The HFEA ‘gets it’ at last!

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!

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About oliviasview

Co-founder and now Practice Consultant at Donor Conception Network. Mother to two donor conceived adults and a son conceived without help in my first marriage.
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2 Responses to The HFEA ‘gets it’ at last!

  1. RachelP says:

    Ever since I read this I’ve been meaning to comment on your extraordinary assertion that donors are “the poorest served group in the donation triangle”, apologies for not doing so until now. Do you really believe that? For to me it is clear that donor-conceived people are the poorest served group, by a long shot.

    Firstly, we are the only part of the donation triangle that doesn’t consent to taking part.

    Secondly, because we don’t consent to taking part, and because there is no mechanism forcing parents to tell us that we have done so, we often don’t know we’re donor-conceived and so it has been hard for us to organise ourselves and fight for recognition of our rights.

    And finally, the interests of parents and donors are consistently put ahead of the interests of donor-conceived people. In my own case I can’t know who my donor is because his “need” for anonymity is deemed more important than my need to know where I come from. And of course I’m in this situation because my parents’ need to have a child was deemed more important than anything else. Even now infertility is seen as intolerable. The recent Nuffield report entreated donor-conceived people “to do their best to understand the reasons why their parents chose to create a family through treatment with donated gametes, and why they made the decisions they did about disclosure: in short to be aware that parents, too, may be vulnerable” – i.e. our parents must have our sympathy, even if they lie to us about our origins. Am I alone in thinking this is messed up?

  2. oliviasview says:

    I am sorry you find my assertion surprising Rachel. I completely understand where you are coming from but I still believe that donors are the poorest served community as…basically they have no community. Those who donated after 1991 have no-where to turn for support or advice about telling their parents or own children about donating and nor do their children have the right to be on any register in order to be in touch with half-sibs. If we want more identifiable donors to come forward then they need to have services in place to answer their questions and support them when they need it.
    Of course donor conceived adults need services too and of course it was wrong that donors were anonymous when you (and Walter’s and my children) were conceived. In fact we don’t know if earlier donors would have been willing to be identifiable. They didn’t have any choice about being anonymous and certainly in those days clinics did not talk with donors about the needs of donor conceived people.
    With regard to infertility being ‘intolerable’ I actually think that a lot more people than we think decide not to go ahead with fertility treatment and certainly using donated gametes. It remains a path that many people feel is inappropriate. That said, I wonder as a parent how you would have felt it you could not have had G? I know I would find my life much less fulfilled without children and thank goodness our children seem pleased to be here and comfortable with being donor conceived (I recognise that these two things don’t necessarily go together).
    I completely agree with your point about Nuffield and I took Rhona Knight up on this at a conference i was at recently with her.

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