(Image via AP Photo/Stephen Minger, King’s College University/ho)
When Colman Chadam was born in 2000, he underwent extra medical tests after a congenital heart issue was discovered. Doctors learned that the infant carried genetic markers associated with cystic fibrosis, but he never went on to develop the disease. In fact, that test was the boy’s only interaction with it—until 2012, when he was kicked out of middle school. His parents had offered up the information when they enrolled him at a school in Palo Alto, Calif., and somehow teachers found out, reports Wired.
Those teachers allegedly told parents of two kids with cystic fibrosis during a parent-teacher conference, and suddenly those parents were demanding Colman’s removal because their own kids would be more vulnerable to infection. (Per the Cystic Fibrosis Foundation, people with CF are known to be able to spread “certain germs among others with the disease.”)
It all played out a bit like the medical version of thought crime—where potential (or in this case predisposition) is punished—but within a few weeks the school let Colman return, thanks to the family obtaining an injunctive relief; now the Chadams have relocated altogether.
Still, their lawsuit accusing the district of violating both the Americans With Disabilities Act and privacy rights is still making its way through the courts, as they appealed to the US 9th Circuit Court of Appeals last month and got some support from the DoJ and Department of Education, per this amicus curiae brief.
“The family would like a definitive and unequivocal statement from the Ninth Circuit that you can’t just do this to people based on genetic markers alone,” their attorney tells BuzzFeed. The implications could be broad, not only regarding how genetic information can be used, but who gets to make decisions based on the resulting “real or imagined” safety concerns, he adds. (Also, DNA testing can sometimes be too good.)
By Elizabeth Armstrong Moore