UK Voluntary Information Exchange and Contact Register Following Donor Conception Pre August 1991

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IMPORTANT INFORMATION

On 20th December 2012 the Department of Health awarded the contract to The National Gamete Donation Trust to run a new service called �The National Gamete Donation Service'

This organisation will incorporate a service to recruit more current gamete donors and the Voluntary Register for donor conceived adults and donors.

UK DonorLink is now in the process of transferring the Voluntary Register to the new provider and all existing Registrants will be receiving notification regarding this in the next few weeks. Please note no personal data will be transferred without your written consent.No new registrations will be processed during this time but anyone interested in registering should still contact UKDL and we will log your interest to pass to the new provider of the service.

The new name for the voluntary register is to be the DONOR CONCEIVED REGISTER which will be operational from 1 st April 2013.

Information on the new register can be found at www.transitionregister.co.uk and they also have an information line that you can ring them on  0845 643 6353

IMPORTANT NOTICE

It is with deep regret that UK DonorLink (AAY) has decided it cannot submit a bid for the tender to continue to run the Voluntary Register.  Our reasons are set out in our letter to the Department of Health as below.

We will continue to accept applications to register until 21 st December 2012.

From January to March 2013 there will be a transition period whilst UK DonorLink hands over to the new provider.

Please continue to check the website for further information.

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Letter to Department of Health from UK DonorLink  27 th November 2012:

Department of Health
South Wing, 6th Floor
Wellington House
133-155 Waterloo Road
London
SE1 8UG

ITT REF 58697   NATIONAL GAMETE DONATION SERVICE TENDER

Following discussions with the Trustees of After Adoption Yorkshire (AAY) and in confirmation of their decision we wish to inform the Department of Heath that AAY does not intend to tender for the �National Gamete Donation Service'.  The reasons for our decision are as follows:

1) We believe this to be a problematical and unworkable tender.  It is not appropriate to run a service for donor conceived adults and donors pre-1991 as an �add on' to a programme that is essentially focused on the recruitment of contemporary donors.  It is a perfectly legitimate aim for the UK Government to wish to increase the number of UK donors but the ethos and activities of the Voluntary Register are not compatible with this.

2) Cost recovery and charging :  Full cost recovery would make the service unaffordable for most Registrants. It is also unacceptable that only those who can pay should have a possible chance to link with genetic relatives.  This would turn the Voluntary Register into an elite service.  We also contend it is impossible for any organisation to run a service based on an annual payment as you would not know from one year to the next how many people were going to subscribe.

As Registrants can be on the Register for years before any (if any at all) links are made they are unlikely to be inclined to pay an annual subscription.

When canvassed on the question of payment a representative number of current Registrants said they would withdraw from the Register if unaffordable charges were introduced.

3) Web-based model and the use of social media : We have grave concerns about using the internet and social media as the core provision of services for donors and donor conceived adults.  Whilst we support the use of social media in raising the profile and promoting the services of the Register we would caution against its use for accessibility and linkage.  We are informed by experience in the field of adoption search and reunion (see BAAF publications � Facing up to Facebook ' 2010 and � Social Networking & Contact' a guide for Social Workers 2010).  The issues extend beyond �developing an appropriate framework for safeguarding sensitive information�.  Our view is that it is also about the understanding of the complex issues involved in intermediary work and the dangerous situations that can arise from unauthorised and unmediated contact.

4) DNA database : we are dismayed that the Tender provides one sentence on this complex and challenging area of work.  Given that links on the Voluntary Register are established through DNA testing we would have expected the Department of Health to be more prescriptive in its expectations for this part of the service.  An understanding of the complexities of how genetic relationships are established (particularly for half-sibling links) is essential.  This is an area where �false positives' can lead to people mistakenly being led to believe they are related.  Again, it is an area of work that needs to be mediated.

It is with great sadness and regret that AAY will no longer be responsible for the running of the Voluntary Register.

UK DonorLink is internationally recognised as a leading authority on the running of a DNA-based Voluntary Register.  Our expertise was sought by the providers of the only other DNA-based register in the world in the Netherlands when that was established in 2010.

Set up originally as a pilot in 2004, UK DonorLink has been viewed as a success by Ministers at the Department of Health.  We find it difficult to believe that any other organisation will have the experience and track record of service delivery in this field to be awarded a Contract which includes running the Voluntary Register.

Unfortunately, we feel we have been forced into making this very difficult decision not to tender ourselves by the way the Contract has been specified with its heavy emphasis on current donor recruitment.  The core business and extensive knowledge of AAY is to work with people separated from genetic relatives through adoption or donor conception and the support, counselling and intermediary work that follows from this. 

It is not that we feel we could not undertake the other requirements of the Tender, it is that we do not wish to undertake those activities.  They dominate the Contract and detract from the very important service to provide a Voluntary Contact Register for donor conceived adults and donors.

We also intend to make a public statement to be issued to the Press and to other professional bodies as to why we are not tendering for the National Gamete Donation Service.

Yours sincerely

UKDL

Freda Atherton, Chief Executive Officer

Christine Gunter, Christine Tidy, Susan Clark

Marilyn Crawshaw (National Adviser)

UK DonorLink

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