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Updated: Sep 13, 2025

Targeted Next-generation Sequencing and Bioinformatics Pipeline to Evaluate Genetic Determinants of Constitutional Disease
Published on: April 4, 2018
The LISTEN principles for genetic sequence data governance and database engineering
Colin J Carlson1, Monica Granados2, Alexandra Phelan3
1Department of Epidemiology of Microbial Diseases, Yale School of Public Health, New Haven, CT, USA. colin.carlson@yale.edu.
None:
Several international legal agreements include an 'access and benefit-sharing' (ABS) mechanism that attaches obligations to the use of genetic sequence data. These agreements are frequently subject to critique on the grounds that ABS is either fundamentally incompatible with the principles of open science, or technically challenging to implement in open scientific databases. Here, we argue that these critiques arise from a misinterpretation of the principles of open science and that both considerations can be addressed by a set of simple principles that link database engineering and governance. We introduce a checklist of six database design considerations, LISTEN: licensed, identified, supervised, transparent, enforced and non-exclusive, which can be readily adopted by both new and existing platforms participating in ABS systems. We also highlight how these principles can act in concert with familiar principles of open science, such as findable, accessible, interoperable and reusable (FAIR) data sharing.
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