A potentially landmark legal case is currently underway in the U.S., with a middle school in Palo Alto, California, having been accused of “genetic discrimination” against a student. Though a district court initially dismissed the lawsuit in 2013, an appeal has now been filed which, if successful, could set a new legal precedent regarding the ways in which people’s genetic information can be accessed and used.
The lawsuit relates to an incident that occurred in 2012, when an 11-year-old boy named Colman Chadam was told that he would have to transfer away from Jordan Middle School because he carried certain “genetic markers” for cystic fibrosis. The school’s decision came after the parents of two other students who suffer from the condition raised concerns about Chadam’s attendance, as it is considered dangerous for people with cystic fibrosis to come into contact with each other.
The disease is caused by a mutation in a gene that codes for the production of a protein involved in transporting chloride ions across cell membranes. This results in abnormal amounts of mucus secretion in several organs, particularly the lungs, which increases a sufferer’s susceptibility to infection. Therefore, when two sufferers of the condition meet, the chances of an infection spreading from one to the other is relatively high.
However, despite his genetic markers, Chadam does not actually suffer from cystic fibrosis, and therefore does not pose any danger to other students with the condition. In fact, these markers were only discovered because doctors decided to conduct extensive genetic tests after treating Chadam for a congenital heart problem at birth.
In spite of this, his parents decided to disclose this information to the school when filling out medical forms during enrolment, and this was later divulged to other parents. The school then decided to remove Chadam after coming under pressure from the parents of two siblings who suffer from cystic fibrosis, before allowing him to return two weeks later.
The following year, his parents filed a lawsuit accusing the Palo Alto School District of “genetic discrimination,” which they claimed contravened the Americans with Disabilities Act. A district court ruled against the Chadams, finding that the school had acted in the interests of the safety of its pupils.
However, an appeal was lodged with the Ninth Circuit Court of Appeals last month, and has gained support from the Departments of Justice and Education. If successful, it could result in the expansion of the Genetic Information Nondiscrimination Act, which currently outlaws genetic discrimination in all processes related to employment and health insurance, but has never before been applied to education.