To find a society where a student is forced to leave school because of his genes, you might think you’d need to watch “Gattaca” or pick up a dystopian novel.
As it turns out, you wouldn’t need to immerse yourself in fiction. This exact scenario occurred at a middle school in Palo Alto, California.
And unless something is done to strengthen our legal protections, it could be just the tip of the iceberg. Any of us who learns about our DNA through direct-to-consumer tests like 23andMe, newborn genetic testing or gene sequencing at the doctor’s office could be genetically discriminated against too.
School Boots Out Sixth Grader Over Predisposition to Disease
In 2012, Jordan Middle School tried to force 11-year-old Colman Chadam to transfer to another school, not because he did something wrong or had a contagious disease, but because of his DNA.
Colman had been born with a heart condition. To try to figure out what was wrong, the doctors had performed a lot of genetic tests, one of which found an increased risk for cystic fibrosis, a very severe genetic condition.
Twelve years later, Colman’s parents, as a simple precaution, filled out a medical form telling the school about his genetic results even though he had none of the symptoms of CF. He did not have the disease.
But the student population at Jordan Middle School included two siblings who had CF. Because there is a high risk for people with the disease to give each other lung infections, it is important to always keep them at least 6 feet away from each other.
After teachers at the school told the parents of these students about Colman’s genetics, the district ordered Colman’s transfer, despite the fact that he did not have the disease.
His parents took the district to court. After Colman missed 11 days of school, a settlement was reached to let him return.
But the Chadams filed a suit in federal court, alleging unlawful disclosure of Colman’s private medical information. The case was dismissed, but last month the Chadams filed an appeal to the Ninth Circuit Court.
All of this brouhaha occurred even though Colman did not have CF and posed no risk to anyone. The specific genetic differences he had are in a gray area of genetics known as variable penetrance.
Some people with his DNA end up with CF and some don’t. Up to that time, Colman had not developed any symptoms.
Perhaps it’s not surprising that well-meaning people at Jordan Middle School did not understand these subtleties and misinterpreted Colman’s results. What is surprising is that there is so little legal protection against this sort of misunderstanding.
Surprisingly Weak Protections
Back in 2008 President Bush signed the Genetics Information Nondiscrimination Act (GINA). Unfortunately for the Chadams, it only covers employment and health insurance discrimination.
This oversight needs to be addressed sooner rather than later.
Every day more and more people learn about potential disease risks from their DNA. Many people will have results similar to Colman’s that could be used against them.
The Perils of Testing
DNA is more complicated than a lot of people think. For example, scientists have found over 2000 DNA variants or differences in CFTR, the key gene involved in cystic fibrosis.
Without additional protections in place, CF screening programs like the one described here could place many more people in Colman Chadam’s situation.
Multiply these risks by 10, 100, 1000 or even 10,000 for some of the proposed screens where every gene of a newborn might be looked at (exome sequencing), and you begin to see what we’re up against. People will be flooded with a lot of hard-to-understand information that is easy to misinterpret.
This doesn’t mean genetic testing, which can have many benefits, shouldn’t be done. We just need to ensure it isn’t used to discriminate, as we head toward a world where everyone knows their DNA but doesn’t necessarily understand genetics.