings if they chose to do so; and reinstating the possibility of recipients having their donor number so that they can make contact, by mutual consent, with other families using the same donor. Raised in the context of single women choosing to import sperm from America because of the possibility of sibling tracing via the Donor Sibling Registry and the generally held view that using a UK donor has advantages for all concerned, interest was shown.
There was an interesting discussion about the pros and cons of providing both pen portrait and letter-to-the-child information to recipients at the point of choosing a donor. Although Regulations say that this should happen, many clinics actually deny recipients full information until a pregnancy is established. Jackson Kirkman-Brown, who runs the sperm donation service in Birmingham, argued powerfully that the quality of the information provided by donors in the child’s letter is considerably reduced by the need for it to contain nothing that can identify the person and because donors know that the parents will see it. This was not a decision-making meeting, but the very well made point will be taken back, as will the one I made that not all potential parents want ALL of the information about their donor at the time of treatment. Some prefer simply to match generally on physical characteristics but to leave the discovery of other information for their children in the future. This information came as a surprise to some present.
It looks as if the HFEA is going to take up the Nuffield Council on Bio-Ethics recommendation that they set up a separate web site simply for unbiased information on donation matters, starting with donors, the poorest served group in the donation triangle. It will be very interesting to see how they tackle the issue of ‘telling’…or actually ‘not telling’…Nuffield being very keen that this group’s needs and concerns should be recognised.
With a hint that there might actually be some money around to do things…although no promises made, we all left a little bit lighter in spirit if not in body…those free ice-creams went down a treat!