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Embryo test licence for early-onset Alzheimer's granted

24 September 2007
Appeared in BioNews 426

The UK's Human Fertilisation and Embryology Authority (HFEA) has given permission to a fertility clinic to test a couple's embryos for early-onset Alzheimer's disease, a genetic condition that can manifest from the age of 35.

The Bridge Centre has been granted the licence to screen embryos for Charl and Danielle De Beer. Charl De Beer's mother developed Alzheimer's at the age of 49 and died at 64. His grandmother and two of his uncles also died of the condition, which has been passed down his mother's side of the family. While Mr De Beer does not know whether he carries the condition himself, and there is a 50 per cent chance of him doing so, he wishes to spare his children the experience of living under the threat of the illness. Mr De Beer said that his family 'has been dealing with Alzheimer's for 15 years', adding 'I am not prepared to run the risk of passing this on, and my wife has the same view'. The clinic will screen embryos to ensure that only the chromosome from Mr De Beer's father's side of the family is passed on.

Early-onset Alzheimer's is a very rare genetic condition, but the move to allow the testing of embryos to exclude those that carry the gene has provoked controversy. For one, opponents argue that genetic testing should be reserved for conditions that are fatal in early life, and argue that early-onset Alzheimer's usually does not affect carriers until the age of 45. Dr David King, director of Human Genetics Alert, said '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'.

Other opponents argue that such genetic testing leads to the destruction of healthy embryos. During the PGD process, there is a chance that one in four unaffected embryos will be discarded. Dr Alan Thornhill, scientific director at The Bridge Centre, argues that this happens in nature, and in ordinary IVF anyway. Further objections have been heard from opponents who believe that if couples are allowed to test for conditions such as early-onset Alzheimer's, a slippery slope will soon permit them to select embryos on the basis of intelligence, hair colour or sporting ability. However, Dr Thornhill argued that the process the De Beers were undergoing was emotionally and physically difficult, and thought that it was something that anyone would be highly unlikely to undergo except in cases of preventing serious and life threatening diseases.

The HFEA has classified early-onset Alzheimer's as a serious genetic condition, affecting carriers from the age of 35. In determining whether it was appropriate for the screening technique to be applied to the condition, the HFEA took expert scientific advice, looking at eight factors including the degree of suffering and speed of degeneration associated with the condition.

Couple to screen embryos for Alzheimer's
The Herald Sun |  20 September 2007
IVF couple screened to avoid Alzheimer's risk
The Daily Telegraph |  20 September 2007
Parents allowed to screen IVF embryo for Alzheimer's
The Daily Mail |  20 September 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...
27 October 2008 - by Dr Rebecca Robey 
UK scientists have developed a new screening technique that could allow prospective parents to test their IVF embryos for any known genetic disease. The test, dubbed 'a genetic MoT', would cost just £1500 and could be available by next year pending licensing by the Human Fertilisation and...
7 July 2008 - by Ailsa Stevens 
BioNews reporting from ESHRE conference, Barcelona:By Ailsa Taylor: Amidst current debate about the implications of allowing couples to select embryos free from conditions with later onset, incomplete penetrance and (limited) treatment options, ethicists have recommended that parents undergoing pre-implantation genetic diagnosis (PGD) should, in certain circumstances, be allowed to...
10 July 2007 - by Dr Jess Buxton 
When the technology for testing IVF embryos for genetic mutations that cause disease was first developed over 15 years ago, its potential uses seemed pretty clear cut. Preimplantation genetic diagnosis (PGD) provided a way in which couples at high risk of having a child affected by a genetic disorder could...
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...
Comment ( - 04/02/2017)
Ow yes im for mum had Juvenille Alzheimer form 26 till 45 so yes i will select my enbryos....they have a 50% change to get it so.....God make this possible so yes i'll use it
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