08 February 2016
ByAppeared in BioNews 838
The parents of a child carrying genetic markers for cystic fibrosis (CF) are suing a school for alleged discrimination and unlawful disclosure of personal information.
Appealing an earlier decision by the District Court, James and Jennifer Chadam claim that the Palo Alto Unified School District (PAUSD) in California contravened the Americans with Disabilities Act, and violated their son's First Amendment right to privacy, when a teacher informed other parents that the boy 'had the disease of CF'. Their child, Colman Chadam, was subsequently removed from his school and threatened with transfer to another institution 3.5 miles from the family home.
PAUSD states that Colman posed a threat to the health of two other children in the school, both of whom had CF. The disease, which is characterised by mucus build-up in the lungs and digestive system, can make it hard for patients to breathe or digest food, and can be exacerbated by cross-contamination between two CF-sufferers.
The Chadams counter that while their son did have markers associated with CF, he did not have and had never had the disease. He is in all respects a 'healthy teenager', the amended claim form states. It is not clear from court documents whether Colman has one or two mutated copies of the CF gene, Genomics Law Report explains. However, even if the boy has two copies, while he may not be described as a CF 'carrier' he might not yet be expressive of the condition, which is at what point researchers claim it presents a health risk to other people affected by CF. Evidence presented with the appeals documents showed that Colman had been examined regularly by a doctor, who confirmed that there had been no sign of the disease.
Furthermore, the Chadams question whether PAUSD's actions were motivated by concerns over public health and not out of a wish to 'pander' to the parents of the children with active CF, one of whom had previously 'interrogated' Mrs Chadam by telephone about her son's medical history.
The family's lawyer, Stephen Jaffe, says the case has wide-ranging legal and ethical implications over who has the right to obtain and use genetic information. 'Affirming the district court's ruling in this case will open a wide gap in the wall of privacy protection the law presently affords personal genetic information. It will implicitly permit unqualified non-medical persons such as school districts, insurance companies and employers to base life-altering decisions on private genetic information.'
The court is also being asked to determine whether a person holding certain genetic markers can be classed as disabled under the Americans with Disabilities Act and the Federal Rehabilitation Action. Given the recent advances in genetic medicine and information, disputes over the retention and use of personal information will become 'inevitable', argue the Chadams.
A spokesperson for PAUSD explained to BuzzFeed: 'The Palo Alto Unified School District cares about and is committed to the safety and well-being of its student population. That said, the case is on appeal because the Federal District Court found the claims insufficient to allege fault on the part of the District. PAUSD continues to agree with the ruling of the Federal District Court.'