scholarly journals The Challenges of Big Data for Research Ethics Committees: A Qualitative Swiss Study

2021 ◽  
pp. 155626462110535
Author(s):  
Agata Ferretti ◽  
Marcello Ienca ◽  
Minerva Rivas Velarde ◽  
Samia Hurst ◽  
Effy Vayena
Keyword(s):  
Big Data ◽  
Research Ethics ◽  
Data Science ◽  
Ad Hoc ◽  
Qualitative Interviews ◽  
Ethics Committees ◽  
Research Quality ◽  
Research Ethics Committees ◽  
Data Ethics ◽  
Research Risks

Big data trends in health research challenge the oversight mechanism of the Research Ethics Committees (RECs). The traditional standards of research quality and the mandate of RECs illuminate deficits in facing the computational complexity, methodological novelty, and limited auditability of these approaches. To better understand the challenges facing RECs, we explored the perspectives and attitudes of the members of the seven Swiss Cantonal RECs via semi-structured qualitative interviews. Our interviews reveal limited experience among REC members with the review of big data research, insufficient expertise in data science, and uncertainty about how to mitigate big data research risks. Nonetheless, RECs could strengthen their oversight by training in data science and big data ethics, complementing their role with external experts and ad hoc boards, and introducing precise shared practices.

The Incommensurability of Research Risks and Benefits: Practical Help for Research Ethics Committees

1995 ◽  
Vol 17 (2) ◽  
pp. 8 ◽  
Author(s):  
Douglas K. Martin ◽  
Eric M. Meslin ◽  
Nitsa Kohut ◽  
Peter A. Singer
Keyword(s):  
Research Ethics ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Risks And Benefits ◽  
Research Risks

Embracing qualitative research: a visual model for nuanced research ethics oversight

2016 ◽  
Vol 17 (1) ◽  
pp. 95-117 ◽  
Author(s):  
Elaine Doyle ◽  
Patrick Buckley
Keyword(s):  
Qualitative Research ◽  
Research Ethics ◽  
Resource Constraints ◽  
Human Subjects ◽  
Qualitative Interviews ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Visual Model ◽  
Ethics Review ◽  
Research Ethics Review

The research ethics review systems within universities evolved from the positivist biomedical model but have expanded to include all non-clinical research involving human subjects. However, the application of the biomedical paradigm to qualitative research often creates significant problems. This article highlights the fundamental differences between biomedical and humanities and social science (HSS) research, illustrating that one size does not fit all when it comes to research ethics review. Recognising the resource constraints faced by many higher level education institutions, we develop a model which encompasses the traditional research ethics concepts without requiring separate oversight procedures. After its original construction based on extent research ethics literature, the model was evolved based on findings from qualitative interviews carried out with expert members of research ethics committees. The model can be adapted to multiple contexts through the application of different levels of tolerance in each domain. Our contribution is twofold: (1) to synthesise from the literature an explicit rationale for differentiating research contexts when it comes to research ethics oversight; and (2) to provide research ethics committees with a workable visual model that can be used to aid decision making in diverse research domains.

scholarly journals Philosophers in research ethics committees—what do they think they’re doing? An empirical-ethical analysis

2021 ◽  
Author(s):  
Charlotte Gauckler
Keyword(s):  
Research Ethics ◽  
Applied Ethics ◽  
Ethics Committees ◽  
Research Ethics Committees ◽  
Structured Interviews ◽  
Discussion Section ◽  
Philosophical Perspective ◽  
Level 3 ◽  
Practical Level

AbstractResearch ethics committees in Germany usually don’t have philosophers as members and if so, only contingently, not provided for by statute. This is interesting from a philosophical perspective, assuming that ethics is a discipline of philosophy. It prompts the question what role philosophers play in those committees they can be found in. Eight qualitative semi-structured interviews were conducted to explore the self-perception of philosophers regarding their contribution to research ethics committees. The results show that the participants generally don’t view themselves as ethics experts. They are rather unanimous on the competencies they think they contribute to the committee but not as to whether those are philosophical competencies or applied ethical ones. In some cases they don’t see a big difference between their role and the role of the jurist member. In the discussion section of this paper I bring up three topics, prompted by the interviews, that need to be addressed: (1) I argue that the interviewees’ unwillingness to call themselves ethics experts might have to do with a too narrow understanding of ethics expertise. (2) I argue that the disagreement among the interviewees concerning the relationship between moral philosophy and applied ethics might be explained on a theoretical or on a practical level. (3) I argue that there is some lack of clarity concerning the relationship between ethics and law in research ethics committees and that further work needs to be done here. All three topics, I conclude, need further investigation.

scholarly journals Preventing ethics dumping: the challenges for Kenyan research ethics committees

2020 ◽  
pp. 174701612092506
Author(s):  
Kate Chatfield ◽  
Doris Schroeder ◽  
Anastasia Guantai ◽  
Kirana Bhatt ◽  
Elizabeth Bukusi ◽  
...  
Keyword(s):  
Research Ethics ◽  
Resource Constraints ◽  
Ethics Committees ◽  
Shared Responsibility ◽  
Standards Of Care ◽  
Primary Data ◽  
Research Ethics Committees ◽  
Governance System ◽  
Middle Income ◽  
System Resource

Ethics dumping is the practice of undertaking research in a low- or middle-income setting which would not be permitted, or would be severely restricted, in a high-income setting. Whilst Kenya operates a sophisticated research governance system, resource constraints and the relatively low number of accredited research ethics committees limit the capacity for ensuring ethical compliance. As a result, Kenya has been experiencing cases of ethics dumping. This article presents 11 challenges in the context of preventing ethics dumping in Kenya, namely variations in governance standards, resistance to double ethics review, resource constraints, unresolved issues in the management of biological samples, unresolved issues in the management of primary data, unsuitable informed consent procedures, cultural insensitivity, differing standards of care, reluctance to provide feedback to research communities, power differentials which facilitate the exploitation of local researchers and lack of local relevance and/or affordability of the resultant products. A reflective approach for researchers, built around the values of fairness, respect, care and honesty, is presented as a means of taking shared responsibility for preventing ethics dumping.

Research ethics committees

BMJ ◽  
1990 ◽  
Vol 300 (6724) ◽  
pp. 608-608
Author(s):  
M. Drury
Keyword(s):  
Research Ethics ◽  
Ethics Committees ◽  
Research Ethics Committees
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