Alleged Genetic Discrimination at California School Strikes a Nerve, Raises More Questions

We're seeing a lot of interest in Barry Starr's post about the student who was forced to leave school for a time based on a genetic predisposition to cystic fibrosis.

Most of the comments from our readers have expressed some degree of WTF. One in particular  -- "Here we go!" -- succinctly captures the fear that we're on a fast Road to Dystopia due to new genetic-testing capabilities.

To recap: Palo Alto Unified School District tried in 2012 to forcibly transfer 11-year-old Colman Chadam -- who did not have CF, just the genes for it -- in order to protect two students at his school who actually had the disease. The reason: a high risk exists among those with CF to give each other lung infections. As the family sought a court injunction, the district allowed him to return after missing 11 days of school.

One remark noted that the post did not mention the California Genetic Information Nondiscrimination Act (CalGINA), signed into law by Gov. Jerry Brown in 2011. That legislation amended existing state non-discrimination laws, including those in education, to prohibit  discrimination based on genetic information.

The rationale behind CalGINA was to close gaps in protection afforded by the federal Genetic Nondiscrimination Act (plain GINA). As Starr noted in his post on the Palo Alto case, GINA only covers discrimination in employment and health insurance.

But Colman's parents, who sued Palo Alto Unified School District over the incident in 2014, did not rely on CalGINA. The case was filed in federal court, and it asserted the school district had violated their rights under the Americans With Disabilies Act, the Rehabilitation Act of 1973, and the First Amendment's constitutional right to privacy. It also claimed negligence.

None of those arguments succeeded in court -- the suit was dismissed, and last month the family filed an appeal with the Ninth Circuit Court in San Francisco.

The ACLU and others who have studied the issue do not think the courts will interpret the ADA as applying to genetic discrimination. Given that uncertainty, it's logical to ask why the family didn't go to state court and invoke CalGINA -- which, after all was specifically designed to prevent genetic discrimination -- instead of suing under ADA.

The lawyer for the Chadams has an answer.

"A lawsuit under California law would, even if it would prevail, affect only California," attorney Stephen R. Jaffe told me on Tuesday. "This [federal suit] would affect other states. It would have a much broader application."

The family is seeking unspecified monetary damages, but Jaffe said a large part of their motivation is "making some good law on the subject, where there's a need for it to be made, particularly under ADA."

He noted the U.S. departments of education and justice have filed an amicus brief in support of the Chadams' ADA claims.

"The allegations in this case present a quintessential ADA claim -- allegations that a child was denied access to his school based on prejudices, stereotypes, and unfounded fear," the government said in its filing.

Palo Alto Unified said in an emailed statement that it "cares about and is committed to the safety and well-being of its student population," and that it "continues to agree with the ruling of the Federal District Court."

Jaffe said if the appeal with the Ninth Circuit fails, he will take the Chadam family's case to the U.S. Supreme Court.

It's worth noting why the circuit court rebuffed the ADA claims in the lawsuit, reasoning Jaffe called "tortured and strained."

Noting Title II of the ADA allows public officials to exclude individuals if they believe they "pose a direct threat to the health and safety of others," and provided the assessment is "based on reasonable judgement based on current medical knowledge," Judge Claudia Wilken wrote that the family failed to show that the district "did not act in an effort to preserve the safe operation of the school," or that their son's "brief exclusion ... from the school closest to his home, in light of the risk involved, was not reasonable given the information PAUSD had." She went on:

In fact, they allege that PAUSD told them it was basing its decision on medical evidence provided both by [a physician's letter] and a "top Stanford doctor." They state that PAUSD made its decisions on the basis of its belief that C.C.'s presence in the school was a serious threat to other students. Furthermore, C.C. was allowed, within two weeks, to return to the school closest to his home, indicating that PAUSD had changed its policy with regard to C.C.

In short, the Chadams admit that PAUSD believed the risk to other children was real and based on medical evidence.

Don't Ask, Don't Tell?

The suit alleges that ADA's Title II applies because Colman was perceived as having an impairment, even though he didn't.

It's a perception that might have been avoided, had the boy's mother not disclosed her son's genetic vulnerability on a school form. That set off a chain of haphazard events in which, according to the complaint, teachers at the school told the parents of the two students with CF about Colman's genes, dueling letters from medical doctors were produced, and Colman was removed from his classroom.

Why did the Chadams disclose their son's genetic susceptibility to the school in the first place?

"That's a good question," Jaffe said. "Mrs. Chadam was not required to do so. She was trying to be honest and forthcoming -- she was just enrolling him

"If she had to do it again, I think she wouldn’t."