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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."