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September 2018

Data Sharing—The Time Has (Not Yet?) Come

Author Affiliations
  • 1Feinberg School of Medicine, Northwestern University, Chicago, Illinois
  • 2Deputy Editor, JAMA Cardiology
  • 3Department of Medicine, Stanford University, Stanford, California
  • 4Northwestern Memorial Hospital, Chicago, Illinois
  • 5Editor, JAMA Cardiology
JAMA Cardiol. 2018;3(9):797-798. doi:10.1001/jamacardio.2018.1939

For several years there have been well-articulated discussions of the need to share data that come from randomized clinical trials.1-7 The voices have come from clinical researchers, those who fund research, journal editors, legislators, and, most importantly, patients and their advocates. We have heard these calls for shared data and applaud the intent of open data repositories and full transparency while sharing the concerns of unlimited access to patient-level data that are obtained in highly structured clinical trials. Many have opined on this question. The International Committee of Medical Journal Editors released a definitive position in 2016.8 It believes that there is an “ethical obligation” to responsibly share data. The editors further suggested that clinical trial registrations should include a transparent plan for data sharing. Bauchner et al4 have supported this idea by arguing that we have a responsibility to study participants to optimize the use of data from clinical trials, stating, “The social contract for taking these risks and experiencing these harms imposes an ethical obligation that the results lead to the greatest benefit to society.” Rosenbaum9 stated the questions well: data scientists support data sharing as a means to uncover missed opportunities and guarantee that results from publicly funded trials are available for the greater good.9 However, trialists support a proprietary interest in the ownership of the data that facilitates future trials and mitigates concerns over misinterpretation.6 Many have referred to the sentiments of Rory Collins: “What problem are we trying to solve?”9

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