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GINA:1 RH Opener 2/28/09 12:44 AM Page 14 hen blood samples sent from the University of Chicago Medical Center arrive at a clinical genetic testing laboratory, geneticists spend weeks carefully extracting the blood's most elemental components: wispy strings of DNA. Isolated using heat and an alkaline and processed through a machine designed to isolate just the right section of DNA, the results come out as little pink, red, green, and blue spikes on a slip of paper. This red peak may mean a mutation of the gene that governs blood clotting. That green one may mean a genetic predisposition to breast cancer. Whatever the case, the geneticist analyzes them all against a standard for that part of the DNA helix, creates a report on the results, and sends it back to the University of Chicago, where it might land in the hands of Melody White-Perpich. White-Perpich, a genetic counselor at the Cancer Risk Clinic at the University of Chicago Medical Center, will review the findings and then, instead of filing them down in the basement where patients' regular medical records are kept, she will head toward a special cabinet in her office. There, she'll slip the document into a separate, very thick folder. For 10 years, that file has housed her patients' genetic profiles and, by keeping that data outside of their regular charts, protected the hun- W 14 REGISTERED NURSE dreds who pass through her doors every year from genetic discrimination by insurers and employers. It is, she says, a very important file—and a very important part of her job is to defend the information within it. "We call that file a shadow file," said White-Perpich. "Though we are not aware of any of our patients experiencing genetic discrimination, we've been conscientious about protecting our patients." Only after she and her patient discuss the ramifications of the genetic results will the patient make the choice: Sign a medical release form, add that slip of paper to her official medical files, and report the results to her other healthcare providers so they can begin a specialized regimen of observation, medication, testing, or prophylactic surgery; or return that paper to the shadow file to protect it—and the patient—from the prying eyes of medical underwriters who might use that information against the patient by, for example, excluding coverage for a disease the tests show she has a propensity to develop. White-Perpich, however, foresees a day in the not-so-distant future when shadow files may disappear. It's not that medical underwriting has stopped. Indeed, the healthcare industry continues to use people's illnesses as an excuse to discontinue coverage or raise premiums. But starting this year in W W W. C A L N U R S E S . O R G JANUARY | FEBRUARY 2009