Back in 2012, 11-year-old Colman Chadam was informed by Jordan Middle School that he would have to transfer to a completely different school. Now, Chadam was by all means an excellent student by academic standards, so why would his school choose to send him away? Because of his own genes, that’s why.
The sixth grader carried “genetic markers” for cystic fibrosis, a genetic disorder that affects the lungs (it can also affect the pancreas, kidneys, intestine, and liver) that ranges in degrees according to its host’s symptoms. One who has cystic fibrosis will experience difficulty breathing and quite often begin coughing up mucus.
Chadam was singled out by the school after the parents of two of Chadam’s fellow classmates, a pair of brothers who suffer from the condition itself, brought up concerns about Chadam’s attendance. This presented a problem because people with cystic fibrosis can be put in danger whenever they come in contact with another person who has it.
“I was sad but at the same time I was mad because I understood that I hadn’t done anything wrong,” Colman told TODAY. “It feels like I’m being bullied in a way that is not right.”
There are several laws put into place that protect people against genetic discrimination so they won’t be treated any differently by their employers. Fear is what tends to set people off in cases like Chadam’s and others. One federal law in particular is supposed to heighten the protection: the Genetic Information Nondiscrimination Act (GINA).
GINA is split into two parts – Title I, which basically prohibits any form of genetic discrimination in health insurance (so if you don’t have the disorder yet, you can’t be held accountable on the mere fact that you MIGHT get it) and Title II which makes it illegal for employers to use a person’s genetic information against them. But there are rather wide gaps in these laws. For example, this act doesn’t apply when an employer has less than 15 employees. In either of these titles, nothing about schools is mentioned, which puts Chadam in an awkward place.
Chadam was born during a time when DNA analysis of newborn babies was still relatively unheard of, but he suffered from a congenital heart problem that drove his doctors to run some other tests, leading them to discover that he carried some markers that were closely associated with the disease. His parents ended up disclosing Chadam’s medical information when enrolling him into school.
Word got out, and the parents of the brothers with cystic fibrosis found out via a parent-teacher conference and demanded that Chadam be removed after only two weeks of school.
“Why take a child who’s new to the district, who’s just making friends, who’s just building a support network, who’s just getting to know his teachers, who’s been well his whole life… why stigmatize him?” Jaimy Chadam, Colman’s father, told TODAY.
The school eventually allowed the young boy to return to school after missing a few weeks – which can be considered a lifetime in one’s young education.
“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,” the family’s attorney Stephen Jaffe told BuzzFeed. “The more people that get genetic testing done, either for medical reasons or recreationally, the possibility this stuff gets out… it’s not a great leap to be concerned about what happens to this information.”
This has the chance to be a landmark legal case if the middle school is held accountable. The case was originally dismissed in 2013 by the district court in Palo Alto, Calif., but an appeal has recently been filed and if successful, the case could break new ground in terms of how people’s genetic information can be used.
Even the Departments of Justice and Education have stepped in on behalf of the Chadam family and written a brief suggesting that the federal government take an interest in the case itself.
Jaffe argued that this particular case could lead to more broader implications.
“Affirming the district court’s ruling in this case will open a wide gap in the wall of privacy protection the law presently affords personal genetic information,” he said. “It will implicitly permit unqualified non-medical persons such as school districts, insurance companies and employers to base life-altering decision on private genetic information. It will cause the public to hesitate or refuse to get genetically screened when to do so may be in their best interests or would assist medical research.”