GeneWatch PR: HFEA decision making process on embryo selection "a disgrace in a democratic society".

Monday 1st November 2004

GeneWatch UK response to decision to allow embryo selection on basis of detection of FAP gene

Today, GeneWatch UK has condemned the approach taken by the HFEA in allowing the selection of embryos based on a test for the presence of genetic mutations which lead to familial adenomatous polyposis (FAP). According to press reports, doctors at University College Hospital, London, are to be allowed to screen embryos created by IVF in families affected by the condition (1,2).

The Human Genetics Commission is currently conducting a public consultation about the use of genetic testing in making decisions about reproduction (3).

"The HFEA took this decision behind closed doors - absolutely no information has been made available by them. It's a disgrace in a democratic society", said Dr Sue Mayer, GeneWatch UK's Director. "Whether or not genetic selection of embryos should take place, or in which cases, is extremely difficult to decide about. The HFEA have taken it upon themselves to make these decisions without reference to anyone but themselves'.

"The decision about FAP is inevitably contentious because although the condition is very unpleasant, surgery can be highly successful in its treatment" said Dr Mayer. "Rather than having a proper debate about whether this is right or not, the HFEA are proceeding in a piecemeal way, responding to technical advances in what tests are available, not what is desirable. It is arrogant in the extreme that they have not even waited for the outcome of the HGC's consultation".

"If it is not very careful, the HFEA will be seen as the institutional face of a new eugenics", said Dr Mayer.

Further information:

Please contact Sue Mayer on 01298 871898 (office); 07930 308807 (mobile)

Notes to editors:

  1. Bowel cancer test for embryos James Sturcke, November 1, 2004
    The Guardian.
  2. FAP is a rare condition affecting about 1 in 26,000 to 44,000 people in the UK. It involves polyps developing in the colon at between 7-36 years of age. These growths usually lead to colon cancer between the ages of about 30 to 60. Affected people or those identified at risk have to be screened at regular intervals and usually require surgery to prevent progression of the disease.
  3. Human Genetics Commission consultation: Choosing the future: genetics and reproductive decision making. Closing date for submissions 15th November 2004. See:

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