genetic discrimination

["Ken Hanly" <khanly@xxxxxxxxxxxxxxx>]

The Guardian (UK) Tuesday September 19, 2000

Special report: the ethics of genetics

'If you'd said I'd get fired for this, I would have laughed'

Health warning: As DNA screening takes hold, Americans find it can
leave them unemployed and uninsured

By Julian Borger in Washington

The U.S. equal employment opportunities commissioner, Paul Miller,
has called for tougher safeguards for workers against genetic
discrimination after it emerged that hundreds of people have already lost
their jobs or insurance protection as a direct result of advances in
genetic screening.
"Just as it is illegal to refuse to hire an individual because of their
race or gender, it should be illegal to make job decisions based solely
upon genetic information without considering that person's ability to do
the work," Mr Miller wrote in an article in the University of Maryland's
Journal of Health Care Law & Policy.
"It is simply bad science for an employer to use the presence of a
predictive genetic trait or marker to make workplace decisions, because
those traits cannot predict how well that person will succeed in the
workplace."
Civil rights activists are growing concerned that if such Orwellian
practices develop at the same pace as the race to decipher the human
blueprint they could create a "genetic underclass" considered
unemployable because of the chemical codes they carry inside them.

'Flaws' cost jobs

In a recent survey carried out by the Shriver centre for public health
in Massachusetts, doctors and genetic testing centres reported 582
cases of people who were turned down for jobs or health insurance
because of "flaws" discovered in their genes.
Another watchdog organisation, the Council for Responsible
Genetics (CRG), says it has documented more than 200 cases of
genetic discrimination by employers.
Researchers believe these figures are the tip of an iceberg. In most
cases the corporations involved are not keen to publicise their practices,
and nor are the victims, anxious to avoid further stigmatisation. In the
cases cited by the genetics council the victims are not referred to by their
full names.
They include Kim, a social worker, who mentioned at a staff
workshop that her mother had died of Huntington's disease, giving her a
50% chance of developing the potentially fatal genetic condition. A week
later she was dismissed.
In another case a 40-year-old woman with an exemplary employment
record agreed to take part in a genetic research survey and tested
positive for BRAC1, a gene linked to some breast and ovarian cancers.
Despite having preventive surgery she lost her health insurance and
then her job.
Mr Miller is calling for new federal legislation to close the legal
loopholes that allow employers and insurance companies to gain access
to genetic information on prospective employees and use that
information in hiring and firing.
An attempt to get Congress to pass an anti-discrimination law - led
by the Democratic leader in the Senate, Tom Daschle - has been
blocked by the opposition of the insurance industry and the corporate
lobby in Washington.
Watching the bill being shelved until next year at the earliest, the
senator warned: "We simply cannot afford to take one step forward in
science while taking two steps backwards in civil rights."
The scientists leading the race to decode the human genome - like
the physicists before them who first split the atom - also know the
dangers that are inherent in their mission.
As the first draft of the human genome map was unveiled to a great
fanfare in June one of its principal authors, Francis Collins, director of
National Human Genome Research Institute, said: "Already, with but a
handful of genetic tests in common use, people have lost their jobs, lost
their health insurance and lost their economic well-being due to the
unfair and inappropriate use of genetic information."

Records unprotected

Recent research has found that the fear of future discrimination can
be as damaging as discrimination itself, as people forgo screening for
potentially treatable conditions for fear the information will be used
against them in the future.
A study by Georgetown University in Washington found that fear of
discrimination has led one in 10 people at risk deciding against testing
for genetic traits linked to cystic fibrosis, Huntington's disease, colon
cancer and other conditions with a hereditary link.
The U.S. department of labour has found that many women are
avoiding breast cancer screening because they believe a positive finding
would go on their medical records and become available to employers or
insurers.
Their fears are justified in an unregulated market, where medical
data are often treated as a tradable commodity, bought and sold by
medical centres and insurance companies. In the words of one executive
at a medical data company: "There are more controls over the disclosure
of your video rentals than your medical records."