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Warning over DIY genetic tests

31 July 2006
Appeared in BioNews 369

Consumers should be wary of home DNA testing kits that claim to test whether the customer carries genes for certain diseases, according to an investigation by the US Government Accountability Office (GAO). The Senate Special Committee on aging, requested the year long investigation as part of the hearing 'At home DNA tests: Marketing Scan or Medical Breakthrough'. The report said the tests are misleading and lack predictive value.

The test results recommend expensive dietary supplements, and exercise information, to address their genetically determined risk of conditions such as heart disease and diabetes, without consulting a doctor. GAO suggests that this advice may exploit the customer.

GAO investigators purchased tests from four genetic testing websites, namely Market America, Genelex, Sciona and Suracell. They used DNA samples from an unrelated man and woman to create profiles of 12 fictitious characters with different age and lifestyle descriptions. The websites found different results for each profile. The GAO report explained that 'if the recommendations were truly based on genetic analysis, then the nine fictitious characters created using the female DNA should have received the same recommendations because the DNA came from the same source. Instead, they received a variety of different recommendations based on their fictitious lifestyles'.

Dr Kathy Hudson, director of the Genetics and Public Policy Centre, at Johns Hopkins University's Berman Bioethics Institute fears that unregulated at-home tests will do damage to the positive medical discoveries that arose from the Human Genome Project.

'Genetic testing is growing rapidly and holds great promise to improve health and healthcare', Hudson said. 'The information provided by genetic tests is used to make profound, sometimes life-and-death, decisions. It is therefore imperative that this information be accurate and reliable and relevant to a patient's health'.

Representatives from the companies that offer the at-home tests said they provide an important service and encourage customers to seek a medical professional to interpret the results. All said that they would welcome further oversight of their processes.

When asked how the company could offer different nutrition advice for the same DNA, Rosalynn Gill-Garrison, Chief Science Officer of Sciona, said that this was because the advice is largely tailored to the questionnaire about customer's current diet and health.

DNA testing kits have also been criticised in the UK. A meeting on genomics and public health held in London in January this year warned that using genetic tests to find out the risks of developing an illness was sometimes 'a waste of money'.

'Beware' online DNA testing
The Washington Times |  28 July 2006
Consumers warned on home DNA tests
Monsters and Critics |  28 July 2006
GAO Slams Direct-To-Consumer Gene Tests
CBS News |  27 July 2006
3 May 2009 - by Dr Rebecca Robey 
The German parliament has approved legislation severely restricting the use of genetic testing. Under the new laws, which have been debated for more than seven years, genetic tests may only be carried out under specific circumstances, and only then after professional medical consultation and with the consent...
21 August 2006 - by Dr Kathy L Hudson 
While some have warned of the emergence of 'genetic exceptionalism' - the fear that genetic medicine will be treated differently than, and regulated separately from, conventional medicine - the sad reality is that genetics has been ignored by US health oversight agencies such as the Centers for Medicare and Medicaid Services (CMS...
14 August 2006 - by Dr Carol Isaacson Barash 
Consumers' ability to obtain laboratory test services directly and without a medical order is increasing. Is this a good thing? Direct to consumer, otherwise known as direct access, clinical testing has been permitted for many years in some, but not in all states within the US. This disparity suggests that...
30 January 2006 - by BioNews 
Scientists attending a meeting on genomics and public health in London last week criticised some genetic tests being sold directly to the public. According to a report in the Guardian newspaper, tests that claim to assess a person's risk of developing common illnesses - sold via the Internet or through chemists...
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