The dark side of genetic testing is that information affecting your future health is as valuable to insurers as it is to doctors, but for very different--and disturbing--reasons. Knowing that you are susceptible to breast cancer or diabetes would be invaluable to an HMO looking for ways to screen out riskier candidates and thus keep costs down--and profits up.
Insurers say it won't happen. More than 30 states have passed laws prohibiting genetic tests of applicants for jobs or insurance, according to the Council for Responsible Genetics. At least 70 more genetic-discrimination bills are pending in 24 states. Twelve are before the U.S. Congress, and the Health Insurance Portability and Accountability Act of 1996 forbids health insurers to deny insurance based on pre-existing genetic conditions (although raising premiums when renewing insurance is O.K. in some states). "The fears out there are just not reality," says Dean Rosen, senior vice president of policy for the Health Insurance Association of America in Washington, which represents more than 250 health-insurance companies.
The fears, however, persist. Genetic testing is moving inexorably toward becoming standard practice, and it's doubtful that legislation alone can protect against its misuse. The law may prohibit insurers from ordering genetic tests, for example, but in some states nothing prevents them from using tests that are already part of your medical record. "Apply for insurance today, get tested tomorrow," advises a health-insurance executive, only half in jest.
Insurers make their money by spreading risk over as large a population as they can, calculating that the healthy will pay for the sick--and then some. Unless state law prohibits, they can discriminate--legally--by raising premiums for someone who, for example, has suffered a heart attack and is renewing an individual or small-group policy. Access to a growing body of predictive genetic information would permit insurers to weed out further the riskiest, hence costliest clients or at least make them pay more for their coverage even before illness strikes. Little wonder that insurers would like to know, as Rosen puts it, "as much about your medical history as you know."
As testing becomes more sophisticated, coverage based on genetic risks may become untenable, since everyone is likely to be at risk for one disease or another. Until then, says Dr. Paul Billings, a geneticist and medical officer with the Veterans Health Administration, medical insurance must be readily available to all. "I would hope," he says, "that by the end of the century, parceling out a social benefit like insurance based on genetics will be seen as just not appropriate."
Five years ago, most Americans rejected the Clinton Administration's proposals for a larger government role in managing health insurance. But if genetic testing starts to have real impact on their health-care coverage, they could have second thoughts, and may seek refuge in some form of nationalized health insurance. In that case, it will be up to the insurance industry to offer a free-market alternative that Americans find palatable.