I suppose I shouldn’t say, “Welcome back, privacy concerns,” as I’m sure they never left, just quietly assumed their position humming in the background and shadows of the internet noise. This week, however, they took center stage both in the healthcare space and in government news.
This week, The New York Times published an article on a significant announcement for the healthcare industry. A group of global partners spanning 41 countries and including 70 medical, research and advocacy organizations agreed to share a heap of genetic data. “Their aim is to put the vast and growing trove of data on genetic variations and health into databases that would open to researchers and doctors all over the world, not just to those who created them,” The New York Times wrote. Currently, research labs and facilities are very much siloed. Each institution has their own research within their own walls and with their own records and system of operations. There is no universal method for representing and sharing genetic data, which could lead to advanced findings in cures and other health-related research.
One reason for the lack of a central system is the sheer volume of data. There is just too much information being produced by the minute. Not only that, but it is often unstructured and not of quality (meaning information was entered or gathered incorrectly/differently, such as January being entered in as Jan, 1, 01, or January, making it difficult to analyze). While volume and quality of data is an issue, the overarching problem, or rather challenge, healthcare professionals face lies mostly in the security space. With all of that sensitive patient data, there need to be strict, infallible measures to protect that information. Along those same lines is the question of who will have access to that information.
This is especially significant as it comes at the same time of privacy concerns regarding the NSA’s reported access to granular consumer data. The NSA is taking heat on a project called PRISM. PRISM is reported to be a secret government program whereby the government can access your data from certain company’s servers. And by certain company’s, I mean tech giants like Apple, Microsoft, and Facebook. What’s most concerning about this program is the type of content the government can access through it. Instead of looking at data in the aggregate or general consumer behavior patterns, PRISM allows the government to access specific content within emails, online conversations, calls, etc. President Obama maintained the government is acting within legal measures and only doing so to protect citizens. AOL, Facebook, and others reported to be involved with this government program have turned to Twitter and their other social media accounts to deny their involvement with the program. Anonymous, an advocacy hacker group, published NSA documents today, and citizens aren’t too happy about PRISM. For the average citizen, I maintain that they don’t mind if you’re watching them, just so long as you don’t point out that you’re watching.
Issues of privacy concerns around big data are not new. Who owns and has access to all of the information you are publishing/generating/recording about yourself has cropped up again and again. Not even one year ago Facebook came under fire for changing its privacy statements and settings without properly informing users. Privacy laws are confusing and questions around who owns and should have access to data, for the most part, remain vaguely addressed and unanswered. With new initiatives like PRISM and genetic data happening within healthcare and government, you can bet privacy concerns surrounding who has access to your data and how they use that information will continue to hog the spotlight.