Le Monde Diplomatique. May 2000
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GENETIC TESTS AND HEALTH INSURANCE
A future divided
by DOROTHIE BENOIT BROWAEYS and JEAN-CLAUDE KAPLAN
<http://www.monde-diplomatique.fr/en/2000/05/051geneticsbox>
In Europe and America
In Britain, in November 1998, the powerful
Association of British Insurers
(ABI) in rejected the two-year moratorium on
genetic testing requested by the
Human Genetics Advisory Committee (HGAC). While
the British government
refuses to legislate on these questions, the ABI
has proposed a "code of
practice" (1) which bans insurers from asking
for tests but allows them access
to the results of any that may have been carried
out. However, insurers cannot
make use of the results for a policy for less
than £100,000. Seven tests
relating to seven diseases have been identified
as of interest to insurers. A
structure is to be established to see whether
the tests are relevant.
British insurers have also said that there is no
question of reducing premiums
for people with a "good genetic profile", lest
there be a mad rush for
discounts. In the English-speaking countries,
insurers generally make a
selection based on lifestyle. In this way,
account is taken of the greater risks
of smokers, for example.
At the other end of the scale, on 1 January 1998
the Netherlands brought in a
very strict law affecting insurers. This "Van
Boxtel" act bans the industry from
using genetic testing completely. Switzerland is
currently looking at these
issues in connection with its draft law on human
genetics.
Across the Atlantic, the scene is very
different. Genetic tests for paternity, for
example, are available without prescription in
the form of reagents. In France,
these are illegal without a court order, but are
offered for sale on a large
number of internet sites. But in the United
States they are available in
drugstores with no check on their quality or
medical suitability. Anyone can
check their risk of getting colon, prostate or
breast cancer, diabetes or
Parkinson's or Alzheimer's disease. The Texan
firm, Interleukine Genetics, is
marketing kits that people can use to test their
predisposition for
osteoporosis, asthma or coronary failure, while
rival firm Myriad Genetics
Laboratories lets you check your propensity for
breast cancer or salt-sensitive
high blood pressure.
According to Francis Collins, head of the US
National Human Genome
Research Institute (Bethesda, Maryland), there
are around 700 tests for
genetic predisposition on the American market,
only half of which are used by
the 400 medical analysis laboratories. Since
they are not standard commercial
products, the Food and Drug Administration (FDA)
cannot intervene and
there are many abuses.
To avoid such abuses, in June 1998 the US Health
Ministry set up the
Secretary's Advisory Committee on Genetic
Testing (SACGT) to advise the
National Institutes of Health (2). According to
that committee, only some 20
prediction tests are controlled and regularly
used in clinical practice.
At present, the US Congress is particularly
concerned with protecting data
and confidentiality. A survey conducted in 1997
showed that 22% of persons
with genetic risks said they had lost their
private health insurance because their
company got to know of their status. John
Hopkins University law professor
Lawrence Gostin is looking into these questions
in connection with health law
reform. For those who are worried Big Brother is
watching them, he says,
there is something more worrying still: Big
Brother is taking notes and keeping
them! From the lawyer's point of view, the
important thing is to find ways to
ensure that databases intended for research are
kept strictly separate from
those used for socioeconomic purposes. Those who
know that public and
private are now a continuum where information
knows no boundaries will
consider this quite a challenge.
D.B.B.
and J.C.K.
(1) Genetic testing (ABI code of practice)
revised August 1999: email
[log in to unmask]
(2) Chaired by Edward McCabe, professor of
paediatrics at the University of
California, Los Angeles.
Translated by Malcolm
Greenwood
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