'Data is the new oil': citizen science and informed consent in an era of researchers handling of an economically valuable resource
| Autor: | Etain Quigley, Ingrid Holme, David M. Doyle, Aileen K. Ho, Eamonn Ambrose, Katie Kirkwood, Gerardine Doyle |
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| Rok vydání: | 2021 |
| Předmět: |
Ethics
Data Informed Consent R723-726 Medical philosophy. Medical ethics Research 06 humanities and the arts Citizen science Management Monitoring Policy and Law 0603 philosophy ethics and religion Biochemistry Genetics and Molecular Biology (miscellaneous) Research Personnel 03 medical and health sciences Philosophy 0302 clinical medicine Research Design Humans 060301 applied ethics 030212 general & internal medicine GDPR Huntington’s disease |
| Zdroj: | Life Sciences, Society and Policy, Vol 17, Iss 1, Pp 1-13 (2021) Life Sciences, Society and Policy |
| ISSN: | 2195-7819 |
| Popis: | As with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered. |
| Databáze: | OpenAIRE |
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