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BBC documentary shows why we need UK DonorLink

30 August 2011
By Dr Marilyn Crawshaw
Marilyn Crawshaw is national adviser to UK DonorLink, Honorary Fellow at the University of York and a freelance researcher and writer
Appeared in BioNews 622
A BBC1 documentary 'Donor Mum: The children I've never met' is to be broadcast at 10.35pm tonight (30 August). The programme tells the extraordinary story of a woman - herself the single mother, by choice, of a donor insemination-conceived adult son – meeting with the twins born from her egg donation nineteen years ago. 

The contact was made with the help of UK DonorLink (UKDL), the UK voluntary information exchange and contact register for adults genetically related through donor conception prior to August 1991 when the HFEA statutory register of licensed fertility treatments was set up. Yet UKDL is facing closure at the end of October unless the public health minister, Anne Milton, acts to save it.

UKDL – to whom I am national adviser - was set up as a pilot by the UK Department of Health in 2004. Despite working with the most 'difficult to reach' group of donor-conceived adults and donors, we have already attracted more than 400 people to register and linked a number of genetic half siblings, donor offspring and donors.

There are potentially thousands still to come forward as increasing numbers of donor-conceived adults are being told of the nature of their origins and more donors are understanding the potential significance to their offsprings' well-being of making themselves available – often prompted by media coverage like tonight's documentary.

Few UK adult donor offspring born before 1991 have access to records of their conception and/or information about their donor or genetic siblings. UKDL is the world's first register to use DNA as the route for 'linking' such genetic relatives and other countries are starting to follow our lead. Our work is providing much - needed information about the emotional and scientific complexity of the process.

Those for whom UKDL caters were conceived when secrecy was the norm. Many using our service only learn of their status in adulthood, often accompanied by significant trauma. They neither have their donor's code (and many donors from that era were not allocated a code) nor any right of access to the medical records of their conception; indeed many are likely to have been destroyed. Donors too are having to adjust to the realisation that their actions as younger men have a legacy – and we have supported many in telling partners and children of their involvement.

We believe that our ability to provide hope of finding genetic relatives through DNA, offer peer support from other donor offspring and donors, and professional support and intermediary services has been vital.

Government ministers have acknowledged the success of the UKDL pilot, but have so far failed to find a way to secure its future. Our current grant runs out at the end of October. We have therefore, with great reluctance, had to take the very difficult step to announce that we will be unable to take any registrations following tonight's broadcast. We would be unable to guarantee that we could help people complete the process of having their DNA taken, matched and any links acted on at a pace right for the people concerned within the time we have left and while we are closing down the service. We are asking anyone affected to nevertheless register an Expression of Interest through our website (see below) or helpline (0113 264 1631).

Our existing registrants feel let down, angry and distressed that our first opportunity for major media coverage comes at a time when we may be unable to capitalise on it.

We have been buoyed by the tremendous support extended to UKDL from around the world - by those personally affected, professionals of all disciplines, academics and politicians. We know that many are waiting to see what the UK Government decides to do as this may have repercussions in their own country.

We hope the UK Government will be able to secure our future so we can help those that come forward from tonight's documentary. We also wish to affirm the principle that donor-conceived people should have the right to knowledge of their origins and a route through which to exchange information with genetic relatives, regardless of the legislation or guidance in place at the time of their birth.

SOURCES & REFERENCES
Donor Mum: The Children I've Never Met
BBC One |  30 August 2011
UK DonorLink
UK DonorLink |  26 August 2011
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