School discriminates boy over his DNA (genotype)

steddyeddy

A boy is kicked out of school because he is the carrier for cystic fibrosis. This doesn't mean he has the illness but if does mean he could pass it on if he has children with another carrier. This is one of the first instances where a kid was allegedly discriminated against because of his DNA. Some scientists speculate that genes for intelligence might be used by schools to select the best calibre kids in the future.

This seems to have people up in arms but do we already not select kids for schools based on wealth of parents and academic ability? Neither of those things is anything they have any power over and likewise no child has power over their genotype. By the way I'm against selection based on wealth, genetics or ability I think equality of opportunity must be present.

It sounds like a scene out of a sci-fi film, but a few weeks into attending sixth grade at a middle school in Palo Alto, California, Colman Chadam was asked to leave because of something his parents revealed to teachers about his DNA.
The problem was that Chadam has some of the genetic markers for cystic fibrosis - a rare, inherited disease that severely affects the lungs and digestive system, making a patient highly susceptible to contagious infections. Having these markers doesn’t mean he has the disease, and Chadam has never displayed any related symptoms, but because his school already had two other students in attendance with cystic fibrosis, Chadam was out.


Still sound crazy? Well, it is and it isn't. It is, because despite what his DNA looks like, Chadam has never been diagnosed with cystic fibrosis. But the school did what it did because people with cystic fibrosis need to be separated due to a heightened risk of 'cross-infection' when it comes to certain germs.
"In people with cystic fibrosis, thick, sticky mucus that clogs the lungs also allows germs to thrive and multiply. This buildup makes them more susceptible to developing lung infections," says the US Cystic Fibrosis Foundation.
"When there is more than one person with cystic fibrosis in your school, it is essential that they be kept a minimum of 6 feet (1.8 metres) apart from each other. Germs can spread as far as 6 feet through droplets released in the air when people cough or sneeze."
Chadam’s parents allege that after disclosing their son’s medical details to the school confidently, a teacher relayed this information to the parents of the siblings with cystic fibrosis. They complained that Chadam's attendance posed a serious health risk to their kids, and so he was asked to leave.
I say "allege", because while all of this actually happened way back in 2012, Chadam’s parents have been trying to sue the school over genetic discrimination ever since.
Back in 2013, the family’s request to sue the school for violating the Americans With Disabilities Act and Chadam’s First Amendment right to privacy was thrown out by the district court, but this month they appealed to the US Ninth Circuit Court of Appeals to hear their case. Attorneys for the US Departments of Justice and Education have shown their support.
"The family would like a definitive and unequivocal statement from the Ninth Circuit that you can’t just do this to people based on genetic markers alone," Stephen Jaffe, the family’s attorney, told BuzzFeed News last week. "The more people that get genetic testing done, either for medical reasons or recreationally, the more possibility this stuff gets out. ... It’s not a great leap to be concerned about what happens to this information."
How the case will play out is not yet clear, but whatever the outcome, it will likely set a very interesting precedent as we head towards a future where genetic testing is no longer prohibitively expensive. If any individual, any parent, has access to DNA tests, will situations like this occur more frequently, and will this discourage people from wanting to know the ins and outs of their genome?
As Sarah Zhang reports for Wired, right now, the federal Genetic Information Nondiscrimination Act (GINA) of 2008 has only specifically outlawed genetic discrimination in two cases: employment and health insurance. This means the Chadams' lawyers have to invoke the Americans With Disabilities Act (ADA) instead, but until now, no one’s ever sued over genetic discrimination outside of GINA.
There is one case where railroad company workers were filing for worker’s comp because of carpal tunnel syndrome, and the company used genetic testing to see if they had any predispositions for the disease. But because it was settled out of court, it's not the legal precedent that the Chadams need.
"The workers got $2.2 million - but because the suit ended in a settlement rather than a court decision, it did not establish a legal precedent for the ADA covering discrimination based on genes," says Zhang. "The outcome in Chadam’s case could, if a trial goes forward, spell out exactly who gets to access genetic information and what decisions can be made based on it."
The future is here, everyone. The time to start figuring out what we want it to look like.

RDM_83 again

I read a little about this case, its a bit more complex than the above makes it sound, as far as I remember he isn't just a carrier of the gene (which if you take a country like Ireland loads of people will be tragically) He has both genes (CF is recessive thankfully). He hasn't developed the syndrome yet though, however if he develops CF it will make the other children who already suffer CF even more at risk than they currently are.

About the other point, in a country like the USA this has potential to be a major issue, especially when if an effort to work out who individuals are anonymous data may not actually that anonymous at all.
Thankfully we aren't the USA and though our health system isn't the best we do have a core public system that does function and doesn't drive people to bankruptcy.

Is it actually unethical for private insurers to give the best rates to those with lowest risk, apart from in relation to health it doesn't seem like it is (which is why we shouldn't try for a private system!)

RDM_83 again

Somebody fix the goddamn quick reply double posting problem

It looks like a misguided public health measure as opposed to pure discrimination.

"In people with cystic fibrosis, thick, sticky mucus that clogs the lungs also allows germs to thrive and multiply. This buildup makes them more susceptible to developing lung infections," says the US Cystic Fibrosis Foundation.
"When there is more than one person with cystic fibrosis in your school, it is essential that they be kept a minimum of 6 feet (1.8 metres) apart from each other. Germs can spread as far as 6 feet through droplets released in the air when people cough or sneeze."

The school needs some education on the difference between a carrier and a sufferer.

drunkmonkey

I thought you were born with it, didn't think it just develops as you get older?

drunkmonkey

RDM_83 again wrote: »

Somebody fix the goddamn quick reply double posting problem

If you stopped fapping while you were posting it would help!!

RDM_83 again

Candie wrote: »

It looks like a misguided public health measure as opposed to pure discrimination.



The school needs some education on the difference between a carrier and a sufferer.

Isn't there unfortunately a high chance of him developing it though and causing a serious issue for the public health of existing students if he has both genes (I know shag all about CF really)

RDM_83 again

RDM_83 again wrote: »

Isn't there unfortunately a high chance of him developing it though and causing a serious issue for the public health of existing students if he has both genes (I know shag all about CF really)

You're born with it, it's usually diagnosed soon after birth. The symptoms are progressive.

RDM_83 again

Candie wrote: »

You're born with it, it's usually diagnosed soon after birth. The symptoms are progressive.

But if he has both genes isn't it likely that its just progressing at a much slower rate than normal or when you say "born with it" do you mean people are born already exhibiting symptoms and if they aren't they won't become suffers?

Medusa22

You either have CF or you don't. If you carry one CF gene then you are a carrier, but if you have two CF genes then you have CF. I think this case is a misunderstanding. I don't know the details but it is possible that the boy has one CF gene and is suspected of having CF but the other gene hasn't been found yet or is very rare (there are thousands of CF genes and some are still being discovered). It is also possible that he just hasn't become symptomatic yet or displays few symptoms, this is possible. I would be very surprised if the boy was excluded from the school for just being a carrier, I think he must pose a health risk to the other children with CF in the school.

Pretzill

This sounds very strange - if he is a carrier he doesn't have CF and surely any of the children in the school would pose a risk to a CF sufferer as their immune systems can get very low and schools are a great place for picking things up?

Edit to add:

Yes CF sufferers can pass on infections because they suffer from and with them more often. That's why CF sufferers here fought for years to have segregated wards for patients whilst in hospital. But if you are a CF sufferer and have a bad patch you probably will have to stay out of school until it clears - I think the parents in this story have a strong case. What about sibling CF sufferers (which can happen) how hard would it be to keep them apart? What about friends who are CF sufferers, I met a guy in hospital once who had CF so had his fiancee -
(Sad but it happens - both hopeful on the transplant list)

steddyeddy

It looks like it was a case of genetic discrimination and the first of many. The fact that it arose from a misunderstanding of genetics does not negate the fact it's discrimination based on genetic knowledge. Most genetic discrimination is based on faulty assumptions. The below is from a file from the district court. He was just a carrier. He won't have symptoms.


From the district court:

STATEMENT OF THE ISSUE Defendant Palo Alto Unified School District transferred plaintiff C.C. from his neighborhood school against his and his parents’ wishes because he had a genetic marker for cystic fibrosis (but not the disease itself), and the school district believed he posed a danger to two students in the school who had cystic fibrosis. Plaintiffs filed suit for damages under Title II of the Americans with Disabilities Act of 1990 (ADA) and Section 504 of the Rehabilitation Act (Section 504). The

Anita Blow

Pretzill wrote: »

This sounds very strange - if he is a carrier he doesn't have CF and surely any of the children in the school would pose a risk to a CF sufferer as their immune systems can get very low and schools are a great place for picking things up?

Edit to add:

Yes CF sufferers can pass on infections because they suffer from and with them more often. That's why CF sufferers here fought for years to have segregated wards for patients whilst in hospital. But if you are a CF sufferer and have a bad patch you probably will have to stay out of school until it clears - I think the parents in this story have a strong case. What about sibling CF sufferers (which can happen) how hard would it be to keep them apart? What about friends who are CF sufferers, I met a guy in hospital once who had CF so had his fiancee -
(Sad but it happens - both hopeful on the transplant list)

CF suffers present a greater risk to other CF sufferers than the general population moreso because CF is associated with colonisation by specific types of bacteria that may not normally be present in significant amounts in the general population. Generally a person with CF is permanently colonised one or two of the bacteria types and are managed with a specific set of antibiotics for those types, but exposure from patient-to-patient contact to another bacteria can worsen their lung disease because their immune system is challenged further and it may require changes to their medications. Certain CF bacterial strains like Burkholderia Cepacia will cause rapid destruction of the lungs and can cause death by Cepacia Syndrome/Sepsis if passed from one CF patient to another who was not colonised by it. It's also extremely resistant to antibiotics.
Considerations like that underlie the compulsion sufferers and those around them have to ensure that no patient-to-patient contact occur.

If the guy has 2 copies of the CF gene, I'm sure there's an aspect of the story which is being left out which is the reason for his expulsion. 3 CF sufferers in one school is a lot.

Jimoslimos

drunkmonkey wrote: »

I thought you were born with it, didn't think it just develops as you get older?

You are, though in rare cases diagnosis can be missed until later in life - especially if you remain asymptomatic or pancreatic function is normal. The blood-spot test for newborns is a biochemical test, so looks for a particular enzyme precursor - it's not a genetic test so won't identify carriers.

I don't think that's the case here since it seems to suggest that genetic tests were carried out. IMO the worst part of this story was that teachers disclosed sensitive medical information to parents of another child. The misunderstanding of genetics is one thing but that is absolutely unforgivable.

One eyed Jack

Anita Blow wrote: »

If the guy has 2 copies of the CF gene, I'm sure there's an aspect of the story which is being left out which is the reason for his expulsion. 3 CF sufferers in one school is a lot.

Apparently, according to the article in the opening post, the child was born with a heart condition, and they discovered the genetic markers during treatment. The other two children in the school are siblings. The other children's parents demanded the child's removal from the school after it was disclosed to them at a parent teacher meeting, but the child was allowed to return to the school after a few weeks.

The teacher and the school messed up in this case.

Capt'n Midnight

One in 19 Irish people are carriers for Cystic Fibrosis.

It's only when both partners carry a CF mutation that there a 1 in 4 chance of the children having the disease rather than just being carriers.

the_syco

http://www.wired.com/2016/02/schools-kicked-boy-based-dna/

Those parents allegedly demanded the Chadams remove their son from school.

This, to me, screams that the "other parents" had more money.

Eventually the the school district allowed Colman to return after missing a couple weeks.

Sounds like he was let back in, but the parents left anyway?

steddyeddy

the_syco wrote: »

http://www.wired.com/2016/02/schools-kicked-boy-based-dna/

This, to me, screams that the "other parents" had more money.


Sounds like he was let back in, but the parents left anyway?

Sounds more like the other parents were idiots with money.

steddyeddy

More from I f-ing love science on the issue.

A potentially landmark legal case is currently underway in the U.S., with a middle school in Palo Alto, California, having been accused of “genetic discrimination” against a student. Though a district court initially dismissed the lawsuit in 2013, an appeal has now been filed which, if successful, could set a new legal precedent regarding the ways in which people’s genetic information can be accessed and used.
The lawsuit relates to an incident that occurred in 2012, when an 11-year-old boy named Colman Chadam was told that he would have to transfer away from Jordan Middle School because he carried certain “genetic markers” for cystic fibrosis. The school’s decision came after the parents of two other students who suffer from the condition raised concerns about Chadam’s attendance, as it is considered dangerous for people with cystic fibrosis to come into contact with each other.
The disease is caused by a mutation in a gene that codes for the production of a protein involved in transporting chloride ions across cell membranes. This results in abnormal amounts of mucus secretion in several organs, particularly the lungs, which increases a sufferer’s susceptibility to infection. Therefore, when two sufferers of the condition meet, the chances of an infection spreading from one to the other is relatively high.
However, despite his genetic markers, Chadam does not actually suffer from cystic fibrosis, and therefore does not pose any danger to other students with the condition. In fact, these markers were only discovered because doctors decided to conduct extensive genetic tests after treating Chadam for a congenital heart problem at birth.
In spite of this, his parents decided to disclose this information to the school when filling out medical forms during enrolment, and this was later divulged to other parents. The school then decided to remove Chadam after coming under pressure from the parents of two siblings who suffer from cystic fibrosis, before allowing him to return two weeks later.
The following year, his parents filed a lawsuit accusing the Palo Alto School District of “genetic discrimination,” which they claimed contravened the Americans with Disabilities Act. A district court ruled against the Chadams, finding that the school had acted in the interests of the safety of its pupils.
However, an appeal was lodged with the Ninth Circuit Court of Appeals last month, and has gained support from the Departments of Justice and Education. If successful, it could result in the expansion of the Genetic Information Nondiscrimination Act, which currently outlaws genetic discrimination in all processes related to employment and health insurance, but has never before been applied to education.