A recent report from the Sanford Cyber Policy Program has been making a big impact this week. So far 60 media outlets have cited this data, culminating in an interview with PBS Newshour that aired nationally this weekend, featuring Justin Sherman, senior fellow at Sanford who runs the data brokerage research project.
The report by Joanne Kim (PPS'22), Sanford Technology Policy Recent Graduate Fellow, reveals the lack of transparency in the data broker industry and the risks associated with the selling and exchanging of sensitive mental health data of Americans. The study found that some data brokers are marketing highly sensitive data on individuals’ mental health conditions on the open market, with seemingly minimal vetting of customers and seemingly few controls on the use of purchased data. The report argues that the largely unregulated and black-box nature of the data broker industry, its buying and selling of sensitive mental health data, and the lack of clear consumer privacy protections in the U.S. necessitate a comprehensive federal privacy law or, at the very least, an expansion of HIPAA’s privacy protections alongside bans on the sale of mental health data on the open market.
“Most Americans assume all their health data is protected everywhere, all the time, and that’s unfortunately not the case. Joanne’s groundbreaking work on the brokerage of Americans’ mental health data shows that many companies are willing and eager to sell that sensitive information on the open market. It’s a perfect example of our goal since day one of the data brokerage project and the Sanford Cyber Policy Program: conduct deep and rigorous research on technology policy issues, clearly articulate the risks to individuals and society, and make those findings accessible to policymakers and the public. This report is a reminder that research doesn’t have to, and should not, just sit on a shelf,” said Justin Sherman, senior fellow at Sanford who runs the data brokerage research project.
Professors Jolynn Dellinger and Ken Rogerson provided mentoring and guidance for the project, and are thrilled with Kim’s work on the report.
“This work began with a public policy honors thesis, with Joanne going through the important processes of asking a good, policy-relevant research question and figuring out how to answer it. In this case, she overcame some pretty high hurdles to create the final product. Passion, coupled with hard work and persistence, can raise awareness beyond Duke about pressing policy problems,” said Rogerson, Professor of the Practice and Associate of the Duke Initiative for Science & Society.
As the report continues to receive the spotlight, here are some highlights of the media coverage thus far.
Media Coverage Highlights:
“Personal user data from mental health apps being sold, report finds” – PBS NewsHour, February 19, 2023
“Now for sale: Data on your mental health” – Washington Post, February 13, 2023
“A researcher tried to buy mental health data. It was surprisingly easy.” – NBC News, February 13, 2023
“Data broker marketplace research shows loose controls on sensitive mental health info” – Politico, February 13, 2023
“Data Brokers Are Selling Long Lists of People With Depression and Anxiety” – Gizmodo, February 13, 2023
“Mental Health Apps Collected and Sold Sensitive Personal Data, Study Finds” – Cheddar News, February 14, 2023
“YOUR mental health data is being sold on the internet by telehealth and therapy app companies for as little as SIX CENTS, Duke review finds” – Daily Mail UK, February 13, 2023