Palo Alto was buzzing last month over the unfortunate case of 11 year old Colman Chadam [i]. Colman was settling in and making friends at a new middle school, until school administrators determined that the bantam-weight fifth grader posed a threat to other students and should be transferred across town. Authorities deemed Colman threatening because his school medical forms noted positive tests for one or more variants of the gene for cystic fibrosis (CF). CF is not a communicable disease, of course, but an inherited one. A child with CF inherits two copies of the variant gene, one from each parent. CF symptoms vary in type and severity, and can include pulmonary, GI and other manifestations[ii]. School administrators wanted Colman out because two children already in the school have CF. Specialists recommend that kids with CF try to stay away from each other, maintaining a distance of 3 to 6 feet, because they are susceptible to the same respiratory infections and pose a risk to each other.
But here is where things get complicated. Colman tested positive at birth for a CF variant, but he does not have CF. He took the “sweat test,” the clinical standard for diagnosis, and it came out negative. His lung function is normal. He has never had any symptoms associated with CF, so he has not had any treatment. Colman may be a carrier for CF with a single copy of a CF gene. If so, he is in good company, since about 4% of US Caucasians carry a single CF gene with no clinical consequences. Or he may carry two different abnormal genes; his parents have not specified the exact findings. The more scientists study CF the more variant genes they find; there are now nearly 2,000 known variants[iii]. It is not at all clear how a combination of two different CF genes translates into illness versus carrier status. Indeed, the same gene combination may result in vastly different symptoms for different people.
So Colman, who doesn’t have CF, was asked to leave to protect two children who do. However, saying that CF is a genetic disease is to say that it runs in families. At a guess, the two children with CF in Colman’s middle school are siblings. For one thing, there was no prior hoopla about the 2nd child with CF. That means they likely ride to school together and sit at the same dinner table. Two CF siblings should not share a bedroom, but maintaining the recommended distance at all times is simply impossible in the context of family life. Nor is the 3 to 6 foot rule likely derived from air-tight clinical evidence, since it would be unethical to run a study that tested the lower limit of exposure of one child with CF to another.
The good news is that treatments for CF have improved considerably in the last two decades, and more children with the disease are staying out of the hospital and heading to school. Schools and families find different solutions to the problem of separating CF kids from each other. Keeping CF kids in different classrooms and disinfecting desks and cafeteria tables is a good start.
Which brings us back to Palo Alto. The administrators who asked Colman to leave didn’t ask his parents or doctor about the clinical impact of his CF gene and missed the fact he does not actually have CF. They didn’t acknowledge that each CF child in their school is already exposed to another child with CF, likely a sibling. If Colman is simply a CF carrier, he and the 4% of other CF carrier students in the school pose no increased risk to the students with CF. When school officials told Colman he had to leave, his parents sued for an injunction and home schooled him while waiting for the answer. The parents won, but only after an ugly public battle, a trip through the courts, and consultations with a different set of CF experts.
What are the lessons learned here? For one thing, adults need better science literacy. The study of CF and of many diseases is in a rapid state of evolution. No one can expect school administrators to master up-to-date information on all conditions affecting children. But good decisions depend on good information. Information is not all that hard to come by in Palo Alto, with a world class medical institution and unrivaled rates of computer literacy. Frankly, one positive outcome would be for the students in this school to study genetics and learn about the difference between carrier status and actually having an illness. They could then serve as tutors for the adults who should have known better.
As medicine makes progress, we hope for cures but often get survival with lingering disability. Many children are now in school who would not have had that chance in earlier generations. However, working out appropriate accommodations may not be easy. Colman does not have CF, but suppose he did. How does a school balance competing needs of different children? Why should one child be shuttled away while two siblings share the closer school? Is “first-come-first-served” the only or most ethical way to balance children’s needs? Is this a good first lesson for children about justice in the US? School administrators will need to learn to mediate among families, modeling flexible and creative approaches to problem solving. They will need good information and the knowledge that the rights of one child cannot be preserved by trampling the rights of another.
[i] Tucker, J. Boy in school flap over cystic fibrosis. San Francisco Chronicle. November 6, 2012. http://www.sfgate.com/health/article/Boy-in-school-flap-over-cystic-fibrosis-3944802.php
[ii] PubMed Health, Medical Encyclopedia, http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001167
[iii] Cystic Fibrosis Foundation, Carrier Testing for CF, http://www.cff.org/AboutCF/Testing/Genetics/GeneticCarrierTest/