thescientist | It 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 acts of insurance discrimination occurred, for instance—the self-reported results shed some anecdotal light on what Sanatani said he had been observing in his medical practice.
Thirty-nine percent of the respondents with a SADS diagnosis or an affected family member reported an increase in their existing insurance premiums. Just more than half said they applied for insurance only after receiving the diagnosis; 60 percent of these respondents indicated that they were rejected by insurers.
Before initiating the study, “a lot of families came to us with the notion that having their kids tested would impact their health coverage, but whenever we went to the literature to see if we could substantiate this or refute this, we couldn’t find much,” Sanatani told The Scientist. Yet, after examining the data, the team concluded that “a large percentage of the respondents had experienced some form of insurance rejection,” he said, “with most of them being rejected on the basis of the diagnosis.”
The results were surprising because, according to the researchers, most of the survey respondents were from the United States, where the 2008 Genetic Information Non-Discrimination Act (GINA) should have protected them.