Jumping the Informed Consent Hurdle: Federal Agency Experiences

• Activity Number: 393
• Type: Topic Contributed
• Date/Time: Tuesday, August 2, 2011 : 2:00 PM to 3:50 PM
• Sponsor: Section on Government Statistics
• Author(s): Mary Frazier*+ and Cynthia Nickerson
• Companies: U.S. Census Bureau and U.S. Department of Agriculture
• Keywords: administrative records ; linking ; informed consent

Abstract

The Federal statistical community has understood the benefits of linking survey data and administrative records for many years and some federal agencies have been sharing and linking survey and administrative data for some time. Yet, other agencies often cite difficulties with obtaining access to administrative data or permission to link data for statistical purposes. One barrier is informed consent. Current law, regulation and guidance contain requirements regarding what individuals should be told about the purposes and use of data being collected. However, there is considerably less guidance on what individuals must be told when data are linked with other data sources for statistical purposes. This paper provides some examples of notice that effectively allow sharing of administrative records for statistical research purposes, with a focus on how notice is provided an the language used by agencies. It also includes a discussion regarding how some agency practices may ease the challenges associated with sharing administrative data for statistical purposes.