FLICKR, SNRE LABIt wouldn’t be the first time Shubhayan Sanatani wrote one of these letters, nor would it be the last. A child under his care at the British Columbia Children’s Hospital had been unable to obtain health insurance ever since testing positive in a genetic screen for a sudden arrhythmia death syndrome (SADS). Whenever this happened to one of his patients, Sanatani, a pediatric cardiologist, would write a letter to the insurance company in question, explaining that the positive test did not necessarily indicate a significant increase in risk for a cardiac event.
“We haven’t had much to offer, other than to write letters of support saying the child has an extremely low risk of an event,” Sanatani told The Scientist. “All we can do, really, is advocate for our patients. I’m not confident about how successful we are.”
How often do parents discover that a genetic screening result has rendered their children uninsurable, or subject to prohibitively high insurance premiums? Sanatani resolved to find out. In a January 24 study in Circulation: Cardiovascular Genetics, Sanatani and colleagues conducted informal interviews of 202 people across North America who had either a SADS diagnosis (which, in 73 percent of cases, involved a genetic screen) or an affected family member. Despite its limitations—the survey did not ask when the alleged ...
