Facebook has asked several major U.S. hospitals to share anonymized data about their patients, such as illnesses and prescription info, for a proposed research project. Facebook was intending to match it up with user data it had collected, and help the hospitals figure out which patients might need special care or treatment.
The proposal never went past the planning phases and has been put on pause after the Cambridge Analytica data leak scandal raised public concerns over how Facebook and others collect and use detailed information about Facebook users.
“This work has not progressed past the planning phase, and we have not received, shared, or analyzed anyone’s data,” a Facebook spokesperson told CNBC.
But as recently as last month, the company was talking to several health organizations, including Stanford Medical School and American College of Cardiology, about signing the data-sharing agreement. [Continue reading…]
Over the past year I have repeatedly asked Facebook for its stance on bulk harvesting and research use of its users’ data. Last February I asked the company if it had comment on the mass harvesting of data by commercial enterprises for political purposes and whether it had any policies prohibiting the use of personality quizzes or other apps that bulk harvested profiles. In June I asked it, in light of all of the ways Facebook itself was conducting research on its users, whether it might consider offering users the right to opt-out of having their personal data exploited by Facebook for research. In September, in the aftermath of the controversial “gaydar” study that claimed to be able to estimate someone’s sexual orientation from their photo and used a large volume of harvested Facebook data, I asked whether the work’s mass harvesting of profile photos was of concern to the company. Just last month I asked whether Facebook was planning to request that large holders of data harvested from the platform delete their archives or whether it planned to request that bulk Facebook datasets available for download be restricted to university researches and exclude commercial researchers. Not to mention countless other requests for comment about various Facebook research use of private user data. In every case the company’s response was silence.
If Facebook was so concerned about bulk harvesting and use of its users’ data, it certainly would seem that the company would have taken every opportunity to state that bulk harvesting, archival and commercial exploitation of private user data was something it was concerned about. It could comment that it was working to identify bulk harvesting, to request that companies and universities delete those archives or that it was asking that universities restrict access to the large harvested datasets they make available for download, limiting them to academic and not commercial uses. Instead, radio silence until the company lost control of the privacy narrative and suddenly decided now was the time to say it was shocked by how its data was being harvested and would take steps to reign it in. [Continue reading…]
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