Genetic testing is a medical test that identifies changes in chromosomes and genes to determine whether a person has, or might develop, a genetic condition. Genetic testing is becoming cheaper and easier to do each year. With $199 dollars and some saliva, companies like 23andMe can provide you with personal information ranging from ancestry to whether you are a “carrier” for certain conditions. Today, before a parent even holds their child their arms, procedures like amniocentesis can tell them about their child’s potential chromosomal abnormalities.
Presently all fifty states are required to test infants for at least twenty-one disorders. According to the U.S. National Library of Medicine, early detection and treatment “can help prevent intellectual and physical disabilities and life-threatening illnesses.” But with these medical advances, there is cause for concern.
It is now possible to single out individuals and groups of people with certain genetic backgrounds. This, in turn, opens up the possibility for new problems. We’ve seen discrimination based on national origin, class, race, religion, sex, and sexual orientation, to name a few. The growth of genetic testing brings on a new frontier—genetic discrimination.
Recognizing the potential misuse of genetic information, Congress passed the Genetic Information Nondiscrimination Act of 2008 (GINA). However, GINA only provides federal protection against discrimination in healthcare and employment. For areas such as public accommodations and public services, injured persons must look elsewhere.
Chadam v. Palo Alto Unified School District
One California family is hoping to establish a new potential source for protection from genetic discrimination—the Americans with Disabilities Act (ADA). In January, the Chadam family filed an appeal with the Ninth Circuit seeking to reverse a district court’s dismissal of their complaint alleging that the Palo Alto Unified School District, among other things, intentionally discriminated against their son, Colman, in violation of Title II of the ADA and Section 504 of the Federal Rehabilitation Act (Rehabilitation Act). The Department of Justice and Department of Education filed an amicus brief in support of the Chadams.
When Colman Chadam was born, he underwent genetic screening. It was determined that he carried certain genetic markers for cystic fibrosis. However, he did not have the disease itself. In 2012, while registering Colman for school, his mother provided this information on the registration forms.
According to the complaint, two other students at the school have active cystic fibrosis. Without the Chadams’ permission, a teacher allegedly disclosed to these students’ parents, referred to as “Mr. and Mrs. X,” that Colman has active cystic fibrosis. Not long after, the school district received a letter from Dr. Carols Milla recommending Colman be removed for the safety of the X’s two children—there is an increased risk for infection when people who have cystic fibrosis are around each other. It is unclear who requested Dr. Milla’s opinion. Mr. and Mrs. Chadam continued to stress that Colman did not have cystic fibrosis.
A few days later, Dr. Milla sent another letter to the school district. This time, he stated that children with cystic fibrosis “must not be” in the same school together. The Chadams had Colman’s doctor write a letter indicating that Colman did not have active cystic fibrosis and was not a risk to other children with cystic fibrosis.
Nonetheless, the school decided to transfer Coleman to another school against his parent’s wishes. On October 10th, in the middle of the school day and in front of his class, Colman was removed from the classroom and told it was his last day at the school.
Coleman’s parents are now suing school district for damages. They claim that discrimination based on a person’s genetic information is a violation of the ADA and the Rehabilitation Act. These are novel claims.
The district court, however, found that even though the Chadams stated sufficient facts to infer Colman was “regarded” as an “individual with a disability,” the school reasonably believed he was a risk to the other students and thus did not violate the ADA or the Rehabilitation Act. The court concluded that the school district raised a “direct threat” defense—a permissible one-time discrimination based on the reasonable judgment that the discrimination preserves the safety of others—and the Chadams did not state sufficient facts to refute this defense.
The ADA, Rehabilitation Act, and Genetic Discrimination
Under Title II of the ADA, it is illegal to exclude a qualified individual from participation in, or to deny them the benefits of, the services, programs, or activities of a public entity because of a disability. A “disability” is defined as having “a physical or mental impairment that substantially limits one or more major life activities” or “being regarded as having” such an impairment, regardless of its existence. Section 504 of the Rehabilitation Act prohibits similar discrimination under any program or activity receiving federal financial assistance.
According to the Departments of Justice and Education, to prove a violation of Title II or Section 504 a plaintiff must establish three elements: (1) they are a qualified individual with a disability; (2) they were excluded from participation in, or were denied the benefit of, a public entity’s service, program, or activity, or were otherwise discriminated against by the public entity; and (3) the public entity did so by reason of their disability (i.e., it was intentional).
The district court agreed that Colman was “regarded” as being disabled, thus, only the other two elements need be shown. As for the second element, public education is a service, program, or activity encompassed by Title II and Section 504. Furthermore, attending the local school is a benefit of that program—one allegedly denied because Colman was “regarded” as having a disability.
As for the third element, rather than proving ill will, the Chadams must show that the school district intentionally discriminated because of Coleman’s “disability.” Alternatively, according to Duvall v. County of Kitsap, 260 F.3d 1124, 1139 (9th Cir. 2001), they can show that the school acted with “deliberate indifference” because they acted with “knowledge that a harm to a federally protected right is substantially likely” and they failed to act upon that likelihood.
The school district claimed that state law required removal of Coleman for the other students’ safety. The district court construed this as a “direct threat” defense. However, this is not sufficient to dismiss the case. For one, federal law may preempt inconsistent state law. Second, parties asserting a “direct threat” defense have the burden of showing that the individual posed a significant risk to the safety of others—a good faith belief is insufficient. This requires an individualized assessment. Moreover, because it took a month for the school to act, this was not the type of “immediate, on-the-spot decision” that would provide a defense.
Overall, it seems that the Chadams have a valid legal claim that genetic discrimination, at least of the type here, should be prohibited under the ADA and the Rehabilitation Act. At the very least, this case should be remanded and heard on the merits. If sent back and decided on the merits, the Chadams should prevail, particularly given the government’s arguments in support of the Chadams’ position.
Either outcome would have a significant impact on anti-discrimination laws and the balance of competing rights. Given the rapid advances in genetic testing, as this case illustrates, this is an area where legal protections may be lacking. Interpreting the ADA to cover such conduct could be the first step in tackling the potential dangers in this new frontier.
That said, if the ADA does apply to genetic discrimination, it raises questions about what the appropriate balance would be if someone truly does have the genetic markers of a condition that makes him or her a danger to others (e.g., if Coleman truly is a danger to the X’s children). Perhaps the court might decide that the ADA covers this situation, but that the school’s moving him to another school was a reasonable accommodation.
Alternatively, if the ADA does not apply here, we should ask what could be done to prevent genetic discrimination as genetic testing becomes more common. Perhaps it would require amendments to GINA or an entirely new statute. Either way, Chadam v. Palo Alto Unified School District will give some insight into the future of genetic discrimination.