Set Of Ethical Issues Research Articles

Repurposing the Ladder

Repurposing the Ladder

The full spectrum of ethical issues in dementia research: findings of a systematic qualitative review

BackgroundWhen including participants with dementia in research, various ethical issues arise. At present, there are only a few existing dementia-specific research guidelines (Committee for Medicinal Products for Human Use in Clinical investigation of medicines for the treatment Alzheimer’s disease (Internet). https://www.ema.europa.eu/en/clinical-investigation-medicines-treatment-alzheimers-disease; Food and Drug Administration, Early Alzheimer’s Disease: Developing Drugs for Treatment Guidance for Industry [Internet]. http://www.fda.gov/regulatory-information/search-fda-guidance-documents/alzheimers-disease-developing-drugs-treatment-guidance-industy), necessitating a more systematic and comprehensive approach to this topic to help researchers and stakeholders address dementia-specific ethical issues in research. A systematic literature review provides information on the ethical issues in dementia-related research and might therefore serve as a basis to improve the ethical conduct of this research. This systematic review aims to provide a broad and unbiased overview of ethical issues in dementia research by reviewing, analysing, and coding the latest literature on the topic.MethodsWe conducted a systematic review in PubMed and Google Scholar (publications in English between 2007 and 2020, no restrictions on the type of publication) of literature on research ethics in dementia research. Ethical issues in research were identified by qualitative text analysis and normative analysis.ResultsThe literature review retrieved 110 references that together mentioned 105 ethical issues in dementia research. This set of ethical issues was structured into a matrix based on the eight major principles from a pre-existing framework on biomedical ethics (Emanuel et al. An Ethical Framework for Biomedical Research. in The Oxford textbook of clinical research ethics, Oxford University Press, Oxford, 2008). Consequently, subcategories were created and further categorized into dementia stages and study phases.ConclusionsThe systematically derived matrix helps raise awareness and understanding of the complex topic of ethical issues in dementia research. The matrix can be used as a basis for researchers, policy makers and other stakeholders when planning, conducting and monitoring research, making decisions on the legal background of the topic, and creating research practice guidelines.

Mind-Reading or Misleading? Assessing Direct-to-Consumer Electroencephalography (EEG) Devices Marketed for Wellness and Their Ethical and Regulatory Implications

The market for direct-to-consumer brain health products—including brain-training games, neurostimulation devices, and consumer electroencephalography (EEG) devices—is expected to top $3 billion by 2020. While many direct-to-consumer neurotechnology products have come under scrutiny from scientists and regulators, one set of products—consumer EEG devices—have largely escaped scholarly and regulatory critique. While these products do not present overt safety risks, by claiming to provide individuals with “snapshots” of their own mental states, they present a subtle, and arguably more complex, set of ethical issues. In addition, consumer EEG companies often explicitly or implicitly rely on studies conducted in the field of neurofeedback, a domain in which almost all adequately controlled studies point to little more than an interesting placebo effect. This paper presents an initial critique of consumer EEG devices, focusing only on devices that are marketed directly to consumers for improving their well-being. We categorize the behavioral and wellness-related marketing claims made by consumer EEG companies, analyze the evidence base for such claims, and argue that the ethical and legal issues wrought by these devices deserve greater attention.

Death, Devices, and Double Effect.

Along with the growing utilization of the total artificial heart (TAH) comes a new set of ethical issues that have, surprisingly, received little attention in the literature: (1) How does one apply the criteria of irreversible cessation of circulatory function (a core concept in the Uniformed Determination of Death Act) given that a TAH rarely stops functioning on its own? (2) Can one appeal to the doctrine of double effect as an ethical rationale for turning off a TAH given that this action directly results in death? And, (3) On what ethical grounds can a physician turn off a TAH in view of the fact that either the intent of such an action or the outcome is always, and necessarily, death? The aim of this article is not to answer these questions but to highlight why these questions must be explored in some depth given the growing use of TAH technology.

Twelve tips to avoid ethical pitfalls when recruiting students as subjects in medical education research

Medical education research has unique characteristics that raise their own set of ethical issues, which differ significantly from those commonly found in clinical research. In contexts where researchers have a dual role as teachers, free consent to participate in research may be undermined and students’ data must be kept confidential from faculty who play any role in their academic or professional path. Faculty members who recruit students as research subjects within their institution for education research should pay particular attention to ensure students’ consent to participate is indeed free and continuous and that their privacy is adequately protected. A good understanding of ethical standards and of the appropriate strategies to fulfill them is essential to conduct ethical medical education research and to ensure ethics approval is obtained. These twelve tips draw from the Declaration of Helsinki, from the ICMJE recommendations and from the example of their application to medical education research in a Canadian and North American context. They aim to act as a reminder and as a guide to address the main ethical issues which should be given proper consideration when designing a study involving students as subjects for medical education research.

“My Whole Life is Ethics!” Ordinary Ethics and Gene Therapy Clinical Trials

ABSTRACTWhat and where is ethics in gene therapy? Historical debates have identified a set of ethical issues with the field, and current regulatory systems presume a discrete ethics that can be achieved or protected. Resisting attempts at demarcation or resolution, we use the notions of “ordinary” or “everyday” ethics to develop a better understanding of the complexities of experimental gene therapy for patients, families, and practitioners and create richer imaginings of ethics in the gene therapy sphere. Drawing on ethnographic research in several clinical trials, we show that patients/parents can acquire some control in difficult medical situations, and practitioners can attune their care to their patients’ needs. The human provenance of gene therapy practice, and the irreducible sociality of ethics, means that understanding the ethics of this medical field also requires understanding the everyday worlds and relationships of those at its heart.

The Full Spectrum of Clinical Ethical Issues in Kidney Failure. Findings of a Systematic Qualitative Review.

BackgroundWhen treating patients with kidney failure, unavoidable ethical issues often arise. Current clinical practice guidelines some of them, but lack comprehensive information about the full range of relevant ethical issues in kidney failure. A systematic literature review of such ethical issues supports medical professionalism in nephrology, and offers a solid evidential base for efforts that aim to improve ethical conduct in health care.AimTo identify the full spectrum of clinical ethical issues that can arise for patients with kidney failure in a systematic and transparent manner.MethodA systematic review in Medline (publications in English or German between 2000 and 2014) and Google Books (with no restrictions) was conducted. Ethical issues were identified by qualitative text analysis and normative analysis.ResultsThe literature review retrieved 106 references that together mentioned 27 ethical issues in clinical care of kidney failure. This set of ethical issues was structured into a matrix consisting of seven major categories and further first and second-order categories.ConclusionsThe systematically-derived matrix helps raise awareness and understanding of the complexity of ethical issues in kidney failure. It can be used to identify ethical issues that should be addressed in specific training programs for clinicians, clinical practice guidelines, or other types of policies dealing with kidney failure.

HIV/AIDS among Brazil’s Prison Populations: Significant Political, Public Health, And Human Rights Implications for Failing to Provide Prisoners with Adequate Care

There are significant ethical, public health, and human rights implications for failing to provide detainees and prisoners with adequate safety and health care, particularly with regard to infectious diseases such as HIV and AIDS. In other words, there is an ethical obligation to earmark resources, even when scarce, toward the study and care of prisoners. At the same time, however, how disease surveillance and treatment are carried out in this population—especially with regard to infectious diseases associated with stigmatized or illegal behaviors—raises a different set of ethical issues: For example, obtaining an accurate picture of disease prevalence and incidence rates in prisons as well as effectively treating prisoners may place prisoners at increased risk of physical and legal harms. Thus, both failing to advocate for the incarcerated as well as advocating in a poorly considered way are cause for concern. Additionally, misleading metaphors surrounding prisons and penal systems and the marginalization of prisoners and certain socioeconomic classes lead to a perpetuation of diseases such as HIV and AIDS throughout societies in general. Brazil provides a telling example in that, despite the fact that it has one of the most innovative and proactive HIV/AIDS programs in the world and its Constitution frames health care as a right of all, its imprisoned populations, like those in other countries, shoulder the double burden of being both from lower socioeconomic classes with limited access to resources and at markedly higher risk of contracting HIV than those in the general population. Appropriate solutions will require political, institutional, and cultural changes that assure equitable access to medical care, avenues for real rehabilitation, and safe environments within and beyond prison walls, as well as actions to reduce legal prohibitions against drug use, destigmatize sexual behaviors, and resolve entrenched social inequities.

Regenerative Medicine Interventions for Orthopedic Disorders: Ethical Issues in the Translation into Patients

Regenerative medicine (RM) technologies, such as cell therapy, gene transfer and tissue engineering, are expected to move the field of orthopedics into a new era. Now that more and more attempts are underway to translate preclinical research into clinical studies, it is time to proactively discuss the ethical issues associated with first-in-human applications of RM interventions for musculoskeletal disorders. The design and launch of early clinical trials will be ethically challenging due to the specific features of RM in general, and the application for musculoskeletal disorders specifically. In this paper, we identify three sets of ethical issues that need to be addressed when considering initiating early clinical trials: assessment of risks and benefits; designing a study in terms of outcome measures and comparators; and participant selection. These issues are particularly emphasized in RM research that aims to apply these approaches in an early stage of degenerative musculoskeletal disorders.

Negotiating human research ethics: Case notes from anthropologists in the field (Respond to this article at http://www.therai.org.uk/at/debate)

The human ethics issues surrounding the conduct of health science research have been the subject of increasing debate among biomedical and social science researchers in recent years. Ethics procedures in health‐science research are typically concerned with protecting anonymity and confidentiality, and are tailored to work that primarily uses quantitative methodologies. For qualitative research in the health social sciences, a different set of ethical issues often arises in the research process. This article examines three case studies of qualitative researchers working with Indigenous Australian communities, focusing on the researchers’ experiences with ethics committees and how they approached a range of ethical issues arising in the course of their research. Key issues include: obtaining informed consent for participant observation; the evolving nature of qualitative research; the difficulties in foreseeing changes in approach; and the distinction between the research team and the researched in participatory action research.

Ethical Dilemmas in Evaluations Using Indigenous Research Workers

This article addresses ethical dilemmas experienced by street-level research and evaluation workers recruiting and gathering data in community-based research projects. The authors focus on a subgroup of street-level research workers, whom they call research extenders (REs), employed because they share important characteristics with the target population. Like other street-level research workers, some REs are single role (only do research work) and others are dual role (do research work and provide services). They discuss relevant literature and findings from pilot focus groups exploring how REs understand responsible ethical conduct in their research work in the community. REs face ethical issues somewhat different from those of more traditional, non-indigenous street-level research workers. These issues increase social risk for study participants and could compromise the validity of data. Researchers need to be aware of and address the distinctive set of ethical issues raised by research and evaluation projects employing indigenous, street-level research workers.

Trial Design and Informed Consent for a Clinic-Based Study With a Treatment as Usual Control Arm

Employing the National Institute of Mental Health-funded Prevention of Suicide in Primary Care Elderly Collaborative Trial as a case study, we discuss 2 sets of ethical issues: obtaining informed consent for a clinic-based intervention study and using treatment as usual (TAU) as the control condition. We then address these ethical issues in the context of the debate about the quality improvement efforts of health care organizations. Our analysis reveals the tension between ethics and scientific integrity involved with using TAU as a control condition and the difficulty in designing high-quality research in a community-based setting.

Ethical Concerns in International Business: Are Some Issues More Important than Others?

F irms expanding into international business have had to contend with ethical and social dilemmas brought on by differences in economic conditions, cultural values, and competitive variables. In recent years, as economic activities have become more globally integrated, concern has been expressed over ethical practices in various countries and the role of multinational firms in making profits through conduct considered inappropriate. Thanks to the activism of nongovernmental organizations (NGOs) and advancements in communication such as television, telephone, and the World Wide Web, the general public, especially in advanced industrial countries such as the United States, are now aware and conscious of economic, social, and political conditions elsewhere in the world. In this article we ascertain and rank the U.S. public’s concern over a set of ethical issues in international business.

A responsibility ethics for audit expert systems

To effectively pursue ethical action, the business community must recognize that the fundamental form of human association is not the "social contract" into which persons enter as atomic individuals, making partial commitments to each other for the purpose of gaining limited common ends or of satisfying certain laws. The fundamental form of human association is rather the face to face community in which ongoing commitments are the rule and in which aspects of every individual's experience are conditioned by the continuing membership. The following discussion initiates a preliminary phase in the consideration of what constitutes ethical issues associated with the business applications of expert systems. The focus is on knowledge based expert system applications in public accounting, specifically in the audit domain. Prior research on the development and use of expert systems in auditing has focused on a limited set of ethical issues. Niebuhr's theory of the "the responsible self" is used here to broaden the scope of what constitutes an ethical issue and provides a framework for identifying responsible action. Within this framework, an action is responsible if it takes into consideration ongoing relationships among the stakeholder groups affected. Actions prior to the development of the system along with the potential consequences for the system must be considered. The discursive requirements that provide the context and conditions necessary for implementing the proposed theoretical framework are presented and an illustration of how the responsibility ethic can be implemented in the audit expert system domain is developed.

The Heroic Response to Terror: The Case of Oklahoma City

The deadliest incident of domestic terrorism in the U.S. has special significance for human resource management because the target was government employees. Sixty percent of the 168 fatalities and 40 percent of the 647 injured were federal and state government employees in Oklahoma City. Words and numbers inadequately depict the tragic human toll of this unnatural disaster and its intense effect on many lives; the human costs are still emerging. The Authors examine two sets of ethical issues in human resource management that arose during the extended, dangerous, and frustrating rescue operation in which thousands of emergency rescue workers, medical and public safety personnel, city employees, community organizations, and many others participated. First, ethical issues emerged from the tension between the concepts of responders' heroism and their professionalism, including the duty of competence. For some, the aftermath of their experience is marked by signs of stress, which is insufficiently addressed by federal programs. Second, early in the rescue, core ethical values clashed in a profound ethical dilemma in which disinterested expertise serving the public interest vied with urgent, individual need. Because courageous response to the latter meant disregarding standard emergency rescue procedure but was rewarded with the highest organizational honor, emergency personnel are left with ambiguous operational and ethical guidelines. The Authors conclude that a sense of proportion about human achievement in extraordinary circumstances encourages realistic views about routine professional capacities, allows for normal human frailties, and thereby contributes to a supportive work environment.

Ethical issues in conducting evaluation in international settings

AbstractThere has been little discussion in evaluation literature in the United States of ethical issues in conducting evaluation in international settings. Although many of the same ethical issues arise wherever the evaluation is conducted, two sets of ethical issues that are particularly important in developing countries concern how stakeholders should be involved and to what extent the evaluator should respect local customs and values.

Consumer Segments and Perceptions of Retail Ethics

Using Levy and Dubinsky’s (1983) scale as the framework, telephone respondents provided information concerning the relative severity and frequency of occurrence of ethical issues in the general retail environment. Results suggest two factors may be derived from the original set of items, Fairness and Honesty. Analysis identifies a younger-aged cluster who perceive higher frequency of unethical situations, and a cluster of lesser-educated individuals who place a higher level of severity on fairness. Implications reflect the need for managers and researchers to refine the set of ethical issues used for segment identification and to identify those critical issues that differentiate consumer responses and purchasing behaviors.

The Geography of Children: Some ethical and methodological considerations for project and dissertation work

With the 'cultural turn' in geography children have been positioned on the geographical agenda. There is an evident and growing interest amongst undergraduates in the geography of children as a topic for project work and dissertation study. This seems an appropriate time to consider a series of related ethical and methodological issues which are important when working with children. The paper is organised into four parts. First, discussion focuses on the background which has given rise to a growing expectation that social (geographical) investigation should be with children rather than on or for children. These ideas are presented in order to encourage students and their supervisors to think about their work from the perspective of children. Second, a set of ethical issues to do with working with children are discussed. Third, examples of good methodological practice when working with children are presented. Lastly, a range of provocative issues to do with geographers studying children are examined. Throughout the paper, the emphasis is upon how recent changes in human (cultural) geography inform the way in which we get (or expect) students to work.

Ethical Issues in Umbilical Cord Blood Banking

Objective. —Banking umbilical cord blood (UCB) to be used as a source of stem cells for transplantation is associated with a set of ethical issues. An examination of these issues is needed to inform public policy and to raise the awareness of prospective parents, clinicians, and investigators. Participants. —Individuals with expertise in anthropology, blood banking, bone marrow transplantation, ethics, law, obstetrics, pediatrics, and the social sciences were invited to join the Working Group on Ethical Issues in Umbilical Cord Blood Banking. Evidence. —Members were assigned topics to present to the Working Group. Following independent reviews, background materials were sent to the Working Group. Consensus Process. —Individual presentations of topics at a 2-day meeting were followed by extensive group discussions in which consensus emerged. A writing committee then drafted a document that was circulated to the entire Working Group. After 3 rounds of comments over several months, all but 1 member of the Working Group agreed with the presentation of our conclusions. Conclusions. —(1) Umbilical cord blood technology is promising although it has several investigational aspects; (2) during this investigational phase, secure linkage should be maintained of stored UCB to the identity of the donor; (3) UCB banking for autologous use is associated with even greater uncertainty than banking for allogeneic use; (4) marketing practices for UCB banking in the private sector need close attention; (5) more data are needed to ensure that recruitment for banking and use of UCB are equitable; and (6) the process of obtaining informed consent for collection of UCB should begin before labor and delivery.

Ethical Issues in Umbilical Cord Blood Banking

Banking umbilical cord blood (UCB) to be used as a source of stem cells for transplantation is associated with a set of ethical issues. An examination of these issues is needed to inform public policy and to raise the awareness of prospective parents, clinicians, and investigators.Individuals with expertise in anthropology, blood banking, bone marrow transplantation, ethics, law, obstetrics, pediatrics, and the social sciences were invited to join the Working Group on Ethical Issues in Umbilical Cord Blood Banking.Members were assigned topics to present to the Working Group. Following independent reviews, background materials were sent to the Working Group.Individual presentations of topics at a 2-day meeting were followed by extensive group discussions in which consensus emerged. A writing committee then drafted a document that was circulated to the entire Working Group. After 3 rounds of comments over several months, all but 1 member of the Working Group agreed with the presentation of our conclusions.(1) Umbilical cord blood technology is promising although it has several investigational aspects; (2) during this investigational phase, secure linkage should be maintained of stored UCB to the identity of the donor; (3) UCB banking for autologous use is associated with even greater uncertainty than banking for allogeneic use; (4) marketing practices for UCB banking in the private sector need close attention; (5) more data are needed to ensure that recruitment for banking and use of UCB are equitable; and (6) the process of obtaining informed consent for collection of UCB should begin before labor and delivery.