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To share or not to share is the question
Donald R C Chalmers1, Dianne Nicol1, Margaret F Otlowski1
1Centre for Law and Genetics, University of Tasmania, Private Bag 89, Hobart, TAS 7001, Australia.
Applied & Translational Genomics
|June 14, 2016
Summary
Sharing biomedical data is crucial for research and practice. This article reviews best practices for data sharing, focusing on ethical and legal challenges and the Global Alliance for Genomics and Health framework.
Area of Science:
- Biomedical research
- Clinical practice
- Data science
Background:
- Data sharing is vital for advancing biomedical research and clinical practice.
- The focus has shifted from the necessity of data sharing to optimizing its implementation.
- Ethical and legal considerations, including consent and privacy, are paramount.
Purpose of the Study:
- To discuss recent advancements in establishing best practice guidelines for data sharing.
- To highlight the ethical and legal challenges associated with optimal data exchange.
- To examine the Global Alliance for Genomics and Health (GA4GH) draft Framework of Conduct for Data Sharing.
Main Methods:
- Review of current literature on data sharing guidelines.
- Analysis of ethical and legal challenges in data exchange.
- Examination of the GA4GH Framework of Conduct for Data Sharing.
Main Results:
- Best practice guidelines for data sharing are evolving.
- Ethical and legal issues, particularly consent and privacy, require careful consideration.
- The GA4GH Framework of Conduct offers a structured approach to responsible data sharing.
Conclusions:
- Optimal data sharing requires robust ethical and legal frameworks.
- Guidelines and frameworks like GA4GH are essential for navigating the complexities of biomedical data exchange.
- Continued development of best practices is necessary to ensure responsible and effective data sharing.
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