When Annie Brown’s daughter, Isabel, was a month old, her pediatrician asked Brown and her husband to sit down because he had some bad news to tell them: Isabel carried a gene that put her at risk for cystic fibrosis.
While grateful to have the information — Isabel received further testing and she doesn’t have the disease — the Mankato, Minnesota, couple wondered how the doctor knew about Isabel’s genes in the first place. After all, they’d never consented to genetic testing.
It’s simple, the pediatrician answered: Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it’s often done without the parents’ consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.