Genetic Privacy Raises Questions About Insurers

A federal law designed to prevent employers and health insurers from discriminating against an individual based on their genetic predisposition to disease took effect late last month, signaling a new era where intermingling genetic advances and privacy concerns create new challenges in health care.

But left out of the federal Genetic Information Nondiscrimination Act, commonly known as GINA, were privacy protections for individuals seeking long-term care, disability and life insurance coverage.

Each of those areas was left up to the individual states. At least 10 states regulate the use of genetic information in long-term care insurance. But in California, privacy protections were left to expire by lawmakers in January 2008.

Mark Billingsley, spokesman for state insurance commissioner Steve Poizner, said in an e-mail that there “appears to be a giant loophole” in California’s insurance code regarding long-term care insurance and genetic privacy protections. He said he couldn’t identify a single provision in the state code that would preclude a private insurer from requesting such a test for underwriting purposes.

Brian Liang, a law professor at California Western School of Law who specializes in health law and policy, said the missing protections could lead long-term care insurers to deny coverage based on findings of a genetic test, without a consumer ever knowing they peeked at their results.

Although genetic testing companies like Mountain View-based 23andMe Inc. and Navigenics Inc. of Foster City do not assign individually identifiable information to their test results, Liang said any findings shared by an individual with their doctor and entered into their medical record would be accessible by long-term care insurers.

“Unfortunately, because the long-term care insurance industry and disability as well as life insurance were individually oriented, the focus was employer-based,” he said. “Because of that disconnect … this is why we ended up with a big hole we could drive any type of exceptions through.”

Demand For Long-Term Care

The implications have the ability to affect millions of aging Americans seeking long-term care insurance, which protects against the cost of services including medical care, psychological support or assistance with daily living.

A study by the U.S. Department of Health and Human Services found that people who reach age 65 have a 40 percent chance of entering a nursing home. About 10 percent of the people who enter a nursing home will stay there five years or more.

And Medicare estimates that by 2020, 12 million Americans will need long-term care.

Rich Kupetsky, vice president of long-term care insurance sales for La Jolla-based Pacific Southwest Financial, said that in his 21 years of business he’s never come across an application that has denied someone insurance or raised their premiums based on their genetic propensity to disease.

He added, though, that the information would likely be an area of interest for underwriters moving forward.

“If it were included at the doctor’s level, the insurance carriers would certainly have to look at that data and determine whether it’s going to affect premiums in the future,” he said.

Advocates of personalized medicine argue that, despite the limitations, GINA’s passage was a major step forward in U.S. policy regarding privacy protections of genetic information.

“We think the bill goes a long way to removing a boulder from the train tracks that will lead to a more personalized approach to medicine,” said Edward Abrahams, executive director of the Washington, D.C.-based Personalized Medicine Coalition, an education and advocacy nonprofit.

Abrahams noted, though, that health insurance reforms could dramatically change the landscape in terms of genetic privacy protections moving forward. Just last week, lawmakers were debating long-term care programs in the Senate’s health care bill.

“The insurance companies said they would begin to cover preexisting conditions,” he said. “That’s a much bigger universe than genetic predisposition.”