Asian Bioethics Review 11 (3):315-326 (2019)
Abstract |
Public-private partnerships are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation of public sector health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service providing patient data to Google’s DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR. Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data.
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DOI | 10.1007/s41649-019-00100-7 |
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References found in this work BETA
An Ethics Framework for Big Data in Health and Research.Vicki Xafis, G. Owen Schaefer, Markus K. Labude, Iain Brassington, Angela Ballantyne, Hannah Yeefen Lim, Wendy Lipworth, Tamra Lysaght, Cameron Stewart, Shirley Sun, Graeme T. Laurie & E. Shyong Tai - 2019 - Asian Bioethics Review 11 (3):227-254.
The Social Licence for Research: Whycare.Dataran Into Trouble.Pam Carter, Graeme T. Laurie & Mary Dixon-Woods - 2015 - Journal of Medical Ethics 41 (5):404-409.
Openness in Big Data and Data Repositories: The Application of an Ethics Framework for Big Data in Health and Research.Vicki Xafis & Markus K. Labude - 2019 - Asian Bioethics Review 11 (3):255-273.
Real-World Data to Generate Evidence About Healthcare Interventions: The Application of an Ethics Framework for Big Data in Health and Research.Wendy Lipworth - 2019 - Asian Bioethics Review 11 (3):289-298.
Cross-Sectoral Big Data: The Application of an Ethics Framework for Big Data in Health and Research.Graeme T. Laurie - 2019 - Asian Bioethics Review 11 (3):327-339.
View all 8 references / Add more references
Citations of this work BETA
An Ethics Framework for Big Data in Health and Research.Vicki Xafis, G. Owen Schaefer, Markus K. Labude, Iain Brassington, Angela Ballantyne, Hannah Yeefen Lim, Wendy Lipworth, Tamra Lysaght, Cameron Stewart, Shirley Sun, Graeme T. Laurie & E. Shyong Tai - 2019 - Asian Bioethics Review 11 (3):227-254.
Precision Medicine and Big Data: The Application of an Ethics Framework for Big Data in Health and Research.G. Owen Schaefer, E. Shyong Tai & Shirley Sun - 2019 - Asian Bioethics Review 11 (3):275-288.
Ethics Review of Big Data Research: What Should Stay and What Should Be Reformed?Effy Vayena, Minerva Rivas Velarde, Mahsa Shabani, Gabrielle Samuel, Camille Nebeker, S. Matthew Liao, Peter Kleist, Walter Karlen, Jeff Kahn, Phoebe Friesen, Bobbie Farsides, Edward S. Dove, Alessandro Blasimme, Mark Sheehan, Marcello Ienca & Agata Ferretti - 2021 - BMC Medical Ethics 22 (1):1-13.
Cross-Sectoral Big Data: The Application of an Ethics Framework for Big Data in Health and Research.Graeme T. Laurie - 2019 - Asian Bioethics Review 11 (3):327-339.
Delivering a Practical Framework for Ethical Decision-Making Involving Big Data in Health and Research.Graeme T. Laurie & E. Shyong Tai - 2019 - Asian Bioethics Review 11 (3):223-225.
View all 8 citations / Add more citations
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