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An Ethics Framework for Big Data in Health and Research
Vicki Xafis1, G Owen Schaefer1, Markus K Labude1
1Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore.
This study introduces an Ethics Framework for Big Data in Health and Research to guide ethical decision-making. It addresses complex issues in big data use, sharing, and reuse within healthcare and research settings.
Area of Science:
- Bioethics
- Health Informatics
- Data Science
Background:
- Ethical decision-making frameworks are crucial for navigating complex issues in big data.
- Big data in health and research presents unique ethical challenges regarding use, sharing, and reuse.
- Existing frameworks may not adequately address the specific values and concerns inherent in health-related big data.
Purpose of the Study:
- To present a novel Ethics Framework for Big Data in Health and Research.
- To outline the rationale and ethical concerns underpinning the framework.
- To provide a structured approach for addressing ethical issues in big data applications.
Main Methods:
- Development of a framework by a working group from the Science, Health and Policy-relevant Ethics in Singapore (SHAPES) Initiative.
- Identification of substantive and procedural values for ethical consideration.
- Description of a step-by-step process for ethical issue resolution in big data.
Main Results:
- The paper details an Ethics Framework for Big Data in Health and Research.
- It outlines key ethical concerns and proposes a set of values for consideration.
- A systematic process for ethical decision-making in big data contexts is presented.
Conclusions:
- The developed framework provides a methodical approach to ethical decision-making for big data in health and research.
- It supports the responsible use, sharing, and reuse of health data.
- The framework serves as a foundation for addressing ethical challenges across various big data domains.
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