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Chunk #1 — Introduction

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To share or not to share: a randomized trial of consent for data sharing in genome research.
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Some have criticized this shift in data access policy as being overly protective8 and some projects will only enroll participants who agree to full public data release.9 We have argued that all data sharing decisions involve an unavoidable trade-off between protecting privacy and advancing research and since individuals may vary in their judgments about this trade-off, decisions about DNA data release ought to be made by research participants during the informed consent process.10 However, a major policy concern is that giving participants control over decisions about data sharing will lead to excessive anxiety about protecting privacy and a reluctance to share data, negatively impacting research. We conducted a single blind, randomized controlled trial of three different types of consent, each affording varying levels of control over the decision about data sharing, in order to assess their impact on research enrollment into an underlying genomic study and participants’ data sharing preferences.