GINA Goes to School

The recent publicity around Chadam v. Palo Alto Unified School District is "a very important reminder" of the limits of the Genetic Information Nondiscrimination Act of 2008, writes lawyer and policy expert Jennifer Wagner.

"The [federal] statute only provides genetic nondiscrimination rights in two contexts: health insurance and employment. It does not extend any protections from nondiscrimination in education," Wagner notes at the Genomics Law Report blog. "But, interestingly, California does." Wagner, who was previously a postdoctoral fellow at Duke University's Institute for Genome Sciences & Policy, is now the associate director of bioethics research for Geisinger Health System.

At the center of Chadam v. PAUSD is a boy who carries a genetic variant associated with cystic fibrosis. The boy's parents, James and Jennifer Chadam, disclosed his carrier status to the PAUSD in school forms they had file to register him for middle school. However, a teacher disclosed that the Chadam boy had CF to parents (Mr. and Mrs. X) of other students with the disease. And so, for the safety of their children, Mr. and Mrs. X and a doctor wrote to the school to request the Chadam boy's transfer.

Although their son is a carrier of a CF mutation, the Chadams claim he never had the disease. Because CF can cause serious and fatal lung infections, those with the disease can cross infect others with the disease. However, CF mutation carriers who do not have the disease don't have this cross-infection risk.

Based on the letter from Mr. and Mrs. X and the doctor, the school chose to transfer the boy to a nearby school. However, the Chadams immediately sought an injunction, and a settlement was reached allowing the boy to remain in the original school. Subsequently, the Chadams filed a lawsuit against the PAUSD, seeking redress for the school's disclosure of their son's medical information, which labeled him as having a disease they maintain he never had, and for the decision to transfer him, which resulted in him missing school days. However, the trial court dismissed their complaint and concluded that PAUSD had a reasonable basis for taking action and for thinking the boy posed a public health risk to other students with CF.

The Chadams are now appealing the trial court's decision and asking the Ninth Circuit Court of Appeals to decide that their son's rights were violated. Wagner points out a number of laws that come into play — the Americans with Disabilities Act, the Family Educational Rights and Families Act, GINA, and CalGINA. The Department of Justice has penned an amicus brief on behalf of the Chadams, arguing that the facts supplied by them to the PAUSD invoke ADA and that the case should be remanded for further proceedings.

Meanwhile, CalGINA, may also be a consideration. That law amended the Unruh Civil Rights Act and affords Californians protection from genetic discrimination in broader contexts than the federal law, such as in housing, mortgage lending, business, emergency medical services, and programs that receive state funding, which would cover education.

According to Wagner, it's not clear why CalGINA hasn't been raised by plaintiffs, but she notes that based on how the Ninth Circuit Court of Appeals decides the case could have far-reaching implications. "It is possible that a loosely crafted court decision could also have implications for entirely different scenarios (including, for example, school actions to protect students from unvaccinated students or students with perceived mental health conditions)," Wagner writes.

Additionally, "it must not be forgotten that the information disclosed here was factually incorrect — the boy does not have and was never diagnosed with CF — and that the subsequent actions taken were allegedly driven by the perceived risk that boy's perceived (albeit mistaken) health status posed for others."

Wagner, ultimately, is of the opinion that this case should have been long settled. "Why the PAUSD is fighting this is beyond comprehension. Making a decision to transfer a student on the basis of genetic information alone defies logic, scientific fact, and law (even if ultimately the transfer never occurred)," she writes. "The perception that CF carrier status puts anyone else at risk, including individuals with CF, is simply indefensible."

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Comments

Fri, 02/05/2016 - 1:18pm

Submitted by dbednarik

CF is not contagious - healthy kids cannot contract the secondary bacterial infections either. What's wrong with this article?

Fri, 02/05/2016 - 1:35pm

Submitted by LilyAnn9

Nothing - it's common treatment for individual's with CF. If individual A with CF is infected with bacteria Y and individual B with CF is infected with bacteria Z, then they can cross infect each other, even if healthy individuals would be unlikely to be infected with either Y or Z. This is why it's advised that individuals with CF remain physically distanced from each other. If both kids in this case actually had CF, it might have been to both of their advantages to take some sort of action to remain apart. That's not the issue here, it's the fact that one child wasn't actually affected and that PHI was released inappropriately (among other things...).

Fri, 02/05/2016 - 1:40pm

Submitted by redplanet

Was that not clear?

Fri, 02/05/2016 - 1:47pm

Submitted by LilyAnn9

The children of Mr. and Mrs. X had cystic fibrosis.

Fri, 02/05/2016 - 3:47pm

Submitted by redplanet

You don't understand the difference between "having" CF and having a genetic mutation. Google it. Or re-read the article - no one had CF.

Fri, 02/05/2016 - 4:45pm

Submitted by LilyAnn9

Please read the article carefully -- the whole reason Mr. and Mrs. X asked that the boy be transferred was because their children actually did have CF. Otherwise there was no reason to fear/care that a child with CF was at the school (and yes I know that the boy did not actually have CF, but Mr. and Mrs. X's kids did).

I realize you have some personal experience with CF, but I'm a geneticist and I can assure you from your comment further down that while you know a bit about the subject, you really should seek out the care of a genetic counselor because many of the things you think you know about CF are in fact incorrect.

Fri, 02/05/2016 - 6:40pm

Submitted by redplanet

I'm unclear where you got that idea. 2 of my adult kids are carriers of a rare mutation that can ONLY become CF is they have children with someone who has the same mutation.

You might want to check the Cystic Fibrosis pages for how this works:

QUOTE: "If you are a CF carrier, you do not have to worry that it will someday turn into CF disease. This can never happen because you have one normal CFTR gene. Being a CF carrier will not cause you to be ill or require you to seek treatment. It will not shorten your life or limit you in any way except for making decisions about child bearing."

By Mr/Ms X I see you mean the CF kids parents not the carrier. True, this kids had CF. Also true - there was NO reason for a transfer as a carrier cannot harm or be harmed by the interaction. As a geneticist you should be shouting this from the rooftops. And you should be concerned that the parents and school district were so uninformed. That needs to be remedied.

Mon, 02/08/2016 - 12:27am

Submitted by ericl33t

Sorry redplanet, but according to the article (and the language is admittedly a little unclear):

- The Chadham boy is a CARRIER of cystic fibrosis (still has one normal copy of the CFTR gene)
- The children of Mr and Mrs X are AFFECTED by cystic fibrosis (have zero normal copies of the CFTR gene)

LilyAnn9's explanation of why individuals affected by cystic fibrosis might be kept apart is also correct.

Mon, 02/08/2016 - 1:31am

Submitted by redplanet

Please - learn the difference between having a genetic mutation and having a disease.

He carries a gene that, if he reproduces with someone else with the same mutation, MAY produce a child with CF. This is a world of difference from being a carrier of CF. A carrier of the gene is different thing altogether than a carrier of CF.

I live in Palo Alto, I remember all the newspaper articles and interviews with his doctor. Here is his doctor on the topic: "Colman carries the genetic mutations for cystic fibrosis - but his doctor and parents say he does not have the disease."

If this is too complex for you to understand, go to the cystic fibrosis foundation and they will explain it to you. You can find this issue on their website where they clearly differentiate a gene mutation carrier from a disease carrier. They clearly spell out (and I quoted them) that there is ZERO issue of cross contamination with someone who doesn't have the disease only a mutation.

Mon, 02/08/2016 - 7:20am

Submitted by mdan32

I think the confusion here is coming from the different connotations associated with the word 'carrier'. https://en.wikipedia.org/wiki/Disease_carrier.
The Chadam boy is correctly called a 'carrier', but this does not mean he can get or transmit CF (except by having children with another carrier).
This is not to be confused with being a carrier of an infectious disease, where this type of carrier can transmit the disease and can themselves go on to show symptoms if they were, for example, to become immunocompromised.

Incidentally redplanet, I agree with LilyAnn9 that you and your family should speak to a genetic councilor because while you are quite well informed it still sounds like you are wrong about some important factors. The most important was when you said that "2 of my adult kids are carriers of a rare mutation that can ONLY become CF is they have children with someone who has the same mutation". I think that is incorrect, I think it is possible for their children to have CF if there partner has ANY CF mutation, not just the SAME one. That would be called a compound heterozygous mutation and it can still cause CF. I'm not attacking you, it sounds like you've done pretty well learning from online resources, but to make sure you haven't misinterpreted anything you should go to a qualified expert (which incidentally I am not - so none of this should be taken as medical advice, just recommendation that you seek some).

Fri, 02/05/2016 - 1:25pm

Submitted by scrosby

...shall inherit the Earth

Fri, 02/05/2016 - 1:27pm

Submitted by Kaufman_2062676

Approximately 1 in 30 caucasion Americans carry a mutation for CF so there is close to one student in every class in the US. One in seven individuals carry a significant mutation in other hereditary disease causing genes. The misinformation in this case and overall lack of scoence knowledge by courts and legal systems puts everyone at risk for misinformed actions.

Fri, 02/05/2016 - 1:38pm

Submitted by redplanet

CF carrier status, as noted in your last paragraph is meaningless in this context. It is no different than the color of the child's eyes. A child's brown eyes are in no danger of turning the other kids eyes green. Palo Alto, home to so many genetics experts, never publicly raised a word in protest in the local Palo Alto newspaper as it too perpetrated the myth that having a CF mutation is a danger to others. This story was front page news several times. 2 of my 3 children have CF mutation carrier status (why not the third? different father in case it wasn't obvious). They went through the Palo Alto public school system long before the days of OTC genetic testing. (Thank you,local from Palo Alto, Ann Wojcicki, for that! ). When we found out my 2 adult kids had a mutation (from 23andme before the FDA got scared they were being ignored as the future asserted itself) we researched it and discovered it was the most rare and the most severe of all the mutations. They know that if they choose to have more children, they must have the potential partner tested to see if it is a mutation match. The grandkids know this too - it is fascinating to listen to them speak of their CF carrier status as easily as they do the future of virtual reality or autonomous cars or if Kurzweil is right. No big deal - it is what it is. So, Palo Alto School District - any comment? What would you do to my kids if they were still in school? And do you think we should have warned their colleges? Especially the UC ones?

CF carrier status puts no one at risk so why did PAUSD not know this? This story comes up like a bad penny over and over. How, how, could no one advise them? Stanford genetics department - where were you on this?

Sometimes I despair about this area if it is considered the best and the brightest.

Fri, 02/05/2016 - 1:57pm

Submitted by gary.palmer_2035882

Why did the parents divulge the CF carrier status in the first place? Were they confused? They seem to have treated it as a disease. I agree the Palo Alto School District's response is just short of unbelievable....

Fri, 02/05/2016 - 3:43pm

Submitted by redplanet

Apparently the parents were under the impression that a genetic mutation is medical history. They were new to the district in 2012 (or 2011 - not sure) and put this info on their child's health form. Despite the fact of zero consequence to others this seemed to not matter to either parents or the district. The newspaper articles would often quote a PAUSD official as discussing the danger of bacterial cross contamination. I hope they use this in science classes as object lesson - maybe bring Anne in from 23andme to teach the lesson.

Fri, 02/05/2016 - 3:50pm

Submitted by dbednarik

They had the mutation for CF (and potential predisposition) - They did not present any clinical CF disease however.
Perhaps the editor can modify the article better for clarity..

Fri, 02/05/2016 - 6:43pm

Submitted by redplanet

Carrier status does not mean a predisposition for CF. See Cystic Fibrosis Foundation for clarification for how this works.

Here's one quote - "If you are a CF carrier, you do not have to worry that it will someday turn into CF disease. This can never happen because you have one normal CFTR gene. Being a CF carrier will not cause you to be ill or require you to seek treatment. It will not shorten your life or limit you in any way except for making decisions about child bearing."

Mon, 02/08/2016 - 9:54am

Submitted by elimedei_2005147

Why didn't Mr. and Mrs. X just transfer their own children?

Sun, 05/08/2016 - 8:19am

Submitted by omniscience_2076775

I think there may be confusion by the court/lawyers which is fueling some of this controversy. If the boy is merely a carrier of the mutated gene,there would be no need for his constantly being monitored by a physician as this case seems to indicate is going on. So, from reading the case (I am a lawyer trained in health and bioethics) and having read both the court opinion and the legal briefs, I don't think the decision makes it quite clear what the situation is --

However, one overriding fact is clear - the boy is not diagnosed with CF now - and hence cannot pose a danger to anyone NOW. Any decisions made by the school were based on misunderstanding of the disease and its genetics- and this is the critical problem - they made a decision both on course of action and disclosure - based on ignorance.
Further, Should he be a carrier with the disease (not merely the gene) he may well pose a threat - in the future --. At that time the question becomes a. whose rights supersede whose in terms of attendance, and b. why was it necessary for X's parents to know that a particular and named child is a potential hazard. Merely notifying them that a (unnamed) child with CF is now attending class with your child would have been sufficient to protect the X's children and allow their parents to remove their child, should they so desire - or to ask the school to remove the other child if they were being self-protective.
Morever. c. assuming in fact that the child does later manifest the disease - isn't there a less onerous way to accommodate both children - face masks perhaps. and d. at the very least, dismissing the Chadam boy in front of his classmates (he was publicly asked to leave - pulled out of class) is just plain cruel.

Mon, 05/09/2016 - 5:36am

Submitted by redplanet

To get the disease you have to have inherited the mutation from both parents - - and he inherited ONE.

To quote a genetics site on CF:

"A person needs to get a defective copy of the CFTR gene from both mom and dad to end up with CF. When both copies have to be damaged to cause a disease like CF, that disease is called recessive.

If you have just one damaged copy of the CFTR gene, then you are called a "carrier" for CF. Carriers do not have CF symptoms, although they can pass their broken CFTR gene down to their own kids. "

I know all about this - my kids went through the Palo Alto school district and college and had the CF mutation. We never knew because Anne had not yet brought out her wonderful 23andme OTC test. (meanwhile her mom was teaching my kids, but that's neither here nor there). As soon as 23 arrived we all got tested. I am not a carrier. Therefore it must have come from their father. They will never have CF and neither will this boy. Why this is so hard to understand I don't know. My kids are adults now and laugh about this situation: they cannot believe how PAUSD is handling this non issue.

This makes as much sense as someone afraid their child will catch green eyes because I am in the class. I have green eyes but I can't pass it on to anyone else. My kids have the mutation and are carriers of the mutation, NOT THE DISEASE,

Mon, 05/09/2016 - 6:21am

Submitted by omniscience_2076775

Sadly, while you are absolutely correct about the genetics, the case description of what happened is quite unclear. The court used the term "carrier" which traditionally is used to mean inheritance of one gene (and hence incapacity to manifest the disease) - but it appears that they may have misused the term and the child may in fact be genotypically susceptible (i.e., have two copies). That's the sad part - we really don't know what the genetic status is - all we know his that he has not manifested the disease. The attorneys are arguing that fact alone should be determinative -
The court papers divulge that the child is being constantly monitored - which suggests in fact that he may well have two copies of the mutation.

Mon, 05/09/2016 - 6:21am

Submitted by omniscience_2076775

Sadly, while you are absolutely correct about the genetics, the case description of what happened is quite unclear. The court used the term "carrier" which traditionally is used to mean inheritance of one gene (and hence incapacity to manifest the disease) - but it appears that they may have misused the term and the child may in fact be genotypically susceptible (i.e., have two copies). That's the sad part - we really don't know what the genetic status is - all we know his that he has not manifested the disease. The attorneys are arguing that fact alone should be determinative -
The court papers divulge that the child is being constantly monitored - which suggests in fact that he may well have two copies of the mutation.

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