Etain Quigley, Ingrid Holme, David M Doyle, Aileen K Ho, Eamonn Ambrose, Katie Kirkwood, Gerardine Doyle
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"Data is the new oil": citizen science and informed consent in an era of researchers handling of an economically valuable resource.
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.
期刊介绍:
The purpose of Life Sciences, Society and Policy (LSSP) is to analyse social, ethical and legal dimensions of the most dynamic branches of life sciences and technologies, and to discuss ways to foster responsible innovation, sustainable development and user-driven social policies. LSSP provides an academic forum for engaged scholarship at the intersection of life sciences, philosophy, bioethics, science studies and policy research, and covers a broad area of inquiry both in emerging research areas such as genomics, bioinformatics, biophysics, molecular engineering, nanotechnology and synthetic biology, and in more applied fields such as translational medicine, food science, environmental science, climate studies, research on animals, sustainability, science education and others. The goal is to produce insights, tools and recommendations that are relevant not only for academic researchers and teachers, but also for civil society, policy makers and industry, as well as for professionals in education, health care and the media, thus contributing to better research practices, better policies, and a more sustainable global society.