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Towards a data sharing Code of Conduct for international genomic research
Bartha Maria Knoppers1, Jennifer R Harris, Anne Marie Tassé
1Department of Human Genetics, McGill University, 740 Dr Penfield Avenue, Montreal, Quebec H3A 1A4, Canada. bartha.knoppers@mcgill.ca.
Genome Medicine
|July 27, 2011
Summary
International genomics research requires clear data sharing principles. Three organizations propose seven principles and a code of conduct to guide ethical and scientific data access, respecting participant contributions and advancing knowledge.
Area of Science:
- Genomics
- Bioethics
- Epidemiology
Background:
- Data sharing is crucial for scientific advancement and participant respect.
- Increasing data access requests necessitate standardized global protocols.
- Collaborative international genomics research faces unique data sharing challenges.
Purpose of the Study:
- To develop data sharing principles tailored for international genomics research.
- To propose a preliminary international data sharing Code of Conduct.
- To foster discussion on ethical and scientific data sharing practices.
Main Methods:
- Collaboration between three key organizations: P3G, ENGAGE, and HeLEX.
- Development of seven distinct data sharing principles.
- Drafting of an international data sharing Code of Conduct.
Main Results:
- Proposal of seven data sharing principles.
- A preliminary international data sharing Code of Conduct is presented.
- A framework for discussion on global genomics data sharing is established.
Conclusions:
- Standardized principles are essential for ethical and effective international genomics data sharing.
- The proposed principles and code of conduct aim to facilitate global research collaboration.
- Ongoing discussion is vital for refining international data sharing practices.
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