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Discriminated on the basis of their genes?



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Monday December 21 7:23 AM ET

Genetics Advances Could Be Mixed Blessing

By Marie McInerney

ADELAIDE, Australia (Reuters) - It promises to deliver a new
golden age of health, but gene technology could prove a bitter
pill to swallow for some individuals and groups around the
world.

Life insurance companies in this brave new world could refuse
cover to someone diagnosed as likely to contract a debilitating
disease, no matter when it may strike. A crippling disease like
Huntington's -- a disorder of the central nervous system -- may
not strike for many years, or at all.

Employers could demand job applicants undergo gene testing to
try to cut down sick leave and early retirement costs.

Ethnic and religious groups with a propensity to particular gene
disorders could feel stigmatized or just become research fodder
for medical gains to be enjoyed elsewhere, skeptics suggest.

And that is even before the obvious questions about abortion and
human embryo research are raised, and before any decisive
results from research into genes or mutations responsible for
certain behavioral traits, or even intelligence.

``We do not allow discrimination on the basis of color,
religion, gender....Why on earth would you want a society in
which you actively discriminated on the basis of their genes?''
Australian molecular geneticist David Turner told Reuters.

``TIDE OF FEAR AND DOUBT''

Speakers at an international conference into the ethical
implications of genetic research in Australia recently raised
concerns that new waves of financial and social discrimination
could target people identified as facing serious diseases.

Representative Nita Lowey, a New York Democrat, said many of the
benefits offered by genetic testing could be ``washed away on a
tide of fear and doubt'' if people believed tests could cost
them their jobs or insurance cover.

Citing a 1997 survey in which most respondents said they would
not take genetic tests for diseases if insurance companies or
employers were granted access to the results, Lowey warned of
the risks of failure to address genetic discrimination.

``Instead of the Human Genome Project opening a new era of
understanding and treatment, it will create a world in which
ignorance is preferable to knowledge and in which medicine is
sacrificed to the job market,'' she told GeneCom 98 delegates.

MAPPING THE HUMAN GENOME

The Human Genome Project, a A$3 billion (US$1.9 billion) global
program to map and sequence all human genes, has been hailed as
spurring a new golden age in medicine which could wipe out major
diseases.

Scientists say there are now up to about 4,000 generally rare
diseases, such as Huntington's disease, cystic fibrosis, and
Duchenne muscular dystrophy, with so-called genetic markers that
can identify people who are at risk of contracting them.

They are working on tests that will show predisposition to more
common ailments, such as some cancers and heart diseases,
diabetes, asthma, Alzheimer's disease and schizophrenia.

Turner said advance knowledge of predisposition to a disease may
enable people to adopt lifestyles that could reduce the risk of,
or delay the onset of, a disorder.

But he said finding a gene associated with a disorder was a long
way from fully understanding the underlying pathology and even
further from knowing how to control the disorder.

``So, for a long time, knowledge of a future disorder will be a
sentence without remission,'' he said.

In the meantime, the conference was told societies needed to
begin to grapple with some of the implications of gene testing,
amid warnings that a little bit of knowledge can be a very
dangerous thing.

COMMERCIAL AND SOCIAL RISKS

Life insurance poses early problems -- the question is whether
the industry should gain access to gene tests to ensure people
predisposed to fatal illnesses do not abuse the system.

``If somebody knows he has a gene that is going to do some
damage later in life, I think the temptation would be very
strong to rush out and get an insurance policy, a large one,''
British scientist Sir John Maddox told the conference.

But there could be a major advantage for insurers: gene tests
may not necessarily cut disease levels, but could identify which
people will suffer what.

``It comes down...to the issue ultimately between the
profitability of the insurance companies on the one hand and the
public good of not discriminating against people on issues over
which they have no control themselves,'' Turner said.

Also at risk on other levels, the conference was told, are
certain ethnic and religious groups, among them the gypsies of
Europe, the Amish of Pennsylvania, and the Ashkenazi Jews.

Many researchers are concentrating their efforts on such groups
which, because of isolation or other reasons, have a high
propensity for some genetic disorders.

Australian geneticist Luba Kalaydjieva said there was no
shortage of research grants into gypsies, who count among the
most restricted genetic isolates in the world, chiefly due to
discrimination and their own enduring social mores.

``But getting funding for actually helping these communities is
another matter,'' she said.

U.S academic Nanette Elster said there was concern among
Ashkenazi Jews who had been diagnosed as particularly prone to a
gene-based breast cancer and Tay-Sachs, a painful
neurodegenerative disease which was fatal for young children.

``There is a real fear with genetics about eugenics and
Ashkenazi Jews are particularly sensitive to that given the
experience of the Holocaust,'' she told Reuters.

``If we get into the whole area of behavioral genetics, what is
going to happen if a particular racial or ethnic group is
identified as having a particular gene predisposing to what we
would consider a negative social trait or negative behavior?''
she asked.

Copyright  1998 Reuters Limited. 
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