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Chunk #26 — 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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A primary outcome was to determine if offering greater control over DNA data release during the informed consent process affected the rate of participation in or withdrawal from the genomic research. However, the common practice of participant recruitment into research studies may not have allowed us to accurately assess these parameters. Participants eligible for genomic studies were often approached informally by the study PI, a clinical research nurse, or a surgical resident and only those who expressed an interest were formally recruited. All of the genomic studies reported high enrollment rates, but these data may not capture individuals who were approached but not formally recruited. This informal screening typically occurred prior to randomization or exposure to the assigned consent.