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  1. Experimental Design: Ethics, Integrity and the Scientific Method.Jonathan Lewis - 2020 - In Ron Iphofen (ed.), Handbook of Research Ethics and Scientific Integrity. Springer. pp. 459-474.
    Experimental design is one aspect of a scientific method. A well-designed, properly conducted experiment aims to control variables in order to isolate and manipulate causal effects and thereby maximize internal validity, support causal inferences, and guarantee reliable results. Traditionally employed in the natural sciences, experimental design has become an important part of research in the social and behavioral sciences. Experimental methods are also endorsed as the most reliable guides to policy effectiveness. Through a discussion of some of the central concepts (...)
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  • Towards trust-based governance of health data research.Marieke A. R. Bak, M. Corrette Ploem, Hanno L. Tan, M. T. Blom & Dick L. Willems - 2023 - Medicine, Health Care and Philosophy 26 (2):185-200.
    Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...)
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  • Retrospective Radiology Research: Do We Need Informed Patient Consent?Yfke Ongena, Thomas C. Kwee, Derya Yakar & Marieke Haan - forthcoming - Journal of Bioethical Inquiry:1-11.
    While knowledge of the population’s view on the need for informed consent for retrospective radiology research may provide valuable insight into how an optimal balance can be achieved between patient rights versus an expedited advancement of radiology science, this is a topic that has been ignored in the literature so far. To investigate the view of the general population, survey data were collected from 2407 people representative of the Dutch population. The results indicate that for non-commercial institutions, especially hospitals (97.4 (...)
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  • Research based on existing clinical data and biospecimens: a systematic study of patients’ opinions.Arne Einar Vaaler, Linda Tømmerdal Roten & Hilde Eikemo - 2022 - BMC Medical Ethics 23 (1):1-8.
    BackgroundThe aim of the present survey was to investigate newly discharged hospital patients’ opinions on secondary use of their hospital data and biospecimens within the context of health research in general and, more specifically, on genetic research, data sharing across borders and cooperation with the health industry.MethodsA paper questionnaire was sent to 1049 consecutive newly discharged hospital patients.ResultsThe vast majority of the respondents preferred to be informed or to receive no notification at all for secondary research on their health data (...)
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