Eric Dishman wants your data. As the director of the National Institutes of Health’s All of Usresearch program, he’s trying to convince 1 million Americans to donate reams of sensitive personal information to science. Electronic medical records? Gimme. Genetic data? He’ll take it. Residence history? His inbox waits with open arms.
Dishman’s goal is to build a database that can help all kinds of scientists make connections between how people are affected by a disease and what biographical differences they might share, which in turn could lead to new, more-personalized treatments. He’s not alone in his search for data donors. Experts who study the way science uses data say that both health and social sciences are increasingly reliant on collecting huge amounts of potentially sensitive information about human research subjects. And while participating in research has always carried risks, this new approach means that the amount of data collected is so large and the types of data are so interconnected that the risks have grown large and connected, too.
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