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The Sale of American’s Mental Health Data

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Millions of Americans have been using health tracking apps for for the last few years and since the pandemic, numerous apps for mental health issues like depression and anxiety have proliferated. We have become used to our private medical information from the usual medical settings being protected by HIPAA (the Health Insurance Portability and Accountability Act). But unfortunately, HIPAA wasn’t designed for the modern digital world, with its new technologies. Most apps—including health, mental health, and biometric tracking devices—don’t fall under HIPAA rules, meaning that these companies can sell your private health data to third parties, with or without your consent.

A new research report published by Duke University’s Technology Policy Lab reveals that data brokers are selling huge datasets full of identifiable personal information—including psychiatric diagnoses and medication prescriptions, as well as many other identifiers, such as age, gender, ethnicity, religion, number of children, marital status, net worth, credit score, home ownership, profession, and date of birth—all matched with names, addresses, and phone numbers of individuals.

Data brokers are selling massive lists of psychiatric diagnoses, prescriptions, hospitalizations, and even lab results, all linked to identifiable contact information.

Researcher Joanne Kim began by searching for data brokers online. She contacted 37 of them by email or a form on their website (Kim identified herself as a researcher in the initial contact). None of those she contacted via email responded; some of those she contacted via form referred her to other data brokers. A total of 26 responded in some way (including some automated responses). Ultimately, only 10 data brokers had sustained contact by call or virtual meeting with Kim, so they were included in the study.

The 10 most engaged data brokers asked about the purpose of the purchase and the intended use cases for the data; however, after receiving that information (verbally or in writing) from the author, those companies did not appear to have additional controls for client management, and there was no indication in emails and phone calls that they had conducted separate background checks to corroborate the author’s (non-deceptive) statements.

Data Brokers reported conditions for selling data:

  • emphasized that the requested data on individuals’ mental health conditions was “extremely restricted” and that their team would need more information on intended use cases—yet continued to send a sample of aggregated, deidentified data counts.
  • confirmed that the author was not part of a marketing entity, the sales representative said that as long as the author did not contact the individuals in the dataset, the author could use the data freely.
  • implied they may have fully identified patient data, but said they were unable to share this individual-level data due to HIPAA compliance concerns. Instead, the sales representative offered to aggregate the data of interest in a deidentified form.
  • one was most willing to sell data on depressed and anxious individuals at the author’s budget price of $2,500 and stated no apparent, restrictive data-use limitations post-purchase.
  • another advertised highly sensitive mental health data to the author, including names and postal addresses of individuals with depression, bipolar disorder, anxiety issues, panic disorder, cancer, PTSD, OCD, and personality disorder, as well as individuals who have had strokes and data on those people’s races and ethnicities.
  • two data brokers, mentioned nondisclosure agreements (NDAs) in their communications, and one indicated that signing an NDA was a prerequisite for obtaining access to information on the data it sells.
  • one often made unsolicited calls to the author’s personal cell. If the author was delayed in responding to an email from the data broker, the frequency of calls seemed to increase.

Conclusions

The author concludes that additional research is critical as more depressed and anxious individuals utilize personal devices and software-based health-tracking applications (which are not protected by HIPAA), often unknowingly putting their sensitive mental health data at risk. This report finds that the industry appears to lack a set of best practices for handling individuals’ mental health data, particularly in the areas of privacy and buyer vetting. It finds that there are data brokers which advertise and are willing and able to sell data concerning Americans’ highly sensitive mental health information.

This research concludes by highlighting 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.

[Link]

APA Psychology Chief Scientist @ Senate Judiciary Committee: Potential Harms, Benefits of Social Media for Kids

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Association calls for more research, regulation, better messaging to parents and teens

Additional research is needed to better understand how certain features and content inherent in social media, as well as user behavior, may be affecting our children for both good and bad, APA Chief Science Officer Mitch Prinstein, PhD, told the Senate Judiciary Committee.

The age at which children begin to use social media is an area of great concern, he said. “Developmental neuroscientists have revealed that there are two highly critical periods for adaptive neural development. One of these is the first year of life. The second begins at the outset of puberty and lasts until early adulthood (i.e., from approximately 10 to 25 years old). This latter period is highly relevant, as this is when a great number of youths are offered relatively unfettered access to devices and unrestricted or unsupervised use of social media and other online platforms.”

Recent research shows over 50% of teens reporting at least one symptom of clinical dependency on social media. He also outlined several additional areas of concern that have emerged from scientific research. Social media sites ostensibly exist to foster social connections, he said. But many youth use the sites to compare themselves to others, seeking “likes” and other metrics rather than healthy, successful relationships.

Social media sites ostensibly exist to foster social connections, he said. But many youth use the sites to compare themselves to others, seeking “likes” and other metrics rather than healthy, successful relationships.

In other words, social media offers the ‘empty calories of social interaction’ that appear to help satiate our biological and psychological needs, but do not contain any of the healthy ingredients necessary to reap benefits,

Social media also heightens the risk for negative peer influence among adolescents, as well as for addictive social media use and stress, he added, citing research showing that many young people use social media more than they intend to and that they have difficulty stopping its use.

Recent studies have revealed that technology and social media use is associated with changes in structural brain development (i.e., changing the size and physical characteristics of the brain). This highlights the risks associated with young people accessing social media sites that glamorize disordered eating, cutting and other harmful behaviors. Filtering or removing this type of content is often not done or warnings are not triggered. So vulnerable youth are not sheltered from the effects that exposure to this content can have on their own behavior. “This underscores the need for platforms to deploy tools to filter content, display warnings, and create reporting structures to mitigate these harms.”

Another area of concern is what young people are missing out on by spending so many hours on social media—especially sleep, which they need for healthy development. “Research suggests that insufficient sleep is associated with poor school performance, difficulties with attention, stress regulation, and increased risk for automobile accidents,” he said.

But it is not all bad news. Some research demonstrates that social media use is linked with positive outcomes that can benefit youth mental health, according to Prinstein. “Perhaps most notably, psychological research suggests that young people form and maintain friendships online. These relationships often afford opportunities to interact with a more diverse peer group than offline, and the relationships are close and meaningful and provide important support to youth in times of stress,” he said. This can be especially important for youth with marginalized identities, including racial, ethnic, sexual and gender minorities.

Dr. Prinstein made several recommendations for what Congress can do to address many of the risks social media may pose to youth. These include:

  • Allocating at least $100 million to study social media and adolescent mental health;
  • Mandating that data from algorithms be made public, along with other internal research conducted by social media companies;
  • Requiring social media platforms to develop tools to mitigate the harm to youth, such as disabling particularly addictive features and enabling users to opt out of certain algorithms;
  • Mandating protections for marginalized and LGBTQ+ kids, while retaining their ability to connect with others in such groups for social support;
  • Passing the Kids Online Safety Act and previously proposed legislative fixes such as updates to the Children Online Privacy and Protection Act.

Source: APA.org Press Release

Senate Judiciary Committee (PDF, 355KB).

**Update Article – 02/16/23 Published by National Public Radio – “10 things to know about how social media affects teens’ brains” discusses in more depth the important takeaway messages from Dr Prinstein’s presentation to the US Judiciary Committee [Link to article]