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 entrepreneur, writer, campaigner and commentator. She is based in London and is the founder and Chief Executive of 2020health, an independent, social enterprise Think Tank whose aim is to Make Health Personal. Through networking, technology, research, relationships and campaigning 2020health has influenced opinion and action in fields as diverse as bioethics, alcohol, emerging technologies, fraud, education, consumer technology and vaccination. Julia studied visual science at City University and became a member of the College of Optometrists in 1991. Her career has included being a visiting lecturer at City University, a visiting clinician at the Royal Free Hospital, working with south London Primary Care Trusts and as a Director of the UK Institute of Optometry. She specialised in diabetes (University of Warwick Certificate in Diabetic Care) and founded Julia Manning Eyecare in 2004, a home and prison visiting practice for people with mental and physical disabilities using the latest digital technology, which she sold to Healthcall (now part of Specsavers) in 2009. Experiences of working in the NHS, contributing to policy development, raising two children in the inner-city and standing in the General Election in Bristol in 2005 led to Julia forming 2020health at the end of 2006. Julia is a regular guest on TV and radio shows such as BBC News, ITV’s Daybreak/ GMB, Channel 5 News, BBC 1′s The Big Questions, BBC Radio, LBC and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week. She is mum to a rugby-mad son, a daughter passionate about Shakespeare, and wife of a comprehensive school assistant head-teacher. She loves gardening, ballet, Zimbabwe, her Westies Skye and Angus, is an honorary research associate at UCL and a Fellow of the RSA.
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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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