For immediate release: Tuesday 16th July 2002
Today’s announcement by the Human Genetics Commission of a consultation into how to regulate ‘over-the-counter’ human genetic tests was welcomed by GeneWatch UK (1). GeneWatch believes that such tests should only be administered by doctors and health professionals and that a statutory regulator is needed to assess the claims made for the tests.
"There is an urgent need to regulate genetic tests to prevent misleading claims and dubious advice on health from spiralling out of control," said Dr Helen Wallace, Deputy Director of GeneWatch UK. "Medical advice and an independent regulator are critical. Busy doctors and their patients need to know that someone is properly assessing the scientific evidence behind these claims."
One UK company, Sciona, has already tried selling genetic tests directly to the public, claiming to give dietary advice tailored to people’s genetic make-up. The tests have now been withdrawn from sale after leading scientists described them as meaningless and unethical (2). Other companies, mainly based in the US, such as GeneLink Inc, offer tests over the Internet which claim to identify people’s susceptibility to obesity and osteoporosis (3).
"For most people, tailoring your diet to your genetic make-up is about as scientific as tailoring your diet to your star sign," said Dr Wallace. "People need to know that many genetic predictions of their future health are spurious – the science is still very poorly understood. Genes are poor predictors of common illnesses such as heart disease, osteoporosis and cancer – lifestyle, environmental and social factors are much more important in influencing people’s future health. For those rare conditions such as cystic fibrosis and Huntingdon’s disease where genetic tests may be useful, having proper medical counselling and advice is vital."
GeneWatch believes new legislation is needed so that people are:
- fully informed about the implications of taking a genetic test before they do so;
- given accurate and up-to-date medical and scientific information about the results and their reliability, and proper medical advice;
- protected from potential misuse of their genetic information.
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For further information please contact:
Dr Helen Wallace on 01298 871898
Notes for editors:
- "HGC announces consultation into the supply of ‘over-the-counter’ genetic tests", Human Genetics Commission News Release, Tuesday 16 July.
- "Public ‘misled by gene test hype’", The Guardian, Tuesday 12 March, 2002. Available on http://www.guardian.co.uk/Archive/Article/0,4273,4372400,00.html
- http://www.bankdna.com/breakthrough_genetic_profiling.asp