As 1995 came to a close, two genetic privacy acts were introduced in Congress. One, sponsored by Oregon Republican Sen. Mark Hatfield, would eliminate all but forensic use of genetic information without written consent. Democratic Rep. Louise Slaughter of New York has introduced another bill on the House side that would specifically prohibit insurance companies from having access to or using personal genetic information. Given Congress' crowded schedule, neither bill is expected to reach the floor for debate until this fall or early next year unless championed by Speaker Newt Gingrich. To date, Gingrich has made no public comments on genetic privacy issues.
Dr. Thomas Murray of Case Western Reserve Medical School in Cleveland chaired the ELSI investigation on health insurance. He says that individuals, often at the encouragement of their physicians or genetic counselors, are already submitting to gene tests under false names in order to protect themselves from insurance discrimination. Providers who deal with breast cancer, Huntington's and other disorders for which gene tests are now available are encouraging their patients to pay for testing in cash in order to avoid a paper trail that might turn up in a computer database.
"Lest anybody think this is my imagination, I should say that people are literally knocking on my door almost every day with such stories," Murray said in a speech last year to the American Association for the Advancement of Science. In the absence of universal health-care coverage, he predicted, the insurance industry notion of "actuarial fairness" will virtually compel use of genetic information.
"Insurers don't want to write insurance on a house that's already burning," Murray explained. "Actuarial fairness says that people ought to pay into the system according to what they expect to receive. To not do so would be unfair to those whose houses aren't on fire."
In the medical context it is fraudulent to gain low-cost private health insurance by lying about a preexisting condition, such as heart disease or cancer. Today, says health insurance industry spokesman Harvie Raymond, no company is requiring genetic tests of its applicants or clients.
"But some are requesting information on those tests that have been performed," Raymond, of the Health Insurance Association of America, said. "They are universally concerned about being able to have results of genetic tests available, just as would be the case with any other medical information . . . The insurance industry would say that if that kind of information is taken off the table . . . a fair and equitable assessment of risk will not be able to be made, and fair pricing cannot be made."
More than half of all insured Americans are covered through their employers, so individual health risks are not raised directly by insurance providers. But increasingly employers are screening potential employees for health tendencies that might make their care costly in the future. Annas and Nelkin think that, without legal prohibition, genetic screening could one day be employment-based.
Raymond says that in the absence of a national health-care system there is no easy way to satisfy the needs of both societal justice and actuarial fairness.
"We don't really, as a nation, have a solution," he says.
The thorny issues of discrimination and the structure of American health care are the only issues that give Human Genome Project cheerleader Lee Hood pause. As humanity teeters on the brink of a dramatic biomedical revolution, he says, the entire effort hinges on the mundane realities of how people get health care, who pays for it and who subsidizes innovative medicine.
"Who's going to pay for the next step, taking all this genetic information and translating it into gene therapy or some other kind of medical benefit?" Hood asks. "It's a never-never land right now. We have great teaching hospitals shaking their heads and saying, 'Where are we supposed to go?' "
Revolutions are never easy. By the time Americans ring in the 21st century, most, if not all, of our essential DNA will have been sequenced. And if we haven't taken action before, we will then be collectively and individually compelled to confront the question of just what we want to do with our newfound knowledge.