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HFEA approves embryo tests for hereditary cancer

11 May 2006
Appeared in BioNews 358

The UK's fertility treatment regulator has given the go-ahead for couples to test embryos to avoid passing on hereditary cancer. At its open meeting held on 10 May in Belfast, the Human Fertilisation and Embryology Authority (HFEA) accepted a recommendation from its ethics and law committee to allow licences to be granted for such procedures. People who know they have inherited genetic mutations that would confer a high risk of breast, ovarian or bowel cancer on their children will now be permitted to undergo PGD treatment, to enable them to select IVF embryos that do not have the faulty gene.

Last November, the HFEA launched a public debate on testing embryos for 'lower penetrance', late onset genetic disorders. The discussion paper, entitled 'Choices and Boundaries', focused both on genetic tests currently available, such as that for hereditary breast cancer, and possible future developments, such as tests for inherited forms of Alzheimer's disease. The recommendations approved recently refer to just three genes: BRCA1 and BRCA2, which are both linked to hereditary breast and ovarian cancer, and HNPCC gene mutations, which confer a very high risk of colon cancer.

PGD involves taking a single cell from a 2-4 day old embryo, performing a genetic or chromosome test on that cell, and then returning one or two unaffected embryos to the womb. In the UK, the use of PGD is regulated by the HFEA, which licenses the procedure on a case-by-case basis. Previously, it has only permitted the use of PGD for fully 'penetrant' gene mutations that always result in a serious illness, usually in childhood. In contrast, women with mutations in the genes BRCA1 or BRCA2 face up to an 85 per cent chance of developing cancer in their lifetime, often in their thirties or forties. With HNPCC, 90 per cent of men and 70 per cent of women who have a gene mutation will get some form of cancer by the age of 70.

The decision to extend the use of PGD in this way has attracted criticism from some quarters. Josephine Quintavalle, of pro-life pressure group Comment on Reproductive Ethics (Core) said that 'PGD is currently nothing more than a weapon of destruction, aimed at the ruthless elimination of any embryo which does not conform to eugenic concepts of perfection'. However, scientists and clinicians have welcomed the policy change. Dr Simon Fishel, managing director of the UK's Care Fertility Group, said that 'we are talking about serious disorders here, and where there is major cost too to the NHS for treatment and radical approaches', adding 'until there is an easier option for cure, we have got an option here for prevention'.

Baroness Ruth Deech, former head of the HFEA, also agreed with the decision. 'Nothing is going to be forced on anybody, but for a tiny handful who feel that they would find this burden insupportable I feel that they should be allowed to do what their instincts tell them would be best for their children', she told BBC News Online.
In a press release, Dame Suzi Leather, current Chair of the HFEA, said that PGD can still only be used for 'a minority of people if there is a clear history of cancer across generations of a family'. She also stressed that the broad approach decided by the Authority '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'.

Embryo screening extension gets approval
The Daily Telegraph |  11 May 2006
HFEA - authority decision on PGD policy
HFEA Press Release |  10 May 2006
Watchdog approves embryo selection to help prevent cancer
The Guardian |  11 May 2006
Watchdog backs more embryo checks
BBC News Online |  10 May 2006
4 April 2007 - by Dr Jess Buxton 
According to the Sunday Times newspaper, a UK clinic is requesting permission to test embryos in order to select those free from early onset Alzheimer's disease. Charl and Danielle de Beer are planning undergo IVF treatment in conjunction with preimplantation genetic diagnosis (PGD) at the Bridge...
13 March 2007 - by Dr Colin Gavaghan 
It isn't uncommon, at international conferences, to hear praise for the UK's approach to regulating reproductive and genetic technologies. The cautious, incremental approach of the Human Fertilisation and Embryology Authority (HFEA) is often contrasted - favourably - with, for example, the rather dramatic oscillation between regulatory extremes seen in Italy, which had...
18 May 2006 - by Dr Kirsty Horsey 
A doctor in the UK has had a baby boy free from an inherited disease following treatment in Belgium. Dr Mandy Baum and her husband Philip travelled to Belgium for the treatment because it could not be performed in the UK. Dr Baum and her husband...
15 May 2006 - by Dr Kirsty Horsey 
The UK's Times newspaper has revealed that a British woman is pregnant with the UK's first baby conceived to be free from an inherited childhood cancer. Last August, doctors at University College Hospital (UCH), London, were granted a licence by the Human Fertilisation and Embryology Authority...
10 November 2005 - by BioNews 
The UK's Human Fertilisation and Embryology Authority (HFEA) has launched a public debate on testing embryos for 'lower penetrance', late onset genetic disorders. A discussion paper, entitled 'Choices and Boundaries', focuses both on genetic tests currently available, such as that for hereditary breast cancer, and possible future developments, such as...
11 August 2005 - by BioNews 
The UK's Human Fertilisation and Embryology Authority (HFEA) is to issue a public consultation on the use of preimplantation genetic diagnosis (PGD) for late-onset and 'lower penetrance' genetic disorders. The use of this technology to avoid later onset genetic conditions sparked debate recently, following the authority's decision to grant a...
4 May 2005 - by Mohammed Taranissi 
Like so many areas of new reproductive and genetic technology, PGD for susceptibility and late onset disorders needs careful attention. It raises some unique questions, and the recent decision of the Human Fertilisation and Embryology Authority (HFEA) to license PGD for bowel cancer has attracted much criticism from those who...
7 March 2005 - by BioNews 
US researchers have identified a gene mutation linked to an increased risk of Alzheimer's disease. The team, based at the Massachusetts General Hospital, say that it is only the second gene ever to be linked to the late-onset form of the disorder. The results, published in the New England Journal...
1 November 2004 - by BioNews 
The UK's Human Fertilisation and Embryology Authority (HFEA) has issued a licence allowing doctors to test embryos for a gene mutation that confers a high risk of bowel cancer. Four couples at risk of passing on familial adenomatous polyposis coli (FAP) to their children are now set to undergo the...
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