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1.
Eur J Hum Genet ; 30(9): 1000-1010, 2022 09.
Article in English | MEDLINE | ID: mdl-35705790

ABSTRACT

Recall by Genotype (RbG), Genotype-driven-recall (GDR), and Genotype-based-recall (GBR) strategies are increasingly used to conduct genomic or biobanking sub-studies that single out participants as eligible because of their specific individual genotypic information. However, existing regulatory and governance frameworks do not apply to all aspects of genotype-driven research approaches. The recall strategies disclose or withhold personal genotypic information with uncertain clinical utility. Accordingly, this scoping review aims to identify peculiar, explicit and implicit ethical, legal, and societal/social implications (ELSI) of RbG study designs. We conducted a systematic literature search of three electronic databases from November 2020 to February 2021. We investigated qualitative and quantitative research methods used to report ELSI aspects in RbG research. Congruent with other research findings, we identified a lack of qualitative research investigating the particular ELSI challenges with RbG. We included and analysed the content of twenty-five publications. We found a consensus on RbG posing significant ethical issues, dilemmas, barriers, concerns and societal challenges. However, we found that the approaches to disclosure and study-specific recall and communication strategies employed consent models and Return of Research Results (RoRR) policies varied considerably. Furthermore, we identified a high heterogeneity in perspectives of participants and experts about ELSI of study-specific RbG policies. Therefore, further fine-mapping through qualitative and empirical research is needed to draw conclusions and re-fine ELSI frameworks.


Subject(s)
Biological Specimen Banks , Genomics , Genotype , Humans , Morals , Research Report
2.
Sci Eng Ethics ; 26(2): 597-617, 2020 Apr.
Article in English | MEDLINE | ID: mdl-31016482

ABSTRACT

Much has been said about the need for improving the current definitions of scientific authorship, but an aspect that is often overlooked is how to formulate and communicate these definitions to ensure that they are comprehensible and useful for researchers, notably researchers active in international research consortia. In light of a rapid increase in international collaborations within natural sciences, this article uses authorship of this branch of sciences as an example and provides suggestions to improve the comprehensibility of the definitions of authorship in natural sciences. It assesses whether the definition of authorship provided by the European Code of Conduct for Research Integrity can deal with current issues and problems of scientific authorship. Notably, problems that are experienced in project groups with researchers coming from multiple countries. Using theories developed by Jürgen Habermas and Robert Merton, a normative framework is developed to articulate ethical authorship in natural sciences. Accordingly, enriching the current definition of authorship with normative elements and using discipline-specific metaphors to communicate them are introduced as possible ways of improving the comprehensibility of the definition of authorship in international environments. Finally, this article provides a proposal to be considered in the future revisions of the European Code of Conduct for Research Integrity.


Subject(s)
Authorship , Research Personnel , Humans
3.
Public Underst Sci ; 22(8): 988-98, 2013 Nov.
Article in English | MEDLINE | ID: mdl-23825235

ABSTRACT

Evolution has met with considerable religious opposition for 150 years and is still controversial among various religious groups. This article tries to understand the evolution controversy by reframing it as a phenomenon of public understanding of science. Three paradigms were used as hypotheses for the rejection of evolution by Dutch Protestant Christians: knowledge deficit, attitude deficit and trust deficit. Ten Dutch Protestants rejecting evolution were interviewed about their views concerning evolution and science. It was found that the main reason for rejecting evolution was an a priori decision to trust the Bible more than science. Any views on science and evolution were based on this decision, so all three hypotheses, which suggest an a posteriori decision, were found to be not sufficient to explain the rejection of evolution, even though both a knowledge deficit and a trust deficit were found for some participants. However, all respondents felt that their a priori decision was supported by scientific facts. All respondents stated that evolution does not meet the criteria for good science and is therefore as unscientific as the belief in creation. Excluding evolution from science allows the respondents to retain their positive attitudes towards science.

4.
Sci Eng Ethics ; 12(3): 533-41, 2006 Jul.
Article in English | MEDLINE | ID: mdl-16909155

ABSTRACT

The Schön misconduct case has been widely publicized in the media and has sparked intense discussions within and outside the scientific community about general issues of science ethics. This paper analyses the Report of the official Committee charged with the investigation in order to show that what at first seems to be a quite uncontroversial case, turns out to be an accumulation of many interesting and non-trivial questions (of both ethical and philosophical interest). In particular, the paper intends to show that daily scientific practices are structurally permeated by chronic problems; this has serious consequences for how practicing scientists assess their work in general, and scientific misconduct in particular. A philosophical approach is proposed that sees scientific method and scientific ethics as inextricably interwoven. Furthermore, the paper intends to show that the definition of co-authorship that the members of the Committee use, although perhaps clear in theory, proves highly problematic in practice and raises more questions that it answers. A final plea is made for a more self-reflecting attitude of scientists as far as the moral and methodological profile of science is concerned as a key element for improving not only their scientific achievements, but also their assessment of problematic cases.


Subject(s)
Ethics, Research , Peer Review, Research , Scientific Misconduct , Authorship , Education, Professional , Ethics, Research/education , Humans , Nanotechnology/ethics , Organizational Case Studies , Terminology as Topic
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