This study has several limitations. All participants were recruited within a clinical setting. They may have formed a trusting relationship with study investigators, which could have influenced their willingness to participate and their data release choice. Additionally, all of the genomic studies were conducted at BCM in Houston, Texas. These findings may not be generalizable to other participant populations or geographic regions. Although all of the genomic studies used the same consent language, the consenting process varied across studies with regards to the consent process facilitator, length of time spent with the participants, and the timing of the consenting process (i.e., whether consent was obtained at a pre-operative visit, just prior to surgery, or during the post-operative period). These are some of the factors that may help explain the variations in data sharing choices among participants from individual studies.
