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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.

Donor Mum: The Children I've Never Met
BBC One |  30 August 2011
UK DonorLink
UK DonorLink |  26 August 2011
14 November 2011 - by Sarah Norcross 
This year the Progress Educational Trust decided to exhibit at the Fertility Show again. The Fertility Show is a popular consumer event aimed at those who want information or advice on fertility. But as such, it evokes mixed feelings...
19 September 2011 - by Dr Rachael Panizzo 
UK DonorLink (UKDL) has been offered a further grant from the UK Government while alternative funding options for the service are considered....
5 September 2011 - by Jenny Dunlop 
Anyone who has worked in any capacity in a fertility clinic will, I hope, have wondered what the meeting of an anonymous donor and the donor-conceived person would be like. Would it be like a birth parent meeting an adopted child; would it be like TV documentaries, with all the build up and the huge emotion?...
22 August 2011 - by Dr Vivienne Raper 
UK Donor Link (UKDL) - the voluntary contact register for adults conceived with or who donated sperm or eggs before August 1991 - is threatened with closure...
23 August 2010 - by Professor Eric Blyth, Dr Marilyn Crawshaw, Dr Lucy Frith, Dr Caroline Jones and Dr Jennifer Speirs 
The UK government's review of Arm's Length Bodies (ALB) in the National Health Service has indicated that the Human Fertilisation and Embryology Authority (HFEA) has had its day as a free-standing regulatory body...
15 June 2009 - by Antony Starza-Allen 
The entitlement to anonymity of UK sperm and egg donors ended in 2005, a development that has been welcomed by those who spent long years campaigning for it, and criticised by those who blame it for a current shortage of donor sperm and eggs. Because this change in law applies only prospectively, it remains difficult - if not impossible - for previous generations of donor-conceived individuals to locate their genetic parents and other genetic relatives. Initiatives such as UK DonorLink and it...
6 June 2005 - by BioNews 
A year after its launch, UK Donorlink, a voluntary register that enables people conceived in the UK using donated eggs, sperm or embryos to contact their donors and biological half-siblings, has reported successful matches of ten adults in their 40s and 50s with their half-siblings. The registry, funded by the...
23 April 2004 - by BioNews 
A voluntary register that enables people conceived using donated eggs, sperm or embryos to contact their donors and biological half-siblings has been launched in the UK. The registry, called UK DonorLink and funded by the Department of Health (DH), can be used by anyone over the age of 18 and...
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