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Letter to the Parliamentary Under Secretary of State for Public Health concerning UK Donor Link

8 August 2011

This policy document is a letter written by Sarah Norcross, Director of the Progress Educational Trust (PET), to Anne Milton MP (Parliamentary Under Secretary of State for Public Health).

Dear Minister,

My colleagues and I were dismayed to learn that UK DonorLink - the voluntary contact register for adults who donated sperm or eggs, or were conceived using donor sperm or eggs, in the UK before August 1991 - is under threat of closure. It is our understanding that the funding for UK DonorLink is likely to come to an end in October this year.

A significant proportion of donor-conceived people and donors wish to find connections to their genetic relatives, and this has become routinely possible due to the inception of the Human Fertilisation and Embryology Authority in 1991 and the removal of entitlement to donor anonymity in 2005.

However, anyone who was donor-conceived or who donated prior to August 1991 has only one chance of finding genetic relatives, and that is to register with UK DonorLink, provide a DNA sample, and find out whether anyone else who is registered with this service is a match.

If UK DonorLink ceases to exist, then there will be no means for these people to find their genetic relatives. They will be disenfranchised.

We are aware that UK DonorLink is currently seeking alternative sources of funding. But we know, from our experience as a small charity working in the fields of assisted conception and genetics, that there is scant institutional funding available if one's organisation does not come under the auspices of academia (itself now beleaguered in terms of funding) and is too small and specific in its focus to tender for public or private sector contracts.

If Government policy on gamete donation is to continue to be predicated upon the principle of openness (including identifiable donors) then removing funding from UK DonorLink runs counter to policy. We believe that it is incumbent upon Government to ensure that donor-conceived people and donors are not prevented from finding their genetic relatives, simply because they had the misfortune to be conceived or to donate in the wrong year.

UK DonorLink is too crucial, sensitive and specific a service to be cast to the vagaries of the marketplace, where we fear it will have little prospect of surviving.

Yours sincerely,

Sarah Norcross (Director, Progress Educational Trust)