Research Ethics Policies Research Articles

Negotiating local and global: Developing Social Science research ethics policy in a Central Asian context

Negotiating local and global: Developing Social Science research ethics policy in a Central Asian context

Sources of authority influencing the development of research ethics policy in Muslim-majority secular jurisdictions: compatibility, contradiction and compromise

Sources of authority influencing the development of research ethics policy in Muslim-majority secular jurisdictions: compatibility, contradiction and compromise

Contextualizing Contemporary Research Ethics Policies and Practices in Significant Historical Events

AbstractTheEthics Code for Behavior Analysts(BACB Code; Behavior Analyst Certification Board®, 2020) includes six items in “Section 6—Responsibility in Research'' that cover the protection of human participants in research activities conducted by Board Certified Assistant Behavior Analysts® and Board Certified Behavior Analysts®. This article provides a brief primer regarding significant historical events and foundational documents that have resulted in the contemporary research ethics policies and practices in the field of behavior analysis. This walk through the last century from the Nuremberg Code to the Declaration of Helsinki, the Belmont Report, and 45 CFR Part 46—Protection of Human Subjects provides a summary of why the codification of requirements such as “informed consent” and “Institutional Review Board” oversight was necessary. The linkages between these historical events and the current BACB Code items are discussed. In addition, situations in which the BACB Code does not provide explicit instruction but foundational documents may provide additional guidance are considered. Finally, opportunities for future data-driven decision making in research ethics are offered.

An evaluation on research and publication ethics policies of journals publishing in the field of veterinary sciences in Türkiye

The research quality and publication of journals in any field are crucial because they show the development in the field. This study aimed to examine the research and publication ethics policies of the professional journals that continue to publish in the field of veterinary sciences and reveal the current situation. In this study, journals publishing in the field of veterinary sciences were searched through DergiPark, Web of Science database, and their websites. The features of these journals, the indexes in which they are indexed, statements about research-publication ethics, and the national and international academic institutions were gathered under appropriate headings. The obtained data were analyzed using descriptive statistical techniques such as frequency and percentage. Moreover, 11.5% (n = 3) of the veterinary journals in Türkiye were indexed in SCI-E, 3.8% (n = 1) were indexed in E-SCI, 57.7% (n = 15) were university journals, 42.3% (n = 11) published two issues per year, and 57.7% (n = 15) of journals had publication languages as Turkish and English. Therefore, the number and quality of publications in journals in veterinary sciences have increased in recent years. They comply with “national peer-reviewed journal” criteria and the COPE and ICMJE criteria, wherein the TR index, one of the most comprehensive scanning platforms in Türkiye, has also adopted their principles in several parameters. However, there is no common standard for journals.

Post Graduate Students' Experiences with Research Ethics: A South African Perspective.

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 teaching methodologies, curricula, and the educational environment for postgraduate students. The purpose of the study was to investigate postgraduate students' experiences with research ethics during their research project. A sample of 11 participants was used. Through online interviews, this qualitative study, underpinned by the interpretivist paradigm, collected data from postgraduate students from different disciplines and universities in South Africa between June and August 2021. The findings showed different perspectives on the training received in research ethics, and on support and guidance received from supervisors, and the application of research ethics principles in their research projects. Most participants indicated gaps in the teaching and support they received and had not read their university research ethics policies. By focusing on students' experiences in a developing country and different disciplines, the study contributes to the body of knowledge on postgraduate student experiences. Furthermore, the findings suggest that there is need for more research ethics training amongst postgraduate students in South Africa.

Privacy Considerations in the Canadian Regulation of Commercially-Operated Healthcare Artificial Intelligence

Artificial intelligence (AI) is increasingly being developed and implemented in healthcare. This presents privacy issues since many AI systems are privately owned and rely on data sharing arrangements for mass quantities of patient health information. We investigated the Canadian legal and policy framework focusing on regulation relevant to the potential for inappropriate use or disclosure of personal health information by private AI companies. This included analysis of federal and provincial legislation, common law and research ethics policy. Our evaluation of the various regulatory frameworks found that together they require private AI companies and their partners in healthcare implementation to meet high standards of privacy protection that prioritize patient autonomy, with limited exceptions. We found that healthcare AI systems are required to be consistent with the rules and foundational ethical norms enshrined in law and research ethics, even if this poses challenges to implementation. Data sharing arrangements must focus on tight integration with high levels of data security, strong oversight and retention of patient control over data.

Cultural Values and Beliefs of Selected Local Communities in Botswana: Implications for Human Subject Research Ethics Practice.

Calls have been made for researchers prospectively and continuously to engage study communities. If done, this typically occurs through a specific research study or collaboration. Rarely are community mores examined in-depth to understand implications for research ethics policy processes. We describe a qualitative study designed to understand local community values, beliefs, and practices that relate to research ethics in Botswana and explore how communities would want their interests represented. Through focus group discussions across two different selected ethnic communities and in-depth interviews with paramount chiefs, we highlight a range of community values and expectations that represent concrete behavioral representations of respect and trustworthiness. Communities are willing to engage in the process of enhancing research and research ethics policies and procedures. We invite future research and training that seek to connect local conceptualizations of substantive and procedural aspects of research ethics.

A scoping review of genetics and genomics research ethics policies and guidelines for Africa

BackgroundGenetics and genomics research (GGR) is increasingly being conducted around the world; yet, researchers and research oversight entities in many countries have struggled with ethical challenges. A range of ethics and regulatory issues need to be addressed through comprehensive policy frameworks that integrate with local environments. While important efforts have been made to enhance understanding and awareness of ethical dimensions of GGR in Africa, including through the H3Africa initiative, there remains a need for in-depth policy review, at a country-level, to inform and stimulate local policy development and revision on the continent.MethodsTo identify and characterize existing ethics-related guidelines and laws applicable to GGR across much of Africa, we conducted a scoping review of English language policy documents identified through databases, repositories, and web searches. Thirty-six documents were included and coded using a framework that contained a range of themes across five analytical categories: (1) respect, (2) beneficence, (3) justice, (4) independent oversight, and (5) bans and prohibitions. Data analysis software (NVivo 12) was used to organize, code, and tabulate information according to document characteristics and topics. Illustrative examples of policy requirements were selected for inclusion.ResultsDocuments that met inclusion criteria spanned 20 years; published between 1996 and 2018, with the majority (58%) published after 2009. About two-thirds were denoted as “guidelines,” and slightly more than half were non-exclusive to GGR. Very few (six) country-level documents identified were specific to GGR. Requirements related to the principle of “respect” appeared most often across all documents, relative to other principles and processes. The most commonly stated ban was on reproductive cloning. Other prohibitions applied to germline editing, undue inducements in research, sample use for commercial purposes, employee mandatory DNA testing, fetal sex selection, stem cell use, eugenics, and research without public health benefits.ConclusionsEnforceable policies that are indispensable to the ethical conduct and review of GGR are either deficient or missing in many African countries. Existing international, GGR-specific ethics guidelines can be used to inform GGR policy development at a country-level, in conjunction with insight from country specific ethics committees and other local stakeholders.

The Secretariat on Responsible Conduct of Research: Ethics Guardians or Keystone Cops?

Human research ethics policies invariably hold confidentiality to be a core ethics principle. However, in North America over the past 50 years, numerous third parties—including police, grand juries, Congressional committees, coroners and corporations—have used various lawful mechanisms, such as subpoenas or search warrants, to attempt to gain access to confidential research information. The failure to legislate confidentiality protection for research participants in Canada may reflect the fact that there have been relatively few lawful threats to research confidentiality. However, the legal landscape has changed significantly over the past seven years; from 2012 to 2018, there were six new third-party party attempts to access confidential research information in criminal, civil and coroners’ courts. One of these challenges involved assisted suicide researcher Russel Ogden. In May 2014, the BC Coroner served Ogden, then a Kwantlen faculty member, a summons to interview him under oath concerning the death in 2012 of one of his research participants. Because the Coroner’s examination could potentially compromise Ogden’s promise of research confidentiality, he requested that Kwantlen provide legal support. When Kwantlen declined to provide that support, a third party made a formal complaint to the Secretariat on Responsible Conduct in Research concerning Kwantlen’s conduct. The ensuing article describes the Secretariat response to that complaint. The article suggests that, rather than leaving the defence of research confidentiality in the courtroom to individual research institutions, the Granting Councils should establish a fund to which universities contribute to defend research confidentiality against any lawful challenge.

Disclosure of individual‐specific results to participants of a dementia prevalence study: A qualitative study

AbstractBackgroundDementia research and innovation is action area 7 of the WHO Global action plan on the public health response to dementia. Effective progress in this area depends on the promotion of participation in research both for people with and for those without dementia. However, evidence suggests that current research ethics policies and norms take participants’ preferences in little account, and may hinder equitable opportunities to take part in epidemiological research. Before conducting an epidemiological study into dementia and its impact, whose primary outcome is prevalence of dementia based on a probabilistic dementia diagnosis, we conducted a qualitative study to explore participants’ understanding of the meaning of individual‐specific results and on their preferences regarding their return.MethodBetween July 2019 and January 2020, we conducted interviews with individuals who participated in the validation phase of an epidemiological study (N = 22). Participants were 65 years old or older and resident in the Italian‐speaking part of Switzerland. We elicited information on their participation experience in the validation study, their reasons for participation (including expectations and potential barriers), their opinion on the return of research results, their understanding of these results. We also explored the communication preferences and the personal justification in favor or against the and the anticipated feelings with respect to the return of results. Finally, we discussed their preferences regarding the provision of informed consent for the return of study results. All interviews were recorded, transcribed and analyzed using thematic analysis techniques.ResultMost participants reported that researchers have a duty to share individual‐specific results with participants if requested to, and that these results must meet certain validity and reliability criteria. The main reasons in support for the return include the desire to know/ exclude oneself dementia diagnosis, and the need to establish a relationship of mutual trust between researchers and participants.ConclusionIn the context of an epidemiological study on dementia, researchers should demonstrate the validity of individual results (including dementia diagnosis) and offer in advance to participants the opportunity to receive this information accounting for their preferences and values.

Unmasking the Hunter: An Exploration of Predatory Publishing

Authors and their institutions are vulnerable to predatory publishers due to the “publish or perish” research mentality. The author’s spam-filtered emails from journals were collected for 90 days and analysed for 8 stylistic components; the journal website was explored for publishing fees, research ethics policies, and physical address; the publisher’s physical address was cross-checked in corporate registries for validation; each journal was checked for indexing in Embase®, MEDLINE®, and the Directory of Open Access Journals (DOAJ). One hundred twenty email solicitations were received from 101 journals. Overall, 52 (43.3%) solicitations were from specialty medical journals (e.g., endocrinology, cardiology, orthopaedics); 23 (19.2%) were sent from general medicine journals. Flattery (77 emails) and grammar errors (761 total, x̅ 6.3/email) were common. Publication fees ranged from free to USD 5,000, with some journals requiring copyright transfer to the publisher yet charging authors and claiming to be open access. Most journals were found to be based in either India (75.3%) or Nigeria (17.8%); however, the physical address noted on the journal website was often deceptive (70.3%) or undisclosed (13.9%). Some of the journals had either no research ethics policy (n=7) or a policy that addressed only plagiarism (n=16). Guidance to detect predatory publishers is provided.

SKIP: emotional well-being intervention.

SKIP (Students for Kids International Projects) is a student-led global health charity; each university branch partners with a local non-governmental organisation in their branch country, where they run interventions identified by the local community. Research in these countries has identified an educational need for interventions around emotional well-being. In this article, we reflect on the process of creating culturally appropriate educational resources for children and young people in low- and middle-income countries, to be delivered by non-professionals. SKIP has a Research Ethics Policy. No external ethics approval was required.

RETRACTED ARTICLE: Silencing circular RNA-ZNF652 represses proliferation and EMT process of renal carcinoma cells via raising miR-205

We, the Editors and Publisher of the journal Artificial Cells, Nanomedicine, and Biotechnology, have retracted the following article: Ludong Zhang & Ya Guo (2020) Silencing circular RNA-ZNF652 represses proliferation and EMT process of renal carcinoma cells via raising miR-205. Artificial Cells, Nanomedicine, and Biotechnology, 48(1), 648–655, DOI: 10.1080/21691401.2020.1725532 Since publication it came to our attention that further information was required regarding the data presented and the methodological process of the reported research. We contacted the authors requesting their original data and details of the research protocol. In response, the authors have requested retraction of their article because they acknowledge their research did not comply with the journal's research ethics policies on human research. In addition, they were unable to provide their original data to the journal to verify its authenticity. The authors, Editor and Publisher all agree retraction of the article is necessary to ensure the integrity of the scholarly record. We have been informed in our decision-making by our policy on publishing ethics and integrity and the COPE guidelines on retractions. The retracted article will remain online to maintain the scholarly record, but it will be digitally watermarked on each page as ‘Retracted’.

Research, Digital Health Information and Promises of Privacy: Revisiting the Issue of Consent

The obligation to maintain the privacy of patients and research participants is foundational to biomedical research. But there is growing concern about the challenges of keeping participant information private and confidential. A number of recent studies have highlighted how emerging computational strategies can be used to identify or reidentify individuals in health data repositories managed by public or private institutions. Some commentators have suggested the entire concept of privacy and anonymity is “dead”, and this raises legal and ethical questions about the consent process and safeguards relating to health privacy. Members of the public and research participants value privacy highly, and inability to ensure it could affect participation. Canadian common law and legislation require a full and comprehensive disclosure of risks during informed consent, including anything a reasonable person in the participant or patient’s position would want to know. Research ethics policies require similar disclosures, as well as full descriptions of privacy related risks and mitigation strategies at the time of consent. In addition, the right to withdraw from research gives rise to a need for ongoing consent, and material information about changes in privacy risk must be disclosed. Given the research ethics concept of “non-identifiability” is increasingly questionable, policies based around it may be rendered untenable. Indeed, the potential inability to ensure anonymity could have significant ramifications for the research enterprise.

Unpacking Research Ethical Stands and Practices in Academic Institutions: A Case Study of a University From Ethiopia

The present work attempts to address the ethical stands and practices of research integrity among early career professionals in social sciences research in one of the Ethiopian Universities. The major goal of the research was unpacking the institutional research ethics stands and practices, taking a case study in one institution. The method of the research was document analysis and discussion with authorities research offices. The documents assessed were, university research proposal evaluation guidelines, national research review ethics guideline, proposals initiated by young academics and completed second-degree theses in two departments, and Research Ethics Policy (2016) of the institution. The results revealed, there is a weak institutional stand towards social science research ethics. There is no single document applied in managing the ethical realms of researches among the academic staffs and students. Among the assessed 41 documents, only 29.26% tried to practice partial ethical consideration in the proposals and theses. The rest 70.74% documents never stated a word about ethics. Even those documents did not show the complete process of the researches, the challenges encountered, and failed to attach evidences in the documents. Therefore, stand towards research ethics is marginalized, and research ethical practices among the researchers, mentors, and supervisors are destructed. At this scenario, it positive to conclude that the issues of research ethics will be a challenge to the university in general and to the careers of young professionals in particular. Therefore, it needs absolute priority before too late to manage the gap.

The Research Ethics Policy for the Effective Utilization of Research Equipment

Proposed in this article is a solution and guideline for scientific misconduct prevention through a research ethics policy proposal for the effective utilization of research equipment. First, the scientific misconduct classification system for research equipment utilization is discussed and presented. Then, the results of the survey carried out targeting research equipment scientists for the analysis of the recognition of scientific misconduct in research equipment utilization are presented. For this survey, the non-probability sampling method was utilized for 60 research equipment scientists. The results of the survey conducted among research equipment scientists showed significant correlations among the variables for all the questionnaire items. This paper proposes a research ethics policy for scientific misconduct prevention and for the effective utilization of research equipment through scientific misconduct classification in relation to research equipment utilization, and based on the survey results from the research equipment scientists.

Transnational policy migration, interdisciplinary policy transfer and decolonization: Tracing the patterns of research ethics regulation in Taiwan.

Research ethics regulation in parts of the Global North has sometimes been initiated in the face of biomedical scandal. More recently, developing and recently developed countries have had additional reasons to regulate, doing so to attract international clinical trials and American research funding, publish in international journals, or to respond to broader social changes. In Taiwan, biomedical research ethics policy based on 'principlism' and committee-based review were imported from the United States. Professionalisation of research ethics displaced other longer-standing ways of conceiving ethics connected with Taiwanese cultural traditions. Subsequently, the model and its discursive practices were extended to other disciplines. Regulation was also shaped by decolonizing discourses associated with asserting Indigenous peoples' rights. Locating research ethics regulation within the language and practices of public policy formation and transfer as well as decolonization, allows analysis to move beyond the self-referential and attend to the social, economic and political context within which regulation operates.

What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda

ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study.

Ethical considerations for conducting sexual and reproductive health research with female adolescents engaged in high-risk behaviours in China

BackgroundChinese female adolescents engaged in sex trade and substance use are often criminalized and stigmatized. As a result of these cultural, legal and political constraints, ethical concerns can discourage investigators from engaging these adolescents in research. This paper aims to address the ethical tensions between protection and inclusion in conducting sexual and reproductive health (SRH) research with adolescents engaged in high-risk behaviours. Processes of moral reasoning, and examples and practical mechanisms in managing such ethical challenges were presented in the hope of advancing the research ethics policies and practice with adolescents. MethodsWe extracted ethical issues from three previously conducted SRH studies involving 517 Chinese female adolescents. Utilizing the principles of justice, beneficence, and respect for persons as articulated in the Belmont Report as a framework, we thematically summarised the key ethical considerations regarding inclusion and protection, then examine the ethical tensions and solutions within the local context. ResultsFindings suggest that the balance between protection and inclusion can be achieved by both considering the evolving decision-making capacity of adolescents as well as the level of risk. A community-based participatory approach shows promise in advancing adolescent engagement and empowerment. Ethically robust approaches contribute to the greater relevance and validity of the findings. ConclusionsOur studies suggest that it is crucial to achieve adolescents’ meaningful involvement in all levels of research and interventions, researchers need to shift their perspectives of the target population from subjects to key stakeholders in design and implementation of research.

Postcolonial, decolonial research dilemmas: fieldwork in Australian Indigenous contexts

We come to this article as non-Indigenous teacher educators working as qualitative researchers in postcolonial/decolonial (Mignolo, 2000) times. We explore matters related to schooling in remote Australian Indigenous communities. In this article, we respond to Delamont’s invitation for qualitative researchers to revisit (Delamont and Hamilton, 1984) and think reflexively (Delamont, 2009) about our field work research methods. In doing so, attention is drawn to research processes involved with observing, narrating and writing lives and experiences. We highlight matters related to sequencing dilemmas (Delamont, 2009), the need to locate the self-as-researcher in the social (Delamont, 2007), and calling out ethical tensions associated with the ‘catch 22’ of confidentiality and acknowledgement (Delamont, 2007). Two separate researcher recounts of field notes are used to render visible our reflexive thinking as we attempt to negotiate Western educational research ethics policies and procedures and ways of knowing and being in Indigenous contexts.