Gizmodo reports on privacy concerns raised regarding apps created using Apple’s relatively new ResearchKit, which connects health researchers with patients willing to provide data for studies, often collected via the iPhone’s various sensors. GlaxoSmithKline, for example, has released a new arthritis study that gets 300 patients to do wrist exercises and record their experiences. The article raises concerns about re-identification of anonymous data, and the company doing much of the anonymizing is clear that perfect de-identification is virtually impossible. There is also some concern from a bioethicist about how informed the consent is, given a nine-page pdf in 12-point font explains data use, though a GSK spokeswoman’s response added as an update seems to address that concern. Finally, there is a question as to whether the for-profit ethical review board is appropriate for the app’s creation, though another update makes clear that GSK also conducted two separate internal reviews.
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