Jeffrey Johnson is a legal writer with a focus on personal injury. He has worked on personal injury and sovereign immunity litigation in addition to experience in family, estate, and criminal law. He earned a J.D. from the University of Baltimore and has worked in legal offices and non-profits in Maryland, Texas, and North Carolina. He has also earned an MFA in screenwriting from Chapman Univer...

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UPDATED: Sep 15, 2020

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By 2014, the question will be moot as no insurance company can deny coverage for any pre-existing condition. Right now you are probably still protected: most States don’t allow insurance carriers to ask questions regarding genetic testing on their medical questions, assuming you chose to get the test without any medical necessity (or signs, symptoms). The world of medical insurance is an ever changing landscape, so you might best protect your son by getting him his own individual health insurance coverage through the largest, best-respected insurer in your State. Answer all questions truthfully, but if you see one asking about genetic testing, choose another carrier instead of completing that application. Make certain his doctors do not list the results of the genetic test in their notes, either: a carrier who requests doctor’s records can deny coverage based upon what they find when the read the records (until 2014). Once he has his own policy, he is better protected than the uncertainty of an employer’s decision in future group insurance options. You might also take this opportunity to investigate a whole life policy, especially if you expect symptoms to appear in young adulthood. Again, be honest on the application but do not volunteer medical history if the questionnaire does not ask for it and if he has shown no signs or symptoms of the disease. Also be aware that information found in the course of a life application is reported to the Medical Information Bureau and stays for seven years, so verify what the physician has in notes before you proceed.