Anonymous Data Management For A Federally Funded Cohort Study

A large federally funded and ongoing epidemiologic investigation of chronic diseases sought to carry out genetic analysis of archived blood samples. Concern for the privacy of the participants was raised by the Institutional Review Board of the study's host institution. The Principal Investigator of the study sought a solution that would definitively preserve the anonymity of the genetic results, but would also retain the ability to link the genetic information to disease and risk factor information for statistical analysis. The solution was an anonymous data management system that protected the anonymity of genetic information by encrypting identities using a one-way function. The mathematical properties of the one-way function ensured that the original identifiers could not be derived from the encrypted link, but also that each participant's genetic information would be uniquely associated with their individual records. Working with a programmer, the final delivered products were data-entry and data-linking applications that carried out the primary tasks of anonymous data management. Similar solutions can be implemented using industry standard and open source databases and programming languages.

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