Human subjects protection

To protect subjects' identities, the 18 elements enumerated in the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule that could be used to identify an individual or his/her relatives, employers, or household members are not included in the dataset. In accordance with this, names, birthdates, dates seen, geographic subdivisions smaller than a state that contain fewer than 20,000 people, and device identifiers and serial numbers have been excluded from the dataset. Unedited, verbatim responses stored as text (e.g., in comments fields) have been removed. Family relationships and data are included only in summary form; no pedigrees (family trees) are included. New identification numbers replace original identification numbers. MR images have been defaced.

Nonetheless, given the wealth of aggregate data available, there exists a possibility, albeit small, that an individual could be identified. Thus, access to this data is not available unconditionally to the public, but is restricted to biomedical and biobehavioral researchers studying normal brain development, disorders, or diseases and/or developing image processing tools, whose institutions are covered by an FWA and who agree to the terms of the Data Use Certification.