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There are hundreds of these IRBs in the US—and they’re grappling with research ethics in the digital age largely on their own.
The Common Rule and the IRB system were born out of outrage, too—though over a far graver mistake.
In 2013, researchers at MIT found they could match names to publicly available DNA sequences based on information about research participants that the original researchers themselves posted online. “Someone needs to provide oversight, but the optimal body is unlikely to be an IRB, which usually lacks subject matter expertise in de-identification and re-identification techniques,” Michelle Meyer, a bioethicist at Mount Sinai, writes in an email.With new technology, a system that never quite worked is working even less.Elizabeth Buchanan, an ethicist at the University of Wisconsin-Stout, sees Internet-based research entering its third phase, which raises new ethical questions.“It’s in the intermingling that we can see the tension in the ethics and privacy,” she says.Buchanan recently sat on an IRB where she reviewed a proposal to merge social media mentions of the street name for a drug with publicly available crime information.
Under the Common Rule in the US, federally funded research has to go through ethical review.