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“2020health is an important and thoughtful contributor to the health debate”

Dr Sarah Wollaston MP, Chairman, Health Select Committee


2020health press release Ludicrous for NHS to adopt ‘brave new world’

Ludicrous advice on genetic tests

The recommendation from the Human Genetics Commission (HGC) that Teenagers should have genetic tests before becoming sexually active is “ludicrous” according to 2020health chief exec Julia Manning.

“Not for the first time the HGC are making recommendations that could be called at best inadequate and at worst ludicrous.

“This advice falls down on every measure: accuracy, validity, cost and ethics.  

“Firstly genetic tests often don’t give an absolute answer – they give a probability which can be misinterpreted, especially if the test is taken in isolation from other tests.

“Then there is the issue of validity – even apparently simple one-gene diseases can have many mutations, some of which cause varying degrees of severity or no symptoms at all. Most conditions have multiple genes and we don’t even know what they all are.

“Thirdly, the cost. The tests cost several hundred pounds but a round of pre-implantation genetic diagnosis (PGD) and IVF costs about £5,000. Across the EU, according to latest figures, PGD was used in only about 1% of cases of IVF. We can’ afford it and we don’t have the capacity to deliver it.

“And finally the ethics. We are implying to teenagers that they can eliminate disease and design their babies. This is false. We can’t eliminate more than two genes at the very most in a round of PGD (usually it’s just one), it won’t prevent spontaneous genetic mutations and we have not thought through as a society the consequences of encouraging genetic selection.”

2020health recommends that the government rejects this HGC recommendation.