Background Ethics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. Main text In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science. Conclusions We believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large.
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.
This paper presents the results of a case study that analyses the critical factors that influence the implementation of professional health education via blended learning in Dadaab refugee camp. It explores innovative solutions to the issues facing refugees looking for professional health training, namely the health workforce shortage and lack of training opportunities. It outlines social and political factors that impact professional health education for refugee youth. It outlines barriers and facilitators on the implementation of ‘Distance Basic Training of Healthcare Professionals’, a blended training course provided by the University of Geneva to junior health care personnel in Dadaab Refugee camp.MethodsThis case uses mixed methods. Descriptive statistics drawn from online surveys, learning analytics data, and exchanges on online forums and student chat groups are all used. Qualitative methods consist of two focus groups, comprising of all students (n = 27) were convened, as well as, individual semi-structured interviews with 14 of the 27 students; three with managers from the health service who supervised enrolled students; and two with senior managers who were responsible for staff and training decision-making. Qualitative data was transcribed, and thematic analyses were applied.ResultsThe results demonstrate that barriers for the implementation of professional education in a refugee camp emerged not only from the constraints on the environment, but also from barriers stemming from legislation and administrative procedures. Data suggested weaknesses on the education system could be addressed by providing students with extra-curricular support, information and communications technology (ICT) literacy, and promoting mechanisms for peer support while broadening entry requirements to increase the enrolment of female students. Finally, providing internationally credentialed courses and transferable skills enables professional pathways for refugee students.DiscussionBlended learning enables the design and delivery of high-quality medical education that is sustainable and relevant in a particular environment, e.g. refugee camps. Furthermore, the research reveals that building education pathways could enhance numbers of health workers with the appropriate skillset to serve communities.
Background In this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. Methods This paper presents the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis. Results The results are a compilation of responses from the mechanics of consent tool divided into two sections; the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants. Discussion Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits; who will be accessing and using their data; as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics.
This article contributes to the discourse on disability from an indigenous perspective, an area which has not been investigated in any detail. It explores the perceptions of disability and lived experiences of 18 indigenous individuals with impairments from Australia, Mexico and New Zealand. The findings from this research suggest that participants from these countries share some common standpoints, particularly in relation to their disassociation from Western disability discourses and their common experiences of social oppression. This paper calls for further reflection about on-going colonisation and an in-depth analysis of the lack of attention given to this issue within the main models of disability.
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