| 1. |
- Boothby, Hugo
(författare)
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Ethics review of artistic research : challenging the boundaries and appealing for care
- 2024
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Ingår i: Research Ethics. - : Sage Publications. - 1747-0161 .- 2047-6094. ; 20:1, s. 112-127
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Tidskriftsartikel (refereegranskat)abstract
- In 2019, a new national Ethics Review Authority (Etikprövningsmyndigheten, EPM) was created in Sweden. In 2020, Sweden’s Ethical Review of Research Involving Humans Act was revised, tightening this legislation, and increasing penalties for its infraction. This article draws on empirical material generated by artistic research conducted with a norm-critical contemporary music ensemble. Two of the musicians who collaborated with this research identify as disabled. Consequently, in accordance with EPM, my artistic research was subject to mandatory ethics review. Reflecting critically on my own experience of seeking ethical approval for this artistic research project, I show how EPM’s process of ethics review enacts scientific boundary work in Sweden that privileges the interests of academic disciplines that are already well-established. As a corrective to EPM’s scientific boundary work I propose the application of an ethics of care that recognises the complex relationalities that exist between research institutions, researchers and research participants.
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| 2. |
- Bülow, William, et al.
(författare)
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Hostage authorship and the problem of dirty hands
- 2018
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Ingår i: Research Ethics. - : SAGE Publications Ltd. - 1747-0161 .- 2047-6094. ; 14:1, s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- This article discusses gift authorship, the practice where co-authorship is awarded to a person who has not contributed significantly to the study. From an ethical point of view, gift authorship raises concerns about desert, fairness, honesty and transparency, and its prevalence in research is rightly considered a serious ethical concern. We argue that even though misuse of authorship is always bad, there are instances where accepting requests of gift authorship may nevertheless be the right thing to do. More specifically, we propose that researchers may find themselves in a situation much similar to the problem of dirty hands, which has been frequently discussed in political philosophy and applied ethics. The problem of dirty hands is relevant to what we call hostage authorship, where the researchers include undeserving authors unwillingly, and only because they find it unavoidable in order to accomplish a morally important research goal.
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| 3. |
- Colnerud, Gunnel
(författare)
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Ethical dilemmas in research in relation to ethical review: An empirical study
- 2014
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Ingår i: Research Ethics. - : Sage Publications. - 1747-0161 .- 2047-6094. ; 10:4, s. 238-253
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the present article is to contribute empirically derived knowledge about Swedish researchers’ experience of ethical problems, conflicts and dilemmas in their research practice in relation to the ethical vetting legislation and procedure. The study has been carried out using the critical incident technique, with researchers from various disciplines providing examples from their own research practice of problems relating to research ethics. The analysis of the researchers’ responses indicates three phenomena, partly in line with similar studies in other countries: (i) the law of ethical vetting puts limits on the relevant research ethical questions; (ii) it is not possible to anticipate all questions of research ethics; and (iii) there are consequences to the fact that the boards for ethical vetting ignore problems that fall outside the law.
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| 4. |
- Johnsson, Linus, 1978-, et al.
(författare)
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Making researchers moral : Why trustworthiness requires more than ethics guidelines and review
- 2014
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Ingår i: Research Ethics. - : SAGE Publications. - 1747-0161 .- 2047-6094. ; 10:1, s. 29-46
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Tidskriftsartikel (refereegranskat)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 institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing.
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| 5. |
- Kuhlau, Frida, 1977-, et al.
(författare)
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The ethics of disseminating dual use knowledge
- 2013
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Ingår i: Research Ethics. - : SAGE Publications. - 1747-0161 .- 2047-6094. ; 9:1, s. 6-19
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Tidskriftsartikel (refereegranskat)abstract
- In 2011, for the first time ever, two scientific journals were asked not to publish research papers in full detail. The research in question was on the H5N1 influenza virus (bird flu), and the concern was that the expected public health benefits of disseminating the findings did not outweigh the potential harm should the knowledge be misused for malicious purposes. This constraint raises important ethical concerns as it collides with scientific freedom and openness. In this article, we argue that constraining the dissemination of dual-use knowledge can in certain cases be justified because, for example: scientists have a responsibility for potentially harmful consequences of their research; the public need not always know of all scientific discoveries; uncertainty about the risks of harm may warrant precaution; and expected benefits do not always outweigh potential harm. However, the constraints in question are not absolute but can be both temporary and partial. We propose three core aspects for an ethics of dual-use dissemination: dual-use awareness, precaution, and acknowledgment of conflicting values. Additionally, to help scientists understand when constraints on dissemination may be justified we suggest three corresponding conditions that prompt scientists to recognize dual-use material or research, consider the potential impact of dual-use knowledge dissemination, and acknowledge and respond to external dissemination concerns.
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| 6. |
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| 7. |
- Masterton, Malin, 1979-, et al.
(författare)
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Ethical Review Boards are poor advocates for patient perspectives
- 2014
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Ingår i: Research Ethics. - : SAGE Publications. - 1747-0161 .- 2047-6094. ; 10:3, s. 169-181
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Tidskriftsartikel (refereegranskat)abstract
- In medical research, patients are increasingly recognized with ‘lay knowledge’ but their views are poorly researched. The study objective was to investigate patients’ attitudes to medical research. This is in comparison to lay and expert members on ethical review boards (ERB), as their task is to evaluate the risk−benefits of research, which are ultimately grounded in attitudes and values. From focus-group interviews with patients suffering from chronic inflammatory diseases, a postal questionnaire was developed and sent to patient members of the Swedish Rheumatism Association (n = 1195) and to all ERB board members in Sweden (N = 583). Response rates were 65 percent and the surveys were conducted in Jan−May 2011. Agreement across the groups included priority for medical research on diagnostic and early detection of disease. A key difference was expert and lay ERB members giving higher priority to basic research/research on lifestyle and prevention (primarily benefiting future patients), whereas patients prioritized research on daily function. On this significant point, lay members did not share the opinion of this patient group, indicating that they may be poor representatives for patients’ views. These results call for further research: how can patient perspectives be included in ERB discussions and in what way should patients’ values influence the research agenda.
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| 8. |
- Norberg Wieslander, Kajsa, et al.
(författare)
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Research ethics committee members’ perspectives on paediatric research : a qualitative interview study
- 2023
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Ingår i: Research Ethics. - 1747-0161 .- 2047-6094. ; 0:0
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Tidskriftsartikel (refereegranskat)abstract
- Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.
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| 9. |
- Sandin, Per, et al.
(författare)
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Principlism and citizen science: the possibilities and limitations of principlism for guiding responsible citizen science conduct
- 2022
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Ingår i: Research Ethics. - : SAGE Publications. - 1747-0161 .- 2047-6094. ; 18, s. 304-318
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Tidskriftsartikel (refereegranskat)abstract
- Citizen science (CS) has been presented as a novel form of research relevant for social concerns and global challenges. CS transforms the roles of participants to being actively involved at various stages of research processes, CS projects are dynamic, and pluralism arises when many non-professional researchers take an active involvement in research. Some argue that these elements all make existing research ethical principles and regulations ill-suited for guiding responsible CS conduct. However, while many have sought to highlight such challenges from CS, few have discussed principles per se providing the foundation for regulations. In this article we will investigate the possibilities of midlevel principlism in guiding responsible CS conduct. Principlism has the potential of accommodating many of the concerns taken to reduce the relevance of existing principles.
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| 10. |
- van Baalen, Sebastian, 1989-
(författare)
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"Google Wants to Know Your Location" : The Ethical Challenges of Fieldwork in the Digital Age
- 2018
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Ingår i: Research Ethics. - : Sage Publications. - 1747-0161 .- 2047-6094. ; 14:4, s. 1-17
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Tidskriftsartikel (refereegranskat)abstract
- Information communications technologies (ICTs) like laptops, smartphones and portable storage devices facilitate travel, communication and documentation for researchers who conduct fieldwork. But despite increasing awareness about the ethical complications associated with using ICTs among journalists and humanitarians, there are few reflections on digital security among researchers. This article seeks to raise awareness of this important question by outlining three sets of ethical challenges related to digital security that may arise during the course of field research. These ethical challenges relate to (i) informed consent and confidentiality, (ii) collecting, transferring and storing sensitive data, and (iii) maintaining the personal security and integrity of the researcher. To help academics reflect on and mitigate these risks, the article underscores the importance of digital risk assessments and develops ten basic guidelines for field research in the digital age.
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