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UK couple request Alzheimer's embryo test

4 April 2007
Appeared in BioNews 401

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 PGD at the Bridge Centre in London. The couple's doctors are reportedly applying to the Human Fertilisation and Embryology Authority (HFEA) this month for a licence to carry out the procedure.

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 had only permitted the use of PGD for fully 'penetrant' gene mutations that always result in a serious illness, usually in childhood. However, last May, the authority gave clinics the go-ahead to test embryos to avoid passing on hereditary cancer, a decision that followed a public debate on testing embryos for 'lower penetrance', later onset genetic disorders.

Alzheimer's disease is the most common cause of dementia, a slow decline in mental ability. It is caused by the gradual death of certain brain cells, especially in the areas involved in memory. Most people with Alzheimer's have not inherited it, but in a few cases (less than one in 100), the disease is caused by a gene mutation inherited from an affected parent. In this type of Alzheimer's the symptoms tend to appear earlier than usual.

Charl de Beer's mother died earlier this year, aged 64, after developing Alzheimer's disease at the age of 49. His maternal grandmother died from the condition when his mother was just five years old, and two of his uncles also died prematurely from the condition. 'My family has been dealing with Alzheimer's for fifteen years now', said Mr de Beer, adding 'I am not prepared to run the risk of passing this on to my kids, and my wife has the same view'. The de Beers were apparently considering adoption before they heard about PGD.

The news has attracted criticism from pressure group Human Genetics Alert. Director David King said that while he sympathised with the de Beers, 'we can confidently expect science to find a cure for Alzheimer's in the next 40 years. I don't believe that it is better never to have been born than to live a healthy life for 45 years and die from Alzheimer's'. He told the newspaper: 'If we don't want to slide down this slippery slope, we must restrict PGD to conditions that are fatal in early life'. But Professor Gedis Grudzinskas, who is treating the couple said: 'Society is becoming more comfortable using this powerful technology to avoid conditions that cause distress by creating what silly people call "designer babies"'.

Designer baby to beat risk of Alzheimer's
The Sunday Times |  1 April 2007
3 November 2008 - by Ailsa Stevens 
A study examining the genomes of more than 1,300 families has revealed four new genes potentially linked to the most common late-onset form of Alzheimer's disease, according to a study published in the American Journal of Human Genetics last week. The researchers, based at the Massachusetts General...
17 April 2007 - by Dr Alan Thornhill 
We are currently planning to help the first British couple have a baby free from the risk of developing early-onset Alzheimer's disease (EOAD). Preimplantation genetic diagnosis (PGD) for this disease, which affects individuals in middle age (40s and 50s) - rather than the more common Alzheimer's whose effects are suffered considerably...
11 May 2006 - by Dr Jess Buxton 
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...
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...
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