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Chunk #20 — Results — Refusal and Withdrawal Rates

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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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All of the genomic studies reported high enrollment rates (autism, 85.7%; brain cancer, 80.9%; brain control, 61.5%; epilepsy, 85.7%; liver cancer, 97%; pancreatic cancer, 98.1%). Variations in genomic study enrollment rates were due to individual recruitment methods and the populations under study and were not reflective of issues with the consent process or study or data sharing concerns. Only 20 individuals overall declined participation. Of those, four were randomized to traditional consent, six to binary, three to tiered, and seven were not randomized to a consent type prior to declining. Most who declined participation in the genomic study reported that they did so because of general research-related concerns (e.g., blood draw, no time). Only one participant, randomized to binary consent, specified apprehension about data sharing.