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<p>In the field of genomics, the secure and responsible sharing of data across institutions and borders is critical for advancing research and improving healthcare. However, challenges such as inconsistent terminology, data localization requirements, and cross-border data transfer regulations impede collaboration and innovation. To address these barriers, the Global Alliance for Genomics and Health (GA4GH), a global standards-setting organization in genomics, has developed a standardized lexicon of key terms for data sharing, including the nascent terms <i>data visiting</i> and <i>federated data analysis</i>. These definitions aim to improve communication within the genomics community by ensuring a consistent understanding of complex processes, addressing challenges like data localization and cross-border transfer. This article introduces these recently developed data sharing-related terms and considers their implications for data governance and global health research.</p>

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Communicating clearly about data sharing in genomics

  • 期刊论文

  • 出版模式：

    开放获取

  • 发表日期：

    2025年7月14日

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  • Donrich Thaldar,
  • Diya Uberoi,
  • Adrian Thorogood,
  • Richard Milne,
  • Ainsley J. Newson,
  • Alison Hall,
  • David Glazer,
  • Paul Esselaar,
  • Yann Joly

摘要

In the field of genomics, the secure and responsible sharing of data across institutions and borders is critical for advancing research and improving healthcare. However, challenges such as inconsistent terminology, data localization requirements, and cross-border data transfer regulations impede collaboration and innovation. To address these barriers, the Global Alliance for Genomics and Health (GA4GH), a global standards-setting organization in genomics, has developed a standardized lexicon of key terms for data sharing, including the nascent terms data visiting and federated data analysis. These definitions aim to improve communication within the genomics community by ensuring a consistent understanding of complex processes, addressing challenges like data localization and cross-border transfer. This article introduces these recently developed data sharing-related terms and considers their implications for data governance and global health research.