Related Experiment Video
Updated: Jun 14, 2025

Generation of Comprehensive Thoracic Oncology Database - Tool for Translational Research
Published on: January 22, 2011
TIERED ACCESS TO RESEARCH DATA FOR SECONDARY ANALYSIS
John E Marcotte1, Sarah Rush1, Kelly Ogden-Schuette1
1University of Michigan.
Abstract:
Research data have expanded in their gradation of the risks associated with both re-identification and harm, which has created a need for multiple levels of access controls beyond public and restricted access. Public-access data have typically been available for download from websites while restricted-access data usually require an application and formal authorization process. The old paradigm of classifying data as public-access or restricted-access is no longer sufficient. Access to research data requires more nuance to ensure the protection of human subjects. In this paper, we describe seven tiers of access to research data. Each tier adds requirements that are necessary to mitigate disclosure risk and confirm appropriate management of the data. Improper handling of the data includes attempting to find a specific individual or household or failing to follow disclosure protection rules for data and output included in papers and presentations. By establishing a ladder of access conditions, each higher tier meets and exceeds the requirements of the lower tiers. While the highest tier meets all requirements, this tier will impede legitimate research for most data. The challenge for repositories is to provide access in a manner that promotes research while specifying security that provides appropriate protections against the risks of re-identification and harm.

