Embargo: Wed 17 Nov 2004
A new report on the future of genetic testing is driven by commercial interests, not by health, GeneWatch UK said today. The report, by the Healthcare Industries Task Force will be published on Wednesday (1). Its draft annexes include industry’s view of how healthcare services might look in future (2). These include claims that everyone will know their genetic make-up from birth and that this will lead to people being treated before they become ill.
"Treating people who are supposedly "genetically predisposed" to future illness would massively expand the drug market to healthy people, perhaps for life. But genetic tests are poor predictors of most diseases in most people. This is a marketing scam, not a healthcare policy," said Dr Helen Wallace, Deputy Director of GeneWatch UK. "Industry has set out a false vision, based on an outdated view of how genes work. It is shocking that the Government appears prepared to publish this with no independent assessment of the claims".
The idea that every baby will have its genome screened at birth has been widely criticised since its inclusion in the Government’s White Paper on Genetics in 2003. The Government asked the Human Genetics Commission (HGC) and the National Screening Committee (NSC) to assess the idea (3). Problems include: the large number of people identified as "genetically susceptible" who will never get the predicted illness and may take unnecessary medication; the potential to mislead people into thinking that only a minority of people with "bad genes" need to quit smoking or eat a healthy diet; lack of ability to consent to tests at birth; and concerns about privacy and genetic discrimination (for example, by insurers or employers) (4).
Although some genetic tests are useful, GeneWatch warned that tests are currently unregulated so companies can make misleading claims about a person’s risk of future illness. Most studies linking genes to common diseases later turn out to be wrong. Tests can be sold ‘over-the-counter’ in shops and on the internet and some companies already use them to market supplements, medicines and skin creams (5).
"The Government should be regulating these genetic tests, so they are only used when the results are valid and useful for health," said Dr Wallace, "Instead it seems prepared to write a blank cheque to the healthcare industry, who want to market tests and medication to people who are well".
Tackling unhealthy diets, lack of exercise and smoking is the best way to prevent most common diseases. The current epidemic of obesity is not due to an increase in genes for obesity, but lack of exercise and unhealthy diets. Smoking – not genes – is the most important risk factor for lung cancer.
For further information please contact:
Dr Helen Wallace on 01298-871898 (office) or 07903-311584 (mobile).
Notes to Editors:
- The task force includes Government and industry representatives. Its report will be published on: http://www.advisorybodies.doh.gov.uk/hitf .
- The draft annexes are available on: http://www.advisorybodies.doh.gov.uk/hitf/visionpaperjul04.pdf . The vision of healthcare by 2020 is on pages 9 to 10.
- The HGC/NSC’s report has been delayed until March 2005 and is unlikely to endorse the proposal.
- GeneWatch’s briefing "Bar-coding babies: good for health?" is available on: http://www.genewatch.org/HumanGen/Publications/briefings.htm#Brief27 .
- GeneWatch’s briefing "Genetic tests and health: the case for regulation" is available on: http://www.genewatch.org/HumanGen/Publications/briefings.htm#Brief28