News


Palo Alto DNA-privacy case could have wide implications

Parents of Jordan student say school district violated Americans with Disabilities Act in divulging genetic marker

An appeals case filed by a Palo Alto couple could have far-reaching impacts regarding whether personal medical information could be revealed and if it may be used to exclude individuals from schools, jobs and other venues, even if the person does not have symptoms of a disease.

Parents James and Jennifer Chadam allege the Palo Alto Unified School District violated their son's First Amendment rights to the privacy of his medical and other personal information and the Americans with Disabilities Act when a teacher allegedly divulged that his son carries a genetic marker for cystic fibrosis. The boy, Colman, does not have the disease, his parents said in court documents filed in the U.S. Ninth Circuit Court of Appeals on Jan. 14.

But because Colman carries the genetic marker, and that information was made public to the family of two other students who actively have the disease, the school district forced Colman to leave Jordan Middle School involuntarily after the parents of the other two students complained, according to court records. The school district claimed it made the decision to send the Chadams' son to Terman Middle School allegedly based on a doctor's recommendation; but that doctor has never examined Colman nor spoken with his parents, according to the appeal.

The school district removed Colman from Jordan when he was 11 years old in 2012, but he returned to the school after the Chadams sought an injunction in Santa Clara County Superior Court. The Chadams and the school district reached a settlement in that case whereby Colman could return to Jordan, provided that protocols to avoid cross-infection among cystic fibrosis patients were followed.

According to the Cystic Fibrosis Foundation, there is a critical distinction between a person who is a carrier and has one copy of a defective cystic fibrosis gene and a person who has cystic fibrosis. Cystic fibrosis is a genetic disease in which a person must have inherited two defective CF genes -- one from each parent -- in order to have the disease. As a carrier, Colman does not have the disease and therefore does not pose any cross-infection threat to others with cystic fibrosis, according to the foundation.

Cystic fibrosis causes thick, sticky mucus in the lungs, pancreas and other organs. Lung congestion can lead to infections that are easily transmissible between persons with the disease, according to the foundation. The organization's Infection Prevention and Control Guidelines on cross infection apply only to individuals with the disease.

The Chadams filed a federal lawsuit in September 2013 to recoup their legal fees and for unspecified damages. The ordeal caused the family embarrassment and humiliation, created medical issues and financial costs, according to the lawsuit.

But the school district sought to have the case thrown out, and the lower federal court agreed. The district's conduct in removing Colman from Jordan did not violate the ADA because the district acted in what it claims was good faith, based on medical advice the district received, the trial court ruled. The court found that the school district had not denied the Chadam's son access to any service, program or activity because it regarded him as disabled, but instead because it believed, based on medical evidence, that his condition was "a physical impairment" that posed a health risk to other students, according to court documents.

But Stephen Jaffe, the Chadams' attorney, argued in the appeal that such reasoning has been rejected by the U.S. Supreme Court, which ruled against discrimination based on the contagious effects of a physical impairment as far back as 1987. Accepting such discrimination would be inconsistent with the basic purpose of Section 504 of the ADA, which is to ensure that handicapped individuals are not denied jobs or other benefits because of the prejudiced attitudes or the ignorance of others, the Supreme Court determined in the case School Board of Nassau County, Fla. v. Arline, Jaffe argued.

"The trial court order suggests that, under the factual circumstances presented in this case a school district's real or imagined concern over potential safety issues overrides any countervailing constitutional consideration to be given to an individual's First Amendment rights to the privacy of his medical and other personal information. That is a dangerous holding against which a strong contrary public policy exists," Jaffe wrote.

"Affirming the district court's ruling in this case would open a wide gap in the wall of privacy protection the law presently affords personal genetic information. It will implicitly permit unqualified non-medical persons such as school districts, insurance companies and employers to base life-altering decisions on private genetic information. It will cause the public to hesitate or refuse to get genetically screened when to do so may be in their best interests or would assist medical research. The negative ripple effect of the trial court's holding ... is almost infinite in the possibilities of its adverse consequences and variations."

When Colman was diagnosed with a life-threatening cardiac defect, which was repaired through surgery, a genetic screening revealed that he carries certain genetic markers associated with persons who may or may not develop cystic fibrosis. Further testing showed that he did not have the disease, and he was monitored regularly, according to court documents. More than 75 percent of people with cystic fibrosis are diagnosed by age 2, according to the Cystic Fibrosis Foundation.

The family moved to Palo Alto in 2012, registering their two sons at Jordan. Jennifer Chadam provided a "Report of Health Examination For School Entry" to the district for Colman, which, the lawsuit maintains, contained personal and privileged medical information.

One of Colman's teachers allegedly called his parents in late August 2012 inquiring about his medical condition. About three weeks later, a teacher conducting a parent-teacher conference with the parents of two other students who have cystic fibrosis, identified as Mr. and Mrs. X in the complaint, disclosed that Colman "had cystic fibrosis," according to the complaint.

That set off demands by Mr. and Mrs. X to remove Colman from Jordan for the safety of their own children, according to the appeal documents. Mrs. X allegedly called Jennifer Chadam and "interrogated" her about Colman's medical history and condition. She allegedly asked how long the Chadams intended to live in Palo Alto and whether they owned or rented their home, according to the complaint.

Thereafter, the school presented a letter from a physician recommending that Colman should be removed from Jordan for the safety of Mr. and Mrs. X's children. Mr. and Mrs. X removed their children from Jordan, but they later wanted Colman to be removed from the school so their children could return, according to the complaint.

The school district, after meeting with the Chadams, claimed it had a letter from an unnamed Stanford physician recommending that Colman should be removed from the school, but the Chadams said the physician had never spoke to them and had never seen Colman.

A longtime physician of Colman's who had seen the boy for five years prior to the family's move to Palo Alto wrote a letter around that time refuting that Colman posed any danger.

"It is unfortunate this boy has been given the label of CF and is now recognized (sic) that there are probably many of these children in the community who will be diagnosed as CF carriers but have a second minor gene lurking in the background, but no disease," he wrote.

Comments

5 people like this
Posted by more to the story
a resident of Another Palo Alto neighborhood
on Jan 25, 2016 at 8:10 am

It's always sad when things don't go smoothly for students in our schools and this case is no exception for both of the families and their children.

That said, the Chadam's lawyer makes a perplexing argument: it is "dangerous" for a court to rule that concern over the safety of a student trumps "an individual's First Amendment rights to the privacy of his medical and other personal information" because that ruling will make people reluctant to be genetically screened.

If the school has to choose -- concern about a potentially urgent life-threatening situation for a student vs. privacy protection - public policy would be best served by picking life first IMHO. That may make people more reluctant to share private genetic information with others, something lots of folks are wary of doing already, but I can't see how it would make them less likely to be genetically screened when that information could make the difference between life and death for themselves and their children too.

Here, it took the district a few weeks to figure out new protocols and then the students returned to the same school. The Chadam's seek damages for the "embarrassment and humiliation" they endured during this period.

I get that, except for this: in 2012, while this was unfolding, the Chadams broadcast their story on national TV on the Today Show and to the San Francisco Chronicle.

Web Link Web Link

Having your young child raise awareness about cystic fibrosis and the benefits and perils of genetic testing is an admirable and character-building thing for a parent to set up and support, but it does seem to undermine their legal claim that they were damaged; people who are embarrassed and humiliated don't typically agree to be interviewed by NBC News so that the embarrassing and humiliating details will be broadcast nationwide.

Bottom line: this is a tale of two families and a school district who all acted with an "overabundance of caution": Chadam's for disclosing, the other family for removing their child from school, and the district for its "not willing to risk [what it thought at the time was] a potentially life-threatening illness among kids." Web Link



46 people like this
Posted by Missing the point
a resident of Jordan Middle School
on Jan 25, 2016 at 8:21 am

Everyone seems to be missing an important point, especially PAUSD: If the boy carries the gene,he is a CARRIER who can possibly genetically pass CF to his progeny. It does not mean he actually has the disease.

He has no symptoms. They would be very obvious if he had them: coughing, difficult breathing, severe fatigue, near-constant sweating, digestive problems, fevers, among others. Most of these symptoms are caused by the enormous amounts of mucus and phlegm that victims of the disease have in their lungs and digestive symptoms. It is this mucus that carries bacteria and makes them contagious. It also requires nebulizers, medications, and oxygen tanks. Presumably this child has need of none of these things

The child's Doctor could explain this to the district, but they have chosen not to listen. For six years, as a teen, I babysat my own doctor's son who had, and died of cystic fibrosis. One of my closest long-time friend had a sister who died of CF at age 25.
NEITHER of these people were treated or isolated the way the Chadam's son has been--and both of these people had active cases of CF.

PAUSD has acted reprehensibly!


22 people like this
Posted by Caleb
a resident of Crescent Park
on Jan 25, 2016 at 11:21 am

Saw this story last week in another local paper. After reading it, I wondered why any parent would share confidential medical information with PAUSD considering how they blabbed it to everyone else. It'd be nice to see Max McGee respond to this by ordering his employees not to talk about students' private medical information, but I won't hold my breath.


5 people like this
Posted by Link
a resident of Jordan Middle School
on Jan 25, 2016 at 6:26 pm

Is there a link to the legal filings in the case?


13 people like this
Posted by Hmmm
a resident of another community
on Jan 25, 2016 at 7:21 pm

Wow! I'm not a JD but based in the laws of common sense I would think the school would know not to reveal private medical info to other parents AND that having a genetic marker does not mean one has a disease. Wrong on many levels. And then to try to get the lawsuit thrown out? How about accepting you made a huge mistake and apologizing? To err is human, to deny American. (In a bad way)


12 people like this
Posted by Adam
a resident of Downtown North
on Jan 25, 2016 at 8:32 pm

Why would any parent share their kid's private medical info with the district with what happened here?


6 people like this
Posted by musical
a resident of Palo Verde
on Jan 26, 2016 at 12:19 am

Is everyone's vaccination status private? Or can they post it online?


11 people like this
Posted by Penny Wise
a resident of Another Palo Alto neighborhood
on Jan 26, 2016 at 2:01 am

It is established by strong research that person-to-person infections are significantly reduced when districts adopt indoor air quality management plans, such as the EPA's tools for schools. PAUSD's facilities bond promises in its specifications that the construction would include improving indoor air quality. The California PTA recommends districts adopt such plans, too. PAUSD actively rejected doing so, even while all this was going on.

Did all the other kids getting chronic bronchitis, cough, and pneumonia not matter while this kid with no disease deserved persecution?

I'm flabbergasted that the district would go after this family like this with no reasonable basis, all the while ignoring a major source of infection risk increase by refusing to follow best practices for air quality in facilities.


5 people like this
Posted by Penny Wise
a resident of Another Palo Alto neighborhood
on Jan 26, 2016 at 2:02 am

It is established by strong research that person-to-person infections are significantly reduced when districts adopt indoor air quality management plans, such as the EPA's tools for schools. PAUSD's facilities bond promises in its specifications that the construction would include improving indoor air quality. The California PTA recommends districts adopt such plans, too. PAUSD actively rejected doing so, even while all this was going on.

Did all the other kids getting chronic bronchitis, cough, and pneumonia not matter while this kid with no disease deserved persecution?

I'm flabbergasted that the district would go after this family like this with no reasonable basis, all the while ignoring a major source of infection risk increase by refusing to follow best practices for air quality in facilities.


8 people like this
Posted by Stephen Jaffe
a resident of another community
on Jan 28, 2016 at 1:15 am

The story, while mostly accurate, omits a critical fact. The United States Department of Justice, Office of Civil Rights, and the United States Department of Education have filed a joint amicus curiae (Friend of the Court) brief with the 9th Circuit Court of Appeals. That brief strongly supports the Chadams' position in the appeal proceeding and requests the appellate court reverse the lower court's erroneous ruling.

Stephen R. Jaffe
Counsel for the Chadams


7 people like this
Posted by CF Parent
a resident of Another Palo Alto neighborhood
on Feb 10, 2016 at 1:52 am

I am flabbergasted that intelligent people in an affluent school district have conducted themselves like a bad episode of Maury.

This is simple stuff that is taught in classroom biology and science...and a school district, of all organizations, would not even follow it's own lessons.

The CF gene is recessive, like blue eyes or blond hair. A child born with brown eyes may have one recessive gene for blue eyes...BUT WILL NEVER HAVE, OR GET, BLUE EYES. A child born with brown hair may have one recessive gene for blond hair...BUT WILL NEVER HAVE, OR GET, BLOND HAIR.

Ok, so a child born without Cystic Fibrosis may have one recessive CF gene...BUT WILL NEVER HAVE, OR GET, CYSTIC FIBROSIS!!

For any moron to suggest that a person who may have one recessive gene for CF, can become or develop CF, may just as well advise others to not get close because their stupidity is contagious!

And, while the Palo Alto Scool District is evaluating their gross incompetence...ponder this. The only way for a child to have CF is to be born with two recessive CF genes. The child would receive one recessive gene from each parent! These very same parents have one recessive CF gene!!!

So, geniuses at Palo Alto School District...the Chadam boy has one recessive CF gene equally as each parent of the students with Cystic Fibrosis. The Chadam boy, along with the parents of the CF students, presents zero risk!

I am a CF Parent and I can state with confidence the Palo Alto Shool District has shown the world their failure to make informed decisions. While their is no cure for CF I remain hopeful it will happen. Unfortunately, you can't cure stupid!!


1 person likes this
Posted by Penny Wise
a resident of Another Palo Alto neighborhood
on Feb 10, 2016 at 10:29 pm

There is another thread on this issue right now.


3 people like this
Posted by David
a resident of another community
on Sep 23, 2017 at 8:00 pm

I find it difficult to believe that in Palo Alto, where intelligence seems to grow on trees, that the very teachers and schools that are paid to instruct the children of some very smart parents, could make such a ridiculous mistake. Not to mention the illegal act of sharing personal information with other parents, without first addressing the Child and Parents in a meeting to gather information. I would think that a simple Parent/Administrator meeting could have been arranged where an appropriate discussion could have been had. That a teacher could share personal information with another parent without consent or reasonable prudence, is beyond me.

It is embarrassing. Who would deny that? having been told that you need to remove your kid, and to have teachers and administrators passing untruths around the school, is embarrassing, and maddening. I would be outraged, and looking for a lottery ticket to get even personally. It is disgusting that school personnel act outside of their level of expertise, and that administrators do not follow prudent guidelines to protect the sanctity of personal information based on hearsay. Where is the Doctor that wrote the recommendation? Is he/she unnamed? What is their understanding of genetics and well.... medicine? It seems to me that something as simple as this (information clearly available on numerous sources at a very famous and simple place GOOGLE, could have at the least provided some reason to calm the fire until further consultation with the parents and the child's own physician could have been had. I wonder if this was a case of one wealthier parent trying to trump over another? Holding the school hostage to make a decision or else? I know some pretty snobby and really indignant and stupid people. Ugh. Shame on all of you!!! Palo Alto should have entrant exams before allowing parents to move there.


Sorry, but further commenting on this topic has been closed.

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