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With Big Data Comes Big Responsibility
It is impossible to escape pronouncements about “big data” and the need for “big science” to use these data to pursue research. The purported promise of personalized medicine is just one example of complex health and social challenges that could benefit from greater breadth and depth of information about individuals. Academic framing of these issues tends to focus exclusively on potential benefits, such as breakthroughs in understanding of the causes of or cures for disease. Stories from the private sector include some promise, but also cautionary tales, for example of marketing gone wrong based on data-intensive predictive modeling. There are several implications of this contrast of promise and pitfall. First, the academic world should acknowledge that not all uses of data are benign, and ensure governance structures around “big data” sources that are informed with stakeholder and public input. Second, in a world of predictive analytics that accompany developments in data, the intended uses of analyses may be as important to consider as the analyses themselves. Finally, in this brave new world, all members of society are likely to be affected, regardless of inclusion in any specific data set. This calls into question continued reliance on individual-based ethics as our only guide to good practice and human protections. This talk will outline these issues and propose potential solutions.