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How Can We Not Waste Legacy Genomic Research Data?

Susan E Wallace1, Emily Kirby2, Bartha Maria Knoppers2

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Summary

Researchers can now determine how to share legacy genomic and biomedical data for secondary research. A new filter helps assess data sharing compliance and identify necessary actions, preventing valuable research from being underutilized.

Keywords:
consentdata sharinggenomic researchpolicysecondary research

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Area of Science:

  • Genomics
  • Biomedical Research
  • Data Science

Background:

  • Sharing legacy genomic and biomedical data for secondary research presents ethical and regulatory challenges.
  • Underutilization of publicly funded research data limits scientific advancement.
  • Current data sharing practices often fail to meet requirements for legacy datasets.

Purpose of the Study:

  • To introduce a novel filter designed to assist researchers in evaluating the shareability of legacy data.
  • To provide actionable steps for enhancing data sharing compliance for existing datasets.
  • To promote the secondary use of valuable biomedical and genomic research data.

Main Methods:

  • Development of a data sharing compliance filter through the Global Alliance for Genomics and Health driver projects.
  • Evaluation of the filter's utility in assessing legacy data for secondary research purposes.

Main Results:

  • The developed filter provides a clear framework for researchers to understand data sharing limitations.
  • The filter identifies specific actions required to enable broader data sharing.
  • Facilitates the secondary use of valuable research data.

Conclusions:

  • The filter offers a practical solution to overcome barriers in sharing legacy genomic and biomedical data.
  • Implementing this tool can maximize the impact of research investments and accelerate scientific discovery.
  • Encourages a move away from "single-use" research data.