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Data access arrangements in genomic research consortia.

Dianne Nicol1, Jane Nielsen2, Madeleine Archer3

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Genomic research consortia use varied language for data sharing. This study found 12 distinct access arrangements, with most using tiered access, highlighting a need for clearer terminology in genomic data sharing.

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Area of Science:

  • Genomics
  • Bioinformatics
  • Data Science

Background:

  • Genomic research consortia are key to sharing valuable research data.
  • Current terminology for describing data sharing arrangements lacks standardization.
  • Calls for more uniform language in genomic data sharing policies have been made.

Purpose of the Study:

  • To review the diversity in language used by genomic research consortia to describe data access.
  • To analyze the types of data access arrangements employed by these consortia.

Main Methods:

  • Literature review of genomic research consortium publications.
  • Analysis of publicly available data from 98 genomic research consortia.

Main Results:

  • Identified a wide diversity in terminology and access arrangements over time.
  • Cataloged 12 distinct access arrangements, including simple (open, consortium, managed, registered) and complex tiered forms.
  • Observed that most consortia utilize tiered access, often influenced by funder policies (e.g., NIH, Wellcome Trust).

Conclusions:

  • Significant variation exists in how genomic research consortia describe their data access.
  • Greater consistency, clarity, and transparency in data sharing language would benefit all stakeholders.
  • Further work is needed to standardize terminology and improve understanding of genomic data access arrangements.