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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.

Asian Bioethics Review
|March 15, 2021
PubMed
Summary

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.

Keywords:
Artificial intelligenceCross-sectorial dataData repositoriesEthics frameworkHealth and researchOpen sharingPrecision medicinePublic-private partnershipReal-world evidence

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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.