Clinical Trial Participants’ Views of the Risks and Benefits of Data Sharing

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In a survey of participants in clinical trials, most believe the potential benefits of data sharing outweigh potential negative consequences and are willing to share their data. Less than 8% of respondents felt that the potential negative consequences of data sharing outweighed the benefits. A total of 93% were very or somewhat likely to allow their own data to be shared with university scientists, and 82% were very or somewhat likely to share with scientists in for-profit companies. Willingness to share data did not vary appreciably with the purpose for which the data would be used, with the exception that fewer participants were willing to share their data for use in litigation. We conducted a structured survey of 771 current and recent participants from a diverse sample of clinical trials at three academic medical centers in the United States.

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