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10 May 2006

Statement on use of Preimplantation Genetic Diagnosis (PGD) for inherited cancer susceptibility

Dame Suzi Leather, Chair of the Human Fertilisation and Embryology Authority (HFEA), said:

"The role of medicine has always been to try to relieve pain and suffering and to try to improve the quality of life for people. As technology has developed, preimplantation genetic diagnosis (PGD) has provided a new and early way to identify potential problems of inherited cancer and similar conditions.

"We have looked very carefully at the issues around the use of PGD embryo testing for families who carry susceptibility genes for cancers such as breast cancer and similar conditions. This included a detailed process of gathering public views, discussions with genetic interest groups, cancer charities, geneticists and leading clinicians alongside work by the HFEA's policy team.

"The decision today deals only with serious genetic conditions that we have a single gene test for. We would not consider mild conditions – like asthma and eczema – which can be well-managed in medical practice. We would not consider conditions like schizophrenia where a number of genes have been identified but there is no single gene that dictates the condition.

"At our open meeting today, the Authority agreed that we should consider the use of PGD embryo testing for conditions such as inherited breast, ovarian and bowel cancers that given the aggressive nature of the cancers, the impact of treatment and the extreme anxiety that carriers of the gene can experience. These conditions differ from those already licensed before because people at risk do not always develop cancer, it may occur later in life and some treatments may be available.

"The inherited conditions suitable for PGD testing are very uncommon. This is not about opening the door to wholesale genetic testing. This is about considering a particular group of genetic conditions to be sufficiently serious to merit the use of PGD embryo testing.

"These genetic tests can still only be used for a minority of people if there is a clear history of cancer across generations of a family.

"We know that these conditions can have very different impacts on individual families. The Authority agreed that in each and every case we need to look at all the factors around a particular condition, age of onset, treatability, the average penetrance, and, importantly, the medical history of the individual family concerned before coming to a decision. The views and experience of each family are a particularly important element of this.

"Not every family who carries a condition would want to have PGD and the availability of this option should not dictate a woman's treatment. This is a long and involved process which involves many steps and significant medical involvement. But we feel it would be appropriate that this choice should be available for these families.

"The broad approach decided by the Authority today will not limit the discretion of an HFEA Licence Committee to consider the individual circumstances of each case - assessing applications on a case-by-case basis will remain at the heart of HFEA decision-making."

For further details, please contact the HFEA press office

Page last updated: 13 April 2009

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