• Directions
• Chair's letters
  • 2013
  • 2012
  • 2011
  • 2007-2010
  • 2003-2006
  • 1999-2002
  • 1995-1998
  • 1991-1994
• Chief Executive's letters
• Multiple Births Minimisation Strategy: achievements and compliance
• Frequently used guidance
• Inspecting surgical procedures
• Retrieval of storage of gametes where patients are unable to consent
• Surrogacy and legal parenthood – changes from 1 October 2013

19 March 2009

Dear Colleague,

Re: Disclosure of Donor Codes

In October 2004, the HFEA issued Chair’s letter CH(04)07. That letter informed centres that information about donors, including the codes assigned to donors by licensed clinics (“donor codes”), could be disclosed to parents of donor conceived children, provided that such information could not lead to the identification of the donor.

Since that time, the Authority has also provided information about donor codes to parents who request this information.

As you may know, the Human Fertilisation and Embryology Act 2008 sets out new provisions about disclosure of information from the Register maintained by the HFEA. These provisions will come into force in October 2009. As part of its preparation to implement the 2008 Act, the HFEA has been reviewing its policies on opening the Register and providing access to the information which it holds.

That work has revealed a potential risk that the donor code numbering system used by some clinics may lead to erroneous matches, because there is some duplication in coding systems between clinics. Concerns in relation to confidentiality and privacy issues have also been identified.

At its meeting on 21st January 2009, the Authority decided that, for the time being, it would no longer disclose information about donor codes, and would advise centres that they should also cease to do so. The minutes of this meeting are available on the Authority’s website.

Whilst the Authority is aware of the potential benefits in providing information to parents of donor conceived children, the Authority is concerned that the provision of donor codes has the potential to mislead, and in these circumstances therefore, advises that this information should no longer be provided.

This Chair’s letter therefore revokes the guidance issued in CH (04) 07 of 28 October 2004.

The Authority will, as part of its review of information access policies, continue to keep the situation under review.

Yours sincerely

Professor Lisa Jardine CBE
Chair
Human Fertilisation and Embryology Authority

 

---

 

• FAQ's regarding disclosure of donor codes are available here
• Read the HFEA's statement regarding donor codes

 

Page last updated: 17 August 2012

• Send to a friend