Thoughts on re-registration of donors and other related stuff

Some interesting stats were given out by the HFEA at a recent meeting between them  and professional stakeholders.  These are the number of enquiries with regard to information held on the Register in the year ended December 2011.  The total was 181, breaking down into 12 donor conceived adults, 57 donors, 99 parents and 13 people (not specified whether donors or DC adults) whose donation or conception took place prior to 1991.  Apparently 112 donors have re-registered as identifiable (in total) and registrations by over 18s to the new donor sibling link now stand at 20.

It is hard to know what to make of these figures.  One that cheered me was the number of donors who have re-registered as willing to be known to any children they helped create, once those children are 18.  I started trying to calculate how many children that was likely to affect but realised how difficult this was in that egg donors are unlikely to be responsible for more than two children in any one family (and very often only one if they donate once) and from information released by the HFEA last year we know that sperm donors can be responsible for up to 18 or 20 offspring or as few as 2.  At least there are a good number of families whose children could have the right to information about their donor, providing of course the children have been told they are donor conceived and are interested in knowing more.

Of course 112 donors is only a very small percentage of those good men and women who have donated their sperm or eggs over the years between 1991 and 2005, but given that there has been virtually no publicity for the fact that re-registration has been possible since 2005, the number is surprisingly large.  We don’t know the breakdown between sperm and egg donors and it is possible that the largest percentage are women.  I say this because of the bond of empathy that often exists between women (see previous post about egg-sharing) and with this is likely to come a greater understanding of the future needs of children.  Egg donors, whether sharers or those donating without having treatment themselves, are also likely to have been better prepared for the implications of their gift.  This is partly because egg donation is a much more invasive procedure than sperm donation, necessitating not only greater thought beforehand but also greater contact with fertility clinic staff, who in turn are likely to be more respectful of egg donors (particularly those who offer their eggs voluntarily) because of what they are prepared to go through to help others.  Sperm donors, whose gift is inevitably linked to a pleasurable sexual act, were rarely encouraged to think about the consequences of what they were doing prior to the ending of anonymity.  This has changed a lot since 2005.

At a party for my un-god-daughter’s 21st last week we met a doctor who, it turned out, had been a sperm donor in the 1970s/early 80s.  He said he had volunteered to do this because of his enormous sympathy for women he had come across during his training as a gynaecologist who were unable to have a child because of male factor fertility problems.  So not just for the beer money as legend would have it.  He did not, of course, donate directly to his patients but via a clinic near the hospital where he was working.  Will he now re-register as identifiable?  We hope he will, although this will be with UK DonorLink rather than the HFEA.

No word yet from the Department of Health about the tendering that is supposed to be taking place for the future of UKDL and indeed the National Gamete Donation Trust.  Both now have had their funding extended to Christmas 2012, but even then the timescale is very short.  In the meantime both organisations continue with their respective good work.  NGDT will be an important part of a new, but limited by funds, campaign to start soon to encourage men and women who donated gametes and embryos between 1991 and 2005 to re-register as identifiable.  Hopefully the new HFEA National Donation Strategy Group will get behind this as well and as Laura Witjens, Chief Exec of NGDT is included in this select body we may hope for encouragement to this group to get on board with the campaign from her.  Others I am personally less sure about.  Some interesting and potentially exciting choices, including Erika Tranfield, parent to a donor conceived child and co-founder of Pride Angel, but others are establishment figures who have not been known to speak up for donor conceived people…of whom there are notably none.  Shame on the HFEA.  http://www.hfea.gov.uk/7345.html

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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 Thoughts on re-registration of donors and other related stuff

  1. Andrea Powell says:

    Hi Olivia,
    I’m also interested in those figures but don’t know what to make of them either! How many donors have there been since registering began in 1991? It feels like 112 is a very small number indeed, yet at the same time I am, like you, encouraged that some/any people HAVE taken the trouble to re-register. Kate is not currently interested in knowing her donor, but siblings are of interest to her. She turned 18 recently, but hasn’t yet got around to contacting the HFEA to see if there are any half-siblings making enquiries. There are 10 boys and 4 girls all turning 18 this year, so the odds are a little higher for her that someone else might contact the HFEA… but then, they might not have got around to it yet either!

  2. oliviasview says:

    Hi Andrea
    From the very small amount of research on DC adults who have known about their conception since they were young (and who have the possibility of knowing more about their donor and half-sibs), it would appear that at age 18 most are too busy with other life transitions and interests to enquire about genetic connections via their donor. Because of Kate’s involvement with DCN she is likely to have DC matters more to the fore of her consciousness than many of her half-sibs. This means that even if they know about being donor conceived they may not be interested, for the time being, in looking for others. Of course a proportion will not know they are DC and others may not know about the HFEA donor sibling link. She may need to be patient.

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