F-2010-00174 - PGD for Deafness

09 September 2010

Summary of request

The Authority was asked for information about applications from all clinics that have applied to use preimplantation genetic diagnosis (‘PGD’) for deafness (i.e. to identify embryos that have genetic variations that result primarily in deafness). 

HFEA Response

Our records show that only one application has been received to carry out PGD for a condition primarily causing deafness.  This condition is autosomal recessive non-syndromic sensorineural deafness.   The application was approved by an HFEA Licence Committee in 2001.  This means that the centre was then licensed to carry out PGD for that condition for any couple who were at risk of passing on the condition and who requested it.

The attached document contains the application documentation, the minutes of the licence committee meeting at which the application was approved and related correspondence.  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 (including the condition at paragraph 6, that the disclosure is necessary for the purposes of legitimate interests pursued by those to whom the data are disclosed).

A regularly updated list of conditions for which PGD is licensed can be found is on the HFEA’s website at:   http://www.hfea.gov.uk/cps/hfea/gen/pgd-screening.htm

Page last updated: 09 August 2012