Do Survey and Program Participants Get a Say? Informed Consent Requirements and Practices for Integrating Data

• Activity Number: 164
• Type: Topic Contributed
• Date/Time: Monday, August 2, 2010 : 10:30 AM to 12:20 PM
• Sponsor: Section on Government Statistics
• Author(s): Cindy Nickerson*+
• Companies: U.S. Department of Agriculture
• Keywords: administrative records ; informed consent ; legal issues ; federal statistical system ; integrated data sets

Abstract

Integrating administrative records with survey data can provide many benefits, such as improving data available for public policy research. However, many federal laws and regulations protect access to individuals' information. Difficulties with understanding requirements about when and how individual consent must be obtained to use administrative data impedes the increased statistical use of such data. This paper reviews requirements of major Federal legislation governing informed consent and provides examples of how Federal agencies achieve informed consent, including notices about data linking activities. It also reviews findings from studies examining effects of wording choice and notification method on individuals' receptivity to data linking. Recommendations for agencies seeking to use and link administrative data are summarized, as are constraints and remaining challenges.