Published on Tuesday, September 19, 2000 in the Guardian of London
Who's Testing Our Genes - And Why?
by Julian Borger in Washington
The US 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 US 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."

Guardian Newspapers Limited 2000