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Published on: November 3, 2010
Principle of proportionality in genomic data sharing.
Caroline F Wright1, Matthew E Hurles1, Helen V Firth1,2
1Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, CB10 1SA, UK.
We propose a proportionality principle for genomic data sharing. This principle balances the amount of data shared against the number of recipients to ensure responsible data dissemination.
Area of Science:
- Genomics
- Bioethics
- Data Science
Background:
- Genomic data is increasingly shared for research.
- Current sharing practices lack a standardized ethical framework.
- Balancing data utility with privacy is crucial.
Purpose of the Study:
- To introduce a novel principle for governing genomic data sharing.
- To establish a framework for ethical and responsible data dissemination.
- To balance data depth with sharing breadth.
Main Methods:
- Conceptual framework development.
- Ethical analysis of data sharing models.
- Proportionality principle formulation.
Main Results:
- A principle of proportionality is proposed for genomic data.
- This principle weighs data depth against sharing breadth.
- It offers a quantitative approach to ethical data sharing.
Conclusions:
- The proportionality principle provides a robust ethical guideline.
- It promotes responsible innovation in genomic research.
- This framework supports secure and effective genomic data sharing.
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