Colman Chadam was in sixth grade when he was kicked out of a middle school in Palo Alto, California for his genetic makeup.
It may sound strange, like a problem that should be presented in a strange sci-fi novel, but it’s happening right now, just shy of the public eye.
Chadam had some genetic testing done back in 2000 after he underwent emergency surgery for a heart defect. The results showed that he has some of the genetic markers for cystic fibrosis—a rare, incurable, non-contagious disease that can pose a threat if two people with the disease are in close contact.
While applying for the school, Chadam’s parents disclosed the findings of the genetic testing in the medical form when applying to the school, despite knowing that the markers do not necessarily mean that he has the disease—just that’s he’s predisposed to developing it.
This information found its way through staff, and during a parent-teacher conference, one of the teachers let it slip to two parents—who have a set of twins that went to the school that did have cystic fibrosis—that Chadam had it.
Of course, the parents demanded that the student be removed from campus, and the school quickly complied.
"I was sad but at the same time I was mad because I understood that I hadn't done anything wrong," Colman told TODAY at the time. "It feels like I'm being bullied in a way that is not right."
Chadam’s parents weren’t having it—they filed a lawsuit against the school, claiming that he was unfairly removed due to genetic discrimination.
During the flurry of lawyers and press attention, Chadam was allowed to return to school after missing a few weeks.
"After careful consideration, which included further consultation with a medical expert, the students are attending the same school, and the [district] is following the recommendation of implementing cystic fibrosis cross-infection protocols," Associate Superintendent Charles Young told the Chronicle.
This case is one that we may be seeing much more of in the near future—with genetic testing becoming incredibly cheap, it can easily become a tool that is used against people time and time again. As time has proven again and again, while technology revs up and goes into hyper-drive, law will always seem to trail behind at a snail’s pace.
According to Wired, “To experts in genetics law, four letters are conspicuously missing from the legal wrangling: GINA, or the federal Genetic Information Nondiscrimination Act of 2008. GINA bars genetic discrimination in just two cases: employment or health insurance. That obviously doesn’t include getting education and housing and plenty of other situations where discrimination might happen.”
“This case is a useful reminder about the limitations of the federal statute,” Jennifer Wagner, a lawyer and contributing editor to Genomics Law Report, explains.
In other words, Chadam’s case doesn’t actually rely on GINA to move forward, but instead with the Assistant District Attorney who will decide if this case should move forward, despite not having a written law to back it up.
“As we do more screening earlier and earlier in life," Michelle Lewis, a pediatrician, attorney, and research scholar at the Johns Hopkins Berman Institute of Bioethics, explains to Wired, "there’s potential for misuse of information in ways that are harmful, that could potentially discourage parents from seeking genetic testing even if it’s medically indicated."
There's hope yet, though. While Cadam's original case was dismissed, his parents appealed the case to the federal Ninth Circuit court in January. Based on a brief The Departments of Justice and Education, it looks as if this case has drawn federal interest—which means we're one step closer to ensuring that genetic discrimination doesn't go unchecked.
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