nsurers are refusing to cover Americans whose DNA reveals health risks. It’s perfectly legal.
November 12, 2024, 7:30 AM ET
Produced by ElevenLabs and News Over Audio (NOA) using AI narration.
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The news came four years ago, at the end of a casual phone call. Bill’s family had always thought it was a freak coincidence that his father and grandfather both had ALS. But at the end of a catch-up, Bill’s brother revealed that he had a diagnosis too. The familial trend, it turned out, was linked to a genetic mutation. That meant Bill might also be at risk for the disease.
An ALS specialist ordered Bill a DNA test. While he waited for results, he applied for long-term-care insurance. If he ever developed ALS, Bill told me, he wanted to ensure that the care he would need as his nerve cells died and muscles atrophied wouldn’t strain the family finances. When Bill found out he had the mutation, he shared the news with his insurance agent, who dealt him another blow: “I don’t expect you to be approved,” he remembers her saying.
Bill doesn’t have ALS. He’s a healthy 60-year-old man who spends his weekends building his dream home by hand. A recent study of mutations like his suggests that his genetics increase his chances of developing ALS by about 25 percent, on average. Most ALS cases aren’t genetic at all. And yet, Bill felt like he was being treated as if he was already sick. (Bill asked to be identified by his first name only, because he hasn’t disclosed his situation to his employer and worried about facing blowback at work too.)
