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01 November 2011

Summary of request

The Authority was asked for information about its approval of Preimplantation Genetic Diagnosis (PGD) for Sickle Cell Anaemia and breast cancer.

HFEA response

A search of our records shows the attached documents as being presented to the HFEA Licence Committee as the first applications to use PGD for sickle cell anaemia and breast cancer, in this case the BRCA1 gene. They also include the relevant Committee Minutes. Both applications were made by the same clinic, The Assisted Conception Unit, University College Hospital, which belongs to the University College Hospital NHS Foundation Trust. The dates the applications were considered are included in the Committee papers.

Certain information contained in these documents has been redacted  (blocked out).  This is because the information constitutes ‘personal data’ and, in some cases, ‘sensitive personal data’ within the meaning given in sections 1(1) and 2 of the Data Protection Act 1998 (‘DPA’).  It is therefore exempt from disclosure under sections 40(2) and 40(3)(a)(i) of the FOIA.  It is the Authority’s opinion that disclosure of such information would be in breach of the first data protection principle (fair and lawful processing) as set out in Schedule 1 to the DPA since none of the conditions set out in Schedule 2 to the DPA is met.

Both applications were made some years ago and the process for applying for approval of PGD for new conditions has changed significantly, including the type of information required. For example, the BRCA1 application attached contains a significant amount of redacted sensitive personal information because applications at that time were patient specific. Patient specific applications are no longer required. Also, the Sickle Cell application papers contained a considerable amount of information that is no longer required (laboratory protocols, publications, licensing history and staff CVs), which were not relevant to the purpose of the enquiry, and were therefore extracted from the attached papers.

• Release package 1 (748kb)
• Release package 2 (743kb)

Page last updated: 16 August 2012

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