Student with CF gene forced to transfer schools

Rasselas

Former Staff
Feb 2010
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#1
A boy in Palo Alto carries the gene for cystic fibrosis, but he doesn't have the disease. Apparently, another student at his school has the disease, and it is very bad for CF sufferers to be around other CF patients, so the school forced the boy to change schools or be homeschooled. Apparently this is fairly common, even when there is no real potential for harm to other children:
Colman's condition echoes situations experienced by students across the country with allergies. A U.K. study last year found that adolescents who have a nut allergy tend to feel isolated, stigmatized or left out of activities.Those findings are anecdotally supported by stories like one out of Edgewater, Fla., where parents in the Volusia County School District rallied behind a movement to remove a 6-year-old girl from the classroom last year. Homeschooling the child, they said, would reduce frustrations other families experience for having to comply with special rules to ensure the girl's wellbeing.
Colman is currently being homeschooled pending a court hearing next week.
http://www.huffingtonpost.com/2012/...fornia-_n_1981741.html?utm_hp_ref=mostpopular

This seems like another anti-science move to me. If doctors confirm there is no issue, schools shouldn't be acting preemptively.
 

Seraphima

Former Staff
Aug 2010
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#2
It would be understandable to limit contact between students who have the disease but it makes no sense to remove the child with just the gene/carrier status. Unfortunately, schools are not very prepared for students with complex medical conditions and tend to either over or underreact. In cases where special precautions needed to be taken by other students to protect another with a medical condition, it would be vital to have anonymity but to also provide education to all students anyways. Bring in a nurse and have him/her explain the condition (and that it's not contagious, for example).

I'll never forget being shunned in elementary school because my brother had cancer and other kids thought it was contagious. Luckily people got over it. Would have been nice, though, if the kids impacted by having a sick schoolmate had been sat down and told that cancer isn't contagious.
 
Likes: Rasselas
Mar 2012
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#3
Well, it does seem to be an action taken out of an overabundance of caution. But the story does say: "Cystic fibrosis is inherited from both parents and while not contagious, can pose a threat if two people with the disease are in close contact."

The other side says: "Dr. Dennis Nielson says a child is "at absolutely no risk to the children that have classic cystic fibrosis" if he or she has a normal sweat test -- which is the case for Colman. "

Now, which is true? Between you, me and the lamp post I have no idea. What exactly is the risk here, if any?

The school district then says: "Palo Alto Associate Superintendent Charles Young told NBC News that officials made the request to move Colman based on consultations with medical experts who said a transfer would be the "zero risk option."

So the school is basically saying, "Why take the chance?" {because if something were to happen they'd be potentially liable}

So, now we ask what the imposition is: "current school to another one miles away"

"Colman is currently being homeschooled pending a court hearing next week."

Why? Why isn't he at the other school that is "one miles {sic} away"?

Again I would suggest that we should be guided by Judge Learned Hand's "calculus of negligence" which is that we should generally mitigate risk where the cost of mitigation is weighed against the probability of the harm and the severity of the harm.

With respect to health, diseases and the like, the probability of the harm is the likelihood that this condition is contagious, infectious, or otherwise poses a risk onto others (in the article that is disputed), the harm will vary from the common cold to the chicken pox to the flu, to apparently whatever malady can befall a person with CF who is exposed to a person bearing the gene for CF (he's a bizarre form of typhoid Mary, I suppose?)

And then weighed against the cost of mitigating this risk, which is the fact that he can attend another school 1 mile away...doesn't seem like that much of an imposition....
 

Seraphima

Former Staff
Aug 2010
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#4
Well, it does seem to be an action taken out of an overabundance of caution. But the story does say: "Cystic fibrosis is inherited from both parents and while not contagious, can pose a threat if two people with the disease are in close contact."

The other side says: "Dr. Dennis Nielson says a child is "at absolutely no risk to the children that have classic cystic fibrosis" if he or she has a normal sweat test -- which is the case for Colman. "

Now, which is true? Between you, me and the lamp post I have no idea. What exactly is the risk here, if any?
Having the gene/carrier status doesn't mean you have the disease - certain carriers of other hereditary diseases might experience mild symptoms, (for example in thalassemia) but that's not the case with cystic fibrosis which is asymptomatic. Having the gene and having a carrier status just means that if you have a child with another carrier, that child has a 1 in 4 chance of having the disease. Genetic counseling would need to occur with anyone who has the gene to check their partner/spouse and discuss family planning options.

Individuals with the disease can't be around one another because they carry bacteria/infections that can easily be spread to another CF sufferer. Even if Colman had the actual disease, the risk could be alleviated or eliminated by ensuring he doesn't share a class with another sufferer, or through the use of a variation of universal precautions in situations where they would interact.
 
Mar 2012
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#5
Having the gene/carrier status doesn't mean you have the disease
Yes, I actually caught that tidbit - "person with CF who is exposed to a person bearing the gene for CF"

The story notes how two people with the actual disease somehow pose a risk to the other (that I had never heard of), but the story says: "based on consultations with medical experts" the school district is making this decision since its been told this presents a 'zero risk option' - the implication being that keeping them together has SOME risk associated with it, but again I'm not sure what that is. [Obviously the other side said there ISN'T risk]

Reading the article I'm still left wondering exactly what the risk is!
 

Seraphima

Former Staff
Aug 2010
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#6
Yes, I actually caught that tidbit - "person with CF who is exposed to a person bearing the gene for CF"

The story notes how two people with the actual disease somehow pose a risk to the other (that I had never heard of), but the story says: "based on consultations with medical experts" the school district is making this decision since its been told this presents a 'zero risk option' - the implication being that keeping them together has SOME risk associated with it, but again I'm not sure what that is. [Obviously the other side said there ISN'T risk]

Reading the article I'm still left wondering exactly what the risk is!
Would be interesting to find out who the "medical experts" are - wouldn't really surprise me if they just asked a school/district nurse and ran with it without fact checking (or some similar situation). I don't see any school board paying the costs of actually consulting a "medical expert", though I'm sure their lawyers will need to do that now.
 
Mar 2012
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#7
Would be interesting to find out who the "medical experts" are - wouldn't really surprise me if they just asked a school/district nurse and ran with it without fact checking (or some similar situation). I don't see any school board paying the costs of actually consulting a "medical expert", though I'm sure their lawyers will need to do that now.
Yes, indeed this will go through that state's administrative courts at this point, so we can follow up on this in about 6 months or so assuming somebody reports on the result, which I hope they do.

I'd like to know how the school knew the kid was a carrier of the gene. How would the school even know that to begin with?
 

Seraphima

Former Staff
Aug 2010
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#8
Yes, indeed this will go through that state's administrative courts at this point, so we can follow up on this in about 6 months or so assuming somebody reports on the result, which I hope they do.

I'd like to know how the school knew the kid was a carrier of the gene. How would the school even know that to begin with?
The family apparently put it on their registration (or some school form).