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Data Sharing For Precision Medicine: Policy Lessons And Future Directions.

Alessandro Blasimme1, Marta Fadda2, Manuel Schneider3

  • 1Alessandro Blasimme is a senior researcher in the Department of Health Sciences and Technology, Swiss Federal Institute of Technology-ETH Zürich, in Switzerland.

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Data sharing is crucial for precision medicine, but current guidelines are fragmented, hindering progress. Policy improvements focusing on privacy, interoperability, and adaptability are needed for a robust data-sharing ecosystem.

Keywords:
Data sharingInformed consentPolicyPrecision medicinePrivacy

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Area of Science:

  • Health Informatics
  • Biomedical Data Science
  • Genomic Medicine

Background:

  • Precision medicine relies heavily on robust data sharing for advancements.
  • Existing data-sharing guidelines from numerous organizations have not achieved desired data-sharing levels.
  • A gap exists between data-sharing guidance and its practical implementation in precision medicine.

Purpose of the Study:

  • To analyze data-sharing guidelines over the past two decades.
  • To identify reasons for the insufficient data sharing in precision medicine.
  • To propose recommendations for improving the data-sharing ecosystem.

Main Methods:

  • Comprehensive analysis of data-sharing guidelines from multiple organizations.
  • Review of policies issued over the last 20 years.
  • Identification of overlapping and fragmented policy themes.

Main Results:

  • Guidelines show overlap on core policy themes like privacy, consent, and data quality.
  • Significant fragmentation exists across different organizations and data types.
  • This fragmentation may be a key factor in the current data-sharing stalemate.

Conclusions:

  • Policy makers must address fragmentation to foster efficient data sharing.
  • Innovative approaches are needed for central themes such as privacy, consent, and data quality.
  • Guidance should prioritize interoperability, attribution, and public engagement, with adaptability for diverse data types.