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Chunk #22 — Discussion

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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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Studies have shown that participants are apprehensive about potential privacy invasions when participating in genomic research.11, 14, 15 This is the first study to examine in a randomized fashion how these concerns impact research enrollment and actual data sharing decisions. Our findings indicate that, despite privacy concerns, the majority of research participants are “information altruists”16 with regards to the public release of their genomic data.