In an opinion piece appearing in the New York Times, Louise Aronson implores lawmakers to not allow discrimination against "mutants" like her.
Aronson, a geriatrician at the University of California, San Francisco, says that she and other members of her family have a chromosomal defect that places them at increased risk of developing cancer. She first learned of her status in the 1990s and says that she and her doctors had to "do some fancy footwork in medical records and insurance claims" so that she could get the cancer screenings she needed without revealing information that could have made her uninsurable and, possibly, unemployable. She adds that she didn't "relax fully" until the Genetic Information Nondiscrimination Act was signed in 2008.
But now the Preserving Employee Wellness Programs Act, if passed, could roll back those protections, Aronson says. The act, HR 1313, would make workplace wellness programs exempt from GINA. In addition, employers would be able to fine employees who decline to take part in voluntary wellness programs.
"If Congress passes this law, it will be opening the door to state-sanctioned health discrimination," Aronson argues. "And if employers can get and act upon workers' private health information, everyone will be in trouble, not just mutants like me."