Balancing Risk and Benefit

2014 ◽  
pp. 366-401
Author(s):  
Rachel Glennerster ◽  
Shawn Powers
Keyword(s):  
Informed Consent ◽  
Ethical Issues ◽  
Ethical Framework ◽  
Respect For Persons ◽  
Ethical Challenges ◽  
Research Subjects ◽  
Data Confidentiality ◽  
Ethical Guidelines ◽  
Antipoverty Programs ◽  
Risk And Benefit

The increasing use of randomized evaluations in economics has brought an increase in discussion about ethical issues. We argue that while there are ethical issues specific to randomization, most important ethical challenges are not unique to this methodology. The rise in direct researcher involvement with antipoverty programs that has accompanied the rise in randomized evaluations has made ethics issues more salient and raised complex regulatory questions. Though the principles of respect for persons, justice, and beneficence outlined by the 1978 Belmont Report continue to provide a useful ethical framework, we note a number of challenging tradeoffs in applying them including those around data confidentiality, informed consent, and misleading research subjects. We conclude by discussing how ethical guidelines are applied in practice, noting a number of gaps, ambiguities, and areas where we believe practice is diverging from the underlying principles. These issues apply with equal force to all empirical methodologies.

scholarly journals Stakeholder Requirements for an Ethical Framework to Sustain Multiple Research Projects in an Emerging Living Lab Involving Older Adults

2019 ◽  
Vol 15 (3) ◽  
pp. 111-127
Author(s):  
Tiziana C. Callari ◽  
Louise Moody ◽  
Janet Saunders ◽  
Gill Ward ◽  
Julie Woodley
Keyword(s):  
Older Adults ◽  
Ethical Issues ◽  
Ethical Framework ◽  
User Engagement ◽  
Ethical Challenges ◽  
Design Development ◽  
Structured Interviews ◽  
Ethical Guidelines ◽  
Living Lab ◽  
Research Initiatives

Living Lab (LL) research should follow clear ethical guidelines and principles. While these exist in specific disciplinary contexts, there is a lack of tailored and specific ethical guidelines for the design, development, and implementation of LL projects. As well as the complexity of these dynamic and multi-faceted contexts, the engagement of older adults, and adults with reducing cognitive and physical capacity in LL research, poses additional ethical challenges. Semi-structured interviews were undertaken with 26 participants to understand multistakeholder experiences related to user engagement and related ethical issues in emerging LL research. The participants’ experiences and concerns are reported and translated into an ethical framework to guide future LL research initiatives.

scholarly journals Psychotherapy Ethics in Twentieth-Century Literature

2020 ◽  
Author(s):  
Anna Magdalena Elsner
Keyword(s):  
Twentieth Century ◽  
Informed Consent ◽  
Therapeutic Relationship ◽  
Ethical Issues ◽  
Ethical Dilemmas ◽  
Literary Texts ◽  
Twentieth Century Literature ◽  
Ethical Challenges ◽  
Key Characteristics ◽  
Century Literature

Ethical issues arising in the practice of psychotherapy, such as confidentiality, boundaries in the therapeutic relationship, and informed consent, figure prominently in a range of twentieth-century literary texts that portray psychotherapy. This chapter analyzes the portrayal of these conflicts, but also stresses that they are often marginal to the overall plot structures of these narratives and that literary depictions of psychotherapy are often vague or even inaccurate concerning key characteristics of psychotherapeutic practice. Focusing on examples that either illustrate professionalism and the absence of ethical challenges in psychotherapy, or take up the ethical reservations that fueled anti-Freudianism or the anti-psychiatry movement, the chapter proposes that selected literary depictions of psychotherapy can play a key role in sensitizing therapists to the complex make-up of ethical dilemmas as well as illustrating the cultural and historical contexts of these dilemmas.

The Ethical Challenges of Animal Research

2015 ◽  
Vol 24 (4) ◽  
pp. 391-406 ◽  
Author(s):  
HOPE R. FERDOWSIAN ◽  
JOHN P. GLUCK
Keyword(s):  
England Journal ◽  
Informed Consent ◽  
New England ◽  
Animal Research ◽  
Ethical Challenges ◽  
Research Subjects ◽  
Human Research ◽  
Ethical Justification ◽  
Influential Paper ◽  
Moral Problems

Abstract:In 1966, Henry K. Beecher published an article entitled “Ethics and Clinical Research” in the New England Journal of Medicine, which cited examples of ethically problematic human research. His influential paper drew attention to common moral problems such as inadequate attention to informed consent, risks, and efforts to provide ethical justification. Beecher’s paper provoked significant advancements in human research policies and practices. In this paper, we use an approach modeled after Beecher’s 1966 paper to show that moral problems with animal research are similar to the problems Beecher described for human research. We describe cases that illustrate ethical deficiencies in the conduct of animal research, including inattention to the issue of consent or assent, incomplete surveys of the harms caused by specific protocols, inequitable burdens on research subjects in the absence of benefits to them, and insufficient efforts to provide ethical justification. We provide a set of recommendations to begin to address these deficits.

scholarly journals An Ethical Framework for the Design, Development, Implementation, and Assessment of Drones Used in Public Healthcare

2020 ◽  
Vol 26 (5) ◽  
pp. 2867-2891 ◽  
Author(s):  
Dylan Cawthorne ◽  
Aimee Robbins-van Wynsberghe
Keyword(s):  
Artificial Intelligence ◽  
Ethical Issues ◽  
Applied Ethics ◽  
Human Values ◽  
Ethical Principles ◽  
Ethical Framework ◽  
Public Healthcare ◽  
Social Experiment ◽  
Design Development ◽  
Ethical Guidelines

Abstract The use of drones in public healthcare is suggested as a means to improve efficiency under constrained resources and personnel. This paper begins by framing drones in healthcare as a social experiment where ethical guidelines are needed to protect those impacted while fully realizing the benefits the technology offers. Then we propose an ethical framework to facilitate the design, development, implementation, and assessment of drones used in public healthcare. Given the healthcare context, we structure the framework according to the four bioethics principles: beneficence, non-maleficence, autonomy, and justice, plus a fifth principle from artificial intelligence ethics: explicability. These principles are abstract which makes operationalization a challenge; therefore, we suggest an approach of translation according to a values hierarchy whereby the top-level ethical principles are translated into relevant human values within the domain. The resulting framework is an applied ethics tool that facilitates awareness of relevant ethical issues during the design, development, implementation, and assessment of drones in public healthcare.

Confidentiality in participatory research

2014 ◽  
Vol 23 (4) ◽  
pp. 442-454 ◽  
Author(s):  
Elmira Petrova ◽  
Jan Dewing ◽  
Michelle Camilleri
Keyword(s):  
Research Ethics ◽  
Ethical Issues ◽  
Field Work ◽  
Research Process ◽  
Ethics Committee ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Case Study Methodology ◽  
Research Ethics Committee ◽  
Practice Development

Aim: This article presents key ethical challenges that were encountered when conducting a participatory qualitative research project with a very specific, small group of nurses, in this case with practice development nurses in Malta. Background: With the small number of nurses employed in practice development roles in Malta, there are numerous difficulties of maintaining confidentiality. Poorly constructed interventions by the researcher could have resulted in detrimental effects to research participants and the overall trustworthiness of the research. Generally, ethical guidelines for research exist to reinforce validity of research; however, there is not an established consensus on how these strategies can be utilised in some types of qualitative field work. Research design: The researcher used an exploratory case study methodology. The sample consisted of 10 participants who were interviewed twice using face-to-face interviews, over a period of 2 months. Ethical considerations: The study was ethically reviewed by the University Research Ethics Committee and the Faculty Research Ethics Committee, University of Malta. The participants referred to in this article have been given adequate information about the study and their consent has been obtained. Discussion: Numerous strategies for ensuring confidentiality during recruitment of the participants, during data collection, during transcription and data analysis and during dissemination of research results assisted the researcher in responding to potential and actual ethical issues. Conclusion: This article emphasises the main strategies that can be used to respond to ethical challenges when researching with a small easily identifiable group. The learning discussed here may be relevant to or even transferable to other similar research studies or research contexts. These methods fostered a greater credibility throughout the research process and predisposed the participants to greater trust, and thus, they disclosed their experiences and speak more freely, thus enhancing the quality of the study.

From painful busyness to emotional immunization: Nurses’ experiences of ethical challenges

2016 ◽  
Vol 24 (5) ◽  
pp. 556-568 ◽  
Author(s):  
Anne Storaker ◽  
Dagfinn Nåden ◽  
Berit Sæteren
Keyword(s):  
Data Storage ◽  
Ethical Issues ◽  
Daily Practice ◽  
University Hospital ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Science Data ◽  
Daily Work ◽  
Moral Blindness ◽  
Qualitative Interview Study

Background: The professional values presented in ethical guidelines of the Norwegian Nurses Organisation and International Council of Nurses describe nurses’ professional ethics and the obligations that pertain to good nursing practice. The foundation of all nursing shall be respect for life and the inherent dignity of the individual. Research proposes that nurses lack insight in ethical competence and that ethical issues are rarely discussed on the wards. Furthermore, research has for some time confirmed that nurses experience moral distress in their daily work and that this has become a major problem for the nursing profession. Objectives: The purpose of this article is to obtain a deeper understanding of the ethical challenges that nurses face in daily practice. The chosen research questions are “What ethical challenges do nurses experience in their daily practice?” Research design: We conducted a qualitative interview study using a hermeneutical approach to analyzing data describing nurses’ experiences. Ethical considerations: The Norwegian Social Science Data services approved the study. Furthermore, the head of the hospital gave permission to conduct the investigation. The requirement of anonymity and proper data storage in accordance with the World Medical Association Declaration of Helsinki was met. Method and results: The context for the study comprised three different clinical wards at a university hospital in Norway. Nine qualified nurses were interviewed. The results were obtained through a systematic development beginning with the discovery of busyness as a painful phenomenon that can lead to conflicts in terms of ethical values. Furthermore, the consequences compromising professional principles in nursing care emerged and ended in moral blindness and emotional immunization of the healthcare providers. Emotional immunization occurred as a new dimension involving moral blindness and immunity in relation to being emotionally touched.

scholarly journals Recommendations for the development of Egyptian human biobanking ethical guidelines

2021 ◽  
Vol 6 ◽  
pp. 4
Author(s):  
Ahmed Samir Abdelhafiz ◽  
Calvin W. L. Ho ◽  
Teck Chuan Voo
Keyword(s):  
Informed Consent ◽  
Social Issues ◽  
Legal Framework ◽  
Return Of Results ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Training Requirements ◽  
Ethics Framework ◽  
Key Characteristics ◽  
National Framework

Background: The development of biobanks is associated with the emergence of new ethical challenges. In Egypt, several biobanks have been established, but there are no specific local ethical guidelines to guide their work. The aim of this study is to develop recommendations for the Egyptian human biobanking ethical guidelines, which take into consideration the specific cultural and legal framework in Egypt. Methods: We searched the literature for available biobanking ethical guidelines. Six themes were the concern of search, namely; informed consent, data protection, return of results, sharing of samples and data, community engagement, and stakeholder engagement. If a document refers to another guideline, the new source is identified and the previous step is repeated. Results: Ten documents were identified, which were analyzed for the themes mentioned above. Guidelines and best practices were identified, and then compared with the published documents about ethical, legal and social issues (ELSI) related to biomedical research in Egypt to reach best recommendations. Conclusions: We have proposed, by way of recommendations, key characteristics that a national ethics framework in Egypt could have. On informed consent, the practice of broad consent may be harmonized among biobanks in Egypt. Clear policies on return of research results, training requirements and availability of genetic counseling could also be instituted through the national framework. Additionally, such a framework should facilitate community and stakeholders engagement, which is important to secure trust and build consensus on contentious issues arising from sample and data sharing across borders and commercialization, among other concerns.

scholarly journals Ethics in Psychiatric Research: Issues and Recommendations

2016 ◽  
Vol 3 (4) ◽  
Author(s):  
Altaf Ahmad Malla ◽  
Nasir Mohammad Bhat
Keyword(s):  
Conflict Of Interest ◽  
Ethical Issues ◽  
The Other ◽  
Psychiatric Research ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Research Issues ◽  
Search Terms ◽  
Current Trends ◽  
Medical Disciplines

Psychiatric research has increased remarkably over recent decades to help in understanding the current trends and better therapeutic options for illness. On the other hand, there is also a trend toward higher rates of retraction of published papers in the recent years. Ethics is required to maintain and increase the overall quality and morality of research. Psychiatric research faces several unique ethical challenges. Ethical guidelines are very important tool of research which safeguards participants; however, there is a dearth of such guidelines in India. The present paper aims to review available ethical issues and guidelines pertaining to psychiatric research. A search was conducted on Pubmed using search terms (e.g., “ethics,” “psychiatry,” “research”). Relevant studies were selected for the review after manual screening of title/abstract. Additional sources were referred to using cross references and Google Scholar. Psychiatric research has several important ethical issues which are different from other medical disciplines. These issues are related to informed consent, confidentiality, conflict of interest, therapeutic misconception, placebo related, vulnerability, exploitation, operational challenges, among others. The current paper has made several recommendations to deal with ethical challenges commonly faced in psychiatric research. The ethical guidelines are utmost needed for Indian psychiatric research. Specific guidelines are lacking pertaining to psychiatric research. The issues and recommendations merit a further discussion and consideration.

scholarly journals Becoming and being a biobank donor: The role of relationships and ethics

PLoS ONE ◽  
2020 ◽  
Vol 15 (11) ◽  
pp. e0242828
Author(s):  
Signe Mezinska ◽  
Jekaterina Kaleja ◽  
Ilze Mileiko
Keyword(s):  
Informed Consent ◽  
Ethical Issues ◽  
Family Members ◽  
Research Subjects ◽  
Structured Interviews ◽  
Research Results ◽  
General Data Protection Regulation ◽  
Related Data ◽  
Research Findings

Relational aspects, such as involvement of donor’s relatives or friends in the decision-making on participation in a research biobank, providing relatives’ health data to researchers, or sharing research findings with relatives should be considered when reflecting on ethical aspects of research biobanks. The aim of this paper is to explore what the role of donor’s relatives and friends is in the process of becoming and being a biobank donor and which ethical issues arise in this context. We performed qualitative analysis of 40 qualitative semi-structured interviews with biobank donors and researchers. The results show that relatedness to relatives or other types of close relationships played a significant role in the donors’ motivation to be involved in a biobank, risk-benefit assessment, and decisions on sharing information on research and its results. Interviewees mentioned ethical issues in the context of sharing relatives’ health-related data for research purposes and returning research findings that may affect their relatives. We conclude that the question of what information on family members may be shared with a biobank by research participants without informed consent of those relatives, and when family members become research subjects, lacks a clear answer and detailed guidelines, especially in the context of the introduction of the European Union’s (EU) General Data Protection Regulation. Researchers in Latvia and EU face ethical questions and dilemmas about returning research results and incidental findings to donors’ relatives, and donors need more information on sharing research results with relatives in the informed consent process.

Qualitative research ethics on the spot

2015 ◽  
Vol 23 (4) ◽  
pp. 455-464 ◽  
Author(s):  
Christine Øye ◽  
Nelli Øvre Sørensen ◽  
Stinne Glasdam
Keyword(s):  
Qualitative Research ◽  
Informed Consent ◽  
Research Ethics ◽  
Ethical Issues ◽  
Ethical Dilemmas ◽  
Institutional Review Boards ◽  
Ethical Guidelines ◽  
Ethical Considerations ◽  
Institutional Review ◽  
Review Boards

Background: The increase in medical ethical regulations and bureaucracy handled by institutional review boards and healthcare institutions puts the researchers using qualitative methods in a challenging position. Method: Based on three different cases from three different research studies, the article explores and discusses research ethical dilemmas. Objectives and ethical considerations: First, and especially, the article addresses the challenges for gatekeepers who influence the informant’s decisions to participate in research. Second, the article addresses the challenges in following research ethical guidelines related to informed consent and doing no harm. Third, the article argues for the importance of having research ethical guidelines and review boards to question and discuss the possible ethical dilemmas that occur in qualitative research. Discussion and conclusion: Research ethics must be understood in qualitative research as relational, situational, and emerging. That is, that focus on ethical issues and dilemmas has to be paid attention on the spot and not only at the desktop.

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