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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 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
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Authors:Ann R. Johnson, Nalini M. Nadkarni, Caitlin Q. Weber 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
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Authors:Bridget Pratt, Michael Parker, Susan Bull 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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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 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
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Authors:R. Constance Wiener First page: 412 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 research is to determine if there was a positive trend of publishing ethical statements in dental genetic research. The study is limited to AXIN2 mutations which may be associated with oligodontia and cancer.MethodsA MEDLINE search of 2011–2021 articles concerning AXIN2, oligodontia, and ethical statements was conducted. Reviews, nonhuman subject research, abstracts, and articles not written nor translated into English were excluded.ResultsForty-four studies were found; 10 excluded. There were 25 (75.8%) with ethical statements, and 25 (75.8%) with participant consent statements. There was no significant difference by year in ethical statements over the ten years (p = 0.094).ConclusionThere is a need to encourage more ethical statements in publications especially for genetically sensitive topics to reassure readers of ethical practices. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-07-25T11:48:19Z DOI: 10.1177/15562646221116801
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Authors:Judy Illes, Ashley Lawson, Patrick J. McDonald First page: 426 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 considerations around the study design of the discrete choice experimental paradigm that pertain to vulnerability of and caregiving burden on the population, imbalance of benefit-to-load of participation, and limitations of cultural meaningfulness and generalizability. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-07-18T02:49:26Z DOI: 10.1177/15562646221112339
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Authors:Michelle R. Brear First page: 455 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. Bridget Pratt and Adrian Harper ( ) 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 application of a literature review approach from literary and media studies, to health sciences in which literature reviews have traditionally focused on synthesizing evidence about intervention effectiveness, should be commended. It has potential to advance theoretical understandings of ethics in health research. However, I argue here that Pratt and Harper’s (2021) search strategy has several weaknesses, which suggests that their results must be interpreted with caution. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-04-29T05:12:38Z DOI: 10.1177/15562646221097226
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Authors:Bridget Pratt, Adrian Harper First page: 459 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print.
Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-05-03T11:43:41Z DOI: 10.1177/15562646221097225
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Authors:Larimar Rodriguez, Cristina Murray-Krezan, Lidia Regino, Maria Tellez, Camille Vasquez, Virginia Sandoval, Daniel Perez Rodriguez, Blanca Pedigo, Janet Page-Reeves First page: 461 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 trial (RCT) to reduce social isolation and depression. This strategy was designed to explain the concept of randomization, explain what participating in the research study entailed, and ensure informed consent. Potential participants viewed a presentation explaining the study and a video including animation with voice-over explaining the concept of randomization. We administered a pre/post survey. Respondents (N = 59) reported an increase in their understanding of randomization, intention to enroll, and attitude towards participating in research. We conclude that a culturally and contextually situated multimedia approach is an effective model when recruiting underrepresented populations with low literacy for RCTs. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-05-19T04:33:14Z DOI: 10.1177/15562646221102682
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Authors:Hiran Thabrew, Noor Aljawahiri, Harshali Kumar, Nicholas Bowden, Barry Milne, Megan Prictor, Vanessa Jordan, Josefein Breedvelt, Toni Shepherd, Sarah Hetrick First page: 471 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 regarding its use for research.A qualitative study was undertaken to examine the views of forty individuals attending a large hospital in Auckland, including those of Māori ethnicity and young people. Semi-structured interview data were analysed using Braun and Clarke's method of thematic analysis.Seven key themes emerged: 1) Limited knowledge about medical data held in national databases; 2) Conditional support for the use of the IDI, including for research; 3) Concerns regarding the misuse of IDI data; 4) The importance of privacy; 5) Different views regarding consent for use of data for research; 6) Desire for access to personal data and the results of research; and 7) Concerns regarding third party and commercial use. Young people and those of Māori ethnicity were more wary of data misuse than others.Although there is reasonable support for the secondary use of public administrative data in the IDI for research, there is more work to be done to ensure ethical and culturally appropriate use of this data via improved consent privacy management processes and researcher training. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-07-18T03:26:44Z DOI: 10.1177/15562646221111294
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Authors:Francis Anyaka Amayoa, Frederick Nelson Nakwagala, John Barugahare, Ian Guyton Munabi, Erisa Sabakaki Mwaka First page: 483 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 understanding of consent information. The mean objective (actual) and subjective (perceived) understanding scores were 78.7% and 91.7% respectively. Participants adequately understood most elements of consent however, some elements were poorly understood including foreseeable risks, protection of confidentiality and compensation for research related injury. Overall there was inadequate comprehension of critical elements of informed consent and there was dissonance between actual and perceived comprehension of informed consent. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-05-12T12:55:08Z DOI: 10.1177/15562646221100430
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Authors:Amal Matar, Henry J. Silverman First page: 494 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 translated to English from Arabic and back by an accredited translation service. We performed an ethical analysis of the law based on the seven ethical requirements for clinical research proposed by Emanuel et al. and compared it with other regulations in the Arab region. The law contains provisions that fulfill all requirements for ethical research to varying degree. Provisions necessitating the sharing of participants’ data and biospecimens by the Central Intelligence Agency requires further specifications to ensure privacy protection. Also, the law poses problematic liabilities that could hamper medical research. Egypt's law compares favorably with other laws in the region. Potential items that require further specification can be addressed in the executive regulations currently being drafted for the law. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-05-17T05:10:04Z DOI: 10.1177/15562646221096188
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Authors:M. Kemal Temel First page: 504 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 principles for ethical conduct and publication of human-subject research, most notably informed consent (IC) and research ethics committee (REC) approval. This retrospective observational study was a first study to investigate the quality of reporting of these protections in a selected sample of medical papers published in Turkey. A total of 573 research articles published in the official journals of six leading Turkish medical schools between January 2018 and December 2020 were searched for information on obtaining (i) REC approval, (ii) written IC from research subjects or their legal guardians/representatives, and (iii) an REC-granted IC waiver when it was found, as stated in the DoH, “impossible or impracticable to obtain consent” from research subjects. Similarly, a total of 166 case reports were searched for a statement about publication-specific IC, as was recommended by COPE. Despite a statistically significant improvement over the years, the overall rates were found to be unsatisfactory. The protections were particularly misused or underused in retrospective research, where the rates of reporting written IC (15.41% vs. 48.61%) and REC approval with date and reference number information (45.38% vs. 61.11%) were significantly lower than in prospective research (p Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-06-22T04:40:55Z DOI: 10.1177/15562646221108600
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Authors:Mutshidzi A Mulondo, Joyce M Tsoka-Gwegweni, Puleng LenkaBula, Perpetual Chikobvu First page: 515 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 studies spoke directly on administrators’ capacity development, while the remaining 20 focused on the capacity development of committees or of committee members. The two studies which spoke directly on administrators reported about two capacity development efforts targeting administrators in Africa, namely the African Conference for Administrators of Research Ethics Committees, and the West African Bioethics Training Program. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-04-27T07:57:58Z DOI: 10.1177/15562646221097044
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Authors:Min-Fu Tsan, Hannah Van Hook First page: 525 Abstract: Journal of Empirical Research on Human Research Ethics, Ahead of Print. 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 159% and protocols requiring IRB continuing reviews decreased by 28%. As only 48% of all protocols in 2021 were subjected to the revised Common Rule requirements, numbers of exempt protocols and protocols requiring IRB continuing reviews will continue to increase and decrease, respectively, in the next few years. Among a total of 16 IRB performance metrics studied, 4 improved, 4 deteriorated, and 8 remained unchanged from 2016 through 2021. This study represents the first effort to evaluate the impact of revised Common rule on IRB quality and performance. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2022-04-26T11:27:24Z DOI: 10.1177/15562646221094407
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Authors:Adrian Harper, Bridget Pratt Pages: 431 - 454 Abstract: Journal of Empirical Research on Human Research Ethics, Volume 17, Issue 4, Page 431-454, October 2022. The ethics of research involving Aboriginal populations and low and middle-income country populations each developed out of a long history of exploitative research projects and partnerships. Commonalities and differences between the two fields have not yet been examined. This study undertook two independent literature searches for Aboriginal health research ethics and global health research ethics. Content analysis identified shared and differently emphasised ethical principles and concepts between the two fields. Shared ethical concepts like “benefit” and “capacity development” have been developed to guide collaborations in both Aboriginal health research and global health research. However, Aboriginal health research ethics gives much greater prominence to ethical principles that assist in decolonising research practice such as “self-determination”, “community-control”, and “community ownership”. The paper argues that global health research ethics would benefit from giving greater emphasis to these principles to guide research practice, while justice as approached in global health research ethics may inform Aboriginal health research practice. With increasing attention being drawn to the need to decolonise global health research, the lessons Aboriginal health research ethics can offer may be especially timely. Citation: Journal of Empirical Research on Human Research Ethics PubDate: 2021-12-21T04:17:26Z DOI: 10.1177/15562646211058253 Issue No:Vol. 17, No. 4 (2021)
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