UK Donor Link threatened with closure

August 23, 2011

We are dismayed and alarmed by news that funding may be withdrawn from UK Donor Link, an organisation which provides vital support to donor conceived people conceived in the UK before 1991.  Natalie Gamble has written to the Minister of Health Anne Milton to urge her to reconsider the decision, and Natalie’s letter is reproduced below:

Dear Minister

I am writing as a specialist fertility lawyer, responsible for representing many families created through donor conception.  I understand that the public funding provided to UK Donor Link since 2003 may be withdrawn from October, and that as a result UK Donor Link has already had to close its doors to new registrants and is threatened with closure from October.

I urge you to ensure that funding for UK Donor Link continues.  UK Donor Link provides a critical role in the provision of information to donor conceived people, and is the only organisation to offer support to adults conceived with donated eggs or sperm before the Human Fertilisation and Embryology Authority’s Register of Information was established in August 1991.

Ensuring that donor conceived people have access to information about their genetic heritage  has been a clear foundation of government policy in relation to donor conception consistently over the past decade.  The policy reflects the growing and universally accepted understanding of the importance of openness and availability of information to donor conceived people, and followed a decision of the High Court as to UK law’s compliance with human rights legislation.

In 2002, the English High Court heard a landmark case (R. (on the application of Rose) v Secretary of State for Health) which established that if donor conceived people were denied rights to access information about their genetic heritage this engaged their human rights under article 8.  Mr Justice Scott Baker held that:

“Article 8 is engaged both with regard to identifying and non-identifying information, albeit in this case the identity of the donors is not directly sought. What is wanted is non-identifying information and a voluntary contact register. I do emphasise, lest there be any doubt about it, that the fact that Article 8 is engaged is far from saying that there is a breach of it. That question, which may fall to be decided on a further occasion, involves consideration of other matters and may depend on any future action taken by the Secretary of State.”

In response to this case, two things happened:

1. Parliament changed the law in respect of information about donor conception for people conceived in the UK since 1991 whose information was kept on the HFEA’s Register of Information.  Under the Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004/1511 (which came into force on 1 April 2005) newly registered egg and sperm donors had to agree to being identifiable to their offspring once they reached the age of 18; and donors who were already registered (who, other than in limited circumstances, could not continue to donate on an anonymous basis) were given the opportunity to re-register as identifiable.

2. UK Donor Link was established in 2003, with the support of public funding, in order to enable donor conceived people conceived in the UK before 1991 (whose details were not kept on the HFEA’s Register of Information) to make contact with genetic relatives through DNA testing and other methods of matching.

As a result of these actions, the question of whether the existing law breached article 8 of the Human Rights Act 1998 (justifying a declaration of incompatibility) did not need to be determined by the court.

The action taken by the government was in response to the High Court’s judgment, and represented a clear acknowledgement of the importance of providing access to information for donor conceived people.  The policy encompassed people conceived both before and after 1991 (although acknowledging the different means available for accessing information in each case).  This is inevitable given that, since human rights issues were engaged, they affected people irrespective of the whether they were conceived before or after 1 August 1991.

In 2008, additional steps were taken through the Human Fertilisation and Embryology Act 2008 (following rigorous Parliamentary debate) which further extended the rights of donor conceived people to information about their genetic heritage.  Section 31 of the Human Fertilisation and Embryology Act 2008 allows all donor conceived people whose details are kept on the HFEA Register of Information to have the opportunity to contact genetic siblings in adulthood, thereby extending access to information on the register.  Section 31ZF of the HFEA 2008 also made explicit provision allowing the HFEA to run or to fund a ‘voluntary contact register’ (in practice UK Donor Link) to support people conceived before 1 August 1991.  This therefore represents a recent Parliamentary endorsement of support for UK Donor Link, at the level of primary legislation.

I know that others have written to you emphasising the importance of UK Donor Link and the excellent work that it does for donor conceived people conceived in the UK before 1 August 1991.  In addition, I urge you to consider the legal context of support for donor conceived people in the UK, and the potential human rights implications of any withdrawal of funding.

Yours sincerely, Natalie Gamble

If you would like to add your support and write to the Minister of Health, her details are Anne Milton, Public Health Minister, Department of Health, Richmond House, 79 Whitehall, London SW1A 2NS.

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