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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 consentLinks
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Citations of this work
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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.
“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.
Can we know if donor trust expires? About trust relationships and time in the context of open consent for future data use.Felix Gille & Caroline Brall - 2022 - Journal of Medical Ethics 48 (3):184-188.
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).
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.
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.
Informed consent for record linkage: a systematic review.Márcia Elizabeth Marinho da Silva, Cláudia Medina Coeli, Miriam Ventura, Marisa Palacios, Mônica Maria Ferreira Magnanini, Thais Medina Coeli Rochel Camargo & Kenneth Rochel Camargo - 2012 - Journal of Medical Ethics 38 (10):639-642.
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