Palo Alto Student Was Asked to Leave School Because of His DNA

A magnified strand of DNA. (Tomasz Wyszomirski)

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.

In 2008 President Bush signed the Genetics Information Nondiscrimination Act (GINA) . It did not protect a middle school student from being asked to transfer to a new school because of his DNA.
In 2008 President Bush signed the Genetics Information Nondiscrimination Act (GINA) . It did not protect a middle school student from being asked to transfer to a new school because of his DNA. (NHGRI)

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.

Palo Alto Student Was Asked to Leave School Because of His DNA 8 February,2016Dr. Barry Starr

  • Kuns Legal Counsel

    Why is there no discussion of California Genetic Information Nondiscrimination Act of 2011 (CalGINA), which amends things like UNRUH and the education code?

  • Sam

    Why did the parents supply the school with this information, then claim it is totally irrelevant? The school was trying to keep all the CF kids safe by separating them into different schools. There is no reason for parents to give genetic info to the school.

    • Dave Stubbs

      He’s not a “CF kid”. He doesn’t have the disease. Why is this so difficult for people to grasp?

      • Sam

        The parents gave the information out of “an abundance of caution.” Yet they are angry at the school for exercising an abundance of caution? It sounds like the parents wouldn’t mind if a CF kid in his school was forced to change schools. They just don’t want their own kid to have to change schools.

    • Jason

      It sounds like they gave the school the information out of abundance of caution on a medical history report, but the school misunderstood it. Separate from the misunderstanding, they then used his genetic information to negatively discriminate against the child as they thought they knew what was better what was best for him, or didn’t want the hassle of another CF child. They were definitely wrong on the first point (misunderstanding his results, as they didn’t understand genetic mosaicism), and were debatably wrong that they should decide to exclude him from their school because of it.

      • Sam

        The parents are able to exercise an abundance of caution, yet the school isn’t?

        • Jason

          You are associating the phrase abundance of caution with the wrong part of my comment.
          And as I said in my comment they were debatably wrong about the second point (what you were addressing) – meaning “open to discussion or argument” (IMO with two big camps agreeing to either side.) They were definitely wrong about the first point as they didn’t understand genetic mosaicism – the boy was not afflicted with the disorder. Different parts of his body / a subset of cells had the mutation. Not enough (or potentially any) of the cells involved with the organs linked to the disease had the mutation. As he is not afflicted at present (and quite possibly will never be) he has no reason to be discriminated against as if he had the disease. Being around those children won’t make him any more likely to get it, and he/she won’t be any more dangerous to the other children then another regular child being around those children unless he actually becomes CF afflicted.
          (Background – a ‘fancy’ Bacherlors of Science in Genetics)

  • Kristen Deibele-Nations

    1 in 8 people are a carrier of a CF gene so if they were getting rid of carriers(which is what this boy is) they weren’t very thorough! lol…. It is true that people with CF need to be kept separate so they don’t pass bugs back and forth but that’s not the case with carriers. This is so mind blowingly stupid. 🙁

  • gw

    Sensationalist headline with a story that doesn’t make sense. There must be more to this.

    These “click me” headlines are too common these days.

    Very disappointing, I usually expect more from KQED.

  • CF Parent

    One either has CF or does not have CF. A child, with two recessive genes is born with CF. No one develops it or is predisposed to having it.

    Someone with one CF gene is a carrier. Having one cf gene does not predispose or create a potential for having CF.

    The parents of the two CF students at that school each have one recessive CF gene…that is how their children were born with CF.

    Even this article does not explain CF correctly.

    • Barry

      CF is not quite as simple as this. There are DNA differences in the CFTR gene (like delta508) that will cause CF if you end up getting it from both mom and dad. But there are some DNA differences like R117H which, even in combination with a mutation like delta508, sometimes lead to CF and sometimes not depending on the person. http://www.cftr2.org/mutation.php?view=general&mutation_id=6

      • CF Parent

        Yes, there are those who may have the R117H that do not have confirmed CF. But even those with a double deltaF508 can have a more or less severe expression than another…and that can be among siblings. But a sibling who is a carrier is not a health threat to his/her sibling with CF. In the instance of a CF carrier presenting a threat to a fellow CF student the claim is preposterous. Even with the genetic variable one does not get CF like one would get a cold/flu.

  • racc0on7

    Shouldn’t the sick kids be the ones to leave? Yeesh. Not that anyone should, but why does the other guy get the shafts to protect them?

  • Lee O. Welter

    Is this yet another reason for every family to have alternatives to our K-12 monopoly school system, in order to improve education quality and costs?

    • Jim Mordecai

      K-12 public education because it is public provides much more opportunity to limit misuse of genetic data. If this was a charter school privately managed it would likely never had been reportedly publicly but would apply only to one charter school. And, if Federal law passed limiting genetic information, it would be hard to enforce in privately managed charter schools that would not have to tell a family why they were asked to leave. Privately managed charters it is management way or the highway and parents have less legal rights than in a publicly managed school.

      Remember Lee that the charter alternative is financed by public’s K-12 privately managed education dollars with public and parents having less oversight and rights.

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Author

Dr. Barry Starr

Dr. Barry Starr (@geneticsboy) is a Geneticist-in-Residence at The Tech Museum of Innovation in San Jose, CA and runs their Stanford at The Tech program. The program is part of an ongoing collaboration between the Stanford Department of Genetics and The Tech Museum of Innovation. Together these two partners created the Genetics: Technology with a Twist exhibition.

You can also see additional posts by Barry at KQED Science, and read his previous contributions to QUEST, a project dedicated to exploring the Science of Sustainability.

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