 Subjects -> PHILOSOPHY (Total: 762 journals)
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- Disability Research in Australia: Deciding to Be a Research Participant
and the Experience of Participation-
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Authors: Maddy Slattery, Carolyn Ehrlich, Michael Norwood, Delena Amsters, Gary Allen
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Little is known about why people with disability choose to take part in disability research and what their experience is like. Knowledge of this may help researchers and research ethics committees improve the empowered and ethical participation of people with disability in disability, healthcare, and human service focussed research. This cross-sectional mixed-methods study explored the perspectives and experiences of a group of Australian adults with disability regarding their involvement in research. Online surveys (N = 29) and follow-up interviews (N = 15) were conducted. The study found the decision to participate was a complex appraisal of benefit to self and others, research relevance, value, comfort, convenience, safety and risk. The attitudes and behaviours of researchers in cultivating trust by adopting an empathic approach to the conduct of disability research appear to be an important aspect of participant experience. Research ethics committees may benefit from knowledge of the ‘microethical’ moments that occur in such research.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2023-01-23T08:04:39Z
DOI: 10.1177/15562646221147350
- Jordanian Undergraduate Students’ Views of Participation in Clinical
Trials: The COVID-19 Example-
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Authors: Mamoun Ahram, Rahaf A. Al-Qaryouti, Dania S. Qarkash, Omar F. Salaymeh, Raghad A. Shaqqour
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
The emergence of the COVID-19 pandemic has necessitated broad public participation in clinical trials. Knowledge of the attitudes of the relatively young would provide a perspective on future representative public enrollment in clinical trials. This study investigated the attitudes of undergraduate university students toward participation in COVID-19 clinical trials and determined the predictors of their attitudes. Using a validated, web-based questionnaire, 61.2% of the 425 respondents had heard about clinical trials before. Web-based media were the main sources of this knowledge. Less than 20% expressed willingness to participate in COVID-19 clinical trials or support the participation of a family member. The predictors were personal and family protection from the disease. On the contrary, being a female, possible political exploitation of the vaccine or drug, and their potential inefficacy were predictors of unwillingness to participate. This study may inform different stakeholders in developing effective study recruitment strategies to combat current and emerging pathogens.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2023-01-09T08:07:58Z
DOI: 10.1177/15562646221149818
- Research Integrity Attitudes and Behaviors are Difficult to alter: Results
from a ten Year Follow-up Study in Norway-
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Authors: Bjørn Hofmann, Magne Thoresen, Søren Holm
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Background: Research integrity has obtained much attention in research communities, but also in the general public. To improve research integrity is difficult as it involves complex systems of knowledge, attitudes, and practices. The objective of this study is to investigate the knowledge, attitudes, and practices of cohorts of PhD candidates at one faculty (of medicine) over time and compare this to finished PhDs of the same cohorts. Material and method: Researchers (n = 186) awarded the degree PhD at the Faculty of Medicine at the University of Oslo in 2019 were invited to answer a questionnaire about knowledge, attitudes and actions related to scientific dishonesty. 94 responded (50.5%). The results were compared with results among first-year PhD candidates who responded to the same questionnaire during 2010–20 (n = 536) and to those who finished PhDs in 2016 (n = 86). Results: For the years 2010–2020 1.1% of the PhD candidates report to have engaged in severe scientific misconduct (FFP) while 0.9% report to have presented results in a misleading way. 2.3% report that they know of persons at their department who have engaged in FFP the last 12 months. In total 1.5% report to have experienced pressure to engage in severe scientific misconduct (FFP) while 2.1% report to have experienced pressure to present results in a misleading way. On average 12.8% report to have been exposed to unethical pressure concerning inclusion or ordering of authors during the last 12 months, and 28.8% report to have knowledge about their department's written policies about research integrity. While some attitudes improve over the years, attitudes in general are not much changed from 2010–2020. None of the PhDs that received a PhD from the Faculty of Medicine at the University of Oslo in 2019 reported to have engaged in FFT or having experienced pressure to do so.1.1% experienced pressure to present results in other misleading ways, while 26.6% of respondents had experienced unethical pressure in relation to authorship during the course of the PhD fellowship. 4.3% knew about someone at their department who had presented results in a misleading manner. Some attitudes were not in line with traditional conceptions of research integrity, but most agreed that their research environment displayed research integrity. Conclusion: This long-term follow up study shows that few PhD-candidates report to engage in severe scientific misconduct, that they experience little pressure to do so, and with some exceptions, attitudes in in line with good research integrity. However, pressure in relation to authorship is relatively common. There is some improvement in research integrity from PhD candidates to recently finished PhDs, but in general research integrity is stable over time.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2023-01-06T06:02:46Z
DOI: 10.1177/15562646221150032
- Structural Influences on Consent Decisions in Participatory Health
Research in Eswatini-
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Authors: Michelle R. Brear, Pinky N. Shabangu, Karin Hammarberg, Jane Fisher
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Recognition that structural factors influence participation decisions and have potential to coerce participation, emerged relatively recently in research ethics literature. Empirical evidence to elucidate the nature of “structural” coercion and influence is needed to optimise respect for autonomy through voluntary informed consent. We present findings from ethnographic data about community co-researchers’ experiences designing and implementing demographic and health survey consent procedures in participatory health research in Eswatini. Informed by Bourdieu's sociological theory of multiple types of capital/power, our findings detail structural influences on research participation decisions, highlight the inherently power-laden dynamics of consent interactions, and suggest that to be optimally ethical, research ethics principles and practices should consider and account for structural power dynamics.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2023-01-02T11:34:16Z
DOI: 10.1177/15562646221147811
- Invited Peer Commentary: Research Site Anonymity in Context
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Authors: Shenuka Singh, Penelope Engel-Hills
Pages: 565 - 572
Abstract: Journal of Empirical Research on Human Research Ethics, Volume 17, Issue 5, Page 565-572, December 2022.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-11-17T04:11:16Z
DOI: 10.1177/19401612221138478
Issue No: Vol. 17, No. 5 (2022)
- Informed Consent: Research Staff's Perspectives and Practical
Recommendations to Improve Research Staff-Participant Communication-
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Authors: Delphine Eeckhout, Karolien Aelbrecht, Catherine Van Der Straeten
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Informed consent (IC) is the process of communication between research staff and potential research participants. However, ensuring that participants clearly understand what research participation entails, raises significant challenges. The aim of this study is to provide insight into some communication barriers that research staff are confronted with and make practical recommendations to improve communication between research staff and participants. A qualitative research study using semi-structured interviews (n = 13) with research staff from Ghent University Hospital was conducted. Data were transcribed verbatim and coded thematically. Our results indicate that communication- and process-related factors affect the IC process. Emergent recommendations include communication training, more interactive information materials and the use of digital alternatives, increasing general knowledge about research participation and patient- and public involvement.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-12-23T08:09:20Z
DOI: 10.1177/15562646221146043
- Book Review: The torture doctors: Human rights crimes and the road to
justice by S.H. Miles-
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Authors: Ann Strode
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-12-21T07:36:12Z
DOI: 10.1177/15562646221140656
- Protecting the Vulnerable and Including the Under-Represented: IRB
Practices and Attitudes-
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Authors: Luke Gelinas, David H Strauss, Ying Chen, Hayat R. Ahmed, Aaron Kirby, Phoebe Friesen, Barbara E. Bierer
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Since their inception, Institutional Review Boards (IRBs) have been charged with protecting the vulnerable in research. More recently, attention has turned to whether IRBs also have a role to play in ensuring representative study samples and promoting the inclusion of historically under-represented groups. These two aims—protecting the vulnerable and including the under-represented—can pull in different directions, given the potential for overlap between the vulnerable and the under-represented. We conducted a pilot, online national survey of IRB Chairs to gauge attitudes and practices with regard to protecting the vulnerable and including the under-represented in research. We found that IRBs extend the concept of vulnerability to different groups across various contexts, are confident that they effectively protect vulnerable individuals in research, and believe that IRBs have a role to play in ensuring representative samples and the inclusion of under-represented groups.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-12-08T06:56:05Z
DOI: 10.1177/15562646221138450
- Variability in Ethics Review for Multicenter Protocols in Buenos Aires,
Argentina. An Observational Study-
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Authors: Javier Mariani, María Laura Garau, Adriel Jonas Roitman, Claudia Vukotich, Leonardo Perelis, Fernando Ferrero, Adriana Gladys Domínguez, Cecilia Campos, Cecilia Serrano, Gabriel González Villa Monte
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
It has been reported that significant variability in the ethics review process affects multisite studies. We analyzed 1,305 applications for multicenter studies (409 unique protocols), from 1st January 2020 to 20th September 2021. We examined the variability in the times to approval and the first observation and the variation in the level of risk assigned. The median [IQR] variabilities were 42.19 [15.23–82.36] days and 8.00 [3.12–16.68] days, for the times to approval and to the first observation, respectively. There was disagreement in the level of risk assigned by the Research Ethics Committee (REC) in 24.0% of cases. Independent predictors of variability included the number of REC members. In our study, we found substantial variability in the ethics review process among health research protocols. Also, we describe methods to readily measure the delays and the variations in the ethics review process.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-10-26T06:46:01Z
DOI: 10.1177/15562646221134620
- Contract Cheating and Ghostwriting among University Students in Health
Specialties-
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Authors: Muaawia A. Hamza, Faisal R. Al Assadi, Abdulaziz A. Khojah, Renad M. AlHanaki, Nour T. Alotaibi, Rawan M. Kheimi, Abdullah H. Salem, Sumayyia D. Marar
First page: 536
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Contract cheating and ghostwriting are forms of misconduct that are unethical and a serious academic issue, especially among healthcare professionals, as they directly impact patient health. To date, research on this area in the Middle East has been limited. Therefore, we used a validated self-administered questionnaire to investigate the awareness, perceptions, and reasons for these behaviors among 682 students in health specialties at five universities in Riyadh, Saudi Arabia. The majority of the students (60.1%) were unaware of the terms “contract cheating” and “ghostwriting,” and 69.5% had not received any prior training on integrity. However, having prior training had a positive effect on awareness levels, and respondents attending private universities were significantly more aware than those attending public universities. The factors that contributed to contract cheating behavior included poor time management, English language difficulties, and a lack of writing skills. These findings emphasize the need for integrity training at the national level to raise awareness.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-09-26T05:40:51Z
DOI: 10.1177/15562646221128418
- Providing Public Engagement Training to Build Connections Between the
Community and Research Ethics Professionals: A Pilot Project-
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Authors: Ann R. Johnson, Nalini M. Nadkarni, Caitlin Q. Weber
First page: 545
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
There is growing interest for research ethics professionals to engage with members of the public, yet they often lack the training needed to engage effectively. The STEM Ambassador Program provides a promising framework for training research ethics professionals to form authentic community connections and carry out effective engagement activities based on shared interests and values. The experiences of ten research administrators who participated in a pilot of the STEM Ambassador training for research ethics professionals are presented. Post-training surveys of the research administrators indicate that they valued the training and the skills obtained, and intend to continue with public engagement activities with support of their leadership.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-09-14T08:04:46Z
DOI: 10.1177/15562646221126282
- Research Site Anonymity in Context
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Authors: Mzikazi Nduna, Simangele Mayisela, Sadna Balton, Pumla Gobodo-Madikizela, Jabulani G. Kheswa, Itumeleng P Khumalo, Tawanda Makhusha, Maheshvari Naidu, Yandisa Sikweyiya, Sello L. Sithole, Cily Tabane
First page: 554
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
This paper utilizes critical theory to interrogate and problematize the practice of anonymising research sites as an ethical imperative. The contributing authors conduct research in and with various communities in southern Africa, position themselves and work from and within diverse areas and specialities of the social sciences. This article is developed from their rich and wide spectrum of field experience with a great diversity of communities, but mainly the poorer, under-resourced, socially and economically marginalized. The authors strongly identify with these communities whose anonymity in published research is seen as marginalizing. Such research sites are places and communities where these researchers grew up and live in, and thus not just as peripheral or ‘out there’ entities. Therefore, the naming of research sites in this context is deemed as being ethical, out of respect for participants, for a contextually embedded understanding, and for well-targeted interventions and policy influence.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-03-08T11:15:04Z
DOI: 10.1177/15562646221084838
- Equitable Design and Use of Digital Surveillance Technologies During
COVID-19: Norms and Concerns-
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Authors: Bridget Pratt, Michael Parker, Susan Bull
First page: 573
Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Given the unprecedented scale of digital surveillance in the COVID-19 pandemic, designing and implementing digital technologies in ways that are equitable is critical now and in future epidemics and pandemics. Yet to date there has been very limited consideration about what is necessary to promote their equitable design and implementation. In this study, literature relating to the use of digital surveillance technologies during epidemics and pandemics was collected and thematically analyzed for ethical norms and concerns related to equity and social justice. Eleven norms are reported, including procedural fairness and inclusive approaches to design and implementation, designing to rectify or avoid exacerbating inequities, and fair access. Identified concerns relate to digital divides, stigma and discrimination, disparate risk of harm, and unfair design processes. We conclude by considering what dimensions of social justice the norms promote and whether identified concerns can be addressed by building the identified norms into technology design and implementation practice.
Citation: Journal of Empirical Research on Human Research Ethics
PubDate: 2022-09-07T08:03:27Z
DOI: 10.1177/15562646221118127
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