Giving Compass’ Take:
• Scientists are calling for individuals to donate their data to improve their understanding of medical conditions and treatments.
• How does self-selection bias impact donate data? Is this a scalable form of data collection?
• This call may suffer from the global anxiety over data privacy.
Eric Dishman wants your data. As the director of the National Institutes of Health’s All of Us research 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.
Data donation is definitely in demand. For instance, you can donate social media and health data for suicide prevention research at OurDataHelps; download an app called Bitmark that connects data donors with researchers; or join a social movement led by a private company called Dateva that’s petitioning governments to make it mandatory for health care organizations to share data. Scientists have published calls for a post-death data-donation system, similar in concept to organ-donation and body-donation programs.
Read the full article about donating data to science by Maggie Koerth-Baker at FiveThirtyEight.
Since you are interested in Public Health, have you read these selections from Giving Compass related to impact giving and Public Health?
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