As mental health becomes an increasingly alarming concern for Americans, some have turned to using larger amounts of data to understand these issues better. But with the collection of more and more information about each other, we have to protect the individual’s privacy.
Dr. Thomas R. Insel stepped down as director of the National Institute of Mental Health last month to join Google Life Sciences, an organization devoted to developing technology to address health problems. Insel seeks to use the personal sphere of human behavior in addressing mental health issues. This could include using mental tracking of personal behavior to “identify ... the sources of depression and anxiety, including social interactions or sleep disruption,” according to Benedict Carey of the New York Times.
In addition, the National Institutes of Health recently launched a competition, the Open Science Prize, to promote data-sharing effectively. With these initiatives, scientists have been pushing to make scientific data more accessible. But when we collect personal information, we have to ask ourselves who should have permission to access and use the data.
When we collect information from an individual, whether it’s a medical record from a hospital or a meeting with a school therapist, numerous concerns arise. How can we make sure data doesn’t fall into the wrong hands? What if a scientist’s data is used without permission or for unintended purposes? For these reasons, we need more attention and more precise laws to protect privacy.
The Health Insurance Portability and Accountability Act ensures certain privacy rights of the individual’s mental health information. It provides patients with the rights to agree or object to sharing information. But as Valerie Strauss of the Washington Post writes, under the Family Educational Rights and Privacy Act, schools can share a student’s medical records (containing physical and mental health) without parental consent. And, according to Farai Chideya of the Intercept, we’ve yet to determine and implement the concrete regulations and restrictions of HIPAA.
Dr. Francis Collins, the current director of the NIH, has also been pushing for data-sharing policies of health information in order to protect the privacy of the individual. According to pbs.org, Dr. Collins has recently introduced a government-backed plan to create “a database of genetic information of a million Americans,” but he ensures patients would not only be test subjects, but could also have access to what information is collected and understand how that information is being used.
These initiatives for science and privacy are still in their infancy, and we need to talk about their details and specific strategies before putting ideas into practice. Privacy should be a much greater priority, especially in regards to mental illness in the age of the surveillance state.
For the individual patient’s autonomy and the growing concerns of society as a whole, mental illness won’t be going away soon and neither will issues of privacy.