The Body Shop and Sciona
In Spring 2002 the Body Shop was selling genetic tests by the company Sciona in some of its stores. Sciona were claiming that by testing genes they could advise their customers about what they should eat. They said their advice depended on your genetic make-up. GeneWatch UK was concerned that these tests were unregulated and misleading and recommended that the public did not take them.
By June 2002, the Body Shop had stopped selling the tests. Thirteen high-street retailers, including Boots, John Lewis and Marks and Spencers, had decided not to sell unregulated tests of people's genetic make-up.
What follows was written when the Body Shop was still selling the tests and gives more details about their problems. Sciona subsequently relocated to Boulder, Colerado and was one of the companies criticised in an investigation of genetic tests by the US Government Accountability Office (GAO). The company ceased to trade in May 2009.
1. They mislead customers
For most people, eating a healthy, balanced diet, getting enough exercise and not smoking are much more important in determining their health than their genes are. For example, Sciona tests for a gene linked to a vitamin called folate but folate levels depend much more on age, diet and whether people smoke than what genes they have. People need to get sufficient vitamins and avoid unhealthy foods whatever genes they have. It is particularly important that they are not misled into thinking that their "good genes" can cope with a bad diet.
2. The tests have serious implications that customers have not been warned about
Many scientists are exploring possible links between the genes Sciona tests and serious diseases like heart disease, cancer and mental illness, including workplace-related illnesses and birth defects. Although genes are usually poor predictors of future health (which depends on many other factors) people may learn something they don't want to know. This could also be information an insurer or employer might ask for in the future, and one day use to exclude people from insurance or employment or compensation for a work-related illness.
3. Customers' genetic information may be used for research they disagree with or be patented without their knowledge
Sciona plans to keep the samples and to link personal genetic information and lifestyle information in a database (known as a "biobank") as long as customers remain subscribers. Although Sciona has a "privacy policy" regarding names and addresses, an individual's personal genetic profile is unique to them and could be used to identify them, and who is related to them, in the future. Many companies will pay to do genetic research on these kinds of samples and want to claim exclusive rights to genes by patenting them – once a gene is patented this means no other company can sell new genetic tests or treatments using the same gene. The law does not require Sciona to inform people if it decides to patent or sell their genetic information. There is growing evidence that privatising genes in this way can stifle medical research and increase costs and many people believe it is immoral.
4. A step towards "predictive medicine"
A number of the big pharmacy and biotech companies are promoting the idea of "predictive medicine". This means using genetic tests to predict the chances that someone will get serious illnesses like heart disease, cancer or mental illness, and then offering either lifestyle advice or medication. The benefits for the companies are that they can sell genetic tests and expand the drug market to "pills for the healthy ill". But for many people this could do more harm than good - by worrying them and giving them medicines that they don't need. It could also take resources away from treating the sick and from preventing the underlying causes of these diseases.
Recent Articles
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in 2003GeneWatch PR: GeneWatch UK response to the Human Genetics Commission's 'Genes Direct' report.
8th April 2003 -
31st March 2003Questions for the Human Genetics Commission (HGC) to consider proir to publishing its advice to Government, in April, on the regulation of health-related genetic tests.
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in 2002GeneWatch PR: GeneWatch UK response to the Human Genetics Commission's announcement
15th July 2002 -
in 2002GeneWatch PR: High-street stores reject Sciona's human genetic testing
6th June 2002 -
in 2002GeneWatch PR: Leaked document exposes Government failure to regulate human genetic tests
3rd June 2002 -
in MP BriefingsMPs' Briefing: Human Genetics No. 2 - Unregulated Genetic Testing on the High Street and the Internet
31st March 2002Human genetic tests are now being sold directly to the public in the High Street and on the Internet. Genetic testing is unregulated and vulnerable customers are being misled. Current knowledge of genetics and health is too uncertain and complex to be left to commercial interests.
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13th March 2002 -
Guardian article - Public misled by gene test hype
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1st March 2002This briefing gives examines Sciona's genetic tests and questions the quality of information they provide