BOSTON — As genetic testing becomes more widespread, a growing number of people may find themselves denied insurance, employment, and social services, solely because test results indicate a genetic predisposition to a certain disease. The first signs of an emerging genetic underclass have already appeared, according to a recently completed survey by Paul R. Billings, director of the Clinic for Inherited Diseases, at the Harvard Medical School's Deaconess Hospital.
Using responses to a magazine advertisement and a leaflet sent to 1,119 genetics professionals across the United States and Canada, Dr. Billings documented nearly 30 instances in which people were discriminated against solely because they had been diagnosed as having a genetic disorder. Most of the respondents were able to supply supporting evidence of their claims.
``The people had very, very minor manifestations of genetic diseases,'' says Billings. ``Many of these people are not sick in an objectionable way, but they are treated as if they ... have a significant disability.''
Some cases Billings uncovered are particularly disturbing:
A salesman who had driven his car for 20 years without incident had his auto insurance canceled when his insurance company found out he had been diagnosed with a mild form of Charkocot-Marie-Tooth (CMT) disease, a neuromuscular disorder that can cause weakness in the extremities. Even though the man's doctor wrote a letter to the insurance company saying the disease had no impact on the man's driving, the company refused to reinstate the policy.
A woman mentioned that she had a mild case of CMT during her pre-employment screening at a telephone company. The examiner asked her what CMT stood for, looked up the disease in a medical book, and denied her the job, even though it had already been promised to her by a company recruiter.
Two women who each had a parent with Huntington's disease - and thus were considered to have a chance of developing the disease themselves - decided to adopt children. Both were disqualified. ``We feel that a 50-50 chance of getting a disease as serious as Huntington Disease is too great a risk,'' wrote one of the adoption agencies.
A pregnant woman whose fetus tested positive for cystic fibrosis, a children's disease associated with pancreas and lung problems, was told by her health-maintenance organization that if she didn't have an abortion, the organization would limit its coverage of the pregnancy and the resulting child.
Because of the way the survey was conducted, it isn't possible to know how widespread this new kind of discrimination actually is.
``I got the impression that they probably were isolated cases,'' says Dr. Robert Pokorski, medical director of Lincoln National Life Insurance, who is critical of Billings's work.
But Gary Marx, a professor of sociology at the Massachusetts Institute of Technology, says the prevalence of the discrimination doesn't matter: ``The issue with new technology is not `Is it widely abused?' The questions that have to be asked are `What is the danger? Where will this lead?'''
Genetic discrimination could lead to a society in which people are stigmatized not by diseases they have, but by diseases they might get.
Already, says Billings, a negative medical record can prevent a person from working for an employer who is unable or unwilling to afford higher medical insurance premiums. The genetically marked who do have insurance might become ``afraid to change jobs, and speak up at work,'' for fear of being unable to secure new insurance with a new employer, he says.
Such gene-typing overlooks the fact that many people who have the genetic potential never develop the corresponding illness or the problem is so slight that the disease goes undiagnosed and unnoticed.
Once upon a time, people believed that their lives were determined by the positions of the stars at the moment of birth. Are some people now ascribing that power to the arrangement of a person's genes? Genetics could become the astrology of the 21st century.