Google has announced the launch of its Baseline Study – a “moonshot” research effort to obtain the quantitative description of a healthy human body along with early precursors to the likelihood of eventual dreaded diseases. They’ll do this by assembling initially hundreds then thousands of volunteers who will donate their bodily data placed into an anonymous data bank. Researchers from Google Research, interested universities, and even private enterprises will ‘mine’ this data to create information that will be useful for administering personal and aggregate healthcare programs. (more here)
There’s a disquieting aspect to this report. Google’s efforts will be monitored by institutional review boards, primarily at Stanford and Duke. It is they who will determine “who are allowed” to analyze the data. And one of their prime efforts is to see that the data doesn’t get into the hands of insurance companies, and employers, and people planning to marry each other, and … . At this point most people are at a loss as how to evaluate this kind of oversight, and the cited WSJ article doesn’t provide much help. As RR readers know, there is a huge difference between data and information, the latter being made from the former. (more here)
To me it is clear that the assembled and maintained raw (and anonymous) database should be made very public, available for anyone to download or send away for a DVD that costs a nominal fee (determined by Google) to duplicate and mail. The information made from the data by various researchers may be confidential and/or proprietary, depending how it was developed and who paid for the effort. The information sets themselves become assets which may be incorporated into other software and decision support systems that should be able to be marketed like any other kind of information so derived.