Should embryo screening help parents prevent passing on a wider range of inheritable diseases?

Fertility regulator looks to stakeholders for views on using embryo screening technology for later onset and lower penetrance disorders

The Human Fertilisation and Embryology Authority (HFEA) has announced today that it is to seek the public's views on the appropriateness of using fertility treatment technology to screen out serious genetic disorders such as inherited breast cancer.

Embryo screening using preimplantation genetic diagnosis (PGD) is already used to enable parents with a family history of serious conditions, such as Cystic Fibrosis and Huntington's disease, to avoid passing the faulty gene which leads to their condition on to their children. This discussion will focus on those disorders where the conditions are not ´fully penetrant' (i.e. where not all people with the gene will get the disease)

Such diseases include:

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

The HFEA's policy team has been carrying out a scientific review on these issues since the start of this year. The Authority's members decided at their meeting in July that it was appropriate to hold a wider public discussion on these issues later in the year, including a public event.

Angela McNab, Chief Executive of the HFEA said:

"Embryo screening technology can be used to enable families to avoid the birth of a child with a faulty gene that will always lead to the child developing a particular genetic condition, such as Cystic Fibrosis and Huntingdon's disease.

"In particular we want to hear the views of patients, carers and representatives of affected families, staff in treatment centres, disability groups, parliamentarians, academics and the wider public. In this way we can start to build a consensus on this issue and balance the interests of the many groups involved.

"The question that we want to ask people is, should this technology also be used on diseases that people have a lower chance of getting and may occur later on in life?

"Our policy team have identified that we are likely to have to consider applications for using treatment in this way for inherited breast cancer and other conditions in the near future.

"It is important that we are open about the issues that we may face in the future and give people the chance to think about them."

Angela added:

"For example, we know that some women with a strong family history of inherited breast cancer choose to have a double mastectomy before they have even developed symptoms to reduce their risk of developing cancer later in life.

"These inherited disorders present many difficult choices. No parent would wish their daughter to have such major and traumatic surgery. But not every woman who carries the faulty breast cancer gene will develop the disease.

"What we are asking people is whether it is appropriate to use embryo screening technology to stop children being born with faulty genes when there is a chance they may never go on to suffer the cancer."

The public discussion on these issues will be held in the late autumn. Further details on the public event and the other ways for people to participate will be released nearer the time.

Ends


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.

For further media information please contact the HFEA press office.

Contact the press office

HFEA Press Office
Tel: 020 7291 8226

Email: press.office@hfea.gov.uk

Out of hours urgent press contact: 07771 981 920 (for media enquiries only.)

Page last updated: 11 March 2009

Genetic testing

Photo of an embryo

Learn about pre-implantation genetic diagnosis (PGD).

Discover how this technique could help to avoid passing on inherited conditions to any potential child.

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