Ludicrous advice on genetic tests from the government advisory body

The recommendation from the Human Genetics Commission (HGC) that teenagers should have genetic tests before becoming sexually active is ludicrous (reported in Telegraph).

Not for the first time the HGC are making recommendations that could be called at best inadequate. Last time it was when they flinched from protecting the public from over-the-counter genetic tests, saying the manufacturers should adhere to good “principles” instead of ensuring the public weren’t fleeced and led astray by buying misleading kits.

This latest 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 they haven’t done a cost-benefit analysis of screening healthy teenagers either.

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), and we have not thought through as a society the consequences of encouraging genetic selection. Disabled people already suffer significant discrimination – what will we be saying as a society if the pursuit of a ‘perfect’ offspring becomes the expectation?

2020health recommends that the government rejects the HGC recommendations and that it would be much more beneficial to spend more time educating children on healthy eating!


About Julia Manning

Julia Manning is a social pioneer, writer, campaigner and commentator. Formerly a clinical optometrist specialising in diabetes and visual impairment, she is the founder and Director of 2020health, an independent, social enterprise Think Tank whose aim is to Make Health Personal and Social. 2020health has through research, events and campaigning influenced opinion and action in fields as diverse as bioethics, alcohol, emerging technologies, fraud, education, consumer technology and vaccination. In 2014, 2020health were founding partners of the Health Tech and You Awards with Axa PPP and the Design Museum. Since 2016, 2020health has increasingly focused on digital health and public health in the community. Julia is a Fellow of the RSA and now also a part-time PhD student at the UCL Interaction Centre, studying the use of digital technology for stress management in the workplace. Julia has shared 2020health's research widely in the media (BBC News, ITV, Channel 5 News, BBC 1′s The Big Questions & Victoria Derbyshire, BBC Radio 4 Today, PM and Woman's Hour, LBC) and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week.
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One Response to Ludicrous advice on genetic tests from the government advisory body

  1. Pingback: Safe Asian Traveling Tips and News - The Daley Dozen: Wednesday

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