Just over a year ago, advocates celebrated the signing of a landmark piece of legislation barring health insurers and employers from discriminating against people on the basis of their genetic information.

Partial coverage: Bush signs GINA into law Credit: Jason Reed/Reuters

The Genetic Information Nondiscrimination Act (GINA), signed into law by US President George W. Bush on 21 May 2008, was the product of more than a decade of efforts to pass it on Capitol Hill. During those years, the sequencing of the human genome and an accompanying groundswell of genetic tests for diseases from breast cancer to Alzheimer's disease eventually pushed support for the legislation past the tipping point.

Now, experts are pointing out that GINA, for all it accomplished, left untouched several insurance markets that may be important for people contemplating getting genetic tests—or already holding the results of such tests. Long-term care insurance, disability insurance and life insurance are not addressed by GINA. This means that if, for instance, a 50-year-old individual has just learned that he or she carries a gene boosting the chances of developing Alzheimer's disease, there is nothing in federal law to prevent long-term care, disability or life insurers from refusing coverage on the basis of a positive test.

The issues raised aren't just theoretical. In 2005, Robert Green of Boston University and colleagues published a study of 148 people who received genetic tests indicating whether they were at increased risk for developing Alzheimer's disease (Health Aff. 24, 483–490; 2005). Those who were informed they had tested positive were, in the following year, nearly six times as likely to buy long-term care insurance as control subjects who didn't learn their test results.

“Serious disease has such an impact on families. And insurance products like life and long-term care are there, one hopes, to alleviate that impact. But in most states today you can be eliminated from the possibility of obtaining those simply because a disease with a known genetic basis runs in your family,” says Susannah Baruch, a policy attorney with Generations Ahead, an Oakland, California–based nonprofit organization focused on genetic technologies.

Insurers say that Congress left life insurance and disability insurance out when they crafted GINA because they are fundamentally different from health insurance. “Life insurers' ability to fully and fairly underwrite life insurance, disability income insurance and long-term care insurance is crucial to their ability to treat their existing and prospective customers fairly and to classify risks in a financially prudent manner,” says Steven Brostoff, a spokesperson for the American Council of Life Insurers.

In the absence of a federal law, 16 states have adopted legislation addressing the use of genetic information in life insurance, 16 have done so for disability insurance and ten have tackled long-term care insurance.

“While GINA did lots of good things, there are other areas that have been left unattended,” says Kathy Hudson, director of the Washington, DC–based Genetics and Public Policy Center of Johns Hopkins University.