Op-Ed: Nice to meet you, GINA. I've heard so much about you
May 9th, 2008
Misha Angrist and Bob Cook-Deegan
This Op-Ed appeared in the May 7, 2008 edition of The Oakland Tribune (Oakland, Calif.) and the May 13, 2008 edition of The News & Observer (Raleigh, N.C.).
After A 13-year, off-again-on-again courtship, Congress has finally made an honest woman out of GINA.
Thanks to all-but-unanimous Congressional passage of the Genetic Information Nondiscrimination Act, aka GINA, Americans will soon be protected from "genetic discrimination" by their employers and health insurers. President Bush is expected to sign the bill any day now.
It's about time. GINA was first introduced in 1995 and has made an appearance in every Congress since. A broad range of policymakers, physicians, patient activists, legal scholars and the public agree that the legislation is a good idea.
So why was she only a bridesmaid until now? GINA opponents — mainly business lobbyists with some help from Sen. Tom "Dr. No" Coburn, R-Okla. — argued that the bill would result in an avalanche of costly litigation. After all, they contended, should an airline company be forced to hire a pilot with an inherited seizure disorder? A fair question — the courts may yet have to wrangle with it and others like it.
The other persistent argument against GINA was that the law was unnecessary. Documented cases of genetic discrimination are rare, largely because few Americans participate in health plans in which employers provide selective coverage based on their employees' medical status, genetic or otherwise. Moreover, most states have some legal protections against genetic discrimination in the workplace and for insurance coverage.
All of that may be true, but all of it is trumped by perception: people fear genetic discrimination, which is what makes this new law so historic. In a recent survey, the Genetics and Public Policy Center found that 92 percent of respondents worried that genetic tests could be used in ways that are harmful to those getting tested. Only one in four said they would trust insurers with access to their genetic test results. Just one in six would trust employers.
The consequences of such fear, whether well-founded or not, could be grave. If people at risk for inherited diseases are unwilling to undergo genetic testing, they forego information of potentially immense importance to their lives. And if that same mistrust prevents citizens from participating in genetic and genomic research, the process by which our society develops new medicines and cures will suffer. Therefore, if GINA serves as nothing more than a reassuring symbol to a skittish public, it's still well worth the price of the occasional lawsuit.
That's not to say that the law will be a cure-all. It won't be. General Motors now spends more on employee health care than it does on steel. Starbucks spends more on health coverage than it does on coffee beans. With employers in our country spending so massively on health care, some will inevitably be tempted to identify and avoid hiring people whose genetic makeup put them at greater risk for costly chronic diseases. Witness the 2005 revelation that Wal-Mart was secretly contemplating a plan to save on health care by dissuading unhealthy or obese people from applying to work at its stores.
Or take the two most infamous cases of genetic discrimination: clandestine genetic testing of employees by Burlington Northern Railroad and Lawrence Berkeley Laboratory. And last year, a disturbing report revealed multiple cases of the U.S. military denying benefits to service men and women born with congenital disorders, a policy the military has recently modified. Our hope is that GINA will end such behavior across the board.
GINA's other big limitation is its scope. One of the most likely places for genetic discrimination is in long-term care insurance. One study suggests that people at high risk for Alzheimer's disease are more likely to seek such insurance, and it is easy to imagine why. Someone can take a genetic test and discover they are three, or in rare cases, 16 times more likely than most to develop Alzheimer's.
Long-term care insurance is a private, voluntary market and neither GINA nor the patchwork of state genetic discrimination laws says anything about it. As things now stand, long-term care insurers — most of whom, it should be said, are not making money hand over fist — are free to decline coverage to such high-risk persons.
But that's a legal struggle for another day. For now, we should applaud Congress and hope that the president has his pen ready. GINA has arrived and she still looks pretty good, even after all these years.