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UK DonorLink: the service users' perspective on its uncertain future

19 April 2012

By Rachel Pepa

On behalf of the UK DonorLink Registrants Panel

Appeared in BioNews 653
On 8 March staff at UK DonorLink (UKDL) were informed that the Government would discontinue the charity's funding as of September this year. They were told that the voluntary contact register service it provides for adults conceived with, or who donated, sperm or eggs before August 1991 would be transferred to the National Gamete Donation Trust (NGDT) by means of a single tender process, meaning it would be combined with the promotion of donor conception.

The letter explaining Anne Milton's decision as Public Health Minister said: 'We needed to weigh up our limited recourse to funding, the requirements of the whole sector and organisations' flexibility to adapt to the changing environment. The aim of supporting NGDT to undertake a broader role is in recognition of this, and of the very real risk of no Departmental funding for gamete donation otherwise'.

A voluntary register service for donor-conceived (DC) adults and past donors who are genetically related is, in our view as the UKDL Registrants Panel, neither part of the 'whole sector' nor should it be seen as part of funding for 'gamete donation'.

As many BioNews readers will know, NGDT was set up to raise awareness, and alleviate the shortage, of egg and sperm donors in the UK – essentially promoting donor recruitment (that there actually is a shortage of sperm donors is disputed (1)). It employs no professional support staff and has no track record of service provision.

The choice of NGDT makes clear that the Minister sees no conflict of interest here, and has no concerns about transferring a sensitive service to an unproven provider. This conflict is obvious to DC people and past donors on the Registrants Panel, who wrote to the Minister with their concerns last autumn when NGDT first expressed an interest. These concerns were only heightened when NGDT refused to share their proposals with us.

Not only is the fertility industry responsible for DC adults having no information about their biological families on their donor's side, but, we were alarmed to read, even now some clinics restrict the release of non-identifying donor information to parents. This is despite the HFEA's current guidance (as discussed in BioNews 646), and consequently many DC people mistrust the industry.

The conflict was also recognised by the British Infertility Counselling Association, who have stressed the need for the register to be independent of the fertility sector, stating: 'The body that maintains the Register cannot be linked in any way to donor recruitment or any commercial service… The dignity and integrity of the Register and of the registrants themselves requires that it be entirely separate to such activity' (2).

What has followed seems nothing short of a shambles. It has now emerged that the intention to use a single tender process is almost certainly against the rules of tendering. There will instead need to be an open tender, with a detailed service specification under EU rules which makes it likely to be a lengthy process (well in excess of the six months of funding UKDL and NGDT each have left).

This haphazard approach to meeting the needs of DC people stands in complete contrast to the recommendations of the Law Reform Committee of the Parliament of Victoria in Australia released at the start of this month. Its belief is that the state has a responsibility to provide all DC people with an opportunity to access information (including identifying information) about their donors, regardless of when they were born.

This is on the grounds that, first, this is their fundamental human right and, second, in the field of assisted reproduction the welfare and interests of people born as a result outweighs all other concerns (3). It recommends the introduction of DNA matching where appropriate (i.e. a service like UKDL), incorporating factors that have been recognised by UKDL since its inception as crucial to the running of a successful register. These include access to ample professional support, intermediary services and counselling for registrants, management by a neutral agency with no links to the fertility industry and a free service.

Searching for donors or half-siblings is emotionally demanding. As the Victorian report notes: 'Contact between donor-conception stakeholders… is still very new and uncharted territory. All parties will feel vulnerable throughout this process and will struggle to determine the appropriate way to proceed. It is important that particularly leading up to and during this process, comprehensive counselling and support services be available to these people and their families' (4).

This is made yet more difficult by the inexact nature of DNA matching. While the paternity and maternity DNA analysis required to match a DC person with the donor is clear-cut, matching siblings through the DNA markers used for paternity testing (which is what UKDL does) can only provide a probability that people are half-siblings, throwing up false positives and false negatives. This necessitates scientific advice as well as emotional support for registrants as they navigate the DNA testing process. Making matches is not a job for bureaucrats, but for suitably qualified professionals - social workers and/or counsellors, skilled intermediaries who can help donor relatives to develop relationships slowly and safely.

To conclude, running a voluntary register with any meaningful degree of success, that is to say, a register that promotes the welfare of its registrants and keeps them safe, is a highly specialist enterprise. UKDL was the first, and, until recently, the only register in the world to use DNA matching. In the eight years that it has been operating its employees have built up invaluable expertise in handling DNA test results and mediating between donor relatives accordingly.

That the Government has even contemplated handing control of the service over to the NGDT is total madness. This is an organisation largely run by volunteers, with no professional staff, no experience of providing intermediary services, and which has expressed an intention to charge registrants for the service - not to mention its conflict of interest due to close ties to the fertility industry. The Registrants Panel firmly believe that the register should remain in UKDL's hands. Unfortunately it seems we will not be assured of this anytime soon.

 

SOURCES & REFERENCES
Guardian | 19 September 2010
 
2) British Infertility Counsellors Association, Letter to the Department of Health
British Infertility Counsellors Association | 07 November 2011
 
Parliament of Victoria | 28 March 2012
 
Parliament of Victoria | 28 March 2012
 

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22 August 2011 - by Dr Vivienne Raper 
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