Policy ForumINFORMATION ACCESS

Raw Personal Data: Providing Access

Science  24 Jan 2014:
Vol. 343, Issue 6169, pp. 373-374
DOI: 10.1126/science.1249382

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Summary

Heated debates on responsibilities in biomedical research currently focus on the end of the data and information pipeline: They revolve around issues of returning results to participants and patients (13, 4). Although these debates are timely, they miss a crucial point at the beginning of the pipeline: the question of whether sample donors are able to access the raw data derived directly from their stored sample. The U.S. Presidential Commission recently reviewed 32 reports from the United States and worldwide on returning of findings in diverse contexts (4); it is striking that access to raw data by participants was not addressed in any of them.

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