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Navigating data sharing in research.

Anna C F Lewis1, Ellen W Clayton2, Hana Bangash3

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American Journal of Human Genetics
|April 30, 2026
PubMed
Summary
This summary is machine-generated.

Balancing open data sharing with participant privacy is crucial in biomedical research. The eMERGE-IV Network adapted data sharing strategies to protect vulnerable groups from potential harms, prioritizing ethical considerations alongside scientific advancement.

Keywords:
consortium sciencedata sharingethics

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Area of Science:

  • Biomedical research
  • Genomics
  • Data science

Background:

  • Funders and journals increasingly mandate biomedical research data sharing to accelerate discovery.
  • Data openness must be balanced with protecting research participants from harm, especially in sensitive areas like genomics.
  • Evolving legal and social landscapes necessitate adaptive strategies for responsible data sharing.

Purpose of the Study:

  • To examine challenges in implementing "as open as possible, as closed as necessary" data sharing.
  • To analyze the impact of recent US legal developments on genomic data sharing practices.
  • To identify strategies for mitigating individual- and group-level harms from genomic data analyses.

Main Methods:

  • Drawing on experiences from the Electronic Medical Records and Genomics (eMERGE-IV) Network.
  • Implementing strategies such as cell suppression for race/ethnicity data.
  • Revising data extraction protocols for electronic health records.

Main Results:

  • Recent legal changes (e.g., Dobbs decision) highlighted risks in genomic data sharing.
  • eMERGE-IV adapted strategies, including data suppression and selective data extraction, to mitigate harms.
  • These adaptations balanced immediate participant protection with long-term scientific benefits for underrepresented groups.

Conclusions:

  • Informed consent alone cannot fully address the "as closed as necessary" construct due to sociolegal changes.
  • Robust data governance and participant engagement are essential for protecting research participants.
  • The research enterprise must develop transparent, inclusive governance structures to maintain public trust while advancing science.