Essentials of the disclosure review process: a federal perspective.
MANY RESEARCHERS NEED TO MAKE arrangements to share de-identified electronic data files. However, the ways in which respondent identity may be protected are not well understood or are assumed to be the special province of large statistical agencies or specialized statisticians. Approaches to data sharing and protecting respondent identity have been pioneered by federal agencies which gather data vital to political and economic decision making. These agencies are required by statutory law both to assure confidentiality and to share data in usable form with other governmental agencies and with scholars who perform needed analyses of those data. The basic principles of disclosure limitation developed by the Census Bureau, the National Center for Health Statistics, and other federal agencies are fundamental to meeting new funding requirements to share and deidentify data, and are often referred to in the literature on data sharing. We describe how these principles are employed by the Disclosure Review Boards (DRBs) of these two agencies, and then state these principles in more general terms that are applicable to any disclosure review process. The kinds of data that academic institutions share may call for less complex or stringent DRBs and specific nondisclosure procedures different from those employed by federal agencies, but the same general principles apply. Specific application of these six principles by non-government researchers will depend on the nature of their data, their own institutional resources, and the likely future usefulness of their data.
Zarate
Alvan O
AO
National Center for Health Statistics, Centers for Disease Control and Prevention.
Zayatz
Laura
L