Deborah Peel, founder of Austin advocacy group Patient Privacy Rights, says U.S. law is lacking compared with that in Europe, where patients are given more control over what personal information is collected. Patients in the U.S. are entitled to contact holders of their prescription data and review the files for errors, but few know where to start.
“The government may say it’s not a privacy violation, but that’s not how the people experience it,” Peel said. “Even if we wanted to check up on our data, we have no idea who these companies are.”
The names of the mother and daughter were redacted from the government documents, and their identities could not be learned. It’s also unclear whether they got their records fixed. “The databases are completely opaque,” Peel said. “They’re opaque to regulators, and they’re opaque to us.”