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.
Yes, genetic discrimination. Get used to those two words together, because they're likely to become a lot more common. With DNA tests now cheap and readily available, the number of people getting tests has gone way up—along with the potential for discrimination based on the results. When Colman's school tried to transfer him based on his genetic status, the lawsuit alleges, the district violated the Americans With Disabilities Act and Colman's First Amendment right to privacy. "This is the test case," says the Chadam's lawyer, Stephen Jaffe.
(Score: 4, Interesting) by acp_sn on Wednesday February 03 2016, @08:47PM
what reason did they give to kick the kid out? are two cystic fibrosis kids like the black and white aliens in star trek that catch on fire when they get near each other?
(Score: 2) by JoeMerchant on Wednesday February 03 2016, @08:54PM
Somebody might get sick (granted, with a life threatening illness) and the chances of this are much higher when two kids with the markers are in close proximity - they pass these serious diseases to each other much more easily than to/from the general population.
So, it's worse than black and white aliens, these kids are basically being forbidden from being in close proximity with "their own kind," because somebody might get sick.
Seems to me that it shouldn't be the school's call, it should more or less lie with the parents of the first "marked" kid to enter school, if they are o.k. with the risk of another "marked" kid in the same classroom and the parents of the second "marked" kid are also o.k. with the risk, absolve the school of any wrongdoing in the event of an unfortunate incident and get on with life.
Just wait for the pre-marriage DNA tests that start reading out your probability of producing "defective" offspring, that one's going to be a real hoot when it gets here.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @08:57PM
Just wait for the pre-marriage DNA tests that start reading out your probability of producing "defective" offspring, that one's going to be a real hoot when it gets here.
How is that a real hoot? I would like to know before hand if we can create a viable offspring if that is our long term goal. Or if certain diseases are more likely, would allow for better monitoring during pregnancy. Also in backward countries where abortion is illegal, preventative testing can save a lot of heartache down the line.
(Score: 2) by JoeMerchant on Wednesday February 03 2016, @08:59PM
Real hoot: Drama, bad movie plots (Bollywood will eat it up), teenage maturity level emotional angst.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 1, Interesting) by Anonymous Coward on Wednesday February 03 2016, @09:25PM
Speaking of Indian culture, it should be only a few years before an Indian kid with an MD starts a DNA testing arranged marriage service.
(Score: 2) by VLM on Wednesday February 03 2016, @09:03PM
Medical companies will not stand for this.
Some genetic diseases still exist because without guidance enough people become carriers that its a viable disease... so eight generations of carriers only reproducing with non-carriers, or even not reproducing at all, means you'll end up with a disease that'll die out on its own.
Medical companies exist for long term cash cows... never cure the cough if you can sell cough drops for 40 yrs, etc.
(Score: 3, Funny) by frojack on Wednesday February 03 2016, @09:30PM
frojack tears of a 5 foot section of tinfoil and passes it to VLM, shiny side down so VLM will not see his own reflection.
No, you are mistaken. I've always had this sig.
(Score: 2) by JoeMerchant on Wednesday February 03 2016, @11:21PM
He's more right that anyone wants to admit. I don't think he's so right that the medical companies will actively suppress development of the technology, but what investor backs a scheme that endeavors to terminate its own income stream? New products are all backed by investors, whether from Wall Street, or within existing company's R&D pipelines.
The Polio vaccine was an accident in that it did wipe out the disease- what vaccine developed in the last 30 years even has a chance to eradicate its disease (aka income stream)?
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 2) by linuxrocks123 on Thursday February 04 2016, @12:17AM
Polio isn't officially considered wiped out yet; the only disease that is is smallpox. Eradicating diseases from the whole world is very difficult for a number of easily inferred reasons.
Also, you need not invoke conspiracy to explain why more recently developed vaccines are less effective. A more logical explanation is that the low-hanging fruit is already picked: the easy-to-vaccinate diseases already have effective vaccines.
(Score: 2) by JoeMerchant on Thursday February 04 2016, @01:32AM
Oh, but invoking conspiracy is fun. If "low hanging fruit" were the true motivator for developing health improvement technology, clean drinking water (ala DEKA Slingshot) would have been conquered 20 years ago, or more. There are tons of relatively easy to cure diseases that happen to be difficult to monetize for one reason or another, so instead we develop cancer therapy machines that cost tens of millions of dollars, because the payers in those markets have deep pockets.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 2) by Immerman on Thursday February 04 2016, @03:51AM
You don't even need a conspiracy - that implies people working together to suppress a cure. All you really need is a capitalist medical infrastructure. You have $X to invest in medical research, for the purpose of turning a profit. Which sounds like it will give you the best return on investment?
A treatment that will potentially eliminate the targeted disease from the planet
A treatment that could save the lives of millions of people who can't afford to pay for it
A treatment that improves the lives of wealthy patients so long as they keep taking it regularly
If you chose A or B, congratulations, you're a decent human being. Enjoy the warm feeling that brings to your heart, and leave your bank account by the door when you leave, because you clearly don't have what it takes to get rich.
(Score: 2) by JoeMerchant on Thursday February 04 2016, @02:05PM
that implies people working together to suppress a cure. All you really need is a capitalist medical infrastructure
Put on your philosopher's hat and see if you can draw a meaningful distinction between a "capitalist infrastructure" and "people working together to suppress less profitable endeavors."
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 2) by Immerman on Thursday February 04 2016, @02:25PM
Try your own hat and see if you can come up with a meaningful distinction between collaboration and conspiracy.
(Score: 0) by Anonymous Coward on Thursday February 04 2016, @03:09PM
That's easy:
(Score: 2) by JoeMerchant on Thursday February 04 2016, @10:20PM
That's easy:
capitalist infrastructure:
Each one for himself makes the decision, without coordinating with the others. Market forces ensure they come to the same decision.
people working together to suppress less profitable endeavours:
They all coordinate and come to an agreement.
So, if all the major players in a market independently decide to raise prices at the same time - that's not collusion or price fixing, but if they are observed communicating with each other about it it is?
There is so much availability and exchange of information in today's markets that everyone is effectively communicating with everyone else, regardless of whether or not they ever meet face to face, or exchange e-mails or telephone calls.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 2) by compro01 on Thursday February 04 2016, @02:49AM
Polio isn't officially considered wiped out yet; the only disease that is is smallpox.
Only human disease. Rinderpest (a disease related to measles that infected cattle) has also been eradicated.
(Score: 2) by Tramii on Wednesday February 03 2016, @09:14PM
How is that a real hoot?
Remember this? https://soylentnews.org/article.pl?sid=14/09/14/121233 [soylentnews.org]
Sometimes, ignorance is bliss!
(Score: 2) by wonkey_monkey on Wednesday February 03 2016, @10:06PM
are two cystic fibrosis kids like the black and white aliens in star trek that catch on fire when they get near each other?
Well... yeah, they kinda are. Though I think you're mixing up Lokai and Bele (half-black, half-white, both racist; Let That Be Your Last Battlefield) with Lazarus and his anti-matter counterpart (The Alternative Factor).
kids with the inherited lung disease can't [not can't, really - better off if they don't, though] be near each other because they're vulnerable to contagious infections.
There was a story on Casualty/Holby City (two related UK hospital dramas) about a couple who met through a CF support website, but had to keep their physical meetings a secret from their families, who would have insisted they stop seeing each other for fear of one infecting the other.
systemd is Roko's Basilisk
(Score: 2) by wonkey_monkey on Wednesday February 03 2016, @10:23PM
My bad, you were right about the black/white aliens:
As the two aliens fight, their innate powers radiate, cloaking them with an energy aura that threatens to damage the ship.
systemd is Roko's Basilisk
(Score: 4, Interesting) by Anonymous Coward on Wednesday February 03 2016, @08:52PM
- Kids with markers for disease D are a member of set S1
- Kids with disease D are a member of set S2
- A member of S2 cannot be near another member of S2 (I think it's more along the lines of: if you are a member of S2, you are more prone to get any infectious disease and since members of S2 are vulnerable to contracting them, you should stay away from them all - assume they are loaded with disease at all times!)
- Kid K1 is a member of S1, but _NOT_ S2
- Kids K2 and K3 are siblings of one another
- Kids K2 and K3 are members of S1 _AND_ S2
- In the past, both K2 and K3 attended the same school as K1, they attended at the same time
Result
K1 is told not to come back here because at some point, you may become a member of S2 and then easily contract some infectious disease from school even though, right now, you are a member of S1 and not of S2.
Questions
Now, why were K2 and K3 allowed to attend the school at the same time? What sets them apart from K1?
For one, I think that because they would already infect one another at home (since they are siblings), separating them from each other at school wouldn't do anything to prevent this. Additionally, if they are so infection-laden, then sending them to two different schools would now expose two schools to infection-vectors (K2 and K3) instead of only one school (combined force of K2+K3).
The school has multiple goals to satisfy:
1. The health and safety of all its pupils
2. The health and safety of each individual pupil (this is not the same as 1)
3. Provide an education to all its pupils
So the question really is: how prematurely is this school jerking its knee? How quickly or easily does one go from S1 into S2? Are there warnings?
What is the real reason that the school provided for why this kid should not attend?
Lastly, if this is a public school: doesn't the school system have a duty to provide education to the kid? How are they proposing K1 gets his education and how are they accommodating this? I'm ok with the school system saying "you can't go to school X" but then it has to provide the parents (and kid) with an alternative to the parents and kid at the same cost as if the kid DID go to that school.
(Score: 1, Disagree) by JoeMerchant on Wednesday February 03 2016, @08:57PM
If you don't draw that in a simple diagram, nobody (of any decision making level importance) is ever going to expend the mental effort necessary to understand what you've communicated: TLDR.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 3, Touché) by Anonymous Coward on Wednesday February 03 2016, @09:05PM
Sorry, but I don't have the crayons it would take to explain it to you.
(Score: 2) by kurenai.tsubasa on Thursday February 04 2016, @01:53AM
In the spirit of AC's reply, I'd also like to confirm that there is no diagram or PowerPoint presentation which accurately captures GP's post that anybody at any decision making level importance will understand. It's a complicated point that AC makes illustrating multiple fallacies.
I found the length of GP's post to be adequate: terse and to the point, illustrating the complete logical failure happening here, presuming the facts have been presented in good faith.
(Score: 2) by JoeMerchant on Thursday February 04 2016, @03:19AM
Posting from bizarro world.
I completely agree.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @09:09PM
Marker for the disease != suffering the disease. Gene expression is a little more complicated than that.
(Score: 2) by JoeMerchant on Thursday February 04 2016, @03:21AM
Marker for the disease != suffering the disease.
Isn't that what typhoid Mary said?
Hopefully we're a little past that kind of reaction today.
Україна досі не є частиною Росії Слава Україні🌻 https://news.stanford.edu/2023/02/17/will-russia-ukraine-war-end
(Score: 2) by VLM on Wednesday February 03 2016, @09:12PM
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.
Its like running genetic tests on Moslem immigrants in Cologne and if they have genetic markers for arab-ness, that means they're susceptible to being arabs, which means they would be more likely to rape the german women, so we should kick them out purely for genetic marker reasons, not because of who they are, or what they've actually done or not done. Pre-crime enforcement, more or less. This is assuming the german authorities don't want german women to be raped, which of course is false as has been demonstrated, which complicates the example.
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @10:03PM
"moslem" ey... ?
(Score: 2) by darnkitten on Thursday February 04 2016, @01:00AM
Probably a generational thing--When I was younger, "Moslem" was in all the textbooks I ever read. For that matter, some of the older (usu. British) books I read used "Musselman" and other books from the late 1700's used "Mohammedan" or "Mohametan."
(Score: 3, Funny) by Alfred on Thursday February 04 2016, @02:43PM
Don't they like make applesauce or something? My racist heritage will demand I find a new brand now.
(Score: 2) by compro01 on Thursday February 04 2016, @02:49AM
"Moslem" is a valid romanization of the Arabic word, though it is generally considered to be outdated.
(Score: 2) by frojack on Wednesday February 03 2016, @09:34PM
Now, why were K2 and K3 allowed to attend the school at the same time? What sets them apart from K1?
k2 and k3 are siblings, and live in the same household, and thus any risk to each other from attending the same school is moot.
No, you are mistaken. I've always had this sig.
(Score: 1, Insightful) by Anonymous Coward on Wednesday February 03 2016, @10:40PM
But yet their parents get to whine and complain to get another kid WHO DOESNT EVEN HAVE THE DISEASE kicked out of school.
If your kids are the ones at risk, it is your job to keep them from potentially dangerous situations. Its like peanut allergies, if your kid is so sick that even sniffing a peanut from twenty paces will kill him then you need to home school that kid.
(Score: 2) by frojack on Thursday February 04 2016, @03:00AM
This kid is not at risk. That is the whole point.
Further he presents no risk to the others. He does not have cystic fibrosis. Please read the story.
No, you are mistaken. I've always had this sig.
(Score: 4, Insightful) by BsAtHome on Wednesday February 03 2016, @09:03PM
How did the school have access to the genetic profile of the pupil?
_That_ is the real question here.
(Score: 5, Informative) by VLM on Wednesday February 03 2016, @09:16PM
How did the school have access to the genetic profile of the pupil?
Its in the article, the parents were dumb enough to tell them. Like cops, don't tell them anything they don't need to know.
(Score: 1) by Rich26189 on Wednesday February 03 2016, @09:17PM
I don't know that the school has access to his genetic profile but, according to TFA, his parents disclosed that information to the school:
(Score: 2) by frojack on Wednesday February 03 2016, @09:36PM
So it would seem that his parents violated his medical privacy.
No, you are mistaken. I've always had this sig.
(Score: 2) by GungnirSniper on Wednesday February 03 2016, @09:56PM
Right. And by telling the school this info, had anyone gotten seriously ill or died from it, a litigious bastard could use that form to take the school for millions.
Tips for better submissions to help our site grow. [soylentnews.org]
(Score: 4, Informative) by Freeman on Wednesday February 03 2016, @10:46PM
His parents didn't violate his medical privacy, because they are responsible for him. It's the same in that you don't violate your own medical privacy when you freely disclose information about yourself.
Joshua 1:9 "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee"
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @11:55PM
Nonsense. His parents violated his medical privacy. It doesn't matter that they were responsible for him; it's still his privacy, as it pertains to him.
(Score: 2) by Freeman on Friday February 05 2016, @05:57PM
You can think of it technically as a violation of his medical privacy, but according to the law his parents are responsible for him. The parents have the right to disclose his medical history to third parties without violating his rights according to the law. Most children aren't capable of making informed decisions and are protected under the law for good reason. Which is also why you can't make a legally binding agreement with a child without their parents' / legal guardians' consent.
Joshua 1:9 "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee"
(Score: 2) by Whoever on Thursday February 04 2016, @03:51AM
And then the school told other parents. That's the real problem.
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @09:18PM
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @09:42PM
Then why the hell were they asked that kind of information?
(Score: 0) by Anonymous Coward on Thursday February 04 2016, @01:54PM
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @09:23PM
Parents 1 and 2 of kid 1 mentioned it to the school, who (IMHO) violated their duties in this regard and told parents 3, 4, 5 and 6 of kids 2 and 3 about kid 1 and they flipped out, forcing the school's hand. Sounds pretty straight forwards to me, the school was at fault for telling parents 3, 4, 5, and 6. Like your waitress telling the neighboring table you just told her you're HIV positive and they flip out.
(Score: 3, Funny) by wonkey_monkey on Wednesday February 03 2016, @10:20PM
parents 3, 4, 5 and 6 of kids 2 and 3
Kids 2 and 3 are siblings, so I have no idea what's going on in that house.
systemd is Roko's Basilisk
(Score: 1, Informative) by Anonymous Coward on Wednesday February 03 2016, @10:37PM
> Like your waitress telling the neighboring table you just told her you're HIV positive and they flip out.
Not like that. Your waitress doesn't really have any responsibility to maintain your privacy, especially if you tell them something irrelevant to serving food. But a school has all kinds of responsibilities for the privacy and security of the children which attend - in loco parentis cuts both ways.
(Score: 1, Insightful) by Anonymous Coward on Wednesday February 03 2016, @09:33PM
Medical science is barely a science, if at that. But mix that with American legal system, we have the disaster we do now.
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @10:03PM
It's medical research, not science. It is mostly pseudoscience but some people are doing science under that label (something less than 1/1000 from the conferences and papers I have observed).
(Score: 3, Interesting) by Anonymous Coward on Wednesday February 03 2016, @09:58PM
This is going to cause a quite the scene when they realize some people (mostly non-whiteskins) with sickle-cell can be carriers of malaria and may need to be kept separate from those without it (mostly whiteskins): https://en.wikipedia.org/wiki/Sickle_cell_trait [wikipedia.org]
(Score: 3, Interesting) by MrGuy on Wednesday February 03 2016, @10:59PM
As I understand it (IANAL), the ADA requires employers, public institutions, etc., to make reasonable accommodations [wikipedia.org]for people with disabilities. As I understand it, that requires reasonable mitigating steps where possible, not a blanket prohibition on ever treating a disabled person differently. Wheelchair ramps, signs available in braile, screen readers for computers are all reasonable accommodations. Having an elevator in a building is a reasonable accommodation, but replacing all stairs with elevators so a disabled person never needs to take a longer route isn't required. If they want to claim the plaintiff is disabled, what's the reasonable accommodation that could have been made in this case? Requiring one student to go to another school is a hardship, but it's not clear how they expect the school could have mitigated to prevent that hardship if students with the same condition need to be separated from each other.
If they claim he's not sick, but merely has the POTENTIAL to be sick, you're adding a whole new protected class to the ADA - people who have the POTENTIAL to be disabled in the future because of their genes. Not saying it can't support that reading, but it's not clear that's an obvious extension. That's not to say the behavior isn't "discriminatory," but not all discriminatory behavior falls afoul of the ADA - someone who's African-American and is discriminated against is arguably being discriminated against because of their genes, but being African-American isn't generally considered a "disability" under the ADA. There are other laws that cover discrimination, and it's not clear (to me anyways) that the ADA is meant to cover this situation.
There is no Right to Privacy in the first amendment. The first amendment covers the right to free speech and free religion. Nor is there an explicit Right to Privacy in any amendment to the constitution (or the constitution itself). The notion of a constitutional "Right to Privacy" is a legal theory that's been accepted in multiple cases by the Supreme Court. The theory is that the overall tenor and purpose of the Bill of Rights is BASED on an implicit right to privacy, and the individual amendments of the Bill of Rights codify the most important specific freedoms required for a right to privacy.
This might be pedantic - the notion of a constitutional right to privacy IS accepted Supreme Court precedent. But people who refer to it as a "First Amendment Right" don't know what they're talking about. More problematically, people who refer to a specific "right to privacy" seem to think that the idea that the notion and extent of such a right are written down somewhere. Not really true. And so it's unclear what the extent of such a "right" really are, and where the limits are. Does it violate the "right to privacy" to publish an Amber Alert with the license plate number and name of someone who's only suspected of a crime? Does the individual's right to privacy trump the interest of public policy, and if so, how?
A better case would be made by looking at ACTUAL laws that set ACTUAL limits on what can and cannot be done with medical data. The problem there is that those laws don't actually support the lawsuit. HIPAA [hhs.gov] and friends explicitly cover privacy and disclosure of medical information. However, they don't avail much here. Unless you want to try and call the medical practicioners within a school system a separate "entity" than the school system itself, it's hard to call information disclosed on the school's medical form illegally disclosed to the school. Even if in general that were true, there are exceptions to the disclosure rule for reasons of Public Health and also for Serious Threat to Health. It would be reasonable to argue that one or both of these exceptions apply when there's a need to consider the potential threat to the OTHER children in the school district with Cystic Fibrosis.
Unless you want to try and strike down the HIPAA exceptions as unconstitutional violations of a "right to privacy," I don't see a lot of success on the argument that a notional "right to privacy" is so sacrosanct as to prevent disclosure of a potentially life-threatening concern. I suppose you could have a debate on how "imminent" the concern is given the plaintiff was only DISPOSED to cystic fibrosis, as opposed to having the disease, but now you're into a medical conversation on reasonableness, not a constitutional question about "rights."
(Score: 0) by Anonymous Coward on Wednesday February 03 2016, @11:58PM
The fourth amendment establishes a right to privacy from the government, even if it doesn't explicitly mention privacy. Its logical effect is that is protects your privacy.
Does the individual's right to privacy trump the interest of public policy, and if so, how?
It does if the "public policy" violates the fourth amendment.
(Score: 2) by MichaelDavidCrawford on Thursday February 04 2016, @02:17AM
even if they're not really disabled.
Yes I Have No Bananas. [gofundme.com]
(Score: 2) by Gravis on Wednesday February 03 2016, @11:31PM
the district violated the Americans With Disabilities Act
it doesn't make sense that it would be a violation of the Americans With Disabilities Act if he isn't disabled. this is more like a medical quarantine.
and Colman's First Amendment right to privacy.
so here's the first amendment but where does it say anything about privacy?
Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.
(Score: 5, Interesting) by compro01 on Thursday February 04 2016, @02:55AM
it doesn't make sense that it would be a violation of the Americans With Disabilities Act if he isn't disabled
The ADA also protects against discrimination on the basis of a perceived disability. See Wilson v. Phoenix Specialty Manu. Co. Inc. for an example.