Common Challenges in Ethical Practice when Testing Technology with Human Participants: Analyzing the Experiences of a Local Ethics Committee

i-com ◽  
2017 ◽  
Vol 16 (3) ◽  
Author(s):  
Stefan Brandenburg ◽  
Michael Minge ◽  
Dietlind Helene Cymek

AbstractEthical aspects are of key importance in research and the development of technical systems. They play a major role when the societal impact of innovative products and new technologies is considered. However, ethics are already essential during technology development, especially when testing these technologies with human participants. The latter is becoming increasingly important when applying for project funding and for publishing peer reviewed journal papers. Responding to these needs, a local ethics committee at the Department of Psychology and Ergonomics at Technische Universität Berlin was founded in 2009. In this paper, we present an analysis of common pitfalls and blind spots that were detected by reviewers of this ethics committee. We studied the reviews of 98 applications for ethical approval. Results show that researchers (a) often lack concrete knowledge about potential ethical issues of their research and (b) that they might benefit from convenient tools to address relevant ethical challenges at early stages of product design. Based on the results of our analysis, we propose a set of six simple rules that can help to detect and to overcome most of the frequently appearing ethical issues.

2021 ◽  
Vol 5 (GROUP) ◽  
pp. 1-29
Author(s):  
Karen L. Boyd ◽  
Katie Shilton

The design of new technologies is a cooperative task (between designers on teams, and between designers and users) with ethical import. Studying technology development teams' engagement with the ethical aspects of their work is important, but engagement with ethical issues is an unobservable construct without agreement on what observable factors comprise it. Ethical sensitivity (ES), a construct studied in medicine, accounting, and other professions, offers a framework of observable factors by operationalizing ethical engagement in workplaces into component parts. However, ES has primarily been studied as a property of individuals rather than groups and in professions outside of computing. This paper uses a corpus of 108 ES studies from 1985-2020 to adapt the framework for studies of technology design teams. From the ES corpus, we build an umbrella framework that conceptualizes ES as comprising the moment of noticing an ethical problem (recognition), the process of building understanding of the situation (particularization), and the decision about what to do (judgment). This framework makes theoretical and methodological contributions to the study of how ethics are operationalized on design teams. We find that ethical sensitivity provides useful language for studies of collaboration and communication around ethics; suggests opportunities for, and evaluations of, ethical interventions for design workplaces; and connects team members' backgrounds, educational experiences, work practices, and organizational factors to design decisions. Simultaneously, existing research in HCI and CSCW addresses the limited range of research methods currently employed in the ES literature, adding rich, contextualized data about situated and embodied ethical practice to the theory.


Author(s):  
James M. DuBois ◽  
Beth Prusaczyk

This chapter focuses primarily on the protection of human participants in D&I studies. It begins by reviewing the Belmont principles that undergird US research regulations and considering the ethical case for D&I research. It then proceeds to examine some ethical issues that might arise during the course of a public health, D&I research agenda in middle schools. It covers the ethical case for D&I research and common ethical challenges. The chapter also discusses strategies for ethical decision-making. While these strategies may be beneficial to all researchers, the authors believe they are of particular value to dissemination and implementation researchers because the nature of their work—context specific, complex, and unfamiliar to many peers, collaborators, and reviewers—means they will deal with uncertainty and conflict on a regular basis, and solutions to the problems they face will rarely be found through simple reference principles, rules, or regulations.


2020 ◽  
pp. 026921632097427
Author(s):  
Guy Schofield ◽  
Mariana Dittborn ◽  
Richard Huxtable ◽  
Emer Brangan ◽  
Lucy Ellen Selman

Background: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. Aim: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice. Design: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative. Data sources: Seven databases (MEDLINE, Philosopher’s Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges. Results: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy). Conclusion: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing.


2014 ◽  
Vol 23 (4) ◽  
pp. 442-454 ◽  
Author(s):  
Elmira Petrova ◽  
Jan Dewing ◽  
Michelle Camilleri

Aim: This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. Background: With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work. Research design: The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months. Ethical considerations: The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained. Discussion: Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues. Conclusion: This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study.


2020 ◽  
Author(s):  
Hongsuda Sornklin ◽  
Thitiwan Kerdsomboon ◽  
Yongyuth Yuthavong ◽  
Prasit Palittapongarnpim ◽  
Soraj Hongladarom ◽  
...  

Abstract Containment measures have been implemented in Thailand after the country was hit by the Covid-19 pandemic. The top priority is to save people’s lives. Unavoidably, serious consequences that affected the people’s income, privacy, needs, equality, and equity emerged, presenting new challenges. In order to begin to investigate these complex ethical questions, the Office of Research Integrity of National Science and Technology Development Agency organized a meeting in order to bring together key experts in various fields related to the Covid-19 pandemic to discuss what was going on in Thailand and how to manage it properly. Three key ethical settings, each of which caused significant effects, were discussed in the meeting, namely public health, medical services, and research and clinical trial settings. Many key ethical issues were revealed during the meeting, as well as how best to address and manage them properly.


Author(s):  
Ainara Garzo ◽  
Nestor Garay-Vitoria

In recent years, it has become common for users to participate in the development of new technologies for health and quality of life. This development requires ethical issues to be taken into account. In this chapter, the researchers review the important recommendations and directives both worldwide and in European legislation in order to guide technological researchers. All research with human participants that poses any risk to them must be supervised by an external multidisciplinary entity. In addition, the participants must decide whether or not they want to participate, having been provided with all the information about the experiments and the risks of taking part. The privacy of the participants' personal data is another important issue.


2021 ◽  
pp. 105649262110339
Author(s):  
Kate Hutchings ◽  
Snejina Michailova

Prior studies have highlighted ethical challenges in researching in developing countries but have not explored the ethical issues for supervisors when their doctoral students undertake qualitative fieldwork in such contexts. Doctoral research in developing countries has the potential to provide valuable knowledge; yet, where data cannot be collected, important potential knowledge is lost. Moreover, where doctoral research does not follow ethical practice there is potential for damaged relations between organizations and universities, which can impact student, supervisor, and university reputation. Thus, doctoral students’ supervisors have an essential role in providing training to ensure ethical and culturally appropriate research. We reflect on our experiences as supervisors of business doctoral students who collected original data in developing countries and underpin these reflections with our own extensive (international) management research in developing countries to discuss ethical challenges for supervisors. We offer insights and action guidelines for current and prospective students, supervisors, and universities.


Author(s):  
Omrana Pasha ◽  
Myra F. Hyder ◽  
Adnan A. Hyder

This chapter discusses the ethical issues and impact of interpersonal and self-directed violence on the health of the global population. Interpersonal and self-directed violence (self-harm) are leading causes of death and disability globally, and international guidelines recommend provision of services to those affected by violence, research into the prevalence of violence, and advocacy and training to prevent violence. Importantly, public health practice and research on violence present both global and context-specific ethical challenges. This chapter describes the impact of violence on public health, the role of public health practitioners in addressing violence, fundamental ethical principles and guidelines for public health workers to address violence, and ethical challenges for research and programs dealing with violence, including fair approaches to violence screening and response, safe means of collecting data about violence, reducing risks when resources are limited, and autonomy versus paternalism in suicide management. The chapter concludes by suggesting strategies for the ethical practice of public health in the context of violence.


2020 ◽  
Vol 11 (1) ◽  
pp. 12-28 ◽  
Author(s):  
N. I. Komkov ◽  
V. V. Sutyagin

Purpose: to justification of the need to develop new-generation domestic technologies that ensure the competitiveness and stability of the Russian economy to external challenges. Using the laws of accelerated development of various systems, objects and processes of the material world will allow us to construct a mechanism for analysis, decision-making and management of the justification, development and implementation of new generation technologies.Methods: the research method is based on the generalization of forecasting the accelerated development of various processes under the conditions of growth restrictions, methods for constructing targeted information-logic models, decision-making methods for justifying the costs of upgrading one-generation technology options and analyzing domestic and foreign technology development experience new generation.Results: within the space of creation and development of new generation technologies, in accordance with the well-known concept of the full life cycle, the process of development and implementation of new generation technologies in the form of a logistic curve has been specified. The solution to the problem of managing the creation of new generation technologies is presented as the fastest possible implementation of projects to search for innovative solutions that meet the requirements of competitiveness. Mathematical models of the formulated problem are considered. Examples of practical tasks for managing the development and development of new generation technologies are given.Conclusions and Relevance: the dynamics of development and the economic conditions for the transition to technology modernization are determined by the need for further development of new generation technologies in the interests of full use of the innovative potential of this generation. Information-logical and mathematical models have been developed for making decisions on managing the justification of the necessary resources for the implementation of projects in the full cycle during the transition from innovative solutions to new technologies and innovative products.


2018 ◽  
Vol 104 (4) ◽  
pp. 195-200 ◽  
Author(s):  
Sarah Jane Mitchell ◽  
Anne-Marie Slowther ◽  
Jane Coad ◽  
Shazaan Akhtar ◽  
Elizabeth Hyde ◽  
...  

Patient and public involvement (PPI) is important both in research and in quality improvement activities related to healthcare services . While PPI activities do not require formal ethical approval, they can raise a number of ethical concerns, through the introduction of complex technical medical concepts, challenging language or sensitive subject areas. There is very little published literature to guide ethical practice in this area. We have been conducting PPI with children and young people throughout a research study in paediatric palliative care. PPI started during the application process and continued to guide and shape the research as it progressed. Ethical issues can arise at any time in PPI work. Although many can be predicted and planned for, the nature of PPI means that researchers can be presented with ideas and concepts they had not previously considered, requiring reflexivity and a reactive approach. This paper describes how we considered and addressed the potential ethical issues of PPI within our research. The approach that emerged provides a framework that can be adapted to a range of contexts and will be of immediate relevance to researchers and clinicians who are conducting PPI to inform their work.


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