In early 2025 Paul Esselaar attended a very useful workshop organised by the GA4GH (Global Alliance for Genomics and Health) workshop in Boston and met several fascinating experts in the area of genomics law. This part of GA4GH called “REWS” (Regulatory and Ethics Work Stream) focusses on the law relating to health data, and in particular tends to focus on data protection legislation and its interface with health and particularly genomic health research. During discussions with scientists it became increasingly clear that one of the key challenges in genomics research is the inability to share useful data with other researchers due to legal constraints – as opposed to technical difficulties.
As part of REWS efforts to combat this challenge, a group came together and, over several months, developed a lexicon to help health researchers to communicate effectively with each other, particularly in the area of data visiting and federated data learning. The culmination of this work is a journal paper which was published by Human Genomics, is freely available and can be found here.
This paper defines and explains the following terms:
- Data sharing
- Data visiting
- Federated data analysis
- Remote data interrogation
- Cross-border data transfer
- Data localisation
Hopefully this paper and the standardisation of these terms will be a step in the right direction to assist researchers with their challenges to use genomic data for the benefit of humanity.
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