Read this article in the Indiana Daily Student here….
When speaking about the rights of an individual to his/her personal information, it’s easy to overlook the “personal” nature of mental health data. And, within the rhetoric of mental health, we spend a lot of time expressing the behavior, feelings and thoughts of those who suffer from mental illness, but we forget about the a deeper issue: who should know about it?
How much can more data actually help us? With so much information about ourselves, it’s easy to be misguided. Some, like Jesse Singal of NYMag’s “Science of Us,” have decried the calls of certain mental health issues at universities tremendously serious, yet suffering from confirmation bias or similar statistical fallacies. [6] If anything, we might just well be overwhelmed by how much we know about ourselves scientifically that we forget the humanistic aspect of ourselves. Basic science research in psychiatry hasn’t reached the goals it has claimed to make over the past few decades. Will turning to the social sphere, like Insel suggests, do any better?
As science and medicine call for greater access to information for the purpose of research and clinical treatment, privacy becomes an issue. When we collect information from an individual, whether it’s a medical record from a hospital or a meeting with a school therapist, we have to protect his or her rights. 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?
“But we would want you and your family members…to take part because we want to have that information…And that’s obviously also going to be very sensitive but very important because it’s such a problem in this country.” – Francis Collins[7]
References:
[1] http://www.nytimes.com/2015/09/16/health/tom-insel-national-institute-of-mental-health-resign.html
[2] https://www.washingtonpost.com/news/answer-sheet/wp/2015/11/12/the-astonishing-amount-of-data-being-collected-about-your-children/
[3] http://www.nih.gov/news-events/news-releases/new-prize-competition-seeks-innovative-ideas-advance-open-science
[4] http://www.hhs.gov/ocr/privacy/hipaa/understanding/special/mhguidance.html
[5] http://www.pbs.org/newshour/bb/push-use-human-genome-make-medicine-precise/
[6] http://nymag.com/scienceofus/2015/11/myth-of-the-fragile-college-student.html#
[7] http://thedianerehmshow.org/shows/2015-09-28/nih-head-francis-collins-on-new-efforts-to-use-medical-records-of-volunteers-to-treat-diseases
[8] http://www.thestar.com.my/story/?file=%2f2008%2f10%2f15%2fcentral%2f2246634&sec=central