HFEA licenses PGD for inherited colon cancer
01 November 2004
The Human Fertilisation and Embryology Authority can confirm that it has issued a preimplantation genetic diagnosis (PGD) licence for Familial Adenomatous Polyposis Coli (FAP) to the Assisted Conception Unit at University College Hospital, London.
FAP is an inherited genetic severe colon condition with onset in many cases occurring in children in their early teens. It leads to multiple rectal and colon cancers in early adulthood for almost all of those affected by the condition. Those affected are likely to have prophylactic surgery in their early teens to remove their colon.
Any clinic wishing to carry out PGD must first obtain a licence from the HFEA. The HFEA issues licences for PGD where the embryo is at significant risk of developing a serious condition. All PGD applications are sent out to a minimum of two peer reviewers and decisions are taken by HFEA licence committees who consider all the scientific, legal, ethical and medical information.
FAP is a serious condition – prenatal diagnosis and selective termination of affected cases has been offered in the past. Families with the genetic condition have a 50 per cent chance of passing it on to their children, but using PGD can help these families have a healthy child.
The HFEA undertook with the Human Genetic Commission, a public consultation on attitudes to PGD and issued a report in November 2001. The recommendations of this report informed the development of HFEA's policy and guidance on PGD and clinical decision making. This report is available on the website.
Notes to editors
Any clinic that wishes to use PGD for this condition must apply to the HFEA separately.
Some factors to consider when deciding the appropriateness of PGD:
- The view of the people seeking treatment of the condition to be avoided
- The likely degree of suffering associated with the condition
- The availability of effective therapy, now and in the future
- The speed of degeneration in progressive disorders
- The extent of social support available, and
- The family circumstances of the people seeking treatment
Examples of other conditions licensed for PGD include: Beta Thalassaemia, Cystic Fibrosis, Duchenne Muscular Dystrophy, Huntington's disease and Haemophilia.
The HFEA was set up in August 1991 as part of the Human Fertilisation and Embryology Act 1990. The HFEA's principal tasks are to license and monitor clinics that carry out in vitro fertilisation (IVF), donor insemination (DI) and human embryo research. The HFEA also regulates the storage of gametes (eggs and sperm) and embryos.
Page last updated: 12 March 2009