We all have one -- but the question is, do we want to know what it says?
Since she was 21 years old, Eileen Kogut has known that something bad runs in her family. In 1978, her brother Joe, then just 15, collapsed and died at the dinner table while he was horsing around with his older brother Mark. Mark, fearing that he might have a bad heart like his brother, began to work out daily. He was on a treadmill at the Lansdowne, Pennsylvania, YMCA when he died in 1998.
Last year, Kogut, now 53, learned that she carries the same gene that her late brothers did -- one for a heart disease called hypertrophic cardiomyopathy, or HCM. The illness is difficult to identify but can be treated once it is diagnosed. Kogut then wrestled with whether or not to get her children -- Jimmy, 22; Kyle, 19; Connor, 16; and Kathleen, 12 -- genetically tested, knowing that a positive result could lead health insurance companies to brand them with preexisting conditions for the rest of their lives, even if they never have exhibited symptoms of the disease. In March of last year, Kogut crossed her fingers, prayed that she did not pass her HCM gene to her kids, and opted for the tests. All but Kyle came back positive.
Kogut was devastated by the results. But the following month brought a bit of good news. After 14 years of working its way through Congress in various forms, the Genetic Information Nondiscrimination Act (GINA) passed, barring employers and health insurers from discriminating based on an individual’s biological blueprint. (Life insurance, however, is not included in the law.) “Thank God for it,” Kogut says. “If it hadn’t passed, we would have a huge problem right now.” When the federal law takes full effect this November, it will throw open the door for people who want to take a literal look inside themselves -- and not only for those who would probe for diseases but also for anyone interested in what some doctors call “vanity testing,” genetic screening just for kicks.