Goodbye UK DonorLink, hello Donor Conceived Register

Since the beginning of the year I have refrained from commenting on the Department of Health’s decision to award (uncontested) the contract for running the pre 1991 connection register for donor conceived adults and donors to the National Gamete Donation Trust. Breathtakingly unaware of the contradictions involved in combining these two activities, DoH intention was always to bring together the recruitment of gamete donors with the linking of offspring and donors.  Actually, they probably were aware but didn’t care anyway as saving money was what it was all about.  UK Donor Link, who have provided a very much appreciated service since 2004, declined to bid because of the tender conditions requiring these two activities to become bedfellows (see link to their site below for details).

This weekend sees the handover from UKDL to the new Donor Conceived Register run by the National Gamete Donation Service.  What can we expect from it?

One of the first differences is that the DCR will operate largely as an on-line, hands-off service.  UKDL, part of After Adoption Yorkshire, was staffed by people with considerable experience of linking genetic relatives under difficult circumstances.  The only person who will be contactable on the ‘phone at the DCR is lovely and a parent of a donor conceived child herself, but she does not have qualifications and experience that match in any way that of UKDL staff.  I am told that she has been unable to answer many of the questions put to her by current registrants seeking to clarify issues around whether they should continue their registration with the new service.  In the interests of all current registrants UKDL staff have been co-operating fully during these last three months of transition but have been dismayed by the lack of interest shown by the new team in just how their service operated.

UKDL had long been dissatisfied with the service they had been getting from the laboratory they had been using for DNA matching but because they have spent the last couple of years lurching from one funding crisis to the next, were unable to do anything about it.   Although not without controversy from within the registrants group, DCR have secured a much better DNA testing and matching service.  However, the laboratory will apparently have direct contact with registrants about the outcome, leaving the often confusing and/or distressing/exciting results unmediated by a supportive advisor.  Of course the donor conceived people on the receiving end of these results are adults and presumably the DCR feels it is patronising to think that they require mediation of any sort.  Experience from UKDL, however, shows that a proportion of those people receiving results can feel very vulnerable at this time and much value guidance from experienced professionals.  Not necessarily something DCR wanted to hear.

It’s difficult.  I know all the people behind the new DCR personally and have a lot of respect for each and every one of them.  For the sake of all new and old registrants, and this includes Zannah and me, I wish them all the luck in the world.  But do they really know what they have taken on?

http://www.donorconceivedregister.org.uk/

http://www.ukdonorlink.org.uk/

https://oliviasview.wordpress.com/2013/01/02/a-grandmothers-devotion-and-a-worrying-story/

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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 Goodbye UK DonorLink, hello Donor Conceived Register

  1. RachelP says:

    Just to clarify, by registrants group Olivia is referring to the Registrants Panel. As a member of said Panel I will be back to give my full thoughts on this transfer in due course.

  2. RachelP says:

    The controversy over the DNA testing was twofold. One, as basically all that is going to be provided by the new service is DNA testing the Registrants Panel felt it was very important that service users be involved in the process of selecting a lab, and NGDT did not consult with us regarding their choice of laboratory in any meaningful sense. That is to say, they spoke to just two of our members, in spite of us having stressed to them time and time again that these two particular people do NOT represent the RP and are not authorised to speak on behalf of the rest of us, and an explicit request on our part that we all be consulted on this issue. NGDT did invite us to a daytime meeting with the lab before the contract was signed – less than 24 hours before, so none of us (apart from those two individuals, who I suspect were given advance notice of it) could go! Essentially it was a fig-leaf consultation.

    And two, the lab is going to use an STR (short tandem repeat) test. An STR is a short sequence of DNA. UKDL’s lab also used an STR test, but what makes this lab better is that it will look at 25 STRs for registrants whose mothers are on the database and 32 STRs for registrants whose mothers aren’t on the database – UKDL’s lab only looked at 20 STRs for all registrants. However the RP sought independent advice from two professors of genetics, who recommend registrants instead have a newer test known as an SNP (single nucleotide polymorphism) test. This is much more powerful than an STR test, and only a bit more expensive. But, to date, NGDT have simply refused to even discuss the possibility of switching.

    Basically NGDT does not seem to want to work collaboratively, either with former UKDL staff or registrants. On the basis of my dealings with them, I feel they are contemptuous of registrants. Worrying…

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