Like father like son?

A secret lies millimeters beneath Austin Collins' skin.\nAs he talks, his hands fly in a storyteller's vision, every thought visible in his wide eyes. Despite his animation, he explains with even breath that one day this vivacity could screech to a halt.\nCollins made a choice 15 years ago not to know the results of a genetic test to discover if his body harbors the mutation that is crippling his father. Now, every day brings him closer to the probable onset of disease.\nCollins' smile, though, is unwavering. \n"Live for now," he says, hesitant to dispense advice but passionate about his mantra. \n"Maybe I have this, maybe I don't," Collins said. "Maybe my dad can't walk tomorrow, but he can today." \nThe 21-year-old IU senior knows firsthand the difficult position of those genetically predisposed to catastrophic disease. Collins' particular genetic situation centers around muscular dystrophy -- an incurable disease characterized by a progressive weakening and deterioration of muscles.\nBig decision, small boy\nAn only child, Collins has always been aware of his father's condition. When he was about 5 years old, the self-described "little adult" -- whom his parents judged capable of maturely evaluating decisions -- was presented with the facts: his father had MD, and while there is no official diagnosis for the problems that plagued his grandfather and his great-grandfather, the Collins men have a high probability for the disease. \n"I was given the option to find out for myself (through a genetic test)," Collins recalled. \nAnd he decided to take the test but refused to find out the results. \nMedical ethicist David Smith, former director of Bloomington's Poynter Center for the Study of Ethics and American Institutions, has spent years debating the ethics of genetic testing. Whether or not a child should be asked to make a decision of this magnitude divides experts, Smith said. \n"A child shouldn't be forced to know," he said, "but it depends on the situation." \nSmith and the majority of his colleagues agree a child shouldn't be tested until he or she reaches a certain understanding that usually comes with age.\n"I didn't want to end up living my life wondering, 'Is it gonna hit now?'" Collins said. \nThe only solution he saw was to claim the banner of ignorance, a decision he has not shied away from yet. Instead of worrying, the finance major has arranged his life around a subtle whisper of "just in case." He will graduate from college and be in the workforce before the illness could potentially take hold, and his career will be suited to the possibility of life in a wheelchair.\nFuture Discrimination\nFor Collins, knowledge is not always power.\n"For a lot of people, it would have involved a lot of soul-searching," he said. "But my family has been communicating about this disease for as long as I can remember." \nHis long arms clutch a couch cushion on his lap, but his ever-present smile is matter-of-fact. He said another reason why he doesn't care to know the test results is he's heard he wouldn't be able to find insurance if he was found to have the MD mutation.\nAccording to a study by the Council for Responsible Genetics, 42 states have some statute barring discrimination by insurance companies. However, the Council believes these measures are "incomplete and inconsistent."\nSome believe, however, that the risks of insurance discrimination are blown completely out of proportion. Sue Friedman is the founder of Facing Our Risk of Cancer Empowered, a national support group for women with an increased risk of breast cancer. Friedman acknowledges discrimination, but said she thinks it is not a sufficient excuse to avoid testing.\n"I find it scary that people choose not to get tested with that as the No. 1 reason," she said in a telephone interview. "Discrimination should be discussed, but shouldn't be the only issue."\nIn her research, Friedman has found less than a handful of documented cases of discrimination.\nSmith, of IU's Poynter Center, co-authored "Early Warning," a book on the ethics of genetic testing. He finds the potential for widespread discrimination more actual than Friedman, but said it is something that will become a non-issue as more is learned about diseases that are genetically influenced.\nCollins admits his knowledge on the subject is minimal, and that he would have to engage in his own research to find out whether discrimination is a valid objection to testing. He belly laughs and his slight frame shudders. It wouldn't make a difference, though -- his mind is made up.\nFriedman, a breast cancer survivor, warns against a snap decision to have a gene test.\n"Once you have that information, you can't ever take it back," she said.\nDiscovering destiny\nCollins' eyes shimmer when he talks about his father. His admiration is nearly palpable as he tells the story of his dad's retirement at 26 after a successful career in engineering, then enrolling in college for the first time. Right now, they are competing for grades -- father at the University of Southern Florida and son at IU. Collins is losing. \n"It's cheesy, but he keeps himself alive in his mind," Collins said. \nCollins doesn't seem to remember his father is in a wheelchair. He's proud of his dad's motor skills, which this particular brand of MD doesn't affect. He's proud his dad gave his mom French lessons for Valentine's Day and the two of them pretended they were in Paris for a week. He's proud, too, that he could one day be the man his father is. \nDeciding whether or not to have a genetic test presents endless dilemmas. But for Collins, the choice was clear. Though he was a child at the time, the voice in him that made the decision remains visible in his eyes today.\nThe walls of his apartment are lined with photos of cities he may never visit. \nThree flights of stairs that he might not be able to climb in a few short years lead to his door. His basketball-player physique might not appear on the courts one day. The secret just underneath his skin might not reveal itself, but if it does, Collins says he is ready for it.\n"I would hope anyone in my position would have the same outlook," he said. "For a person in my situation, it's the only one you can have. A negative outlook would be too much. Always worrying about what's going to hit is no kind of life at all."\n-- Contact staff writer Jenny Davis at jeedavis@indiana.edu.