Elements of a New Ethical Framework for Big Data Research

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Elements of a New Ethical Framework for Big Data Research

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dc.contributor.author Vayena, Effy
dc.contributor.author Gasser, Urs
dc.contributor.author Wood, Alexandra B
dc.contributor.author O'Brien, David
dc.contributor.author Altman, Micah
dc.date.accessioned 2016-09-26T17:20:47Z
dc.date.issued 2016
dc.identifier.citation Vayena, Effy, Urs Gasser, Alexandra Wood, David O'Brien, and Micha Altman. 2016. Elements of a New Ethical Framework for Big Data Research. Washington and Lee Law Review Online 72 (3): Article 5. en_US
dc.identifier.uri http://nrs.harvard.edu/urn-3:HUL.InstRepos:28552577
dc.description.abstract Emerging large-scale data sources hold tremendous potential for new scientific research into human biology, behaviors, and relationships. At the same time, big data research presents privacy and ethical challenges that the current regulatory framework is ill-suited to address. In light of the immense value of large-scale research data, the central question moving forward is not whether such data should be made available for research, but rather how the benefits can be captured in a way that respects fundamental principles of ethics and privacy. In response, this Essay outlines elements of a new ethical framework for big data research. It argues that oversight should aim to provide universal coverage of human subjects research, regardless of funding source, across all stages of the information lifecycle. New definitions and standards should be developed based on a modern understanding of privacy science and the expectations of research subjects. In addition, researchers and review boards should be encouraged to incorporate systematic risk-benefit assessments and new procedural and technological solutions from the wide range of interventions that are available. Finally, oversight mechanisms and the safeguards implemented should be tailored to the intended uses, benefits, threats, harms, and vulnerabilities associated with a specific research activity. Development of a new ethical framework with these elements should be the product of a dynamic multistakeholder process that is designed to capture the latest scientific understanding of privacy, analytical methods, available safeguards, community and social norms, and best practices for research ethics as they evolve over time. Such a framework would support big data utilization and help harness the value of big data in a sustainable and trust-building manner. en_US
dc.language.iso en_US en_US
dc.publisher Washington & Lee University School of Law en_US
dc.relation.isversionof http://lawreview.journals.wlu.io/elements-of-a-new-ethical-framework-for-big-data-research/ en_US
dash.license LAA
dc.title Elements of a New Ethical Framework for Big Data Research en_US
dc.type Journal Article en_US
dc.description.version Version of Record en_US
dc.relation.journal Washington and Lee Law Review Online en_US
dc.date.available 2016-09-26T17:20:47Z

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