IVF couple screened to avoid Alzheimer’s risk

By Rebecca Smith, Medical Editor

A couple who fear their child could inherit a rare form of Alzheimer’s are to undergo embryo screening to eliminate the risk.

The Human Fertilisation and Embryology Authority has granted a licence to a fertility clinic to carry out IVF treatment with the sole aim of ensuring that the dementia, which can take hold from the age of 35, is not passed on.

Early-onset Alzheimer’s can be passed down the generations and now joins the growing list of inheritable conditions for which doctors are allowed to test embryos.

The technique has sparked controversy because there is a one in four chance of discarding unaffected embryos. Opponents fear screening will lead to “designer babies” where parents choose hair colour, athletic ability and intelligence.

The Bridge Centre has been granted a licence by the authority to screen embryos for Charl and Danielle de Beer, from London. Specialists will only implant embryos that are not carrying the gene defect that leads to early onset of Alzheimer’s.

Mr de Beer’s mother, Patricia, developed Alzheimer’s at 49 and died aged 64. His grandmother and two uncles have also died prematurely from the condition.

There is a 50 per cent chance that he is carrying the condition and a 50 per cent chance of passing it on. He does not want to know if he is carrying the disease but he and his wife want to ensure their child is spared the suffering.

At the time the clinic applied for a licence Mr de Beer, 34, said: “My family has been dealing with Alzheimer’s for 15 years. I am not prepared to run the risk of passing this on and my wife has the same view.”

Mr de Beer’s father’s side of the family is unaffected and specialists will screen embryos to ensure only the chromosome from that side is passed on. This is known as exclusion testing. But it does mean that healthy embryos could be discarded.

Dr Alan Thornhill, the scientific director at Bridge, said this happened in nature and in ordinary IVF anyway. He said the process was so difficult emotionally and physically that it was highly unlikely anyone would want to do it for anything other than serious and life-threatening diseases.

He said that because early Alzheimer’s struck in the late 30s and early 40s, it can mean the sufferer “has only half a live worth living”.

There are 500,000 people with Alzheimer’s in the UK. About five per cent, or 750, of early onset cases are caused by defective genes.

Neil Hunt, the chief executive of the Alzheimer’s Society, said: “Dementia is a devastating condition that robs people of their lives. While the Alzheimer’s Society is not in the position to comment on the ethics, it is important to note that this situation is extremely rare. Further research and, ultimately, a cure is the only way to stop millions more families being torn apart.”

A spokesman for the embryology authority said: “Early onset Alzheimer’s is a serious genetic condition where dementia occurs in patients from the age of 35.

“There is a high risk of the condition being passed on to any children that the carriers may have.

“The screening process was a way of preventing its passage and the authority’s licence committees went through a very careful

process, involving taking expert scientific advice to determine whether the technique was appropriate.

“This looks at eight factors, including degree of suffering and speed of degeneration associated with the condition,” she said.

 

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