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Donor Conceived Register to close as HFEA ends funding

19 March 2018
Appeared in BioNews 942

The UK's Human Fertilisation and Embryology Authority has said that it will halt funding for the Donor Conceived Register from the end of May.

The register has facilitated voluntary contact between people in the UK conceived through donated sperm or egg before 1991 and their donors, allowing them to exchange information or get in touch if they wish.

'We have carefully considered the options and on reflection, we now feel there are alternative ways in which support groups can form, removing the requirement for a central body to coordinate the group,' the HFEA wrote in a letter to the National Gamete Donation Trust (NGDT), the charity that runs the register.

'The DNA testing market has progressed in recent years and it is now possible for tests to be commissioned independently without the need for a central body to oversee this,' it added.

The HFEA put the contract for the register out to tender in December 2017. The NGDT, which has managed the register for the past five years, was the only bidder. However, the HFEA said that the bid did not meet its specified standards.

'We could not agree to a number of HFEA's contractual requirements, including legal liabilities, that NGDT as a small charity could not afford and which we considered unfair and egregious,' the trust said.

'We knew our bid might not succeed, but HFEA's decision to abandon the DCR came as a complete surprise. We have urged the HFEA to at least keep the register in operation longer than 31 May to allow registrants time to explore alternatives.'

The HFEA said it may fund a transition period, which may include a move to self-management of the register.

Emma Cresswell, chair of the DCR Panel, confirmed the news to registrants with 'great personal disappointment'. Cresswell said that panel would hold an emergency meeting on 14 April in London, to discuss the decision with a representative of the HFEA.

As of 16 March, the NGDT said that it could not accept new registrants and would begin winding down the register.

The register is for people who donated gametes before August 1991, and donor-conceived people who were born before December 1992. In August 1991, the Human Fertilisation and Embryology Act came into force requiring a database to be kept of all IVF treatments and use of donated eggs and sperm. The DCR has been the only formal way for links to be established between donors and people conceived with donor gametes before the introduction of the act.

HFEA Announcement – Closure of Donor Conceived Register
Donor Conceived Register |  19 March 2018
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