Produced jointly with the Consumers' Association
Embargoed until 00.01am Friday 7th June 2002
GeneWatch UK and Consumers’ Association today welcomed the decision by 13 high-street retailers, including Boots, John Lewis and Marks and Spencers, not to sell unregulated tests of people’s genetic make-up.(1)
The first genetic tests from UK company Sciona, are already on sale on the internet and had been on sale for a trial period in 11 Body Shop stores. Sciona tests for polymorphisms – gene variations – in nine genes. Sciona’s DNA sample collection kit uses a swab to gather cells from inside the mouth.
Consumers’ Association and GeneWatch UK warned that such genetic tests could mislead customers and called on the Government to urgently regulate their sale.(2) GeneWatch called on the Body Shop not to resume selling genetic tests.
The Government’s Human Genetics Commission (HGC) confirmed in its meeting in Manchester last month that Sciona’s genetic testing service does not conform with its voluntary Code of Practice on genetic testing. But it plans to take no action to prevent the tests being sold. The number of unregulated genetic tests, claiming to predict customers’ future health needs based on their genetic make-up, is expected to increase rapidly.(3)
Dr Helen Wallace, Deputy Director of GeneWatch UK, said:
"These retailers are way ahead of ministers in recognising the potential downsides of these products. The Government’s failure to regulate tests leaves people very vulnerable to misleading claims. Genetic test results can lead to both unnecessary worry and misleading reassurance about people’s risk of future illness and the action they should take.
"The number of dubious genetic tests and dodgy claims is set to spiral rapidly out of all control. Irresponsible companies could also start to market diet pills and vitamins, and ultimately medicines, to those who they claim have failed genetic tests. Urgent action is essential to regulate this industry and ensure that people taking tests get proper medical advice."
Nikki Ratcliff, Senior Health Policy Advisor, Consumers’ Association, said:
"Responsible retailers are to be congratulated, but consumers still need protection from misleading claims and from potential misuse of their genetic information.
"Consumers must be properly informed before they take a test and must have access to advice and counselling. There also needs to be specific rules and guidelines covering genetic databases and strict controls over who is given access. People need to be aware that the necessary legal safeguards are not yet in place."
For further information, please contact:
Gareth Headon, Consumers' Association (Tel. 020 7770 7106).
Notes for Editors:
- The following 13 High Street retailers have so far responded to a letter from GeneWatch UK and the Consumers’ Association: Boots the Chemists, United Co-Op, Co-Operative Group Ltd, Lush Ltd, Neal’s Yard Remedies, Savers Health and Beauty, Marks and Spencer, Harvey Nichols, John Lewis Partnership PLC, Waitrose, Somerfield, Holland and Barrett and Moss Pharmacies. All say they have no current plans to sell Sciona’s tests and a number express concern about the potential to mislead customers. The letters are available on the GeneWatch UK website at www.genewatch.org.
- GeneWatch and Consumers’ Association’s main concerns
are:
- Sciona’s 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.
- Human Genetics Commission Meeting, Manchester, 14 May 2002. Paper HGC02/p6. The HGC has no powers to prevent the sale of tests and decided at its meeting to inform the Government that assessing individual genetic tests should not be within its remit. Although an advisory committee exists to assess the usefulness of genetic tests to the insurance industry, there is no regulator to assess the potential harm or benefits to people’s health.
- For further information see ‘The genetics revolution – getting the policy right for consumers’, a Consumers’ Association briefing paper available at www.which.net/campaigns and ‘Unregulated genetic testing on the high street and the internet’, Parliamentary Briefing No. 2, GeneWatch UK available at www.genewatch.org