http://news.bbc.co.uk/hi/english/health/newsid_968000/968443.stm

Thursday, 12 October, 2000, 11:28 GMT 12:28 UK 

Genetic test first for UK

              Genetic tests can predict future illness
              Insurers in the UK are to be allowed to use
              genetic test results to identify people with
              hereditary illnesses. 

              The government will announce on Friday that
              insurers will be able to use those results to
              refuse cover or to push up premiums for those
              born with genes that could lead to fatal
              conditions. 

              The decision makes Britain the first country to
              approve the commercial use of gene
              technology in this way. 

              The Genetics and
              Insurance Committee,
              an advisory body
              reporting to the
              Department of Health,
              has decided that a test
              used to identify a
              hereditary risk of
              contracting the disease
              Huntington's chorea is
              technically reliable. 

              Tests covering several other conditions,
              including hereditary breast cancer and
              Alzheimer's disease, are also awaiting approval.

              Two years ago another advisory body, the
              Human Genetics Advisory Commission,
              recommended a moratorium on the use of
              information from such tests. 

              However, that advice was rejected by the
              government, which decided insurers should be
              able to use such information, subject to the
              Genetics and Insurance Committee agreeing a
              test's technical reliability. 

              The announcement is likely to fuel the ethical
              debate over the use of genetic information. 

              Critics fear that vulnerable groups could find it
              difficult to get a mortgage or life insurance, or
              face higher premiums. 

              But the insurance industry dismissed that
              suggestion. 

              No compulsion 

              Professor John Durant, chairman of the
              Genetics and Insurance Committee, told the
              BBC that nobody would be asked to take a
              genetic test by an insurance company. 

              Rather they would be
              expected to disclose
              the results of any
              genetic test for
              Huntington's disease
              they had taken in the
              past. 

              Professor Durant said
              this would not be a
              legal obligation, but
              insurance companies
              would have the right to
              refuse to offer
              insurance if a customer
              refused to reveal details. 

              He said: "It is not a punitive step. This will
              actually benefit very many people seeking
              insurance. 

              "The only people who are likely to have taken
              a test for Huntington's disease are people with
              a family history of this disease. 

              "Many of those people will actually have had
              results which show that they are fortunate
              enough not to have inherited the gene, so
              those people will be able to get insurance, at
              the moment they may well find it difficult." 

              Mary Francis, the Director-General of the
              Association of British Insurers, said that
              companies already asked potential customers
              about family history of disease. 

              She said: "This is really an extension of what
              already does happen." 

              Sue Watkin, chair of
              the Huntington's
              Disease Association,
              also said insurance
              companies were already
              using genetic test
              results to calculate or
              refuse premiums. 

              She said: "Our main
              concern is that people at risk of late onset
              genetic disorders should be able to get
              insurance of some kind up to a certain level. 

              "At present, many people are made offers they
              just cannot afford." 

              Ms Watkin said that a person at 50% risk of
              developing Huntington's often found their
              insurance premium loaded by as much as
              300%. 

              She called on the government to establish a
              fund to be used to provide insurance for
              people at risk. 

              The National Consumers' Council is concerned
              people will be put off having tests because
              they feared that the results might count
              against them - with a possible knock-on effect
              on their health. 

              A spokeswoman said: "A person might think if I
              take a test I will know information that I don't
              know now, and maybe ignorance is bliss. 

              "If you don't know the information you can't
              put it on the form." 

              The Human Genetics Commission, another
              government advisory body overseeing
              developments in the use of genetic
              technology, said that it would launch shortly a
              major public consultation exercise about the
              use and protection of genetic information,
              which would include insurance issues. 

              The exercise would eventually result in the
              Commission making recommendations to
              ministers.

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