GENETIC TESTING:
NIGHTMARE IN THE MAKING?By Lewis L. Maltby
You may be perfectly healthy and never been sick a day in your life, yet no employer will hire you because tests show that one day you might develop a genetic disease.
You may even be denied a job or fired from the one you have because a member of your family comes up positive on a genetic test and the employer doesn't want to spike their health insurance costs.
"Unfair!" you cry? So do most people. A 1994 Harris Poll found that 91% of employees and human resources managers agree it's wrong to screen out job applicants "who might develop an inherited disease in the future."
Yet some employers are not only denying jobs to such applicants, they're firing workers as well!
Science and Engineering Ethics magazine records the case of Christine DeMark, a healthy 24-year-old social worker who made the mistake of revealing that a family member had Huntington's disease. Suddenly, her outstanding performance reviews turned sour (her employer wouldn't say why) and she was fired.
Another victim was a 53-year-old man who applied for an insurance company job and admitted he had hemochromatosis (but no symptoms). First, the company said they wanted him, then he was offered the job but no medical coverage, and then he was told "no" flat out.
Can't happen to you? New research lists over 1,600 diseases known to have genetic components. The list is not confined to relatively rare diseases such as Huntington's, Alzheimer's and sickle cell trait. Common conditions such as heart disease and breast cancer are also genetically linked. You may think of yourself as "normal" yet be one of the millions of people walking around with a genetic marker you know nothing about.
The American Management Association recently reported that 53 of its members, which include most of the country's largest employers, conducted genetic testing of applicants or employees.
Worse yet, such discrimination may be legal. The Americans with Disabilities Act prohibits employment discrimination against people who have an injury or disease but can still do the job. An employer cannot refuse to hire someone because they have Huntington's disease or breast cancer. But a currently healthy person who carries a gene that may make them sick in the future may not be protected because they are not currently disabled.
Several states, including New York, New Jersey and Oregon have passed laws to protect their citizens from genetic discrimination. But passing 50 separate state laws to stop an abuse that is national in scope will take years.
It gets worse. Recently, the Clinton Administration announced a proposal for medical privacy regulations that calls for the creation of a massive national database linking all of our most intimate information -- including the results of any genetic tests in our files.
Instead of truly protecting medical privacy, the Administration's proposal instead endorses a system that will allow employers, insurance companies, law enforcement agencies, and others seeking evidence of "fraud" to rifle through our medical records from their desktop computers.
In the absence of meaningful legal protection, we may well be on the road to a future in which thousands, or even millions, of people face lifelong job discrimination -- and worse -- because of something over which they have no control. This is not only a massive injustice, it denies society the benefit of the contributions they could have made in their productive years.
Responding to these kinds of incursions on medical privacy and other aspects of personal privacy, this summer the American Civil Liberties Union launched a nationwide "Take Back Your Data!" campaign to fight for legal reforms to privacy laws and resist further encroachments on the right to privacy. Through its website at http://www.aclu.org/, visitors are alerted to contact their elected officials and voice support or opposition to pending legislation.
It is time to "take back our data." It would be tragic to work as hard as we have to eliminate discrimination based on race and gender only to leave the door open to other forms of discrimination that are equally unfair.
