National Nurses United

GINA:1 RH Opener 2/28/09 12:44 AM Page 16 beginning stages. She hasn't ruled out eventually having prophylactic surgery to remove her breasts, eliminating almost all of the tissue at risk for developing breast cancer. "My body is under heavy surveillance," she said. "I'm watched in a way I never would have been if I hadn't had the test." ven as genetic tests were being developed to help people like Rudnick monitor their health, observers were noticing some distressing trends: Clinical trials that required test subjects to have their genes sequenced refused to participate, fearing their health insurers would drop them. Worried patients began to pay for the tests out of pocket or through risky mail-order companies to keep the results off the books. They hesitated to let their doctors know their results and couldn't explain to their health insurers why they needed more regular monitoring. Before GINA, some piecemeal protections against genetic discrimination did exist. The Health Insurance Portability and Accountability Act of 1996 included genetic privacy protections for people covered under group health plans. And 47 states have some form of genetic discrimination law, ranging from prohibiting employers from having access to their workers' genetic test results to prohibiting medical underwriters from using genetic test results to raise premiums, deny coverage, or drop someone from a plan. But up until now, the law has been spotty at best, and none of them have been tested with a genetic discrimination case resulting in a court decision. In a 2001 suit between the U.S. Equal Employment Opportunity Commission and Burlington Northern Santa Fe Railroad Company, union members who submitted workers compensation claims for carpal tunnel syndrome complained that the company was requiring them to submit to a blood test—a test that unbeknownst to them was being used to determine if any of the employees had a genetic predisposition for the condition. When one worker refused to submit to the test, he claimed the company threatened to fire him. Eventually the case settled out of court, and Burlington Northern agreed to eliminate genetic testing from its practices. "Regardless of its outcome, this case serves as a beacon illuminating a troubling future," warned Michael Stein, then an assistant law professor at the College of William and Mary and now director of the Harvard University Project on Disability, in a journal article on genetic discrimination. "It warns people that they may have to absorb liability for injuries to themselves if [employers] can show that they are less than normally resistant to being injured." Then rumors started swirling. Had anyone lost their health insurance because of a genetic test? None of the genetic counselors, geneticists, or experts at the National Institutes of Health who talked to Registered Nurse had witnessed any genetic discrimination. But the Council for Responsible Genetics claims it has documented more than 500 cases of such discrimination. It certainly is possible, said Georgetown's Pollitz. Her department surveyed chief medical underwriters at a number of health insurers, asking them what they would do if they were presented with a potential customer who had tested positive for a genetic abnormality related to a medical condition. "Several said they wouldn't take the person with genetic test 16 REGISTERED NURSE results," she said. "Others said they'd offer coverage but charge more, or permanently exclude from coverage the condition for which they were genetically predisposed. So we documented that it could happen." And so, the shadow file in White-Perpich's office was born. It's no wonder, then, that when Rudnick decided to get tested seven years ago, she did so anonymously, paying out-of-pocket the several hundred dollars it cost to extract her DNA and sequence it. "I was terrified I'd be dropped by my insurance," recalled Rudnick. "I was so afraid my insurance company would say, 'You're uninsurable' that I kept it out of all my medical records and had to really fight to get the preventive care I needed. I was always saying, 'Please don't tape-record our discussion.' I filled out health forms and never put anything down about it. The irony is that when you have this [genetic] information, nothing is more important than health insurance." Indeed, a cottage industry of direct-to-consumer mail-order genetic tests has sprung up to cater to that fear. The industry, regulated by the Federal Trade Commission, has been cited a few times for offering misleading and inappropriate testing. For instance, some companies promise to send you personalized skincare, vitamin, and other "nutrigenomic" healthcare guidance based on your genetic results. The FTC warns consumers that mail-order genetic tests "aren't a substitute for traditional healthcare" because results can be difficult to analyze. ware of the problems, geneticists and privacy advocates began campaigning for GINA 13 years ago. That's the same length of time it took to sequence the entire human genome. So when GINA passed, Rudnick found herself planted in front of C-SPAN, watching, and crying. "I was thinking of all the people who didn't get tested because they were afraid of losing their job or insurance and crying," she said. "That barrier just isn't there anymore." GINA has some promising characteristics: It extends genetic discrimination coverage to individual health insurance. It creates a federal mandate of genetic privacy over health insurance and employment. It does not, however, prevent health insurers from asking about your family history on insurance applications. It doesn't prevent insurers from dropping patients or raising their premium once a genetic illness begins to manifest. And the law doesn't cover disability or life insurance. One of the primary things it does do is consolidate and strengthen state laws. Many contain language that make them all but worthless, said M.K. Holohan Quattrocchi, senior health policy analyst at the National Human Genome Research Institute of the National Institutes of Health. For instance, some laws exclude chemical tests from coverage—but all genetic tests are chemical tests. Not only does GINA, which is set to fully go into effect in November, standardize the laws, it also sets a higher standard for state regulation than any previous law, said Pollitz. "The standard GINA sets out for states is that any time the state fails to enact or enforce the law, the federal government can come in and enforce it," she said. "It's not 'close enough.' It's really, 'You better adopt this as we wrote it.'" But the primary breakthrough of this law is its clarity on the point of genetic discrimination. Health insurers and employers W W W. C A L N U R S E S . O R G JANUARY | FEBRUARY 2009

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