Parents of middle school kids have plenty to worry about, what with the onset of puberty and the decrease in common sense that usually accompanies it. But one parent of a middle school kid in Palo Alto, CA, recently added a whole new log on their bonfire of worry: James Chadam’s son Colman was kicked out of sixth grade because he carries the genetic marker for cystic fibrosis.
If that sounds bonkers, that’s because it is. To begin with, cystic fibrosis isn’t contagious, so why would having it be grounds for removing a kid from school? And, just to reiterate, Colman doesn’t have cystic fibrosis. He carries an inactive gene associated with it — just like one in 29 people with European ancestors do. The explanation involves another parent in the school, whose own kids have the disease. It’s standard practice to limit the exposure of kids with cystic fibrosis to one another, because they can pass potentially fatal infections between each other, so when this parent learned about Colman’s cystic fibroshish DNA, she demanded he be removed from school. The school complied and Chadam sued, claiming a violation of the Americans With Disabilities Act and Colman’s First Amendment right to privacy. But the real charge, as Wired‘s Sarah Zhang explains, is “genetic discrimination.”
Chadam’s suit was ultimately dismissed and Colman allowed to return to school, but the family has appealed the dismissal to the U.S. Ninth Circuit, because they see the larger picture. With genetic testing becoming more affordable and accessible by the year, the kinds of personal information people will have to protect in the near future goes way beyond credit card numbers and browser history. If a kid can be removed from school based on a snippet of DNA that indicates a potential health problem, the repercussions for students — and employees — everywhere are massive. The federal government even thinks so: the Departments Of Education and Justice have both filed briefs in support of the Chadam’s case.
Hopefully caution and common sense prevail because, as previously noted, parents of middle school kids have enough to worry about.