Musings on the people behind statistics

Some interesting stats have emerged from the HFEA Opening the Register section.  Apparently in 2012 181 people applied for information held on the register.  There were 99 parents, 63 donors, 14 donor conceived people (post 1991) and 5 pre 1991 donor conceived people who were referred to UK Donor Link.  There are 24 donor conceived people (who will all be between 18 and 20) on the Donor Sibling Link but no matches have yet been made between siblings.  And finally 116 previously anonymous donors have chosen to re-register.

The first thing that strikes me about these figures is how small they are.  With around 1500 births of children conceived by donation in UK (and of course many more from those conceived abroad) each year, how come only 99 parents, for instance, contacted the HFEA, presumably for information about half-siblings.  We don’t have a break down of the circumstances of those who made enquiries, but it would be fascinating to know if, for instance, parents of egg donation conceived children are less or more curious than those with children conceived by sperm donation.  I suspect that a large number of applicants to the register are solo mothers who are often much more interested in the possibility of half-sibs than those in heterosexual or lesbian couple relationships.

And are the donors predominantly egg or sperm?  My fantasy is that egg donors, particularly those not going through IVF themselves, would somehow be more motivated to find out if their donation had resulted in a child.  But maybe it is the egg sharers who need to know most, because whether or not their own treatment was successful, they have no exemption from being identified when a child is 18 and they need to be prepared for that.  Does thinking about egg donors first mean that I am sceptical about sperm donors being interested in the result of their donation?  I don’t think so, but my fantasy again is that sperm donors make enquiries quite a long time after they have completed donating.  So applications to the register may be made this year but their donations are likely to have stopped some time ago.  I have no solid basis for thinking this, however.

I do wonder what the younger donor conceived people were looking for.  Details about their donor, contact with half-sibs?  Were they upset, confused, angry or sad or just comfortable and looking for information?   And do the 14 young enquirers form part of the 24 18 to 20 year olds who are on the Donor Sibling Link, or were they getting in touch for different reasons?  Stats are so frustrating without personal detail.

The saddest figure of all is that of donors who have re-registered and here I am completely unclear whether the figure of 116 is just for 2012 or constitutes the total of donors who have re-registered…ever!

Although I would never want to put pressure on former donors who had been promised anonymity to re-register as identifiable, I do think it is fair enough to provide information for them to be able to understand how very valuable details about their life and medical history could be for some donor conceived people.  I am part of a group of people who are trying to get this information made available to former donors via web sites they may be looking at, but what it really needs is a big public campaign.  Sperm donors used to be mainly students, often medics, but these days they come from all walks of life and information about re-registration needs to be everywhere, not targeted to specific audiences.  Similarly, egg donors are everywoman…although individually very special women.

There is, however, no money in donor conception.  Plenty for the private clinics that help create the pregnancies, but virtually none thereafter.  Who would be interested in funding a campaign to inform former donors about re-registration?  Those who would benefit are donor conceived adults but they are not an organised group and unlikely to be a wealthy one anyway.  Donor conceived people are not a cause you can put a collecting tin under peoples noses for.  Their particular disadvantage (if it can be thought of that way) is not one that appeals to general sympathies.

Hopefully 2013 should see some movement in this area.  The group I am part of has been reinvigorated recently and I am optimistic that this time next year the stats on donor re-registration will be looking much healthier.

 

 

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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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