DNA Got a Kid Kicked Out of School—And It’ll Happen Again

[Deleted]

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

A FEW WEEKS into sixth grade, Colman Chadam had to leave school because of his DNA.

The situation, odd as it may sound, played out like this. Colman has genetic markers for cystic fibrosis, and kids with the inherited lung disease can’t be near each other because they’re vulnerable to contagious infections. Two siblings with cystic fibrosis also attended Colman’s middle school in Palo Alto, California in 2012. So Colman was out, even though he didn’t actually have the disease, according to a lawsuit that his parents filed against the school district. The allegation? Genetic discrimination.

When Colman was born in 2000, DNA analysis of newborns was still rare. But he had a congenital heart problem that led to extra tests. That, in turn, led doctors to discover that he carried some genetic markers associated with cystic fibrosis. His markers are no guarantee of a disease though, and Colman never developed any cystic fibrosis. Still, his parents disclosed the information when filling out a medical form to enroll Colman in school.

That information made its way to teachers, who allegedly told the parents of the two other students with cystic fibrosis during a parent-teacher conference. Those parents allegedly demanded the Chadams remove their son from school. Eventually the the school district allowed Colman to return after missing a couple weeks.

The Chadams have since moved away from Palo Alto—but the wheels of the legal system are still turning. When the family first sued the school district in 2013, a district court dismissed the case. The Chadams appeal the dismissal to the federal Ninth Circuit court in January. The Departments of Justice and Education have also written a brief in support of the Chadam’s case, which suggests the federal government has taken an interest in the case and its outcome.
...
In the fifteen years since Colman got a DNA test as a baby, tests have only gotten cheaper and more popular. You have 23andMe’s $199 spit test, of course, but also the National Institutes of Health pumping $25 million into baby sequencing studies. “As we do more screening earlier and earlier in life, there’s potential for misuse of information in ways that are harmful, that could potentially discourage parents from seeking genetic testing even if it’s medically indicated,” says Michelle Lewis, a pediatrician, attorney, and research scholar at the Johns Hopkins Berman Institute of Bioethics. The genetic discrimination future is here.

It's only going to get worse - much, much worse. Imagine the progress from valves to transistors to modern Intel CPU. The progress in DNA testing is even more exponential... while the progress in privacy has reversed.

[the game]

shit happens

[Milchshake]

It's only going to get worse

You better tell him how bad its gonna get. Like when he's an adult and has to fend for his own health care

[Deleted]

You better tell him how bad its gonna get. Like when he's an adult and has to fend for his own health care

Indeed. However, I'm not an American, so that was not my first natural worry ...

[Masoner]

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







It's only going to get worse - much, much worse. Imagine the progress from valves to transistors to modern Intel CPU. The progress in DNA testing is even more exponential... while the progress in privacy has reversed.

First.. you need to stop with the "don't someone take your picture or they will steal you soul" though process. DNA checking for disease is not "the devil" and is VERY VERY good.

Yes it will take time to work everything out (like this) but it does NOT mean "get off your cell phone the devil is in that" mentality needs to resurface.

[Vanyali]

So.. the parents wrote down that he had a disease because he was genetically predisposed to it, even though it never developed.

Said disease means that all kids with the disease will be at risk.

Looking to protect *all* the kids, the kid that was newly enrolling was removed, rather than removing kids already established in the school. When they found out he doesn't actually have the disease, they allowed him back in.

I don't see the problem here, except that the teacher should not have ever disclosed it to the other set of parents. *That* is illegal. And the parents writing their son has a disease he doesn't have. It's not relevant, at all, that he might carry something unless they're planning to have kids in the school.

[Deleted]

So.. the parents wrote down that he had a disease because he was genetically predisposed to it, even though it never developed.

Said disease means that all kids with the disease will be at risk.

Looking to protect *all* the kids, the kid that was newly enrolling was removed, rather than removing kids already established in the school. When they found out he doesn't actually have the disease, they allowed him back in.

I don't see the problem here, except that the teacher should not have ever disclosed it to the other set of parents. *That* is illegal. And the parents writing their son has a disease he doesn't have. It's not relevant, at all, that he might carry something unless they're planning to have kids in the school.

1. The parents wrote that information on a medical information form. We have no idea what was Required on the form, nor the wording, nor the son's exact medical status from either a medical or institutional legal perspective. They could easily have been required or highly encouraged to disclose anything that is even possible, even if that status was not legally required to be revealed (how many people consult lawyers before writing out school forms?).

2. There are least two legally wrong things here. One: the school revealed personal medical information to parents. Two, and far more importantly, they chose to ACT on that information. The latter is what makes all the difference.

3. The school chose to act on that information AFTER the child had already been accepted and enrolled.

[Deleted]

Colman has genetic markers for cystic fibrosis, and kids with the inherited lung disease can’t be near each other because they’re vulnerable to contagious infections.

How dare they protect 2 children from infections.

[Masark]

How dare they protect 2 children from infections.

Except there's no protection happening here, as the child does not have CF, only the genetic markers for it.

[Deleted]

Except there's no protection happening here, as the child does not have CF, only the genetic markers for it.

If the other wouldve gotten the disease and both would die from infections the parents would also sue the school for negligence. America, home of the sue.

[Vanyali]

1. The parents wrote that information on a medical information form. We have no idea what was Required on the form, nor the wording, nor the son's exact medical status from either a medical or institutional legal perspective. They could easily have been required or highly encouraged to disclose anything that is even possible, even if that status was not legally required to be revealed (how many people consult lawyers before writing out school forms?).

2. There are least two legally wrong things here. One: the school revealed personal medical information to parents. Two, and far more importantly, they chose to ACT on that information. The latter is what makes all the difference.

3. The school chose to act on that information AFTER the child had already been accepted and enrolled.

Again: the child DOES NOT have the disease. They wrote on the form that he *does*. Or wrote it in a way that it could be interpreted that he does. No one was kicked out for "bad DNA", but because people with a very specific genetic condition cannot be near each other for extended periods of time.

Your second problem isn't an illegal problem. Knowingly keeping a child there in a situation that would endanger both children would be the illegal action. Removing a child that was recently enrolled, and was not as emotionally attached to the location / friends / teachers, was the best course of action given the information the school had.

- - - Updated - - -

If the other wouldve gotten the disease and both would die from infections the parents would also sue the school for negligence. America, home of the sue.

...it's not something you get. You have it or you don't.

[Deleted]

Again: the child DOES NOT have the disease. They wrote on the form that he *does*. Or wrote it in a way that it could be interpreted that he does. No one was kicked out for "bad DNA", but because people with a very specific genetic condition cannot be near each other for extended periods of time.

You have no idea what was written on that form. This also has almost nothing to do with the core issues. But just in case anyone else gets the wrong idea from your insistence. Here's the quote from the article:

His markers are no guarantee of a disease though, and Colman never developed any cystic fibrosis. Still, his parents disclosed the information when filling out a medical form to enroll Colman in school.

Even consistency indicates your position is untenable. Did you prefer they DIDN'T give that information to the school? Your very argument depends on them doing just so.

Your second problem isn't an illegal problem. Knowingly keeping a child there in a situation that would endanger both children would be the illegal action.

That is what is in dispute. The government also has taken an interest supporting the child's position...

[Sunseeker]

It's only going to get worse - much, much worse. Imagine the progress from valves to transistors to modern Intel CPU. The progress in DNA testing is even more exponential... while the progress in privacy has reversed.

How is this a privacy issue? Coleman's parents willingly disclosed their son's medical issues to the school. The parents willingly had their son undergo more detailed medical tests due to his congenital heart issue, which revealed the markers for cystic fibrosis. There's no privacy violation here, the Chadams weren't forced to get extra testing on their child. The doctors didn't disclose anything to the school.

What doesn't make sense to me is that there are TWO siblings with cystic fibrosis. Being related doesn't prevent you from transferring the cold or flu or other diseases, in fact it makes you MORE likely. So if kids with cystic fibrosis can't be around other kids with cystic fibrosis, why are there two of them in the same school to begin with?

That aside, cystic fibrosis isn't contagious, it's genetic. Their concern is about their kids getting sick and they're sending them to a public school? The only place they're MORE likely to get sick is a hospital! If the parents and the school are concerned about kids with weak lungs getting sick, they should force them ALL to be homeschooled.

[Vanyali]

You have no idea what was written on that form. This also has almost nothing to do with the core issues. But just in case anyone else gets the wrong idea from your insistence. Here's the quote from the article:

.

Again: they disclosed the information. What did they write? You don't know, and I don't know. However, from the fact that the school was under the impression that he had the disease, it's fairly certain that they were either unclear or noted that he had it. It's still ABSOLUTELY irrelevant to write it for a school medical report - you don't, for example, write that your grandma had rheumatoid arthritis for your kid's school medical information. It's irrelevant for the school. For a doctor? Very relevant. Very different situation.

And the dispute is that they kicked him out "for his genetics". That was not the case. They removed him because it put multiple students at risk because of what the parents wrote. When it was discovered he did not have the disease, he was returned to the school... because he was no longer a risk or at risk.

[Masark]

There's no privacy violation here

Yes there is. Emphasis mine :

That information made its way to teachers, who allegedly told the parents of the two other students with cystic fibrosis during a parent-teacher conference. Those parents allegedly demanded the Chadams remove their son from school

[Cheesehead08]

Alright so I made an account specifically for this thread. I have CF and while in high school, another kid with CF attended. We were both in the same PE class. Know how we handled it? We spoke to each other briefly so we would be able to identify each other. Then stayed the fuck away from each other. Problem solved neither of us were removed from school.
Also heres some genetic squares for the person who doesn't get it.

A a
A AA Aa

a Aa aa

Parents do not have the disease but are carriers. A is healthy a is a carrier. So we see that the child has a 25% to be healthy not a carrier. 50% to be healthy but be a carrier of the disease like his parent. 25% chance to be infected with the disease.

[Sunseeker]

Yes there is. Emphasis mine :

But information you willingly give to the school isn't private. Especially if it endangers other students. Besides, this article is clearly biased, what likely happened was something along the lines of:
Hey parents, there's a new kid in school with the same disease as your kid, so we're going to have to take extra precautions. It's likely no names were named.
The other parents likely overreacted and said the new kid shouldn't get to attend school with their special sickly snowflakes.
The school then conveyed this demand to the Chadams.

It's highly unlikely that the school gave the "other parents" the name and numbers or home address of the Chadams and the "other parents" went banging down their door. The message was likely conveyed through the school and neither side knew who the others were until later.

[Masark]

But information you willingly give to the school isn't private. Especially if it endangers other students. Besides, this article is clearly biased, what likely happened was something along the lines of:
Hey parents, there's a new kid in school with the same disease as your kid, so we're going to have to take extra precautions. It's likely no names were named.
The other parents likely overreacted and said the new kid shouldn't get to attend school with their special sickly snowflakes.
The school then conveyed this demand to the Chadams.

1. Wrong. See FERPA.

2. Also incorrect, the child in question does not have CF and thus this does not endanger anyone.

[Sunseeker]

2. Also incorrect, the child in question does not have CF and thus this does not endanger anyone.

Which was not what they wrote on the medical information sheet. They made some mention of it at least and were either unclear in saying that their child had markers, but not the disease or something else that made it unclear as to the medical status of their child. YOU don't fucking know what they wrote exactly and neither do I. But clearly someone was concerned.

Which again, is all besides the fucking point. If you don't want kids with CF to get sick, why are they being sent to one of the most disease-spreading places possible? You can't "catch" Cystic Fibrosis, even if you have the genetic markers for it, you either develop it, or you don't. It's not a virus.

EDIT: in regards to FERPA, you should probably be aware, rather than just rattling off laws, that schools can disclose information related to health or safety emergencies on a case-by-case basis. It's right there on the FAQ of the law.

[Masark]

Which again, is all besides the fucking point. If you don't want kids with CF to get sick, why are they being sent to one of the most disease-spreading places possible? You can't "catch" Cystic Fibrosis, even if you have the genetic markers for it, you either develop it, or you don't. It's not a virus.

EDIT: in regards to FERPA, you should probably be aware, rather than just rattling off laws, that schools can disclose information related to health or safety emergencies on a case-by-case basis. It's right there on the FAQ of the law.

1. The issue is that having multiple persons with Cystic Fibrosis in proximity to one another is problematic. The Cystic Fibrosis Foundation's recommendation is not to have multiple children with Cystic Fibrosis in the same classroom.

2. This wasn't an emergency.