Data Access and Confidentiality Policies of the National Children's Study

• Activity Number: 158
• Type: Topic Contributed
• Date/Time: Monday, August 2, 2010 : 10:30 AM to 12:20 PM
• Sponsor: Section on Survey Research Methods
• Author(s): Jennifer Park* and Paymon Hashemi+
• Companies: Eunice Kennedy Shriver National Institute of Child Health and Human Development and Eunice Kennedy Shriver National Institute of Child Health and Human Development
• Keywords: National Children's Study ; data access ; confidentiality ; policies and procedures

Abstract

The National Children's Study (NCS) is designed to investigate the effects of environmental exposures and gene-environment interactions on pregnancy outcomes, child health and development, and precursors of adult disease. Environmental samples, bio-specimens, family history, ultrasounds and medical records, images, and direct assessment of health and development will be collected. This unprecedented array of sensitive, personally, and socially identifiable data requires an innovative, comprehensive, and evolving data access plan that responds to NCS principles of data integrity, data sharing, and protection of confidentiality in a changing scientific and regulatory climate. Data access policies and procedures will be presented, with special focus on the management of socially identifiable data, and sharing information with study communities, including Tribal Nations.