Leaders of American Effort to Map Human Genes Raise Privacy Issues : Science: Among other concerns is worry that physicians or insurance companies can use data to draw inferences about a person’s relatives.

Leaders of the American effort to map human genes say individuals should have a “right to genetic privacy,” which they concede will be difficult to ensure because of an upcoming explosion in genetic knowledge.

“Speaking as a citizen, I think genetic information should be absolutely private. The idea that there will be a huge data bank of genetic information on millions of people is repulsive,” James D. Watson, director of the National Center for Human Genome Research, told a House subcommittee recently.

But already the ability to “fingerprint” individuals by genetic tests is in common use in courts, the Nobel laureate said. He speculated that in 10 years, such forms of identification may be reducible to simple bar codes, easily stored and transmitted.

“I shudder at the thought of all this information in the hands of a malicious head of the FBI,” Watson, one of the two people who first described the structure of DNA, told the House Government Operations subcommittee on government information, justice and agriculture.

“Individuals must have control over the acquisition of personal genetic information,” Bernadine Healy, director of the National Institutes of Health, told the panel. “Genetic information is especially personal because it can identify health risks we inherit from, and often share with, our families, and that are built into our bodies at a very basic biological level.”

That a physician--or insurance company--can use results of genetic tests to draw inferences about a person’s relatives “is one way in which genetic information is different from other sorts of medical information,” said David J. Galas, director of the Energy Department’s human genome research program. But, Galas said, even for more conventional medical information, “the ethical, legal and social issues . . . have never been properly addressed.”

The NIH and the Energy Department are directing the Human Genome Project, a 15-year effort to determine the location, and eventually the chemical sequence, of all the genes contained in human DNA. So far, about 3,000 of an estimated 100,000 or more genes have been located with some precision.

Among sticky questions about genetic testing mentioned by witnesses were whether:

* A doctor who discovers that a patient has a gene for a treatable inherited disease can ethically tell the patient’s relatives that they should be tested, even if the patient objects.

* Parents have the right to have their children tested for an untreatable disease of middle age, such as the inherited neurological disorder Huntington’s disease, thus presumably burdening those who have tested positive with several decades of anxiety.

* A health insurer should be allowed to charge more for a policy sold to someone who is a “carrier” of a disease gene, such as that for sickle-cell anemia, because of the chance that the person’s child will have the disease and incur high medical bills.

* Employers should be allowed to order the testing of a prospective employee for genetic traits as part of the now permissible gathering of “job-related medical information.”

Over the last two years, NIH has spent $6 million researching ethical, legal and social questions related to genetic research. Last year, 5% of the genome project’s budget was used for research and public education of these issues.

“We don’t want to have the genome in front of us and then scratch our heads about what this all means,” Healy said.

Several witnesses told stories, however, suggesting that “discrimination by genotype” already exists.

Paul R. Billings, a medical geneticist at California Pacific Medical Center in San Francisco, testified about an unmarried Wisconsin woman who, after hearing that a nephew had been diagnosed with cystic fibrosis, inquired at a clinic whether she could be tested for the gene, which is carried by about 1 in 25 people of Anglo-Saxon ethnicity. Although a test was available, she decided not to take it.

Some time later, Billings told the panel, the woman married. Her husband’s health insurer--which used the clinic and presumably had access to records there--told her that if she did not have the cystic fibrosis test done, the company would not insure her or her husband. To give birth to a child at risk of developing cystic fibrosis, both the woman and her husband would have to be carriers of the gene implicated in the disease. If both parents have the gene, there is a 1 in 4 chance their child will develop the disease.

In a second case, Billings told of a man in an eastern state who had an inherited form of muscular dystrophy and was refused life insurance, despite a letter from his doctor stating that the symptoms--mild leg weakness--had not changed in 20 years and did not threaten his life expectancy. Soon afterward, the man’s automobile insurance--provided by a different company but serviced by the same broker through whom he had sought the life insurance policy--was canceled, even though his driving record was excellent. Muscular dystrophy was cited as the reason.