A Primer on Disclosure Risk

Abstract

In research data, disclosure occurs when an individual study participant is directly or indirectly identified. Data providers and researchers have the legal and ethical responsibility to protect the identity of their study participants. Legal regulations such as HIPAA, FERPA and CIPSEA govern the restriction of some types of information. Federal agencies, grant funders and universities set data governance compliance standards to minimize disclosure risk. This workshop will explain how to assess and remediate disclosure risk. The workshop will also describe types of private information and how to provide access to data in an appropriate manner..