GeneWatch PR: GeneWatch slams voluntary gene test guidelines

GeneWatch UK today condemned proposed voluntary guidelines for genetic tests as a dangerous sham. The guidelines, published today by the Human Genetics Commission, are a set of principles that the Government advisory body says companies selling gene tests to consumers should meet (1). Although some of the principles are important, there will be no independent scrutiny of companies' performance or the claims they make about people's risk of developing diseases in the future.


Last month, an investigation by the US Government Accountability Office (GAO) found that companies were giving people misleading interpretations of what their genes mean for their health (2). The results from different companies were frequently contradictory and one woman was falsely told she was "in the high risk of pretty much getting" breast cancer - a claim described by experts as "unacceptable and truly frightening" (3). Gene testing companies criticised by the GAO include 23andMe, funded by Google and founded by the wife of Google-founder Sergey Brin, and Navigenics, in which Google also invests.


"The Commission claims that the proposals are like a kite mark for companies, but without independent scrutiny the kite mark will be meaningless" said Dr Helen Wallace. "These proposals are a rubber stamp for snake oil merchants who are indulging in the marketing of fear".


Gene testing companies and commercial partners, including the food, pharmaceutical and private healthcare industries, are attempting to cash in on the science behind the Human Genome Project (HGP). However, plans for the 'personalised' marketing of health products - including supplements, functional foods, skin creams, medical tests, medication and advice - to people based on their supposed genetic risk of future illness have been undermined by the poor predictive value of genetic tests for most diseases in most people. Vested interests that lobbied for the HGP and funded many of the scientists involved - including the tobacco industry - made repeated false claims about the role of genes in common diseases such as lung cancer and hypertension and oversold the likely benefit to health of genetic 'prediction and prevention' of disease (4). The gene screening plan was originally developed to avoid controls on pollution and on unhealthy products such as fast food and tobacco.


Two of the companies investigated by the US GAO - Navigenics and DeCode Genetics - were members of the HGC panel that developed the gene testing principles published today. The US FDA has stated it will now regulate gene tests in the USA and a Senate Committee has been cross-examining the companies involved (3). The EU has issued a consultation on revision European regulations for medical tests which, if supported by the UK Government and others, could allow independent regulatory oversight of commercial genetic testing to be developed to protect consumers (5).


"By issuing these weak and meaningless proposals the Commission is undermining plans to implement proper controls on misleading gene test marketing" said Dr Wallace. "It has become a voice for industry instead of a voice for members of the public. It should be ashamed".


For further information contact:

Dr Helen Wallace: 01298-24300 begin_of_the_skype_highlighting              01298-24300      end_of_the_skype_highlighting (office); 07903-311584 (mobile).


Notes for editors:

(1) The Human Genetics Commission PR and Report are available from:

GeneWatch UK's response to the HGC's consultation on the Principles is available on:  

(2) US Government Accountability Office. Direct-To-Consumer Genetic Tests: Misleading Test Results Are Further Complicated by Deceptive Marketing and Other Questionable Practices. GAO-10-847T July 22, 2010. Available on:

(3) American Medical News report on: 2nd August 2010.

Navigenics, 23andMe slammed in Government report. On:

(4) GeneWatch UK briefing 'History of the Human Genome' available on:

(5) Consultation on revision of the In-Vitro Medical Devices Directive available on:

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