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Media Release - 9 April 2003In
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 |