Reporting Actionable Research Results: Shared Secrets Can Save Lives

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Science Translational Medicine  18 Jul 2012:
Vol. 4, Issue 143, pp. 143cm8
DOI: 10.1126/scitranslmed.3003958


  • Fig. 1. Code read.

    An illustrative scenario for the Cryptex security approach. Step 1. Codes created. Participant gives sample to biobank and consent to be contacted to report actionable results. Biobank deidentifies the participant’s record, creates shared secret codes, keeps one shared secret code (B), and destroys links to participant’s identity. Researcher gets a set of deidentified records and one part of the shared secret code (R); data and safety monitoring board gets one part of the shared secret code. Step 2. Actionable research result detected. Researcher detects an actionable research result for a participant and reports this to the biobank and monitoring board. Biobank confirms result and reports the confirming results to the monitoring board. Step 3. Agreement to share. All three groups agree that the result should be shared with participant. Secret codes are shared to reveal participant’s identity (B, biobank; R, researcher; M, monitoring board). Biobank contacts participant and his or her physician and delivers the result.


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