The New York Times; December 27, 1990 – To the dismay of medical ethicists, insurance companies are beginning to deny health care coverage to people with genetic abnormalities, even if the defects have not caused any health problems.
Although the number of documented cases is small, ethicists say they may be the first steps toward an era of genetic discrimination. They say that several major forces are behind these moves: insurers who want to exclude people who may develop chronic illnesses, an aggressive biotechnology industry that is eager to exploit discoveries of genes that cause various illnesses and a research community that is making those discoveries at an astonishing rate.
But private insurers say they have long denied coverage for conditions that predate the issuing of a policy. In considering an applicant’s genes, they say, they are only doing the same kind of thing with more sophistication.
Fears of insurance problems have prompted many people at risk for inherited disorders like Huntington’s disease and polycystic kidney disease to avoid tests that would show whether they carry a gene defect. In some cases, people avoid the tests even if the knowledge might help them begin early treatment that would delay or prevent symptoms. The fear is especially intense among workers whose spouses and children rely on their insurance policies for coverage.
Danger of Losing Insurance
“If people are honest with insurers, they lose insurance or are not insurable,” said Dr. Nancy Wexler, president of the Hereditary Disease Foundation in Los Angeles.
“A lot of backdoor discrimination may have been unnoticed,” said Dr. Wexler, an associate professor of neuropsychology at Columbia University.
She heads the working group on ethical, legal and social issues of the Human Genome Initiative, a multibillion-dollar project to map every human gene and analyze its components. The project has set aside 3 percent of its annual budget for ethics, which now amounts to $3 million.
The money is being spent on scientific studies, public forums, academic seminars and to establish special commissions to examine ethical issues, Dr. Wexler said. One commission, to be named next month, will try to determine the extent of genetic discrimination in the insurance industry and to seek ways to stop it, she said.
Dr. Paul Billings, a medical ethicist at Pacific Presbyterian Medical Center in San Francisco who is collecting case reports of genetic discrimination from around the country, said he was not encouraged by what he had found.
Cases Are Cited
“We have evidence that the discrimination typically reserved for the severely and chronically disabled is being experienced by individuals labeled with genetic traits,” he said in a recent interview. He cited several examples:
*Although he had no sign of disease, a man in Whittier, Calif., was denied health insurance when he changed jobs because he had the gene for neurofibromatosis, an inherited disease in which patients may develop numerous soft tumors.
*A Texas man whose brother cannot get health insurance because of an inherited blood disorder has refused to be tested for it. The Texas man works for a small oil company and is afraid of losing his health insurance if he has the gene.
*A Massachusetts woman with polycystic disease, the inherited kidney disorder, was pregnant and wanted to have her fetus tested. Her health maintenance organization refused to pay for the prenatal test unless she stated whether she planned to use the information to decide whether to have an abortion. The woman refused. The health organization eventually backed down.
*In Kansas City, Mo., one woman underwent a blood screening test that indicated that her fetus might have an abnormally formed spinal cord. Her insurance company refused to pay for tests needed to confirm the finding on the ground that the fetus, which had an excellent chance of being perfectly normal, had a “pre-existing condition.”
*A young woman from Texas whose doctor noted in her records that her mother might have died of Huntington’s disease, an inherited degenerative brain disorder, was turned down for life and disability insurance even though her mother’s condition was never diagnosed.
Reversal of Decisions
In some cases, insurers reversed their decisions once patients threatened legal action or asked for written statements as to why they were refused coverage, Dr. Billings said. But many people accept the insurer’s decisions as irreversible, he said.
Insurance companies once set their rates using whole communities, said Dr. Thomas Murray, head of the program on medical ethics at Case Western Reserve University in Cleveland, who will head Dr. Wexler’s subcommittee on insurance issues. They knew how much it cost to insure everyone, including the sick and elderly, and set their rates accordingly, he said.
But today, Dr. Murray and others said, spiraling health care costs are forcing insurers to look for more and more ways to exclude people who are most likely to use medical services in the future. People with suspect genes are a natural target.
The problem is particularly acute for small companies, but large companies that run their own health insurance programs are in the same frame of mind, Dr. Billings said. “If employers can identify prospective workers who are not currently disabled but who may later develop illnesses, they can save themselves anticipated health insurance and other costs by refusing employment to the worker,” he said.
Dr. Billings said the Medical Information Bureau in Weston, Mass., kept medical records for 15 million Americans, most of the information gleaned from insurance applications and physician records on patients. The company has existed for decades, but with the advent of computers it has established elaborate files on millions of people.
Dr. Billings said the practice of doctors’ furnishing medical records to insurers, based on authorizations in insurance application forms, threatened the whole notion of patient-doctor confidentiality.
Insurance companies do not want to be in the business of genetic testing, said Donald B. White, a spokesman for the Health Insurance Association of America in Washington. But he said insurers should have access to genetic information so they could set fair rates for other policyholders.
He maintained that people with existing medical conditions should pay more for their coverage. But he said their conditions should not be used as an excuse to deny them health insurance.
The problem of being denied health insurance primarily affects people who are self-employed or work for small businesses, Mr. White said. “This is not an acceptable situation,” he said of that problem, “and we as an industry are moving to change it.” Backdrop of Ignorance
Such insurance issues are being raised against a backdrop of ignorance about genetic conditions, said Dr. Robert Murray, head of medical genetics at Howard University Medical School in Washington. Most people think genes are destiny, he said, and have no understanding of one of the most common genetic “conditions,” known as carrier status.
Carriers are people who have a defective gene but who are unaffected by the disease it conveys. A carrier cannot produce a child with the disease unless that person’s partner is also a carrier. Even then, only one in four of their children, on average, will have the disease.
Dr. Murray, an expert on sickle cell anemia, said carriers of that blood disorder were harshly discriminated against in the 1970’s after the military, schools and employers adopted screening tests. “They were treated like Typhoid Marys,” he said, even though they would never develop the disease.
Another force behind the moves toward genetic discrimination is the astonishing pace of new genetic discoveries. Last month, for example, scientists isolated a gene that is believed to be responsible for a wide variety of human cancers. A genetic test to identify children at high risk of developing juvenile onset diabetes is nearing commercial readiness.
Screening tests are being used for dozens of diseases, said Dr. Thomas Caskey, a leading medical geneticist at Baylor College of Medicine in Texas, and more are on the horizon.
Genetic discrimination could be averted through laws making genetic information confidential, Dr. Billings said. He said courts might rule that the anti-discrimination provisions of the newly passed Americans with Disabilities Act applied to people with genetic defects. A separate law restricting the use of genetic information in government financed institutions is to be introduced in Congress next year.
Until then, he said, scientists behind the Human Genome Initiative should declare a moratorium on the use of genetic tests in the workplace and for insurance.
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