Working Paper: Engineering data equity: the LISTEN principles
Data sharing is common practice amongst genomics researchers. So is not sharing. Open Science principles can be (and are) applied in ways that diminish or ignore benefit sharing. Māori communities may want to have control over access, use, and downstream benefits to their genetic data (human and taonga species). Is it technically possible to honor the various interests around genetic data?
This working paper provides some principles for doing just that. Underpinning those principles are existing (and emerging) international agreements such as the Nagoya Protocol.
Below is the abstract and a box containing the LISTEN principles. Read the paper here.
Abstract:
Several existing and proposed 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 (1) fundamentally incompatible with the principles of open science, or (2) 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 mesh database engineering and governance. We introduce a checklist of six design considerations (LISTEN: Licensed, Identified, Supervised, Transparent, Enforced, and Non-exclusive), which can be readily implemented by both new and existing platforms participating in benefit-sharing systems. Throughout, we highlight how these principles can act in concert with familiar principles of open science (e.g., “FAIR” data
