Privacy and confidentiality of donor information also received careful consideration. Although the project collected a limited data set from the BSSs, only de-identified data (http://www.hhs.gov/ocr/privacy/hipaa/administrative/privacyrule/index.html) will be distributed to collaborators in the GTEx project or to downstream secondary researchers. An electronic data capture system, the Comprehensive Data Resource described later in this article, controlled the display and access to data based on user roles and entitlements. BSSs could only view data from their own sites, and only a limited number of approved staff members within the GTEx project could view protected health information. In addition, the project established a combined material transfer agreement/data use agreement that covered all parties receiving either biospecimens or data.
