Congenitally decorticate children’s potential and rights

2020 ◽  
pp. medethics-2020-106163
Author(s):  
Anna-Karin Margareta Andersson
Keyword(s):  
Cerebral Cortex ◽  
Social Environment ◽  
Conceptual Analysis ◽  
Empirical Studies ◽  
Well Being ◽  
Ethical Analysis ◽  
Ethical Challenges ◽  
Ethical Implications ◽  
Normative Framework ◽  
Gradual Approach

This article is the first indepth ethical analysis of empirical studies that support the claim that children born without major parts of their cerebral cortex are capable of conscious experiences and have a rudimentary capacity for agency. Congenitally decorticate children have commonly been classified as persistently vegetative, with serious consequences for their well-being and opportunities to flourish. The paper begins with an explication of the rights-based normative framework of the argument, including conceptual analysis of the terms ‘agency’, ‘potentiality for agency’ and ‘gradual approach of agency’. It critically examines Alan Gewirth’s account of the criteria for being a rights bearer and principles for settling rights conflicts between agents and potential agents. It then applies the rights-based normative framework to the ethical challenges associated with care for congenitally decorticate children. It argues that recent empirical studies support the claim that the concepts ‘potential for agency’ and ‘capacity for rudimentary agency’ apply to children who are born without major parts of their cerebral cortex. The article finally discusses important medical ethical implications of these results. It specifically focuses on congenitally decorticate children’s preparatory rights to a stimulating intellectual and social environment.

The History and Ethics of the Therapeutic Relationship

2020 ◽  
Author(s):  
Ulrich Koch ◽  
Kelso Cratsley
Keyword(s):  
Clinical Practice ◽  
Therapeutic Relationship ◽  
Ethical Analysis ◽  
Ethical Challenges ◽  
Ethical Implications ◽  
Relational Practices ◽  
Societal Influences

This chapter reviews past and present debates about the therapeutic relationship in order to draw out the ethical implications of relational practices in psychotherapy. The therapeutic relationship has been understood differently across psychotherapeutic approaches, with each tradition responding to the attendant ethical challenges in distinctive ways. Aside from practitioners’ theoretical and practical commitments, the therapeutic relationship has also been, and continues to be, shaped by broader societal influences. The chapter discusses the shifting ethical implications of relational practices, then, as situated in their theoretical and historical contexts. The historical variability of concerns raised by the therapeutic relationship requires continued ethical analysis in order to confront the diversity and complexity of contemporary clinical practice.

Spirituality as an ethical challenge in Indian palliative care: A systematic review

2015 ◽  
Vol 14 (5) ◽  
pp. 561-582 ◽  
Author(s):  
Joris Gielen ◽  
Sushma Bhatnagar ◽  
Santosh K. Chaturvedi
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Content Analysis ◽  
Spiritual Care ◽  
Data Extraction ◽  
Empirical Studies ◽  
Well Being ◽  
Three Dimensions ◽  
Ethical Challenge ◽  
Ethical Implications

AbstractObjective:Spiritual care is recognized as an essential component of palliative care (PC). However, patients' experience of spirituality is heavily context dependent. In addition, Western definitions and findings regarding spirituality may not be applicable to patients of non-Western origin, such as Indian PC patients. Given the particular sociocultural, religious, and economic conditions in which PC programs in India operate, we decided to undertake a systematic review of the literature on spirituality among Indian PC patients. We intended to assess how spirituality has been interpreted and operationalized in studies of this population, to determine which dimensions of spirituality are important for patients, and to analyze its ethical implications.Method:In January of 2015, we searched five databases (ATLA, CINAHL, EMBASE, PsycINFO, and PubMed) using a combination of controlled and noncontrolled vocabulary. A content analysis of all selected reports was undertaken to assess the interpretation and dimensions of spirituality. Data extraction from empirical studies was done using a data-extraction sheet.Results:A total of 39 empirical studies (12 qualitative, 21 quantitative, and 6 mixed-methods) and 18 others (10 reviews, 4 opinion articles, and 4 case studies) were retrieved. To date, no systematic review on spirituality in Indian PC has been published. Spirituality was the main focus of only six empirical studies. The content analysis revealed three dimensions of spirituality: (1) the relational dimension, (2) the existential dimension, and (3) the values dimension. Religion is prominent in all these dimensions. Patients' experiences of spirituality are determined by the specifically Indian context, which leads to particular ethical issues.Significance of results:Since spiritual well-being greatly impacts quality of life, and because of the substantial presence of people of Indian origin living outside the subcontinent, the findings of our review have international relevance. Moreover, our review illustrates that spirituality can be an ethical challenge and that more ethical reflection on provision of spiritual care is needed.

scholarly journals P082: Ethical management of incidental findings in emergency care: A critical interpretive literature review

CJEM ◽  
2020 ◽  
Vol 22 (S1) ◽  
pp. S94-S94
Author(s):  
R. Iskander ◽  
C. Ells
Keyword(s):  
Literature Review ◽  
Incidental Findings ◽  
Empirical Studies ◽  
Electronic Record ◽  
Practice Research ◽  
Reference List ◽  
Ethical Challenges ◽  
Ethical Management ◽  
Ethical Implications

Introduction: Incidental findings (IFs) are findings discovered in the course of healthcare (e.g., blood tests, genetic tests, imaging) that are unrelated to the primary purpose for which a test was sought. Some IFs constitute new knowledge that have implications for patient autonomy and welfare. IFs found in emergency departments (EDs) are difficult to manage, with one study reporting that of 392 patients with IFs, 122 had no follow-up and 242 had no electronic record of the finding. Methods: A critical interpretive literature review was conducted to explore current practices regarding identification, disclosure, and management of IFs in EDs, and to identify ethical challenges that require research focus and policy reform. The search strategy included ‘incidental findings’ AND ‘emergency’ and derivatives, retrieving 12,021 studies from databases including PubMed, Scopus, and Web of Science, as well as handsearching and reference list searching. Following screening, 97 studies were included. Data was extracted, analyzed using descriptive statistics, and then critically interpreted to capture key ideas. Results: Of 97 included articles, 75 have relevant empirical data. Of the 75, most literature (89%) presented the frequency of IFs in EDs, with an average frequency of 34%. Most (84%) did not report on patient disclosure rates or follow-up rates. When reported, patient notification rates are as low as 2.6% with an average of 15% over 12 studies. Empirical studies included in the review do not address ethical principles or patient preferences on disclosure. The literature reveals suggestions to manage IFs in EDs, including implementation of automatic feedback or alert mechanisms, clarification of responsibilities within treating teams, protocols in radiology departments, and improvements to patient documentation. Test results by letter are noted as insufficient because patients are unable to ask questions. Authors suggest further research on optimal follow-up recommendations to alleviate patient and physician distress. Further results will be presented, critically interpreted, and discussed, with attention to ethical implications and challenges. Conclusion: The literature on IFs in EDs focuses too narrowly on frequency, with ad hoc suggestions for practice, research, and policy changes to improve the ethical management of IFs. Numerous factors, including crucial knowledge gaps, contribute to inadequate management of IFs arising in EDs. Research and ethics informed policy guidance is needed.

Achieving Financial Inclusion for Persons With Disabilities: Exploring Preparedness and Accessibility of Financial Services for Persons With Disabilities in Malawi

2021 ◽  
pp. 104420732110275
Author(s):  
Alex Nester Jiya ◽  
Maxwell Peprah Opoku ◽  
William Nketsia ◽  
Joslin Alexei Dogbe ◽  
Josephine Nkrumah Adusei
Keyword(s):  
Financial Literacy ◽  
Financial Services ◽  
Commercial Banks ◽  
Empirical Studies ◽  
Well Being ◽  
Living Conditions ◽  
Inclusive Development ◽  
Future Research ◽  
Structured Interviews ◽  
Persons With Disabilities

Deplorable living conditions among persons with disabilities and the need to improve their living conditions cannot be overemphasized. This has triggered international discussion on the need for deliberate social policies to bridge the poverty gap between persons with and without disabilities. In Malawi, expansion of financial services has been identified as an essential tool to accelerate economic and inclusive development. However, empirical studies are yet to explore the preparedness of financial institutions to extend their services to persons with disabilities. In this qualitative study, semi-structured interviews were conducted with managers from commercial banks in Malawi to understand their perspectives on extending financial services to persons with disabilities. Interviews were transcribed verbatim and a descriptive thematic analysis was performed. Although participants reiterated the need to provide persons with disabilities with financial services to improve their well-being, few initiatives have been undertaken to improve their participation. Particularly, participants stated that barriers, such as a lack of financial literacy and adaptive technologies, communication barriers, and high rates of unemployment, explained the reluctance of commercial banks to extend financial services to persons with disabilities. The limitations, recommendations for future research, and implications of the study for policymaking have been highlighted.

scholarly journals The Congregational Character Questionnaire: An Initial Empirical Examination of the Significance of Collective Church Character Traits

2021 ◽  
pp. 009164712110219
Author(s):  
T. Ryan Byerly ◽  
Keith J. Edwards ◽  
Peter C. Hill
Keyword(s):  
Meaning In Life ◽  
Satisfaction With Life ◽  
Empirical Studies ◽  
Well Being ◽  
Character Traits ◽  
Academic Disciplines ◽  
Future Research ◽  
Religious Congregations ◽  
Empirical Examination ◽  
Christian Churches

Researchers in several academic disciplines have begun to take an interest in group character traits, including the character traits of religious congregations. This article reports the first empirical studies of congregational virtues. The Congregational Character Questionnaire was developed for measuring 12 different virtues of Christian churches: clinging to apostolic teaching, honoring teachers, prayerfulness, hopefulness, discipleship, emotional supportiveness, material supportiveness, spiritual equality, unity, submission, peace with the world, and spreading the faith. The instrument was then used with an online sample ( N = 530) to study how congregants’ perceptions of their congregation’s virtuousness related to congregants’ evaluations of their congregation, participation in their congregation, as well as congregants’ satisfaction with life, presence of meaning in life, and religious well-being. Results indicated that congregants’ overall perceptions of congregational virtuousness were significantly positively related to all of these dependent variables. These results help to reveal the important role that congregational character may play in the experience of congregants. Directions for future research in this area are outlined.

scholarly journals Mobile bystanders and rubbernecks, disaster tourists, and helpers. Towards a theoretical framework for critically studying action possibilities at accident sites

2021 ◽  
pp. 205015792098482
Author(s):  
Linus Andersson ◽  
Ebba Sundin
Keyword(s):  
Digital Media ◽  
News Media ◽  
Well Being ◽  
Theoretical Framework ◽  
Communication Studies ◽  
Mobile Media ◽  
Ethical Implications ◽  
Theoretical Perspectives ◽  
Media And Communication ◽  
Media Practices

This article addresses the phenomenon of mobile bystanders who use their smartphones to film or take photographs at accident scenes, instead of offering their help to people in need or to assist medical units. This phenomenon has been extensively discussed in Swedish news media in recent years since it has been described as a growing problem for first responders, such as paramedics, police, and firefighters. This article aims to identify theoretical perspectives that are relevant for analyzing mobile media practices and discuss the ethical implications of these perspectives. Our purpose is twofold: we want to develop a theoretical framework for critically approaching mobile media practices, and we want to contribute to discussions concerning well-being in a time marked by mediatization and digitalization. In this pursuit, we combine theory from social psychology about how people behave at traumatic scenes with discussions about witnessing in and through media, as developed in media and communication studies. Both perspectives offer various implications for normative inquiry, and in our discussion, we argue that mobile bystanders must be considered simultaneously as transgressors of social norms and as emphatic witnesses behaving in accordance with the digital media age. The article ends with a discussion regarding the implications for further research.

scholarly journals Medication of Hydroxychloroquine, Remdesivir and Convalescent Plasma during the COVID-19 Pandemic in Germany—An Ethical Analysis

2021 ◽  
Vol 18 (11) ◽  
pp. 5685
Author(s):  
Katja Voit ◽  
Cristian Timmermann ◽  
Florian Steger
Keyword(s):  
Early Stage ◽  
Treatment Options ◽  
Drug Distribution ◽  
Experimental Treatment ◽  
Ethical Analysis ◽  
Ethical Principles ◽  
Ethical Challenges ◽  
Ethical Guidelines ◽  
Negative Effects ◽  
Experimental Drug

This paper aims to analyze the ethical challenges in experimental drug use during the early stage of the COVID-19 pandemic, using Germany as a case study. In Germany uniform ethical guidelines were available early on nationwide, which was considered as desirable by other states to reduce uncertainties and convey a message of unity. The purpose of this ethical analysis is to assist the preparation of future guidelines on the use of medicines during public health emergencies. The use of hydroxychloroquine, remdesivir and COVID-19 convalescent plasma in clinical settings was analyzed from the perspective of the ethical principles of beneficence, non-maleficence, justice and autonomy. We observed that drug safety and drug distribution during the pandemic affects all four ethical principles. We therefore recommend to establish ethical guidelines (i) to discuss experimental treatment options with patients from all population groups who are in urgent need, (ii) to facilitate the recording of patient reactions to drugs in off-label use, (iii) to expand inclusion criteria for clinical studies to avoid missing potentially negative effects on excluded groups, and (iv) to maintain sufficient access to repurposed drugs for patients with prior conditions.

scholarly journals Dyads in Dementia Care: An International Perspective on Research Challenges and Opportunities

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 757-757
Author(s):  
Marie Boltz ◽  
Karin Wolf-Ostermann ◽  
Katie Maslow
Keyword(s):  
Daily Practice ◽  
Well Being ◽  
International Perspective ◽  
Dementia Care ◽  
Research Approach ◽  
Ethical Challenges ◽  
Research Strategies ◽  
Policy And Practice ◽  
Challenges And Opportunities ◽  
Informal Carers

Abstract Dementia poses a societal challenge that is life-changing not only for persons with dementia (PWD) but also for family members and friends (informal carers) directly involved in the care arrangement. Informal carers (IC) have typically poorer outcomes in terms of well-being, quality of life (QoL), health status, and use of health care resources. Dyads of PWD and IC living with dementia are characterized by strong reciprocal relationships and complex living contexts. Therefore, research should investigate home based dementia caregiving from a dyadic perspective to yield interventions that support the PWD, the IC, and the unit as a whole. However, it is an ongoing challenge to investigate dyadic needs and preferences in daily practice and develop effective interventions. Challenges are related to incomplete understanding of dyadic characteristics, attitudes and beliefs within the dyad, as well as how to adapt research approach to engage and retain the dyad in research. This international symposium will therefore address these issues. The first presentation will describe a typology of dementia care dyad characteristics and needs in Germany. The second presentation will examine the challenges and opportunities associated with recruiting and retaining dementia dyads. The third presentation will explore ethical challenges posed in communication with dyads and possible solutions for the researcher. The final presentation reports on the Meeting Centre Support Program as an example of an effective psychosocial intervention employing research strategies that transcend cultural barriers. Our discussant, Katie Maslow, will synthesize the presentations and lead a discussion of future directions for policy and practice.

scholarly journals The Distinct Wrong of Deepfakes

2021 ◽  
Author(s):  
Adrienne de Ruiter
Keyword(s):  
Digital Data ◽  
Main Argument ◽  
Ethical Challenges ◽  
Ethical Implications ◽  
Digital Representations ◽  
Distinctive Aspect ◽  
Moral Dimensions ◽  
Audio Files ◽  
Potential Use ◽  
Identity Protection

AbstractDeepfake technology presents significant ethical challenges. The ability to produce realistic looking and sounding video or audio files of people doing or saying things they did not do or say brings with it unprecedented opportunities for deception. The literature that addresses the ethical implications of deepfakes raises concerns about their potential use for blackmail, intimidation, and sabotage, ideological influencing, and incitement to violence as well as broader implications for trust and accountability. While this literature importantly identifies and signals the potentially far-reaching consequences, less attention is paid to the moral dimensions of deepfake technology and deepfakes themselves. This article will help fill this gap by analysing whether deepfake technology and deepfakes are intrinsically morally wrong, and if so, why. The main argument is that deepfake technology and deepfakes are morally suspect, but not inherently morally wrong. Three factors are central to determining whether a deepfake is morally problematic: (i) whether the deepfaked person(s) would object to the way in which they are represented; (ii) whether the deepfake deceives viewers; and (iii) the intent with which the deepfake was created. The most distinctive aspect that renders deepfakes morally wrong is when they use digital data representing the image and/or voice of persons to portray them in ways in which they would be unwilling to be portrayed. Since our image and voice are closely linked to our identity, protection against the manipulation of hyper-realistic digital representations of our image and voice should be considered a fundamental moral right in the age of deepfakes.

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