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10 November 2005

Fertility regulator asks public for their views on future limits for cutting-edge embryo-testing techniques

A public debate on how far doctors and scientists should be allowed to go with embryo-testing techniques is being launched today by the UK fertility regulator, the Human Fertilisation and Embryology Authority (HFEA). The debate will both focus on current technologies – such as the ability to screen for breast cancer genes – and possible future developments, such as the potential to screen for inherited forms of Alzheimer's disease.

The HFEA is launching the debate with a discussion paper Choices & boundaries – which looks at key questions raised by the embryo testing technique known as preimplantation genetic diagnosis (PGD).  People are being asked give their views on where they feel the boundaries should lie on which conditions PGD can be used to test for.

The paper will be followed by a public discussion meeting in London during December. The outcomes of both the paper and the discussion will be considered by Authority members, who licence the specific PGD screening tests that individual clinics can use.

PGD is a rapidly developing area of science and the number of conditions for which it could be used to test embryos for are increasing all the time. So far, PGD has been licensed for use to enable parents who carry genes for serious conditions, such as Cystic Fibrosis and Huntington's disease, to avoid passing the faulty gene on to their children. All these conditions are ´high penetrance' – meaning that people who have the gene are extremely likely to develop the condition.

However, developments in this area have been such that it is now possible to test embryos for some cancers that are caused by a ´lower penetrance' gene – meaning not everyone who inherits the faulty gene will go on to develop the disease. These can include:

• Inherited breast cancer
• Inherited ovarian cancer
• Hereditary Non Polyposis Colon Cancer

The Choices and boundaries paper will ask people to look at the ethical implications of using PGD to test embryos for particular diseases and will ask questions that focus on testing for lower penetrance cancers, focusing on how the nature of these conditions affects people's views on whether it is right to test embryos to avoid passing the condition on. For example, key questions from the paper highlight the following issues:

• If a gene doesn't guarantee the person will get the disease, the disease doesn't happen until later in life and it is treatable is the condition sufficiently serious to be tested for?
• How likely does a disease have to be for embryo testing to be acceptable?
• What type of condition should never be tested for in embryos, taking into account the chance of disease, age of onset and treatment available?
• How much weight should be given to the views of patients seeking PGD embryo testing treatment?

The paper will also ask people to look ahead to future uses of PGD and give their views on the implications of developing the technique. Examples of the type of conditions PGD could be used to test embryos for at some point in the future include:

• Certain types of inherited Alzheimer's disease,
• types of inherited prostate cancer
• Inherited brain cancers

Suzi Leather, Chair of the HFEA, said:
"We would like people to understand the possible uses of embryo testing techniques ? both now and in the future – and to hear their views on testing for serious diseases that people have a lower chance of getting or that occur later on in life.

"Looking ahead we may be asked to consider applications for these kinds of diseases in the near future and will therefore need to make choices about the types of conditions PGD can be used for.

"We would like to hear the views of anyone who might be affected by these choices: from patients, carers and affected families to doctors and staff in treatment centres to parliamentarians, academics and the wider public. This way we can begin to balance the views and interests of all groups and move towards building a consensus on this issue."

View the policy review Choices & boundaries: Should people be able to select embryos free from an inherited susceptibility to cancer? The response period ends on January 16 2005.

The public discussion meeting will take place in London on December 12 2005. To book your place, or to request a hard copy of the paper, please email us at pgd@hfea.gov.uk or call 020 7291 8200. 

Ends

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Notes to editors

The HFEA is the independent regulator for IVF treatment and embryo research. Our role is to protect patients and the public interest, to drive improvement in the treatment and research sectors and to provide information to the public and policymakers about treatment and research.

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: 11 March 2009

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