Duke University Research Uncovers Sale of Individuals’ Mental Health Data

February 21, 2023

"For years, data brokers have operated in a controversial corner of the internet economy, collecting and reselling Americans' personal information for government or commercial use, such as targeted ads," as reported in the Washington Post (February 13, 2023). "But the pandemic-era rise of telehealth and therapy apps has fueled an even more contentious product line: Americans' mental health data. And the sale of it is perfectly legal in the United States, even without the person's knowledge or consent."

The article shared findings of research conducted by Duke University's Sanford School of Public Policy. It also noted that although the Health Insurance Portability and Accountability Act restricts how covered health entities are allowed to share Americans' health data, it "doesn't protect the same information when it's sent anywhere else, allowing app makers and other companies to legally share or sell the data however they'd like."

"This is extremely disturbing news. Privacy of individuals' health conditions must always be protected. However, it continues to be at risk as hackers have become much more sophisticated," said Debra L. Wentz, PhD, President and CEO of NJAMHAA. "Furthermore, the particular targeting of individuals with mental health disorders is alarming because it demonstrates another aspect of stigma against mental illnesses and those who have them," added Dr. Wentz, who also serves as Chair of the New Jersey Governor's Council on Mental Health Stigma.

"Stigma is the most common reason why people are resistant to speaking up about their mental health challenges and seeking help for them. This issue is further compounded by the evidence of individuals' privacy being violated and is undoubtedly leading many more people to consider not seeking mental health care. Education is needed to eradicate stigma, and stricter laws and stronger technology are necessary to prevent these horrific violations of individuals' privacy," Dr. Wentz stated.

Click here to read the Washington Post article and here to read the full research report from Duke University's Sanford School of Public Policy.

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