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The acceptability of conducting data linkage research without obtaining consent: lay people’s views and justifications
BMC Medical Ethics 16 (1):79 (2015)
Abstract
A key ethical issue arising in data linkage research relates to consent requirements. Patients’ consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people’s views and their preferences about consent requirements in the context of data linkage. This study explores lay people’s views and justifications regarding the acceptability of conducting data linkage research without obtaining consentOther Versions
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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.
Sharing precision medicine data with private industry: Outcomes of a citizens’ jury in Singapore.Angela Ballantyne, Tamra Lysaght, Hui Jin Toh, Serene Ong, Andrew Lau, G. Owen Schaefer, Vicki Xafis, E. Shyong Tai, Ainsley J. Newson, Stacy Carter, Chris Degeling & Annette Braunack-Mayer - 2022 - Big Data and Society 9 (1).
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.
“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.
Trustworthy Governance of Genomic and Health-Related Data: Lessons from Singapore.Angela Ballantyne, G. Owen Schaefer, Ainsley J. Newson, Vicki Xafis, Hui Jin Toh, Serene Ong, Tamra Lysaght & E. Shyong Tai - forthcoming - Asian Bioethics Review.
References found in this work
Public attitudes to the use in research of personal health information from general practitioners' records: a survey of the Irish general public.Brian S. Buckley, Andrew W. Murphy & Anne E. MacFarlane - 2011 - Journal of Medical Ethics 37 (1):50-55.
The Use of Medical Records in Research: What Do Patients Want?Nancy E. Kass, Marvin R. Natowicz, Sara Chandros Hull, Ruth R. Faden, Laura Plantinga, Lawrence O. Gostin & Julia Slutsman - 2003 - Journal of Law, Medicine and Ethics 31 (3):429-433.
Consent for use of personal information for health research: Do people with potentially stigmatizing health conditions and the general public differ in their opinions?Donald J. Willison, Valerie Steeves, Cathy Charles, Lisa Schwartz, Jennifer Ranford, Gina Agarwal, Ji Cheng & Lehana Thabane - 2009 - BMC Medical Ethics 10 (1):10.
Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue.Donald J. Willison, Marilyn Swinton, Lisa Schwartz, Julia Abelson, Cathy Charles, David Northrup, Ji Cheng & Lehana Thabane - 2008 - BMC Medical Ethics 9 (1):18.
‘Nothing is really safe’: a focus group study on the processes of anonymizing and sharing of health data for research purposes.Gill Haddow, Ann Bruce, Shiva Sathanandam & Jeremy C. Wyatt - 2011 - Journal of Evaluation in Clinical Practice 17 (6):1140-1146.
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