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.