Genomic study was also found to be significantly associated with final data release selection (Table 3). Participants from studies conducting pediatric research (autism, brain cancer, and brain control) were more restrictive in their final data release choices than individuals from studies targeting mostly adult populations (liver and pancreatic cancers) (chi-square test, p=.04). To determine if these differences could be categorized based on consentee relationship, parental consent decisions (n=113) were compared with adult/self consent decisions (n=221). Consentee relationship was significantly associated with one’s final data release selection (chi-square test, p<.001). After controlling for other variables, consentee relationship remained a significant predictor; participants providing parental consent were significantly less likely to chose public data release than adults consenting for themselves (restricted release OR, 3.56; CI, 1.57 – 8.08; no release OR, 4.78; CI, 1.46 – 15.64) (Table 4). Those participants who made decisions both for themselves (adult/self consent) and on behalf of their child (parental consent) (n=12) made the same data sharing choice for themselves as for their child.
