Precision Medicine and Big Data: The Application of an Ethics Framework for Big Data in Health and Research
Asian Bioethics Review 11 (3):275-288 (2019)
Abstract
As opposed to a ‘one size fits all’ approach, precision medicine uses relevant biological, medical, behavioural and environmental information about a person to further personalize their healthcare. This could mean better prediction of someone’s disease risk and more effective diagnosis and treatment if they have a condition. Big data allows for far more precision and tailoring than was ever before possible by linking together diverse datasets to reveal hitherto-unknown correlations and causal pathways. But it also raises ethical issues relating to the balancing of interests, viability of anonymization, familial and group implications, as well as genetic discrimination. This article analyses these issues in light of the values of public benefit, justice, harm minimization, transparency, engagement and reflexivity and applies the deliberative balancing approach found in theEthical Framework for Big Data in Health and Research to a case study on clinical genomic data sharing. Please refer to that article for an explanation of 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. Our discussion is meant to be of use to those involved in the practice as well as governance and oversight of precision medicine to address ethical concerns that arise in a coherent and systematic manner.Author's Profile
DOI
10.1007/s41649-019-00094-2
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Citations of this work
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.
“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore.Tamra Lysaght, Angela Ballantyne, Vicki Xafis, Serene Ong, Gerald Owen Schaefer, Jeffrey Min Than Ling, Ainsley J. Newson, Ing Wei Khor & E. Shyong Tai - 2020 - BMC Medical Ethics 21 (1):1-11.
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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.
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Big Data and Public-Private Partnerships in Healthcare and Research: The Application of an Ethics Framework for Big Data in Health and Research.Angela Ballantyne & Cameron Stewart - 2019 - Asian Bioethics Review 11 (3):315-326.
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.