Media Release - 9 April 2003 

HGA calls for a ban on the marketing of genetic tests 

In response to the Human Genetics Commission's report on genetic testing, Human Genetics Alert (HGA;1) today called for a ban on the marketing of genetic tests.  HGA said that the HGC's recommendations were a betrayal of consumers' interests.  Although the HGC report argues for regulation of genetic tests, its proposals are a vague and hopeful mishmash, which will serve only to create confusion and loopholes.  The HGC is well aware that the new Medicines and Healthcare Products Regulatory Agency, which it hopes will regulate testing, lacks the regulatory powers to scrutinise whether tests will mislead consumers. 

The report reflects the HGC's complacency regarding the damage that genetic tests are already doing, particularly in the USA. There, we have already seen the exploitative marketing of scientifically-unvalidated and unethical tests (2).  Recently the European Commission's Group on Ethics in Science and New Technologies issued a strong statement of concern regarding the situation in Europe (3), which the HGC seems to have ignored. 

 In HGA's view, the HGC has abdicated its role as the public's watchdog on genetics.  Until 2002 it had a clear role as regulator of genetic testing, albeit with no statutory powers.  In 2002 it decided it did not wish to fulfil this role.  Thus despite the HGC's claims to be encouraging stricter regulation, we now have no regulator and no coherent proposal for who should regulate.  At the very least the government must introduce clear legislation with strong powers for a regulator to judge both the clinical usefulness of genetic tests and the their ethical and social appropriateness.

 HGA stresses that there is no need for over-the-counter marketing of genetic tests. Such tests should always be taken under medical supervision and should be accompanied by genetic counselling from qualified personnel.

 HGA's coordinator, Dr David King, said: "While we welcome the HGC's acknowledgement of the need for regulation, this report does nothing to further consumers' interests.  We need clear and specific proposals, not a vague and hopeful mishmash of suggestions.  We are very concerned by the HGC's tendency to only give the government the advice it thinks politicians want to hear."

Notes for Editors 

1. Human Genetics Alert is a non-profit watchdog group      funded by a leading British charity. 

2. In the USA, where genetic tests are currently not regulated we have already seen:

        Testing without requirements for counselling or consent

        The marketing of tests whose predictive value and medical utility is uncertain

        Manipulative advertising

        Testing that abuses children's rights

        Widespread availability of unethical tests, such as prenatal sex selection

3. Statement by the European Group on Ethics in Science and New Technologies on advertising genetic tests via the Internet, 24 February 2003 http://www.europa.eu.int/rapid/start/cgi/guesten.ksh?p_action.gettxt=gt&doc=IP/03/273|0|RAPID&lg=EN

  
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