Ethical Issues In Research Research Articles

Mapping the Ethical Issues of Brain Organoid Research and Application

In 2008, researchers created human three-dimensional neural tissue – known as the pioneering work of “brain organoids.” In recent years, some researchers have transplanted human brain organoids into animal brains for applicational purposes. With these experiments have come many ethical concerns. It is thus an urgent task to clarify what is ethically permissible and impermissible in brain organoid research. This paper seeks (1) to sort out the ethical issues related to brain organoid research and application and (2) to propose future directions for additional ethical consideration and policy debates in the field. Toward (1), this paper first outlines the current state of brain organoid research, and then briefly responds to previously raised related ethical concerns. Looking next at anticipated scientific developments in brain organoid research, we will discuss (i) ethical issues related to in vitro brain organoids, (ii) ethical issues raised when brain organoids form complexes or have relationships with other entities, and (iii) ethical issues of research ethics and governance. Finally, in pursuit of (2), we propose research policies that are mindful of the ethics of brain organoid research and application and also suggest the need for an international framework for research and application of brain organoids.

ETHICS AND VALIDITY AS CORE ISSUES IN QUALITATIVE RESEARCH: A REVIEW PAPER


 
 Qualitative research is criticized for having issues validity, reliability, and ethics. This review paper focuses on two core issues involved in qualitative research generally and in educational research more specifically. Firstly, this review sheds light on ethical issues involved in qualitative research. It also discusses issues of validity in qualitative research. In this study, narrative review method has been adopted. The secondary sources or previous research studies have been reviewed in order to suggest some research directions regarding the issues of validity and ethics in qualitative research. It was found that researcher plays a central role in assuring both validity and ethics in qualitative research. Researcher are recommended to have command on research techniques required for conducting qualitative studies. Moreover, researchers are recommended to adopt ethically appropriate practices by conducting honestly robust qualitative studies.
 
 
 
 

Bioethics in Africa: Theories and PraxisYaw A.Frimpong‐Mansoh and Caesar A.Atuire, Editors Vernon Press, Delaware, United States, 2019, vii + 165, £21.00 (paperback), ISBN 978‐1‐62273‐459‐7

Book review. The article is a review of ethically germane and epistemologically engaging essays in Bioethics in Africa that explore a wide range of bioethical issues. Each of the essays offers rich and authoritative insights into diverse moral issues in biomedicine, research ethics, environment and other crucial aspects of health and medical systems that are deep-rooted in the traditional religious beliefs, cultural practices and lived experiences of the African people.

Guidelines for Choosing a Good Research Topic in Education

Research plays prominent roles in the lives of individuals, organizations, or society in general. Every now and then, research breaks new grounds which help to bring about development and progress in every field of human endeavor. Effective research activities and efforts begin with choosing good research topics. This paper addresses the guidelines that will make for choosing good topics in education. The meaning, characteristic, types of research, the research process and ethical issues in research were also considered. The paper posited that identifying a problem, understanding the magnitude and dimension of the problem, feasibility, acceptability, etc. should be considered in choosing research topics.

Should end-of-life patients be enrolled as participants in clinical research? A best-fit framework synthesis.

To identify and appraise evidence about ethical concerns regarding conducting medical research with end-of-life patients. A best-fit framework synthesis of the literature regarding ethical issues in research involving adult patients at the end of life was conducted. Five databases were searched (Cumulative Index to Nursing and Allied Health Literature, Web of Science, Embase, MEDLINE, and PsychINFO) between January 2000-August 2019. Data were synthesized and categorized according to the moral positions described by Foster. In all, 18 papers that met the inclusion criteria were included in this review. These papers provided rich knowledge not only about various ethical objections to researching the end of life but also about the social, moral, and clinical requirements to perform rigorous studies on clinical interventions in this field. Research on people at end of life is not an unsolvable ethical dilemma between providing the best possible care and enhancing new therapies. It is important to find a balance between the moral duties of providing care and achieving research outcomes that are rigorous and meaningful for service users. Research ethics committees can be challenged by the evaluation of human research. This review provides up-to-date evidence on key challenges and ethical considerations about researching with end-of-life patients. This study is a review of relevant evidence and key ethical challenges and issues around palliative and end-of-life research. Our findings provided important recommendations for clinicians, research, and ethics committee members when evaluating clinical research with people at their end of life.

O‘ZBEKISTONDA ILMIY TADQIQOT ETIKASI

Uzbekistan pays great attention to the development of science, education and the digital economy. In this regard, it is important to consider the issues of Research Ethics (RE), which is an essential constituent of ethics itself. The ethics of scientific research is not only an administrative set of rules but also a set of ethical principles and concepts that are followed by scientists to ensure the development of science. The article discusses the importance and necessity of research ethics for higher education institutions, research institutes and researchers in Uzbekistan. The responsibilities of the Research Ethics Committee and the basic principles of research ethics have been discussed. Recommendations to be implemented at the initial stages of research ethics development were proposed

Ethical issues in research with late-arriving and unaccompanied immigrant youth.

Ethical issues in research with late-arriving and unaccompanied immigrant youth.

Exploring the ethical issues in research using digital data collection strategies with minors: A scoping review.

While emerging digital health technologies offer researchers new avenues to collect real-time data, little is known about current ethical dimensions, considerations, and challenges that are associated with conducting digital data collection in research with minors. As such, this paper reports the findings of a scoping review which explored existing literature to canvass current ethical issues that arise when using digital data collection in research with minors. Scholarly literature was searched using electronic academic databases for articles that provided explicit ethical analysis or presented empirical research that directly addressed ethical issues related to digital data collection used in research with minors. After screening 1,156 titles and abstracts, and reviewing 73 full-text articles, 20 articles were included in this review. Themes which emerged across the reviewed literature included: consent, data handling, minors’ data rights, observing behaviors that may result in risk of harm to participants or others, private versus public conceptualizations of data generated through social media, and gatekeeping. Our findings indicate a degree of uncertainty which invariably exists with regards to the ethics of research that involves minors and digital technology. The reviewed literature suggests that this uncertainty can often lead to the preclusion of minors from otherwise important lines of research inquiry. While uncertainty warrants ethical consideration, increased ethical scrutiny and restricting the conduct of such research raises its own ethical challenges. We conclude by discussing and recommending the ethical merits of co-producing ethical practice between researchers and minors as a mechanism to proceed with such research while addressing concerns around uncertainty.

Researching with children using Skype interviews and drawings: Methodological and ethical issues explored

This article explores methodological and ethical issues of researching with children, drawing on a project exploring children’s perceptions of having a mother studying in Higher Education. While most prior research concentrates on a mother’s view of her children, this article uniquely focuses on children’s views on their mother. From analysis of the data and reflections on the research experience, the following themes emerged, the benefits and challenges of using drawing or Skype as a research method and ethical issues when working with children. Reflecting a view of children as competent and knowledgeable participants within research, I argue that children should be given opportunities to discuss a range of topics that concern them and advocate doing research ‘with’ rather than ‘on’ children. Throughout this article, the children’s and mothers’ voices are interjected to provide a narrative offering insights into family life from a child’s perspective thus revealing the impact of this research on the mother.

« Quels enjeux de nature éthique l’épidémie de COVID 19 a-t-elle soulevé ? »

L’épidémie de COVID-19 a mis en lumière ou révélé de véritables questions de nature éthique, révélatrices des limites du savoir, des limites de la vie, des limites de notre système de santé, des limites de notre société. S’interroger sur ces limites et donc sur ces questionnements de nature éthique peut être intéressant pour faire progresser notre système de santé, notre société. Nous faisons le choix dans cet article d’aborder quelques questionnements éthiques en ce qui concerne plus particulièrement la fonction du soin, le rapport à la mort, le rapport à l’incertitude, les questions plus en rapport avec les mesures de confinement qu’avec la COVID à proprement parler et enfin un questionnement plus politique sur ce que cette épidémie révèle de la fragilité de nos sociétés, de nos économies. Nous mettons de côté arbitrairement, compte-tenu du format contraint de l’article, certaines questions pourtant extrêmement importantes comme les questions relatives à l’éthique de la recherche, les questions relatives à la notion de sélection ou de tri des malades, des questions liées à l’éthique de la gestion de la pénurie, et enfin des questions liées au traçage des personnes contacts ou malades.

Setting focus on oncology in a German undergraduate medical training program: Our experience with a longitudinal elective Interdisciplinary Oncology.

11034 Background: Compared to other academic disciplines such as social sciences and humanities, medical school curricula leave limited opportunities to meet individual interests of students. Methods: To allow students to set an individual focus in their MD education, and to promote a sound scientific basis, n = 11 longitudinal electives (“tracks”) were introduced within the Heidelberg Curriculum Medicinale (HeiCuMed) in 2017. The volume of additional training consists of 2 weekly lectures hours for at least 1.5 years of training. Participation in the program has been on a voluntary basis until 2019 and now is obligatory for every student. Results: n = 141 students are currently enrolled within the track “Interdisciplinary Oncology (IO)”. More than n = 50 optional courses are offered each semester covering oncologic subjects such as scientific methods in cancer research, ethical issues in research and clinical practice, communication and clinical skills training. The modular system of the IO elective allows for a wide selection of topics for participating students but also poses a challenge for graded assessments. Conclusions: Conducting a modular elective including graded assessments is feasible. The longitudinal track IO has a high voluntary participation rate and very positive feedback from students. This indicates that our teaching concept is very well suited to address the call for increased choice and specialization in medical curricula in Germany.

Conducting operational research in humanitarian settings: is there a shared path for humanitarians, national public health authorities and academics?

In humanitarian contexts, it is a difficult and multi-faceted task to enlist academics, humanitarian actors and health authorities in a collaborative research effort. The lack of research in such settings has been widely described in the past decade, but few have analysed the challenges in building strong and balanced research partnerships. The major issues include considering operational priorities, ethical imperatives and power differentials. This paper analyses in two steps a collaborative empirical endeavour to assess health service utilization by Syrian refugee and Lebanese women undertaken by the International Committee of the Red Cross (ICRC), the Lebanese Ministry of Public Health (MoPH) and the Harvard François-Xavier Bagnoud (FXB) Center.First, based on challenges documented in the literature, we shed light on how we negotiated appropriate research questions, methodologies, bias analyses, resource availability, population specificities, security, logistics, funding, ethical issues and organizational cultures throughout the partnership.Second, we describe how the negotiations required each partner to go outside their comfort zones. For the academics, the drivers to engage included the intellectual value of the collaboration, the readiness of the operational partners to conduct an empirical investigation and the possibility that such work might lead to a better understanding in public health terms of how the response met population needs. For actors responding to the humanitarian crisis (the ICRC and the MOPH), participating in a technical collaboration permitted methodological issues to be worked through in the context of deliberations within the wider epistemic community.We find that when they collaborate, academics, humanitarian actors and health authorities deploy their respective complementarities to build a more comprehensive approach. Barriers such as the lack of uptake of research results or weak links to the existing literature were overcome by giving space to define research questions and develop a longer-term collaboration involving individual and institutional learning. There is the need ahead of time to create balanced decision-making mechanisms, allow for relative financial autonomy, and define organizational responsibilities. Ultimately, mutual respect, trust and the recognition of each other’s expertise formed the basis of an initiative that served to better understand populations affected by conflict and meet their needs.

Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice

BackgroundPartnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues.MethodsWe conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed.ResultsWe have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics.ConclusionsWe have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.

Editorial

In this issue of Learning and Teaching: The International Journal of Higher Education in the Social Sciences, authors from Denmark, Jamaica, the United States, the Netherlands and the United Kingdom analyse measures to encourage students to change their educational expectations and complete their degrees earlier; the experience of inclusive pedagogy on a doctoral programme; the impact of new managerial practices on the teaching of qualitative research; the positive effects of using the online platform Socrative to involve less confident students and stimulate discussion; and a game that reinforces students’ understanding of important issues in research ethics.

Effect of educational intervention on knowledge and attitude towards research, research ethics, and biobanks among paramedical and administrative teams in the National Liver Institute, Egypt

BackgroundMedical research has increased greatly in many developing countries during the recent decade, motivated by the need to improve health in these countries. Such research needs to be guided by fundamental ethical principles to ensure the protection of patient’s rights and welfare. Also, biobanks have become increasingly important for the study of health and disease. There is a significant public interest in the outcomes of genetic research, which include diagnostic, therapeutic, and preventive health methods. This study was conducted assess and raise the knowledge and attitude towards several aspects of research, related ethics, and biobank ethical issues for paramedical and administrative teams working at the National Liver Institute (NLI).ResultsThe education intervention study was effective in increasing percentage of good knowledge in paramedical and administrative teams (p value < 0.001). Also, the education intervention study was effective in increasing percentage of positive attitude in paramedical and administrative teams (p value < 0.001).ConclusionThere were good knowledge and attitude about research and related ethics, but poor knowledge and attitude about biobanking. The educational intervention study significantly increased knowledge and attitude about research, related ethics, and biobanks.

Habiliter l’ergothérapeute-chercheur à résoudre les enjeux éthiques de la recherche

La recherche est une occupation propice à l’émergence d’enjeux éthiques, en outre parce qu’elle est liée à des conflits d’intérêts parfois difficiles à gérer et se réalise dans un contexte hautement compétitif qui valorise la performance. Alors que les enjeux éthiques de la pratique clinique de l’ergothérapie commencent à être documentés, les enjeux éthiques vécus par les chercheurs en ergothérapie et les moyens qu’ils utilisent pour gérer ces enjeux ne sont quasiment pas documentés. Cet article présente les résultats d’une étude qualitative qui a documenté les moyens (macro, méso et micro) qui sont proposés par des ergothérapeutes-chercheurs pour résoudre les enjeux éthiques de la recherche. Onze ergothérapeutes (n=11) ont participé à la recherche et partagent les moyens qu’ils utilisent ou envisagent pour gérer les enjeux éthiques de la recherche qu’ils vivent comme chercheur. Les moyens proposés par les ergothérapeutes rejoignent plusieurs moyens suggérés dans les écrits, quoique certains moyens proposés dans les écrits relatifs à la relation à établir avec les participants de recherche soient peu abordés par les participants, ce qui est surprenant compte tenu des valeurs humanistes au fondement de la profession d’ergothérapeute. Au final, cet article qui présente une synthèse à la fois des moyens répertoriés dans des écrits pour résoudre les enjeux éthiques de la recherche et ceux discutés par les participants vise à habiliter l’ergothérapeute-chercheur à résoudre les enjeux que pose la recherche académique tout en restant fidèle aux valeurs de la profession.

Ethical Issues in Research and Development of Epigenome-wide Technologies.

To date, few scholarly discussions on ethical implications of epigenetics and epigenomics technologies have focused on the current phase of research and development, in which researchers are confronted with real and practical ethical dilemmas. In this article, a responsible research and innovation approach, using interviews and an expert meeting, is applied to a case of epigenomic test development for cervical cancer screening. This article provides an overview of ethical issues presently facing epigenomics researchers and test developers, and discusses 3 sets of issues in depth: (1) informed consent; (2) communication with donors and/or research participants, and (3) privacy and publication of data and research results. Although these issues are familiar to research ethics, some aspects are new and most require reinterpretation in the context of epigenomics technologies. With this article, we aim to start a discussion of the practical ethical issues rising in research and development of epigenomic technologies and to offer guidance for researchers working in the field of epigenetic and epigenomic technology.

To Bridge Sustainability Research, Primary Education, and Creativity

The aim of this research paper is to gain insight into pupils’ conceptualization of their future within the wider theoretical framework of Transition Pathways and Management (TPM). Background: It stands in a row of papers about “Visioning Futures” and related potential measures to be taken regarding today’s design of (continuing) education. For the first time in futurology, the group of interest was at ages between seven and nine. The reason why, could be traced back to the United Nations (UN) Sustainable Development Goal (SDG) regarding intergenerational equity and related issues, e.g., governance deficits as well as implementation challenges. Methods: 73 Swiss pupils at ages between seven and nine were asked to draw a picture about their future visions, fraught with problems, as may be the case. Secondly, this paper applied—as a quite rare but creative research methodology—“Storytelling” (ST). Results: This led to 73 recorded explanations, or to be precise, stories, about the content, aim, meaning, etc., of the drawings and how they relate to potential transitions as well as corresponding implications for the private and public sector. Above all, this research inspired pupils’ confidence of conveyed interest in their awareness and future visions. Conclusions: This research shows links between sustainability related research, education, ST as SDG implementation facilitator by fostering entrepreneurial skills, decision making in early ages—for the benefit of next generations, thus, the survival of human mankind. 1.the identification of best practice educational trends; 2.sustainability, social, economic and ecologic responsibility; 3.creativity as potential key success factor; awareness of ethical issues in research and education, etc.

Reflections on the Point of No Return: Participant Observation as an “Antimethod” in the Study of а Migrant Community

Ethical issues in anthropology have been a key concern for a long time. However, approachesto professional and, specifically, research ethics in Russia and the West differ dramatically. There are no Code of Ethics and ethics committees or review boards in Russia. Meanwhile, in the West researchers constantly reflect on and discuss issues of research ethics; one of such issues is about relationship boundaries and friendships between researchers and their informants. In these field notes I examine how the method of participant observation shapes the relationship between the anthropologist and the people they study. Is there “soft” field research, or does participant observation by definition result in a harsh penetration into informants’ lives? My participation in the project “The Use and Creation by Migrants of the Urban Infrastructure of Siberian Regional Capitals” allowed me to take a fresh look at the role of the researcher in the process of studying labor migrants.Participant observation as a research method destroys the initial researcher-subject dichotomy. On the one hand, this is this method’s main advantage. On the other hand, this can lead to an ethical impasse for the researcher. In addition to social and economic insecurities, migrants experience hardships caused by leaving their home—not just their home country, but also familiar everyday life: people, places, things, feelings. They look for ways to find emotional substitutions in their relationship with the researcher— me in this case, calling me “friend” and “brother” and sharing with me intimate information that is beyond the scope of my research topic. Text in Russian DOI: 10.25285/2078-1938-2020-12-1-183-194

Resisting ethics over-regulation in research into sexuality and relationships education: insights from an Australian study

Complaints by educational researchers about problems with the human research ethics review process are not new. In this paper, we add to the growing body of literature critiquing contemporary ethics review processes. We outline the nature and extent of scrutiny our sexuality and relationships research project was subjected to during a drawn-out and acrimonious process of over-regulation by several ethics review panels. We provide concrete details of two ‘ethics exchanges’ that show how compromised the review process can become when ethics review ‘guidelines’ are interpreted, promoted and applied as universalised and invariant principles of ethical practice. We argue that these problems arise because ethics review boards (1) over-emphasise the vulnerability of young research participants and make exaggerated assessments of risk, (2) evaluate all research from a biomedical perspective that discounts research approaches that are based on different epistemologies, and (3) use bureaucratic and adversarial ways to resolve contested research ethics issues. The paper concludes with a call for ethics review boards to recognise and accept methodological diversity and plurality, and to acknowledge the inevitability and desirability of making in situ ethical decisions while using participatory methods in educational research.