For immediate release: Tuesday 4th June 2002
GeneWatch UK today published a leaked document which exposes the Government’s failure to protect consumers from companies selling misleading and unethical tests of people’s genetic make-up (1).
The first genetic testing kits, marketed by UK company Sciona, have been on sale for a trial period in eleven Body Shop stores and are still available on the Internet. Sciona claims to give dietary advice tailored to people’s genetic make-up.
The leaked draft statement from the Human Genetics Commission criticises the scientific validity of Sciona’s tests and the lack of information for customers about possible links between the genes tested and serious diseases such as cancer (2). The statement was never publicly released, following a letter from Sciona to the Secretary of State for Health, which apparently threatened legal action from the company (3).
GeneWatch UK called on the Government to regulate the sale of genetic tests as a matter of urgency and reiterated its call for the Body Shop not to sell such tests in future (4).
Dr Helen Wallace, Deputy Director of GeneWatch UK, said:
"It is shocking that official concerns about Sciona’s tests have been hidden from the public. Yet again the Government has been left standing on the sidelines by their failure to regulate this new technology. A hands-off approach to regulation leaves people extremely vulnerable to both unnecessary worry and misleading reassurance about their risk of future illness and the action they should take."
GeneWatch UK said it was also concerned that genetic testing companies might also start to market products such as vitamin supplements and diet pills to people on the basis of their genetic test results.
"Unless controls are put in place, we could see an explosion in misleading marketing and unscientific claims about genetic test results," said Dr Wallace. "For most people, a balanced diet and a healthy lifestyle is much more important than genetic make-up in determining their future health."
For further information, please contact:
Dr Helen Wallace, GeneWatch UK (Tel. 01298 871898. Mobile: 07903 311584)
Notes for Editors:
- The leaked draft statement on Sciona’s genetic testing service, dated April 2002, is available in the GeneWatch UK website at www.genewatch.org . Today’s article in the Guardian newspaper, Genetic testing rules 'unenforceable', is available at www.guardian.co.uk/Archive/Article/0,4273,4426891,00.html .
- The document, from the Human Genetics Commission Genetic Services Subgroup states that the committee is "unaware of any sound scientific studies that have demonstrated that changing diet because of ones genetic makeup can alter health outcomes". It also warns that "…many common variations in these genes are linked with an increased risk of cancer and other conditions. The customer information does not, in our view, adequately address the potential health implications of the genetic tests".
- The Human Genetics Commission Meeting in Manchester, 14 May 2002, notes that Sciona’s Chief Executive had expressed concerns about the forthcoming announcement in a letter to the Secretary of State for Health (Document HGC02/P6). The statement was never published. The original decision not to approve the tests was taken unanimously by the Sub-Committee on 3 December 2001 (Minutes available on www.hgc.gov.uk/subgroups/genetic_testing_03december.htm#4 )
- GeneWatch’s main concerns are that:
- genetic tests may be misleading – for most people, a healthy balanced diet, getting enough exercise and not smoking are much more important in determining their future health;
- genetic tests may tell people information that they don’t want to know about their risk of future illness. Employers or insurers may seek access to this information in the future and use it to exclude people from employment or insurance;
- there are no laws to prevent genetic testing companies from selling genetic information from their databases or patenting people’s genes without their knowledge.
For further information see:
"Unregulated genetic testing on the High Street and the Internet", Parliamentary Briefing No. 2, GeneWatch UK. Available on PUT A LINK IN HERE.