scholarly journals Understanding the benefits and burdens associated with a malaria human infection study in Kenya: experiences of study volunteers and other stakeholders

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Primus Che Chi ◽  
Esther Awuor Owino ◽  
Irene Jao ◽  
Fredrick Olewe ◽  
Bernhards Ogutu ◽  
...  
Keyword(s):  
Cultural Context ◽  
Ethical Issues ◽  
Human Infection ◽  
Future Research ◽  
Framework Analysis ◽  
Observation Study ◽  
Resource Setting ◽  
Study Staff ◽  
Combining Data ◽  
Infection Study

Abstract Background Human infection studies (HIS) that involve deliberately infecting healthy volunteers with a pathogen raise important ethical issues, including the need to ensure that benefits and burdens are understood and appropriately accounted for. Building on earlier work, we embedded social science research within an ongoing malaria human infection study in coastal Kenya to understand the study benefits and burdens experienced by study stakeholders in this low-resource setting and assess the wider implications for future research planning and policy. Methods Data were collected using qualitative research methods, including in-depth interviews (44), focus group discussions (10) and non-participation observation. Study participants were purposively selected (key informant or maximal diversity sampling), including volunteers in the human infection study, study staff, community representatives and local administrative authorities. Data were collected during and up to 18 months following study residency, from sites in Coastal and Western Kenya. Voice recordings of interviews and discussions were transcribed, translated, and analysed using framework analysis, combining data- and theory-driven perspectives. Findings Physical, psychological, economic and social forms of benefits and burdens were experienced across study stages. Important benefits for volunteers included the study compensation, access to health checks, good residential living conditions, new learning opportunities, developing friendships and satisfaction at contributing towards a new malaria vaccine. Burdens primarily affected study volunteers, including experiences of discomfort and ill health; fear and anxiety around aspects of the trial process, particularly deliberate infection and the implications of prolonged residency; anxieties about early residency exit; and interpersonal conflict. These issues had important implications for volunteers’ families, study staff and the research institution’s reputation more widely. Conclusion Developing ethically and scientifically strong HIS relies on grounded accounts of volunteers, study staff and the wider community, understood in the socioeconomic, political and cultural context where studies are implemented. Recognition of the diverse, and sometimes perverse, nature of potential benefits and burdens in a given context, and who this might implicate, is critical to this process. Prior and ongoing stakeholder engagement is core to developing these insights.

scholarly journals Understanding the benefits and burdens associated with a Malaria Human Infection Study in Kenya: Experiences of study volunteers and other stakeholders

2021 ◽  
Author(s):  
Primus Che Chi ◽  
Esther Awuor Owino ◽  
Irene Jao ◽  
Fredrick Olewe ◽  
Bernhards Ogutu ◽  
...  
Keyword(s):  
Social Science ◽  
Social Science Research ◽  
Science Research ◽  
Human Infection ◽  
Future Research ◽  
Observation Study ◽  
Resource Setting ◽  
Study Staff ◽  
Combining Data ◽  
Infection Study

Abstract Background Human infection studies that involve deliberately infecting healthy volunteers with a pathogen raise important ethical issues, including the need to ensure that benefits and burdens are understood and appropriately accounted for. Building on earlier work, we embedded social science research within an ongoing malaria human infection study in coastal Kenya to understand the study benefits and burdens experienced by study stakeholders in this low-resource setting and assess the wider implications for future research planning and policy. Methods Data were collected using qualitative research methods, including in-depth interviews (44), focus group discussions (10) and non-participation observation. Study participants were purposively selected (key informant or maximal diversity sampling), including volunteers in the human infection study, study staff, community representatives and local administrative authorities. Data were collected during and up to 18 months following study residency, from sites in Coastal and Western Kenya. Voice recordings of interviews and discussions were transcribed, translated and analysed using Framework Analysis, combining data- and theory-driven perspectives.Findings Physical, psychological, economic and social forms of benefits and burdens were experienced across study stages. Important benefits for volunteers included the study compensation, access to health checks, good residential living conditions, new learning opportunities, developing friendships and satisfaction at contributing towards a new malaria vaccine. Burdens primarily affected study volunteers, including experiences of discomfort and ill-health; fear and anxiety around aspects of the trial process, particularly deliberate infection and the implications of prolonged residency; anxieties about early residency exit and interpersonal conflict. These issues had important implications for volunteers’ families, study staff and the research institution’s reputation more widely.Conclusion Developing ethically and scientifically strong HIS relies on grounded accounts of volunteers, study staff and the wider community, understood in the socioeconomic, political and cultural context where studies are implemented. Recognition of the diverse, and sometimes perverse, nature of potential benefits and burdens in a given context, and who this might implicate, is critical to this process. Prior and on-going stakeholder engagement is core to developing these insights, which can be importantly expanded and underlined through embedded forms of social science research.

scholarly journals Understanding the benefits and burdens associated with a Malaria Human Infection Study in Kenya: Experiences of study volunteers and other stakeholders

2021 ◽  
Author(s):  
Primus Che Chi ◽  
Esther Awuor Owino ◽  
Irene Jao ◽  
Fredrick Olewe ◽  
Bernhards Ogutu ◽  
...  
Keyword(s):  
Social Science ◽  
Social Science Research ◽  
Science Research ◽  
Human Infection ◽  
Future Research ◽  
Observation Study ◽  
Resource Setting ◽  
Study Staff ◽  
Combining Data ◽  
Infection Study

Abstract Background Human infection studies that involve deliberately infecting healthy volunteers with a pathogen raise important ethical issues, including the need to ensure that benefits and burdens are understood and appropriately accounted for. Building on earlier work, we embedded social science research within an ongoing malaria human infection study in coastal Kenya to understand the study benefits and burdens experienced by study stakeholders in this low-resource setting and assess the wider implications for future research planning and policy. Methods Data were collected using qualitative research methods, including in-depth interviews (44), focus group discussions (10) and non-participation observation. Study participants were purposively selected (key informant or maximal diversity sampling), including volunteers in the human infection study, study staff, community representatives and local administrative authorities. Data were collected during and up to 18 months following study residency, from sites in Coastal and Western Kenya. Voice recordings of interviews and discussions were transcribed, translated and analysed using Framework Analysis, combining data- and theory-driven perspectives. Findings Physical, psychological, economic and social forms of benefits and burdens were experienced across study stages. Important benefits for volunteers included the study compensation, access to health checks, good residential living conditions, new learning opportunities, developing friendships and satisfaction at contributing towards a new malaria vaccine. Burdens primarily affected study volunteers, including experiences of discomfort and ill-health; fear and anxiety around aspects of the trial process, particularly deliberate infection and the implications of prolonged residency; anxieties about early residency exit and interpersonal conflict. These issues had important implications for volunteers’ families, study staff and the research institution’s reputation more widely. Conclusion Developing ethically and scientifically strong HIS relies on grounded accounts of volunteers, study staff and the wider community, understood in the socioeconomic, political and cultural context where studies are implemented. Recognition of the diverse, and sometimes perverse, nature of potential benefits and burdens in a given context, and who this might implicate, is critical to this process. Prior and on-going stakeholder engagement is core to developing these insights, which can be importantly expanded and underlined through embedded forms of social science research.

scholarly journals Human infection challenge studies in endemic settings and/or low-income and middle-income countries: key points of ethical consensus and controversy

2020 ◽  
Vol 46 (9) ◽  
pp. 601-609 ◽  
Author(s):  
Euzebiusz Jamrozik ◽  
Michael J Selgelid
Keyword(s):  
Low Income ◽  
Ethical Issues ◽  
Relevant Literature ◽  
Human Infection ◽  
Third Party ◽  
Future Research ◽  
Middle Income ◽  
Middle Income Countries ◽  
Trade Offs ◽  
Widespread Agreement

Human infection challenge studies (HCS) involve intentionally infecting research participants with pathogens (or other micro-organisms). There have been recent calls for more HCS to be conducted in low-income and middle-income countries (LMICs), where many relevant diseases are endemic. HCS in general, and HCS in LMICs in particular, raise numerous ethical issues. This paper summarises the findings of a project that explored ethical and regulatory issues related to LMIC HCS via (i) a review of relevant literature and (ii) 45 qualitative interviews with scientists and ethicists. Among other areas of consensus, we found that there was widespread agreement that LMIC HCS can be ethically acceptable, provided that they have a sound scientific rationale, are accepted by local communities and meet usual research ethics requirements. Unresolved issues include those related to (i) acceptable approaches to trade-offs between the scientific aim to produce generalisable results and the protection of participants, (iii) the sharing of benefits with LMIC populations, (iii) the acceptable limits to risks and burdens for participants, (iv) the potential for third-party risk and whether the degree of acceptable third-party risk is different in endemic settings, (v) the conditions under which (if any) it would be appropriate to recruit children for disease-causing HCS, (v) appropriate levels of payment to participants and (vi) appropriate governance of (LMIC) HCS. This paper provides preliminary analyses of these ethical considerations in order to (i) inform scientists and policymakers involved in the planning, conduct and/or governance of LMIC HCS and (ii) highlight areas warranting future research. Insofar as this article focuses on HCS in (endemic) settings where diseases are present and/or widespread, much of the analysis provided is relevant to HCS (in HICs or LMICs) involving pandemic diseases including COVID19.

The Changing Nature of Knowledge and Service Work in the Age of Intelligent Machines

2020 ◽  
pp. 343-368
Author(s):  
Crispin Coombs ◽  
Donald Hislop ◽  
Stanimira Taneva ◽  
Sarah Barnard
Keyword(s):  
Ethical Issues ◽  
Work Practice ◽  
Academic Disciplines ◽  
Service Work ◽  
Future Research ◽  
Human Capabilities ◽  
Academic Knowledge ◽  
Intelligent Machines ◽  
Technological Developments ◽  
The Impact

One of the most significant recent technological developments concerns the application of intelligent machines to jobs that up to now have been considered safe from automation. These changes have generated considerable debate regarding the impacts that the widespread adoption of intelligent machines could have on the nature of work. This chapter provides a thematic review, across multiple academic disciplines, of the current state of academic knowledge regarding the impact of intelligent machines on knowledge and service work. Adopting a work-practice perspective, the chapter reviews the extant literature concerning changing relations between workers and intelligent machines, the adoption and acceptance of intelligent machines, and ethical issues associated with greater machine human collaboration. A key finding is that much of the research discusses intelligent machines complementing and extending human capabilities rather than removing humans from work processes. The concept of augmentation of humans and human work, rather than wholesale replacement from automation, flows through the literature across a range of domains. The chapter concludes with a discussion of the main gaps in existing knowledge and ways in which future research may provide a deeper understanding of how people (currently and in the near future) experience intelligent machines in their day-to-day work practice. These include the need for multi-disciplinary research, the role of contexts, the need for more and better empirical research, the changing relationships between humans and intelligent machines, the adoption and acceptance of the technology, and ethical issues.

Ethical Issues in Clinical Psychology

2010 ◽  
pp. 183-210
Author(s):  
Kenneth S. Pope
Keyword(s):  
Clinical Psychology ◽  
Ethical Decision ◽  
Ethical Decision Making ◽  
Ethical Issues ◽  
American Psychological Association ◽  
Future Research ◽  
Ethical Problems ◽  
Basic Assumptions ◽  
Ethics Code ◽  
Canadian Psychological Association

This chapter examines how ethical issues are approached differently by two prominent psychological associations, how they are encountered by psychologists, the formal complaints they give rise to, and how they can be approached systematically to avoid missteps. Included are basic assumptions about ethics; the unique approaches to developing a ethics code taken by the American Psychological Association (APA) and the Canadian Psychological Association (CPA), and what each of these two codes provides; empirical data about what ethical problems psychologists encounter and what formal complaints they face; four major sets of ethical issues that are particularly complex and challenging (confidentiality, informed consent, competence, and boundaries); an area of major controversy (clinical psychology and national security); steps in ethical decision-making; and four possible lines of future research.

scholarly journals Co-Creating New Directions for Service Robots in Hospitality and Tourism

2021 ◽  
Vol 2 (1) ◽  
pp. 43-61
Author(s):  
Francesc Fusté-Forné ◽  
Tazim Jamal
Keyword(s):  
Ethical Issues ◽  
Research Literature ◽  
Service Robots ◽  
Future Research ◽  
Research Attention ◽  
Research And Practice ◽  
Tourism Management ◽  
New Directions ◽  
Hospitality And Tourism ◽  
New Research

Research on the relationship between automation services and tourism has been rapidly growing in recent years and has led to a new service landscape where the role of robots is gaining both practical and research attention. This paper builds on previous reviews and undertakes a comprehensive analysis of the research literature to discuss opportunities and challenges presented by the use of service robots in hospitality and tourism. Management and ethical issues are identified and it is noted that practical and ethical issues (roboethics) continue to lack attention. Going forward, new directions are urgently needed to inform future research and practice. Legal and ethical issues must be proactively addressed, and new research paradigms developed to explore the posthumanist and transhumanist transitions that await. In addition, closer attention to the potential of “co-creation” for addressing innovations in enhanced service experiences in hospitality and tourism is merited. Among others, responsibility, inclusiveness and collaborative human-robot design and implementation emerge as important principles to guide future research and practice in this area.

Staying the distance: Transforming Latin pedagogy at the Open University

2019 ◽  
Vol 18 (1-2) ◽  
pp. 101-128
Author(s):  
Mair E. Lloyd ◽  
James Robson
Keyword(s):  
Cultural Context ◽  
Learning Experience ◽  
New Technology ◽  
Significant Proportion ◽  
Lessons Learned ◽  
Future Research ◽  
Open University ◽  
Ancient Rome ◽  
Positive Effects ◽  
Pedagogical Changes

Abstract Between 2000 and 2013, over 8,000 students studied the module Reading Classical Latin at the Open University, the United Kingdom’s largest distance education provider. But while many learners attained high grades, a significant proportion withdrew from study or failed the module. In 2015, the original module was replaced with a completely new course, Classical Latin: The Language of Ancient Rome. This article details the innovative ways in which new technology and pedagogical theory from Modern Foreign Language (MFL) learning were drawn on by the team designing this new module, resulting in a learning experience which gives greater emphasis to elements such as spoken Latin, the intrinsic pleasure of reading, and cultural context. The (largely positive) effects of these pedagogical changes on student success and satisfaction are subsequently analysed using a rich mix of qualitative and quantitative data. Finally, the authors reflect on lessons learned and the possibilities for future research and enhancement.

scholarly journals Building tourism-resilient communities by incorporating residents’ perceptions? A photo-elicitation study of tourism development in Bruges

2017 ◽  
Vol 3 (2) ◽  
pp. 127-143 ◽  
Author(s):  
Katarzyna Janusz ◽  
Sofie Six ◽  
Dominique Vanneste
Keyword(s):  
Cultural Context ◽  
Current Trend ◽  
Tourism Industry ◽  
Photo Elicitation ◽  
Quality Data ◽  
Future Research ◽  
Visual Methods ◽  
Content Type ◽  
Resilient Communities ◽  
Historical Center

Purpose In a current trend of a growing amount of short city trips, it becomes crucial to understand how local residents perceive the presence of tourists and tourism in their cities and how their socio-cultural context influences those perceptions. The purpose of this paper is to contribute to this understanding which will enable the city planners to take actions to create the well-balanced and resilient communities in which the needs of residents and tourists are equally met. Design/methodology/approach To understand residents’ perceptions’ about tourism in Bruges, this research applied photo-elicitation interviews with 28 residents who lived in various locations in the historical center to understand socio-cultural background of residents, their tourism-related concerns and whether they are in line with what is commonly perceived as problematic in Bruges. Findings Results show that as long as residents can benefit from tourism and tourism-related infrastructure, they support tourism. On the other hand, tourism decreases the liveability of the historical center due to supersession of infrastructure serving the residents by tourist-oriented amenities. Practical implications To build a sustainable and resilient city in the future, the authorities of Bruges should cease further “museumification” of the historical city by breaking the hegemony of tourism industry, providing affordable housing and rethinking the concentration model of tourism. Originality/value The photo-elicitation method proved to produce rich content and good-quality data by stimulating respondents’ memories and evoking experiences and emotions. Thus, this paper recommends that future research about residents’ attitudes is developed around visual methods as they give voice to the residents and are able to uncover issues which are difficult to capture with other methods.

scholarly journals Crowdfunding: Motives, Definitions, Typology and Ethical Challenges

2017 ◽  
Vol 7 (2) ◽  
Author(s):  
Mokter Hossain ◽  
Gospel Onyema Oparaocha
Keyword(s):  
Final Section ◽  
Theoretical Foundation ◽  
Ethical Issues ◽  
Future Research ◽  
Ethical Challenges ◽  
Alternative Source ◽  
Significant Interest ◽  
Challenges And Opportunities ◽  
Conceptual Paper

AbstractCrowdfunding is an emerging phenomenon that has attracted significant interest from scholars and practitioners alike, mainly due to its appeal as an alternative source of funding. As crowdfunding has grown exponentially, so have the associated challenges and opportunities. In this conceptual paper, we define crowdfunding; discuss its characteristics, related terminologies, key elements and ethical issues. We also propose a typology for crowdfunding and indicate various issues associated with it. The final section includes the implications of this study and suggestions for future research. This paper aims to inspire a scholarly debate and further develop the theoretical foundation of the crowdfunding literature. This may also prompt practitioners to take note of the emerging concerns as the crowdfunding phenomenon is transforming from a marginal to a mainstream discipline.

To dictate or collaborate? A phenomenological exploration of physiotherapists’ leadership styles

BMJ Leader ◽  
2021 ◽  
pp. leader-2020-000403
Author(s):  
Victoria Smith ◽  
Claire Maxwell ◽  
Lisa Robinson
Keyword(s):  
Leadership Styles ◽  
Well Being ◽  
Leadership Role ◽  
Future Research ◽  
Semistructured Interview ◽  
Team Leaders ◽  
Framework Analysis ◽  
North East ◽  
The North ◽  
Health And Social Care

ObjectivesSelection of effective leadership styles within healthcare is linked to high quality, safe care for patients. Within the literature attention has been given to medical and nursing professions, failing to acknowledge the contribution made by physiotherapy leaders. This study aims to consider the leadership styles used by physiotherapists in a designated leadership role, specifically exploring the barriers they face and the strategies employed to overcome current leadership dilemmas.DesignA qualitative, phenomenological design was used. Consent was obtained from each participant for one semistructured interview which was audio recorded and transcribed verbatim. Framework analysis was used to analyse the data.SettingA large National Health Service Foundation Trust within the North East of England.ParticipantsA purposive sample of ten physiotherapy team leaders.ResultsThe theoretical leadership framework that emerged demonstrated the daily tensions experienced by physiotherapy team leaders in regard to being a transactional or transformational leader. Within this, three superordinate themes exist: the individual, the team and the organisation and beyond. Each theme contained barriers and enablers which related to transactional and transformational leadership styles, respectively.ConclusionsThe framework identified gives insight into a group of clinical leaders not yet explored and provides a foundation for the development of leadership behaviours throughout physiotherapy. These clinicians should be supported by senior leaders to develop more transformational styles which have the potential to impact on staff well-being and patient care. Future research should compare these findings with studies involving larger sample sizes that span the health and social care system.

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