The right to discreet help
Digital data related to health should be protected
As the COVID-19 pandemic has killed tens of thousands of people, cost millions more their jobs and forced entire communities into isolation, another crisis has come into focus — that of people’s mental health. But as people in the throes of mental duress search for online resources, many websites are not respecting users’ privacy, vacuuming up sensitive medical information to be analyzed, sold and exploited.
A 2019 study by Privacy International, a privacy advocacy group based in the United Kingdom, analyzed
136 popular websites related to depression in the European Union. Researchers found that almost 98% of the pages contained a third-party element. Those are often used to track users’ online behavior and provide “targeted” advertisements. These technologies are not unique to mental health websites, but collecting information from people in distress can easily lead to exploitation.
What’s more, most of the websites that were analyzed did not comply with the EU’s General Data Protection Regulation, a law meant to offer greater protections to user data. Privacy International’s follow-up study, released in February, found that several of the websites had altered their practices, but most had not.
In the U.S., where there is no equivalent to the GDPR, there is even more incentive for websites to allow trackers and data collection.
Health care, mental or otherwise, is among the most sensitive information available, to be guarded as privately as possible. But the largely unregulated digital ecosystem has made it easy for that data, along with all kinds of other personal information, to be scooped up by a wealth of third parties.
While the ethics of that collection across the whole internet may be up for debate, websites that offer health information or services should be off-limits. People should have the right to access resources vital to their mental or physical health anonymously, without fear that their conditions could be collected, studied or exploited without their knowledge.
As more people turn to the internet for help during the pandemic and beyond, this issue will become only more pressing. The digital world offers unprecedented access and opportunity for people to have their health needs met, but it also creates unprecedented risk.
Congress has been resistant to imposing regulations on digital data collection, but it should at least draw the line at protecting data related to health care.
If you or someone you know is thinking about suicide, call the National Suicide Prevention Lifeline at 1800-273-TALK (1-800-273-8255). It’s always open, and you can speak to a trained counselor.