• Who we are
• What we do
• Committees and papers
• Our public events
• Requesting information
  • About Freedom of information
  • Request information
  • Our publication scheme
  • FOI disclosure log
    • Information released under FOI in 2013
    • Information released under FOI in 2012
    • Information released under FOI in 2011
    • Information released under FOI in 2010
• How we work with others

06 August 2010

Summary of Request

The HFEA was asked for information about the number of people who have sought or undergone preimplantation genetic diagnosis (PGD) for BRCA 1 and 2.

HFEA Response

Before October 2009, conditions were licensed for PGD on a 'case-by-case' basis for each application made.  PGD for BRCA 1 was first licensed in 2007.  There have been fewer than ten applications made by centres before October 2009 to carry out PGD for BRCA 1.  We cannot release the exact figure because the low number of applications and centres involved means that there is a possibility that this information, when combined with other information that may be publicly available, could inadvertently lead to the identification of a patient to whom the HFEA owes a duty of confidentiality.  To disclose this information may therefore result in a breach of the confidentiality provisions of section 33A of the Human Fertilisation and Embryology Act 1990 (as amended).  This information is therefore exempt from the general entitlement to disclosure provided by section 1 of the FOIA under Section 44 of that Act. 

Since October 2009, the majority of conditions are now licensed for PGD on an 'in principle' basis.  This means the HFEA Licence Committee will consider whether a particular condition satisfies requirements in the Human Fertilisation and Embryology Act 1990 (as amended).  If the Licence Committee approves the condition for diagnosis using PGD, any clinic licensed to carry out PGD may then test for that condition, subject to guidance in the HFEA Code of Practice.  The list of conditions approved for testing with PGD, and more details about the PGD licensing process, can be found on the HFEA website.  PGD for BRCA 2 was approved in this manner in June 2010.

The Authority decided that conditions that had previously been licensed on a case-by-case basis, prior to the change in licensing regime in October 2009, could be offered by any centre with a PGD licence, providing the centre demonstrated competence. This applies to PGD for BRCA 1. 

Because PGD for BRCA 1 and 2 may now be carried out by any centre with a PGD licence, the HFEA does not hold information about how many people have sought to use PGD to test for BRCA 1 or 2 after October 2009.

With regard to the number of patients who have undergone PGD for BRCA 1 and 2: the HFEA records whether a patient's treatment cycle involves PGD; however we do not record the condition that PGD was used to identify. Therefore we do not know how many patients have undergone treatment involving PGD for BRCA 1 and 2.

Page last updated: 09 August 2012

• Send to a friend