2014
DOI: 10.1177/1747016113504778
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Making researchers moral: Why trustworthiness requires more than ethics guidelines and review

Abstract: Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees), and formal procedures (informed consent). The process of institutionalising distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the… Show more

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Cited by 36 publications
(24 citation statements)
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References 43 publications
(64 reference statements)
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“…What is more, there is a clear need, well detected in Europe, 5 to promote among people a better understanding of the importance of public health research, that is performed by the use of health data, and in particular of large numbers of medical records. Assuming – as we did – that privacy concerns basically drove the response to our survey outcome, we agree with Johnsson and colleagues 12 that, beyond the legal efforts to protect individual privacy, it is central to address the responsibility and moral commitment of researchers and health care personnel. When public health activities are concerned, no new legal framework will be effective if moral education of researchers and operators is not pursued.…”
Section: Discussionsupporting
confidence: 68%
“…What is more, there is a clear need, well detected in Europe, 5 to promote among people a better understanding of the importance of public health research, that is performed by the use of health data, and in particular of large numbers of medical records. Assuming – as we did – that privacy concerns basically drove the response to our survey outcome, we agree with Johnsson and colleagues 12 that, beyond the legal efforts to protect individual privacy, it is central to address the responsibility and moral commitment of researchers and health care personnel. When public health activities are concerned, no new legal framework will be effective if moral education of researchers and operators is not pursued.…”
Section: Discussionsupporting
confidence: 68%
“…However, what counts as clinically useful or in someone's best interests partly depends on the perspective of the individual, and researchers can only act in accordance with these preferences when these are known. Similar to the debate in genomics (Vos et al, 2017), we believe that biobank research on patient-derived organoids calls for a recalibration of researchers' duties around the protection of privacy, the disclosure of research findings, and data-sharing, for which we believe more active forms of involvement of patient-participants is useful (Berkman et al, 2014;Jarvik et al, 2014;Johnsson et al, 2014;Viberg et al, 2014).…”
Section: Limitations Of the Current Approach In Biobank-based Researchmentioning
confidence: 92%
“…These guidelines have been carefully formulated around the concerns of the indigenous peoples themselves, and the assumption is that certain values are considered to be general among many indigenous groups within the same country (NESH 2002;Hudson et al 2010; Tri-Council Policy Statement 2010: Ethical Conduct for Research Involving Humans 2010; GERAIS 2012). This cannot be considered the final word on the matter because naturally, and as noted by Johnsson et al (2014), ethical guidelines cannot automatically guarantee ethical behaviour on the part of researchers; they do, however, usually encourage reflection and thoughtfulness.…”
Section: The Ethics Of Sami Researchmentioning
confidence: 99%