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Valuing Academic Freedom and Advocacy J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2024-04-08 Tanya Doherty, Max Kroon, Catherine Pereira-Kotze
This is a correspondence letter in response to an article published in the journal: Flaherman VJ, Nankabirwa V, Ginsburg AS. Promoting Transparent and Equitable Discussion of Controversial Research. Journal of Empirical Research on Human Research Ethics 2023; 18(4): 248–9.
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Balancing Ethics and Culture: A Scoping Review of Ethico-Cultural and Implementation Challenges of the Individual-Based Consent Model in African Research J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2024-03-18 Richard Appiah, Giuseppe Raviola, Benedict Weobong
Objective: This review explores the ethico-cultural and implementation challenges associated with the individual-based informed consent (IC) model in the relatively collectivistic African context and examines suggested approaches to manage them. Methods: We searched four databases for peer-reviewed studies published in English between 2000 to 2023 that examined the ethico-cultural and implementation
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Evaluation of a Training Program on Gender Mainstreaming in Health Research Evaluation at the Senegalese National Research Ethics Committee J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2024-03-18 Guillermo Z. Martínez-Pérez, Carme Campoy Guerrero, Brigitte Bagnol, Samba Cor Sarr, El Hadji Mamadou Mbaye, Ousmane Diouf, El Hadji Ibrahima Touré, Viviane Mbengue, Oumy Ndiaye, Farah Nabil
Health research must be of high ethical and scientific quality and consider the needs and experiences of women, men, and nonbinary individuals. National Research Ethics Committees (RECs) are in a strategic position to impede sex- and gender-blind research. In 2020 and 2021, training programs on gender mainstreaming and sex and gender approaches in research evaluation were launched in Senegal. They
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Contraception Requirements in Clinical Research Consent Forms: Assessing and Supporting Gender Inclusive Practices J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2024-03-11 Tara Coffin, Erin Brower, Sharad Adekar
Gender-diverse individuals are underserved in clinical research settings. Reliance on gendered language throughout the consent process for clinical research contributes to the marginalization of these populations. The research objective was to assess use of gender-inclusive language used to describe the contraception requirement in consent forms. We categorized and analyzed contraception language in
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Evaluation Turkish Academic and Student Attitudes on Plagiarism: Validity and Reliability of the Plagiarism Attitudes Scale J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2024-02-26 Gamze Özbek Güven, Feyza Inceoğlu, Şerife Yilmaz, Fuat Ince
The main purpose of this study was to translate the Plagiarism Attitude Scale into Turkish and validate it for use in Turkish settings, in order to better understand research integrity attitudes and awareness of the Turkish academic and student community, while also contributing an instrument for research in this area. The research was designed and conducted with 483 participants. In the process of
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When a Negative Experience Sticks With You: Does the Revised Outcome Debriefing Counteract the Consequences of Experimental Ostracism in Psychological Research? J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2024-01-24 Stefanie Miketta, Malte Friese
For research purposes, it is generally accepted that experimental ostracism manipulations can lead to a reduction of participants’ well-being. To eventually restore participants’ well-being, researchers rely on post-experimental debriefings that discredit prior deception. However, evidence suggests that discredited beliefs can persevere. The present research investigates whether a potent debriefing
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Trust in Medical Research: A Comparative Study among Patients at a Regional Referral Hospital and Community Members in Lira District, Northern Uganda J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2024-01-13 Jafesi Pulle, Sana Loue, Gertrude N. Kiwanuka, Bajunirwe Francis
Events such as the Tuskegee syphilis study shaped how the public perceives and trusts medical research globally. However, few studies have examined trust in medical research in developing countries. We tested the hypothesis that levels of trust may be lower among community members compared to hospitalized persons in Uganda. We enrolled 296 participants in rural northern Uganda, and 148(50%) were from
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“My Blood, You Know, My Biology Being out There…”: Consent and Participant Control of Biological Samples J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2024-01-09 Susan Racine Passmore, Abigail Gerbitz, Gregory R. Hancock, Laura Evans, Gina Green-Harris, Dorothy Farrar Edwards, Tyson Jackson, Stephen B. Thomas
The widespread and persistent underrepresentation of groups experiencing health disparities in research involving biospecimens is a barrier to scientific knowledge and advances in health equity. To ensure that all groups have the opportunity to participate in research and feel welcome and safe doing so, we must understand how research studies may be shaped to promote inclusion. In this study, we explored
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Public and Patients' Perspectives Towards Data and Sample Sharing for Research: An Overview of Empirical Findings. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-11-07 María C Sánchez,Juan Carlos Hernández Clemente,Fernando J García López
We aimed to review the attitudes and perspectives of the public and patients towards the sharing of data and biospecimens for research and to identify common dimensions, regardless of setting. Our review included systematic, scoping or thematic reviews of empirical studies retrieved from Medline (PubMed interface), Web of Science, Scopus, ProQuest and Cochrane Reviews. The main themes identified and
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Ethical Considerations for Engaging Children and Adolescents Living with HIV in Research in African Countries: A Systematic Review. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-10-23 Emma Gillette,Winstone Nyandiko,Ashley Chory,Michael Scanlon,Josephine Aluoch,Nandini Choudhury,Daniel Lagat,Celestine Ashimosi,Whitney Biegon,Dennis Munyoro,Janet Lidweye,Jack Nyagaya,Ilene Wilets,Allison DeLong,Rami Kantor,Rachel Vreeman,Violet Naanyu
Research engaging children and adolescents living with HIV (CALWH) is critical for youth-friendly services and HIV care, and researchers need to ensure that such engagement is ethical. We conducted a systematic review to identify key ethical considerations for the engagement of CALWH in research. The review focused on primary research articles conducted in African countries that examined ethical issues
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Evaluation of Informed Consent with Teach-Back and Audio Assistance to Improve Willingness to Participate in a Clinical Trial Among Underrepresented Minorities: A Randomized Pilot Trial. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-10-12 Brenda Jamerson,Barry Shuster
The informed consent form (ICF) is intended to assure that subject participation in research studies is informed and voluntary. Yet, there is ample evidence that many subjects do not adequately understand the concepts and language in a clinical trial ICF, which may undermine their willingness to participate in a clinical trial. In a randomized setting, we compared a standard read-only ICF to an audio-assisted
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"Dogs on Call": A Community-Engaged Human Subjects Training with Hospital Based Therapy Dog Teams. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-09-03 Lisa Townsend,Nyssa Towsley,Nancy R Gee
Problem: As community-engaged research (CER) methods evolve, Institutional Review Boards (IRBs) must adapt policies to facilitate CER research. This paper describes a novel collaboration between hospital-based therapy dog volunteer teams (CERs), academic faculty, and an IRB. Subjects: CER volunteers delivered a canine-assisted intervention to hospitalized adults in a clinical trial. Methods: IRB members
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Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-08-13 Ashley Chory,Winstone Nyandiko,Emma Gillette,Michael Scanlon,Josephine Aluoch,Hillary Koros,Dennis Munyoro,Celestine Ashimosi,Whitney Beigon,Janet Lidweye,Jack Nyagaya,Allison DeLong,Rami Kantor,Rachel Vreeman,Violet Naanyu
Introduction: Engaging youth living with HIV (YLWH) in research is critical to improving HIV-related outcomes, but their involvement raises unaddressed bioethical questions. Methods: This study used qualitative inquiry with Kenyan YLWH, caregivers, and subject matter experts (SMEs) to evaluate ethical considerations and strategies for research involving YLWH. Results: Interviews were conducted with
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Self-interestedness in Research Collaboration and its Association with Career Stage and Nature of Collaboration: A Survey of Zimbabwean Researchers. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-08-01 Similo Ngwenya,Nelius Boshoff
During collaboration in research, it may happen that some researchers become involved in behaviours that reflect so-called 'self-interestedness', which means that they pursue their personal interest or benefit without considering others. This study examined how researchers in Zimbabwe perceive instances of self-interestedness among research collaborators, and how these perceptions differ according
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Blinding Models for Scientific Peer-Review of Biomedical Research Proposals: A Systematic Review. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-08-01 Seba Qussini,Ross S MacDonald,Saad Shahbal,Kris Dierickx
Objective: The aim of this systematic review is to estimate: (i) the overall effect of blinding models on bias; (ii) the effect of each blinding model; and (iii) the effect of un-blinding on reviewer's accountability in biomedical research proposals. Methods: Systematic review of prospective or retrospective comparative studies that evaluated two or more peer review blinding models for biomedical research
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Human Subjects Research Guidelines for Undergraduate Researchers: An Analysis of Institutional Review Board (IRB) Websites at Top Liberal Arts Colleges in the United States. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-07-31 Nausica Marcos Miguel,Shiri Noy
Teaching students about the ethics of Human Subject Research (HSR) should be a fundamental component of students' education about research. In this article, we analyze the Institutional Review Board (IRB) websites of top-ranked Liberal Arts Colleges (LACs) to examine their framing of HSR carried out by undergraduate students. Our descriptive quantitative analysis from 50 top-ranked LACs in the United
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Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-07-25 Kelly A Matula,Amy A Blumling,Melanie F Myers,Michelle L McGowan,Ellen A Lipstein
To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent
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Post Graduate Students' Experiences with Research Ethics: A South African Perspective. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-07-16 Zamandlovu Makola,Nonceba Ntoyanto-Tyatyantsi
The strict adherence to ethical principles (namely respect for persons, beneficence/non-maleficence and justice) when conducting research involving human participants is the bedrock of research. There has been little research on students' experiences with the research ethics process and how these students incorporate ethical standards into their research work, despite previous research looking into
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Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-07-13 Sylvia Nabukenya,Catriona Waitt,Ronald Senyonga,Barbara Castelnuovo,Ian Guyton Munabi,David Kyaddondo,Erisa S Mwaka
Little is known about whether people living with HIV would like to receive their results from pharmacogenomics research. This study explored the factors influencing participants' preferences and the reasons for their desire to receive individual results from pharmacogenomics research. We employed a convergent parallel mixed methods study design comprising a survey of 225 research participants and 5
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Promoting Transparent and Equitable Discussion of Controversial Research. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-07-12 Valerie J Flaherman,Victoria Nankabirwa,Amy Sarah Ginsburg
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Persuasive Appeals in Genetic Biobank Recruitment Campaigns: Social and Ethical Implications. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-06-20 Martin Meitern,Sten Hansson
The social and ethical implications of large-scale biobank donor recruitment campaigns have remained understudied. We use two recent campaigns of the population-based genetic biobank in Estonia as an example to demonstrate how campaign spokespersons try to persuade potential donors by appealing to (1) gaining self-knowledge, (2) gaining control over one's health, (3) fear of illness, (4) contributing
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Ethical Challenges of Cross-Cultural Research - The Example of a Psychological Research Project in the Andean Context. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-06-20 Helen Wefers,Vanessa Krüger,Nancy Beatriz Iza Simba,Yuri Amaya Guandinango
Using the example of a psychological research project in the Andean context, this explorative interview study adds to the current debate about ethical challenges of psychological cross-cultural research projects by being one of the first to address those challenges empirically. Using a multilevel approach, we conducted interviews with three groups of experts (study participants, i.e., Kichwa mothers
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Transplant Recipient Preferences Regarding Organ Donor Research: Their Role in Consent and use of Their Data. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-06-12 Amanda Lucas,Patricia H Strachan,Frederick D'Aragon,Aimee J Sarti,Maureen O Meade
Research on deceased organ donors has been hindered by concerns related to seeking research consent from transplant recipients. We undertook this qualitative study to elucidate solid organ transplant recipients views on organ donor research, their role in the consent for such research, and their preferences related to providing their data. We conducted interviews with 18 participants and three themes
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Health Research with Data in a Time of Privacy: Which Information do Patients Want? J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-06-12 Miriam Beusink,Folkert Koetsveld,Sonja van Scheijen,Tomas Janssen,Maarten Buiter,Marjanka K Schmidt,Susanne Rebers
When hospitals ask broad consent for the secondary use of patient data for scientific research, it is unknown for which studies the data will be used. We investigated what patients at a cancer hospital consider to be an adequate level and most suitable method of information provision using questionnaires (n = 71) and interviews (n = 24). A part of the respondents indicated that they would feel sufficiently
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Building Capacity for Research Ethics Committees in Uganda. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-06-04 Provia Ainembabazi,Barbara Castelnuovo,Stephen Okoboi,Walter Joseph Arinaitwe,Lydia Mpanga Sebuyira,Rosalind Parkes-Ratanshi,Pauline Byakika-Kibwika
Timely communication from Research Ethics Committees (REC) to researchers is essential to meet deadlines. We conducted a capacity building program for REC members, REC and research administrators, and researchers from seven RECs in Uganda in order to improve the research regulatory approval cycle. The training was delivered from March 2020 to July 2021. Trainees were evaluated using pre and post-training
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Documentary Assessment of the Abilities of Kyrgyzstan's Research Ethics Committees During Public Health Emergency and Non-Emergency Situations. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-05-18 Tamara Kudaibergenova,Muiz Ibrahim,Nityanand Jain,Janis Vetra
Institutional Research Ethics Committees (RECs) play crucial roles in the impartial and competent review of scientific research, particularly during public health emergencies. In this report, we examined their ability and capacity to provide this basic service during public health emergencies and non-emergency situations. Our qualitative documentary analysis revealed that there are currently no legal
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Informed Consent and Debriefing When Deceiving Participants: A Systematic Review of Research Ethics Guidelines J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-05-15 Kamiel Verbeke, Tomasz Krawczyk, Dieter Baeyens, Jan Piasecki, Pascal Borry
Informed consent and debriefing of research participants in studies that use deception are ethical safeguards for which existing scholarly work on their implementation remains variable and insuffic...
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Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-05-16 Jyoti Angal,Barbara Brockevelt,S Jean Caraway,DenYelle B Kenyon,Katherine Ziegler,Amy J Elliott
The last decade has witnessed growing calls for the return of individual research results. Prior work in genetic studies has shown that individual, contextual, and cultural factors influence participants' preferences for individual research results. There is a gap in knowledge about participants' views about other types of results, specifically those lacking clinical significance. This study investigates
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Genetic and Genomic Researchers’ Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-05-07 David Kaawa-Mafigiri, Deborah Ekusai Sebatta, Ian Munabi, Erisa Sabakaki Mwaka
Numerous ethical, legal, and social issues arise with biological sample sharing. The study explored the perspectives of genetic and genomic researchers on the sharing of biological samples in inter...
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Student Moral Foundations in the Context of Research Misbehavior: An Experimental Study J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-04-11 Ivan Buljan, Ružica Tokalić, Vicko Tomić, Marin Viđak, Ana Marušić
The study aimed to examine whether the use of words related to different moral foundations can predict the perceived severity of research misconduct. We gave two groups of participants, undergradua...
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Reporting Ethics Approval in Articles on Criminality. An Audit of Adherence to Swedish Legislation J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-04-10 Kjell Asplund, Kerstin Hulter Åsberg
According to the Swedish Ethics Review Act, research involving personal data on crimes should undergo independent ethics review. To explore the reporting of ethics approval, we extracted informatio...
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A Questionnaire Survey on Chinese Translation and Interpreting Scholars’ Publication Pressure and Its Impact on Research Quality and Publishing Ethics J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-03-17 Ying Cui, Xiao Liu
The issue of publishing ethics has been drawing attention from scholars of various fields, and this study focuses on the situation in translation and interpreting (T&I) studies. It surveys Chinese ...
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Disability Research in Australia: Deciding to Be a Research Participant and the Experience of Participation J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-01-23 Maddy Slattery, Carolyn Ehrlich, Michael Norwood, Delena Amsters, Gary Allen
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 ...
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Jordanian Undergraduate Students’ Views of Participation in Clinical Trials: The COVID-19 Example J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-01-09 Mamoun Ahram, Rahaf A. Al-Qaryouti, Dania S. Qarkash, Omar F. Salaymeh, Raghad A. Shaqqour
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 repre...
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Research Integrity Attitudes and Behaviors are Difficult to alter: Results from a ten Year Follow-up Study in Norway J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-01-05 Bjørn Hofmann, Magne Thoresen, Søren Holm
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 know...
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Structural Influences on Consent Decisions in Participatory Health Research in Eswatini J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2023-01-02 Michelle R. Brear, Pinky N. Shabangu, Karin Hammarberg, Jane Fisher
Recognition that structural factors influence participation decisions and have potential to coerce participation, emerged relatively recently in research ethics literature. Empirical evidence to el...
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Informed Consent: Research Staff's Perspectives and Practical Recommendations to Improve Research Staff-Participant Communication J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-12-23 Delphine Eeckhout, Karolien Aelbrecht, Catherine Van Der Straeten
Informed consent (IC) is the process of communication between research staff and potential research participants. However, ensuring that participants clearly understand what research participation ...
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Protecting the Vulnerable and Including the Under-Represented: IRB Practices and Attitudes J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-12-07 Luke Gelinas, David H Strauss, Ying Chen, Hayat R. Ahmed, Aaron Kirby, Phoebe Friesen, Barbara E. Bierer
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 ...
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Invited Peer Commentary: Research Site Anonymity in Context. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-12-01 Shenuka Singh,Penelope Engel-Hills
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Variability in Ethics Review for Multicenter Protocols in Buenos Aires, Argentina. An Observational Study J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-10-25 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
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 Jan...
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Contract Cheating and Ghostwriting among University Students in Health Specialties J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-09-25 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
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 dat...
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Providing Public Engagement Training to Build Connections Between the Community and Research Ethics Professionals: A Pilot Project J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-09-14 Ann R. Johnson, Nalini M. Nadkarni, Caitlin Q. Weber
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...
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Equitable Design and Use of Digital Surveillance Technologies During COVID-19: Norms and Concerns J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-09-07 Bridget Pratt, Michael Parker, Susan Bull
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 an...
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The Profile of Articles on AXIN2 Mutations, Oligodontia, and Ethical Statements in Dental Research J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-07-25 R. Constance Wiener
PurposeEditors often require ethical statements in research publications. This is particularly important with genetic data where discrimination may occur upon data disclosures. The purpose of this ...
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‘As Long as It's Used for Beneficial Things’: An Investigation of non-Māori, Māori and Young People's Perceptions Regarding the Research use of the Aotearoa New Zealand Integrated Data Infrastructure (IDI) J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-07-18 Hiran Thabrew, Noor Aljawahiri, Harshali Kumar, Nicholas Bowden, Barry Milne, Megan Prictor, Vanessa Jordan, Josefein Breedvelt, Toni Shepherd, Sarah Hetrick
The Aotearoa New Zealand Integrated Data Infrastructure (IDI) is a national database containing a wide range of data about people and households. There is limited information about public views reg...
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Ethical Considerations for Discrete Choice Experiments with Caregivers J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-07-18 Judy Illes, Ashley Lawson, Patrick J. McDonald
We discuss research ethics challenges experienced while running a discrete choice experiment administered to caregivers of children with treatment resistant pediatric epilepsy. We highlight ethical...
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A Critical Assessment of the Quality of Reporting of Ethical Protections in Medical Papers Published in Turkey J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-06-22 M. Kemal Temel
The Declaration of Helsinki (DoH), the International Committee of Medical Journal Editors (ICMJE) recommendations, and the Committee on Publication Ethics (COPE) guidelines outline the basic princi...
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A Study of a Culturally and Contextually Situated Multimedia Approach to Recruit a Hard-to-Reach Spanish-Speaking Population for a Randomized Control Trial (RCT) J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-05-18 Larimar Rodriguez, Cristina Murray-Krezan, Lidia Regino, Maria Tellez, Camille Vasquez, Virginia Sandoval, Daniel Perez Rodriguez, Blanca Pedigo, Janet Page-Reeves
Study designs involving randomization can be difficult to communicate to participants, especially those with low literacy. The literature on strategies to explain research concepts is limited, espe...
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A Study of a Culturally and Contextually Situated Multimedia Approach to Recruit a Hard-to-Reach Spanish-Speaking Population for a Randomized Control Trial (RCT). J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-05-18 Larimar Rodriguez,Cristina Murray-Krezan,Lidia Regino,Maria Tellez,Camille Vasquez,Virginia Sandoval,Daniel Perez Rodriguez,Blanca Pedigo,Janet Page-Reeves
Study designs involving randomization can be difficult to communicate to participants, especially those with low literacy. The literature on strategies to explain research concepts is limited, especially for non-English speakers. We measured the effectiveness of a culturally and contextually situated multimedia approach to recruit a cohort of 60 female Mexican immigrants (FMI) to a randomized control
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Ethical Analysis of Egypt's Law Regulating Clinical Research J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-05-16 Amal Matar, Henry J. Silverman
Lately, there has been increased research performed in Egypt. In response, the Egyptian Parliament published its first clinical research law in December 2020. The official version of the law was tr...
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Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-05-12 Francis Anyaka Amayoa, Frederick Nelson Nakwagala, John Barugahare, Ian Guyton Munabi, Erisa Sabakaki Mwaka
Several studies have reported inadequate comprehension of informed consent for genomic research. This study aimed to assess research participants’ understanding of critical elements of informed con...
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Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-05-12 Francis Anyaka Amayoa,Frederick Nelson Nakwagala,John Barugahare,Ian Guyton Munabi,Erisa Sabakaki Mwaka
Several studies have reported inadequate comprehension of informed consent for genomic research. This study aimed to assess research participants' understanding of critical elements of informed consent for genomic research. A cross-sectional survey involving 123 parents/caregivers of children participating in a paediatric genomic TB/HIV study was conducted. Only 47.2% of the participants had adequate
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Authors' Response to "Invited Commentary on 'Combatting Neo-colonialism in Health Research: What Can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other?'". J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-05-03 Bridget Pratt,Adrian Harper
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Invited Commentary on “Combatting neo-Colonialism in Health Research: What can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other?” (JERHRE-20-0064.R4) J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-04-28 Michelle R. Brear
Bridget Pratt and Adrian Harper ( 2021) conducted a comparison of articles identified through six electronic literature searches. Their aim was to “identify ethics literature… that discussed combatting neo-colonial models of research”. They used manifest content analysis to compare the conceptual content of articles from the fields of global health (GH) and Australian Aboriginal health (AH). This innovative
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Capacity Development of Research Ethics Administrators: Scoping Review J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-04-27 Mutshidzi A Mulondo, Joyce M Tsoka-Gwegweni, Puleng LenkaBula, Perpetual Chikobvu
Capacity development of research ethics committees is generally limited to members, and seldom includes administrators. This study sought to map the capacity development efforts of research ethics administrators. A scoping review was conducted. The literature search yielded 92 potentially relevant records, and further screening yielded 22 studies. The 22 studies were extracted and synthesized; two
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Invited Commentary on "Combatting neo-Colonialism in Health Research: What can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other?" J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-04-28 Michelle R Brear
Bridget Pratt and Adrian Harper ( 2021) conducted a comparison of articles identified through six electronic literature searches. Their aim was to "identify ethics literature… that discussed combatting neo-colonial models of research". They used manifest content analysis to compare the conceptual content of articles from the fields of global health (GH) and Australian Aboriginal health (AH). This innovative
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Capacity Development of Research Ethics Administrators: Scoping Review. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-04-27 Mutshidzi A Mulondo,Joyce M Tsoka-Gwegweni,Puleng LenkaBula,Perpetual Chikobvu
Capacity development of research ethics committees is generally limited to members, and seldom includes administrators. This study sought to map the capacity development efforts of research ethics administrators. A scoping review was conducted. The literature search yielded 92 potentially relevant records, and further screening yielded 22 studies. The 22 studies were extracted and synthesized; two
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Assessing the Quality and Performance of Institutional Review Boards: Impact of the Revised Common Rule J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-04-26 Min-Fu Tsan, Hannah Van Hook
The Common Rule, revised extensively to enhance human subjects protections and to reduce burdens to investigators and institutional review boards (IRBs), was implemented on January 19, 2019. We analyzed IRB performance metric data from 2016 through 2021 to evaluate the potential impact of the revised Common Rule on the quality and performance of IRBs. From 2016 to 2021, exempt protocols increased by
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Assessing the Quality and Performance of Institutional Review Boards: Impact of the Revised Common Rule. J. Empir. Res. Hum. Res. Ethics (IF 1.3) Pub Date : 2022-04-26 Min-Fu Tsan,Hannah Van Hook
The Common Rule, revised extensively to enhance human subjects protections and to reduce burdens to investigators and institutional review boards (IRBs), was implemented on January 19, 2019. We analyzed IRB performance metric data from 2016 through 2021 to evaluate the potential impact of the revised Common Rule on the quality and performance of IRBs. From 2016 to 2021, exempt protocols increased by