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The era of rampant, unconsented, and unregulated online data collection may finally be winding down for consumer health data. But the advances in consumer privacy have not yet fully reached the millions of people with health information related to their drug use, substance use disorder treatment, or recovery.

In July, two key agencies for consumer health privacy, the Department of Health and Human Services and the Federal Trade Commission, sent letters to 130 hospital systems and telehealth providers cautioning against the use of online trackers that may be impermissibly sharing consumers’ sensitive health data. Similarly, last year, the agencies worked together in releasing a tool to clarify which federal privacy laws might apply to health apps and the consumer data they collect, generate, use, store, and share.


In our increasingly digital world, it is encouraging to see HHS and the FTC taking a proactive, collaborative approach to consumer health privacy online, but there is a gaping hole at the center of their work: the privacy rights of people seeking services online for health issues related to drug use.

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