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13 September 2011

Summary of request

The Authority was asked for information about the number of applications to use preimplantation genetic diagnosis (PGD) to test for a genetic condition that have been recently refused by the HFEA and the reasons for these refusals.

HFEA response

Since October 2009, the HFEA’s Licence Committee has declined to authorise PGD for two genetic conditions: Non-Classical Congenital Adrenal Hyperplasia (CAH) and Hereditary Motor and Sensory Neuropathy 1A (Charcot Marie Tooth type 1A). The minutes of the Licence Committee decisions are published on the HFEA website and give details of the reasoning ( http://guide.hfea.gov.uk/guide/ShowPDF.aspx?ID=4223 and http://guide.hfea.gov.uk/guide/ShowPDF.aspx?ID=4499 ).

As background information, the Human Fertilisation and Embryology 1990 was recently amended by the HFEA Act 2008. The legal framework for embryo testing is now set out in Schedule 2 paragraph 1ZA of the consolidated Act (http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsLegislation/DH_080205 ). The HFEA Licence Committee’s decision tree and explanatory note for PGD applications, both of which are available on our website at: http://www.hfea.gov.uk/1128.html , may also be of interest.

Page last updated: 16 August 2012

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