If there was even a remote prospect that you could do something to help a sick child, how could you NOT do it? That’s one of the promises of Big Data – the more data that is analysed, the more we can learn about science and medicine, the more we can help future people. Seems reasonable to me?
I visited a new shoulder doctor last week and was handed a PC tablet, asking me all kinds of information. For example, how old were your grandparents when they died, from what, when and where? What surgeries have I or my parents or grandparents or my children ever had, for what and where, with what result. The detail was amazing. Do you know the medications your mother took? It was a lot of information, most of which I did not know and had never even wondered about. Being obsessed with the old-fashioned American notion of privacy, I politely informed the receptionist that I would not be participating. After explaining my obligation to potentially save a little girl’s life somewhere and some day, she informed me that participation in the study was mandatory to see the doctor. That’s when I freaked out . . .
Given the choice of seeing a doctor who specialized in my problem or maintaining a slight modicum of privacy, I sold my soul and completed the survey, albeit with sloppy, incorrect, and downright fanciful entries. Somehow, the letters BS come to mind??
The problem is not the worthy objective of saving little children some day. The problem is that sharing my private information was mandatory. There was no choice permitted, except to go home without the medical information I needed, which was neither reasonable nor fair. Has the sick little girl in the future taken my right to privacy now? Of course, I was assured my information will not be shared outside of the medical analysts. Of course, no insurance company will ever have access. Of course, there is zero possibility it will ever be hacked. “What, me worry?” What could go wrong?
Big Data has the potential of becoming Big BAD Data if they continue to abuse privacy.