As Stephanie M. Lee reported for Buzzfeed in a well-written account (which contains links to the relevant court documents), an appeal was filed in January with the Ninth Circuit Court of Appeals in the case of Chadam v. Palo Alto Unified School District (4:13-CV-04129-CW). At issue in the case is whether the school district violated a boy’s rights when it decided to force him to transfer schools. The student’s parents allege the transfer decision was because he is a carrier of a genetic variant associated with Cystic Fibrosis or CF (although he has not exhibited symptoms of the disease), and the appeal argues the trial court erred in dismissing the complaint that the school district’s decision to transfer violated his rights under Title II of the American’s with Disabilities Act or ADA (42 U.S.C.A. §12131 et seq.), Section 504 of the Rehabilitation Act of 1973 (29 U.S.C.A. § 794), and the First Amendment of the U.S. Constitution. At the trial court level, the school district successfully defended its decision to transfer the boy by arguing it relied on medical advice and made the decision in an attempt to protect other children at the school who have CF.
About Cystic Fibrosis and Carrier Status
Before reviewing the facts of the case and some legal issues, it is useful to know a bit more about Cystic Fibrosis. Cystic Fibrosis is a genetic disease affecting fewer than 200,000 people. The disease affects mucus glands and can lead to fatal lung infections. It is a recessive disorder caused by the presence of two mutated copies of the CFTR gene. More than 1700 mutations in this gene have been reported, but they are quite rare. CF screening typically involves testing to determine if an individual is a carrier of the 23 most commonly found mutations. A carrier is a person who has one normal copy and one mutated copy of the gene. CF carrier rates vary across populations, and the disease is most commonly found among individuals of European ancestry. Roughly half of the individuals with CF in the United States have the same mutation, the deltaF508 mutation. (See here, e.g, for more information about Cystic Fibrosis and genetic screening). While CF can be detected by genetic analysis, the “sweat test” is considered the gold standard for diagnosing CF. While CF is a genetic disease and is not contagious, individuals with CF can spread germs (such as pseudomonas) to one another and are said, in other words, to pose a “cross infection” risk to one another. CF carriers do not pose such risks.
About the Case
To summarize the facts of the case (as alleged in the Plaintiffs’ complaint), the student at the center of the case moved from Singapore to the Palo Alto area with his parents in 2012. The decision to move to Palo Alto was made, in part, because of the high-quality education there. The boy has never been diagnosed with CF; however, the boy and his parents learned of his carrier status when genetic testing was performed in connection with surgery he had as an infant to correct a heart condition he had at birth. The boy’s carrier status was apparently disclosed to the PAUSD when his parents completed the forms for his middle school registration. A teacher soon thereafter disclosed to parents of other students, who do have CF, that the boy also has CF. A doctor and, later, the parents of the students with CF (“Mr. and Mrs. X”) wrote to the school to request the boy be transferred for the safety of those students with CF. The school acted upon the request (and the opinion of a “top Stanford doctor”) and decided to transfer the boy to another school that was a few miles away. The Chadams brought action immediately to seek an injunction allowing the boy to remain at the original middle school, and the case was settled prior to any court decision. Contrary to the Buzzfeed article’s account, injunctive relief was not obtained; rather, as a result of the settlement, the transfer never took place. The boy continued to attend the original middle school.
The suit was brought specifically for redress of the school’s disclosures of the medical information which labeled the boy as having CF and for the decision to transfer the student, which caused the boy to be kept out of school during the weeks it took to resolve the matter. The trial court dismissed the case on the pleadings, finding that PAUSD had a reasonable basis at the time of the incident to believe the boy posed a direct threat to the health and safety of those students who have CF. Again, as a matter of scientific fact, CF carriers do not have the disease and do not pose risks of cross-infection to individuals with CF.
The Buzzfeed article certainly grabbed everyone’s attention, but the headline (“This Boy Was Thrown Out Of School Because Of His DNA, Parents Say”) is misleading to those who may not have had the time or interest to read the story or court documents. This post is not intended to repeat or restate Lee’s coverage. Rather, it is to address the myriad of questions that have been raised by non-attorneys in response to learning of the case through the Buzzfeed article.
Why not GINA?
In short, this case provides a very important reminder of the limited scope of the Genetic Information Nondiscrimination Act of 2008 (GINA). The statute only provides genetic nondiscrimination rights in two contexts: health insurance and employment. It does not extend any protections from nondiscrimination in education. But, interestingly, California does.
But wait… CalGINA
In October 2011 (one year before the events unfolded that gave rise to this case), California passed CalGINA, S.B. 559, and extended genetic nondiscrimination rights broadly. (See the previous discussion of CalGINA here). The law took effect January 1, 2012 (also before the events unfolded that gave rise to this case). CalGINA amended the Unruh Civil Rights Act (Cal. Civ. Code § 51 et seq.) to provide people in California with protection from genetic discrimination in a wide array of contexts, including housing, mortgage lending, any kind of business activities, receipt of emergency medical services, and, notably, participation in any activity or program that involves state funding (which includes education). The act reads (with emphasis added),
“(b) All persons within the jurisdiction of this state are free and equal, and no matter what their sex, race, color, religion, ancestry, national origin, disability, medical condition, genetic information, marital status, sexual orientation, citizenship, primary language, or immigration status are entitled to the full and equal accommodations, advantages, facilities, privileges, or services in all business establishments of every kind whatsoever.”
From the information available, it is not clear why a claim under CalGINA was not set forth in the Chadams’ complaint against PAUSD. However, it is worth recognizing that precedent indicates a federal court would have subject matter over the state statutory claim if the Chadams had raised it, because the facts involved are so related to the ADA and Section 504 claims that they are, in essence, one and the same. (See, e.g., D.R. ex rel. Courtney R. v. Antelope Valley Union High School District, 746 F.Supp.2d 1132 (CD Cal., 2010)). Additionally, a violation of the ADA is itself a violation of the Unruh Civil Rights Act and damages are compensable. (See, e.g., Boemio v. Love’s Restaurant, 954 F.Supp. 204 (S.D. Cal, 1997)).
Why not FERPA?
The Family Educational Rights and Privacy Act (FERPA) provides a student with some protections against schools disclosing personal information to others without the students’ permission. Medical information maintained by the school would fall under the definition of “educational records” and be subject to the non-disclosure restrictions of FERPA according to the statute’s definitions. However, there are several exceptions to this law that allow schools to release information without getting permission from the student to do so.
The most relevant exception to the facts of this case (at least those gleaned from the Buzzfeed report and court documents) is the one found at 34 CFR § 99.31 (10). It states that consent from the student to disclose otherwise protected information is not required if “(10) The disclosure is in connection with a health or safety emergency, under the conditions described in §99.36.” The cross-referenced section specifies schools may disclose information to other “appropriate parties, including parents of an eligible student … if knowledge is necessary to protect the health or safety of the student or other individuals.” It further specifies that the school is able to view the totality of the circumstances to determine if there is “an articulable and significant threat to the health or safety of a student or other individuals” and that the school’s determination will not be second-guessed after the fact if the school, at the time of the decision to disclose information, had a rational basis for its decision. The section provides that the school may disclose the information to “any person whose knowledge of the information is necessary to protect the health or safety of the student or other individuals.” (34 CFR § 99.36(c)). In other words, FERPA will not stop a school from releasing information (including medical information) about a student if the information was released because the school determined that releasing that information was necessary to protect the health or safety of other students. It is necessary to recognize that while FERPA wouldn’t stop the disclosure, that doesn’t mean that “the law” permits the school to do so. It simply means that students are not protected by and cannot use FERPA as the basis to pursue a claim against the school for the disclosure. Rather, other legal obligations and restrictions may (and do) apply. Among them are privacy rights afforded by federal and state constitutions, common law, and various other statutes.
As noted previously, individuals with CF are at risk of cross-infections from others with the condition. PAUSD, at least in theory, could have disclosed the information about another child’s CF status to the other children (or the children’s parents) without violating FERPA.
Why watch this case?
To be clear, this case should have settled already. 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). The perception that CF carrier status puts anyone else at risk, including individuals with CF, is simply indefensible.
On January 21, 2016, the Department of Justice (DOJ) filed an amicus brief on behalf of the Chadams and against the PAUSD. In the brief, DOJ argues the Chadams did allege facts sufficient to substantiate ADA and Section 504 claims and requested the case be remanded for further proceedings on the merits.
If the Ninth Circuit upholds the trial court’s dismissal of the case (and also if it remands and there is a subsequent court decision on the merits of the case), there are far-reaching implications. The case pits the genetic nondiscrimination rights of one student against the perceived health and safety of other students. In broad view, 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). When thinking about the potential implications of the case to other fact patterns, 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.
Update posted at 2:38 p.m. on February 2, 2016: A respected colleague, Dr. Ellen Quillen, highlighted a potential inaccuracy in the facts as I have reported them. A closer look at the complaint and appeal shows that the Plaintiff’s attorney never indicates unequivocally that the boy is a CF carrier.
Paragraph 5 of the amended complaint states, “…CC carried genetic ‘markers’ consistent with those of persons who may develop the disease of cystic fibrosis.” By contrast, page 3 of the amicus brief field by the Department of Justice states, “C.C. was diagnosed with the genetic marker for cystic fibrosis, but not the disease itself.” The use of plural or singular is ambiguous. Thus, it is possible but not clear from the pleadings whether the boy has one or two mutated copies of the CF gene. If he has two mutated copies, the boy technically is not considered a “carrier.” Rather, he would be considered to have the genotype but not the phenotype for CF (or, in other words, the boy has a genetic predisposition but is unaffected or not yet expressive of the condition). There are two relevant scientific concepts: incomplete penetrance and variable expressivity. Incomplete penetrance means that not every individual with the same genotype will exhibit symptoms of the disease. Variable expressivity means that individuals with the same genotypes show different signs and symptoms of the disease. The penetrance and expressivity varies depending on which specific mutation(s) in the CFTR gene are present.
Ultimately, the distinction between whether the boy is a carrier or whether the boy has two mutated copies for CF is irrelevant to the legal analysis. The genotype itself does not confer a risk of cross-infection to an individual with cystic fibrosis. Rather, the manifested symptoms are what confer the risk of cross-infection (namely, the thickening of mucus in the lungs). The pleadings state unequivocally that the boy has been free of cystic fibrosis symptoms.
Update posted at 8:18 a.m on February 3, 2016: A previous version incorrectly spelled the name of the plaintiffs as Chadham rather than Chadam. That error has been corrected.