Studia Universitatis Babeş-Bolyai Bioethica
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Published By Babes-Bolyai University

2065-9504, 2247-0441

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 159-160
Author(s):  
Matthé Scholten ◽  
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Jakov Gather ◽  
Jochen Vollmann ◽  
◽  
...  

"Background: Supported decision-making (SDM) refers to all types of interventions support persons with impaired decision-making capacity (DMC) in making informed treatment decisions. It encompasses a wide range of interventions, such as enhanced consent procedures, elaborated plain language and involvement of family, friends or peers in the informed consent process. Empirical research showed that SDM can enhance DMC. The UN Convention on the Rights of Persons with Disabilities, which has been ratified by 180 states parties to date, pronounces in article 12(3) that “states parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.” At the same time, medical ethicists and legal scholars have raised the concern that persons with impaired DMC are more likely to become subject to undue influence under SDM arrangements. Objectives: The aim of this presentation is to provide a conceptual framework to facilitate an ethical evaluation of various forms of supported decision-making. Methods: Empirically informed conceptual analysis. Various SDM interventions are analyzed. Findings: It is necessary to distinguish between input, process and output support. Input support involves influencing factors that are negatively correlated with DMC; process support involves interpreting a person’s preferences and carrying out intellectual processing; and output support involves enabling a person to communicate decisions to others. Conclusion: Most forms of input and output support are promising, but ethical issues in relation to framing and interpersonal leverage must be addressed. Forms of process support that involve “outsourcing” decision-making capacities are ethically problematic. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 79-79
Author(s):  
Lucia Galvagni ◽  
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"The presentation intends to present and illustrate an experience of teaching clinical ethics realized with a group of clinicians and philosophy students and held at the Philosophy Department of the University of Trento, Italy (Spring 2013 and Spring 2015). The class was intended to train clinicians and students to the main concepts of clinical ethics and to a specific methodology to approach clinical matters with ethical and philosophical tools. The class offered a space and time of listening, confronting, debating and learning. The opportunity to dialogue and to reflect, starting form clinical cases presented by clinicians and to realize an ethical analysis of them, combining languages and competences, resulted extremely relevant for clinicians, for students involved and for the teachers themselves. It represented – as well – a first and previous step to start some action-research in specific clinical units, as the local Intensive Care Unit, the Transplantation Coordination Unit and the Mountain Medicine and Ethics Lab. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 62-63
Author(s):  
Dide de Jongh ◽  
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Eline Bunnik ◽  
Emma Massey ◽  
◽  
...  

"The most effective treatment for type 1 diabetes is transplantation of either a whole pancreas from a deceased donor or islet cells derived from multiple deceased donors. However, transplantation has several limitations, including shortage of post-mortem donors and the need for post-transplant patients to use life-long immunosuppressive medication. In the last decade, the field of regenerative medicine has combined engineering and biological technologies in the attempt to regenerate organs. The European VANGUARD project aims to develop immune-protected bioartificial pancreases for transplantation into non-immunosuppressed type 1 diabetic patients. This project is creating a ‘combination product’ using cells and tissue from a variety of sources, including placentas and deceased donors. The clinical development of this complex product raises ethical questions for first-in-human (FIH) clinical trials. Under what conditions can bio-artificial organs safely are transplanted in humans for the first time? How can patients be selected, recruited and informed responsibly? In this presentation, we investigate the ethical conditions for clinical trials of bio-engineered organs, focusing inter alia on study design, subject selection, risk-benefit assessment, and informed consent. We present the results of a review of the literature on the ethics of clinical trials in regenerative medicine, cell and gene therapy and transplantation, and specify existing ethical guidance in the context of FIH transplantation trials of bioartificial organs. We conclude that this new and innovative area at the intersection of regenerative medicine, cell and gene therapy and transplantation requires adequate consideration of the ethical issues in order to guide responsible research and clinical implementation. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 144-144
Author(s):  
Raphaël Pfeiffer ◽  
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"In a clinical context, the communication of genetic information is an event that can give rise to unexpected situations for health professionals. Several empirical studies have shown that, despite being presented with “good” presymptomatic test results, some patients develop negative feelings, depression, which can in extreme cases lead to suicide attempts. Here, genetic information takes full meaning when considered in a personal narrative. In this presentation, we would like to look at the specificities of this narrative experience in the light of works on the aesthetics of everyday life, with a particular focus on the works of John Dewey. For Dewey, the aesthetic experience is possible in all aspects of people’s daily lives, including clinical experience. In this case, “aesthetics” appears in the sensitive character of an experience rather than in a specific type of object. Through the examination of this thought, we will ask to what extent we can speak of an aesthetic experience when thinking of the communication of genetic information, and how this consideration can help ethical reasoning. We will begin by examining how the moment of the communication of genetic information to patients by the clinician can constitute a process of defamiliarization of everyday life. This will lead us to look at patients’ accounts of genetic information reception and to analyse how these appear to be more than mere testimonies about the experience of pathologies, but a means by which the patient is confronted with difficult experiences in order to reformulate them. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 94-94
Author(s):  
Oana Maria Isailă ◽  
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Sorin Hostiuc ◽  
Filip Curcă ◽  
George Cristian Curcă ◽  
...  

"Virtual reality (VR), initially a form of entertainment has begun to find its way in healthcare practice. One of its main areas of interest is the treatment of psychiatric disorders. When using VR, the basic ethical principles underlying the physician-patient relationship should be respected, but they should be customized by the presence of an additional layer of complexity generated by the interposition of the virtual world. The physician-patient relationship is often multidirectional, often including a larger team of healthcare professionals, family members or acquaintances, working conjointly to optimize the medical care. Each time other participants are involved within this relationship, the complexity of the ethical issues tends to increase. For example, if the patient has decreased insight, it is possible that other persons must make some medical decisions – resulting a prioritization of beneficence compared to autonomy. Also, we must take into account the fact that many psychiatric symptoms can be seen as a form of “virtual reality” by the patient. The healthcare provider must take additional safety measures to minimize the harms made by VR techniques in psychiatric patients, by using methods that are individually tailored. The main aim of this paper is to debate the ethical aspects surrounding the applicability of virtual reality in treating psychiatric patients, with an emphasis on the elements that were mentioned earlier. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 148-148
Author(s):  
Leon Rossmaier ◽  
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"Mobile health (mHealth) apps are becoming progressively important for primary care, disease prevention, and public health interventions. They promise to empower its users by offering them more independence, better access to health services, and more insight into their health status resulting in better informed medical decision-making and lifestyle changes. Disadvantages of mHealth apps often include a lack of privacy protection, a decrease in personal attachment, and the acceptance of a normative conception of health challenging the user’s self-determination. Privacy, attachment, and self-determination are, alongside health, linked to fundamental dimensions of human well-being. Users of mHealth apps can either accept those disadvantages or abstain from using this technology entirely. Users, therefore, have to trade-off fundamental dimensions of well-being to gain a certain health benefit if they want to use commercial mHealth apps. This presentation will clarify the values most relevant in this context, focusing on privacy, self-determination, and attachment. I claim that these values imply fundamental conditions of well-being that should not be undermined, especially in the context of health care. I will argue that the value trade-offs users must engage in are an instance of mutually advantageous agreements by which the provider of the app takes unfair advantage of the user. This renders such agreements exploitative. I will discuss the notion of exploitation that I think applies in this case and explain under what circumstances exploitative agreements that come with the use of commercial mHealth apps oppose the empowerment narrative. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 113-114
Author(s):  
Krishma Labib ◽  
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Joeri Tijdink ◽  
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"Co-creation is a qualitative research methodology that engages stakeholders in playful activities to produce user-centered outputs. Through an interactive and open approach, co-creation explores stakeholders’ latent values, generates innovative ideas, and captures minority views, allowing for in-depth understanding of how stakeholders are affected by various factors. Therefore, co-creation is a promising methodology for developing guidelines on research integrity (RI), although there is no literature available about co-creation in this context. In our presentation, we share experiences of using co-creation to design institutional guidelines on RI together with research managers, funders and researchers across Europe. We conducted 24 co-creation workshops on topics ranging from RI education, to creating a responsible research environment, resulting in concrete guidelines that research institutions and funders can implement to foster RI. Our experience has provided us with valuable insights on using co-creation for RI guideline development. While motivating research stakeholders – often serious and analytically oriented people – to engage in creative exercises can be a challenge, particularly in the online setting, it is possible to achieve when ‘play’ and ‘work’ are carefully balanced. Additionally, to ensure the concreteness of guidelines while accounting for differences among institutions and countries, best practice examples can be used to show different approaches to implementing more general guidance. We have also learned that it is valuable to explore stakeholders’ preferences regarding the guideline format, since implementability is not only influenced by the content. These insights provide practical considerations that other researchers can use when co-creating RI guidelines. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 156-157
Author(s):  
Petru Sandu ◽  
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Maria Aluaș ◽  
Răzvan M. Cherecheș ◽  
◽  
...  

"Besides its undoubtable significant contribution to morbidity and mortality worldwide, the COVID-19 pandemic has had numerous political, social, economic, and public health implications. Vaccination, an already long debated public health ethics theme, has reoccurred in force, as the efforts of the scientific community to curb the pandemic resulted in a viable vaccine less than one year since COVID-19 was declared a pandemic. High-level, international negotiations dictated states’ COVID-19 vaccine availability in the first few months, therefore each national Government had to develop and deploy vaccination campaigns prioritizing certain population categories. This paper aims to present Romanian COVID-19 vaccination campaign, from its inception to the present days, by focusing on the ethical considerations (e.g. prioritization, coercion, non-discrimination) and their practical implications ( e.g. vaccination hesitancy, rates, fake news). Like most countries in the European Community, Romania has initially adopted a Rawlsian approach to vaccination, prioritizing the older adults and the individuals with chronic conditions. However, unlike other European countries, coercion was not considered in any form (e.g. extended mobility facilities for the vaccinated), more recently incentives such as food vouchers being discussed. The impact of these decisions on the vaccination rates and hesitancy are discussed in the context of other European countries examples of vaccination campaigns. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 152-152
Author(s):  
Dario Sacchini ◽  
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Pietro Refolo ◽  
Barbara Corsano ◽  
Mario Picozzi ◽  
...  

"This work is aimed at critically illustring the eight-year experience of the Master in “Clinical Bioethics Consultation” (2013-2020). This advanced second-level Master was promoted in 2013 by the Catholic University of the Sacred Heart of Rome, and co-worked by other Italian clinical as well as academic institutions (University Campus Bio-medico of Rome, Insubria University of Varese, “Federico II” University of Naples, Lanza Foundation of Padua, Local Health and Social Care Unit n. 7 (ULSS) of Veneto Region, Treviso; Ospedale San Giovanni Calibita Fatebenefratelli – Isola Tiberina, Rome, and Italian Group for clinical ethics consultation (GIBCE)). To this aim, it first will discuss two points: on the one hand, an epistemological one, i.e. the justification of the activity of ethics consultant in clinical settings supported by the authors; on the other hand, a pedagogical one, i.e. the identification of the learning needs clinical bioethics gives birth to. The second part of the work will focus on the experience of the Master, explaining its basic features (objectives, methods, contents, evaluation tools, etc), offering a critical review, and identifying the challenges this initiative has to face in the next future. "


2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 33-33
Author(s):  
Susan Berentsen ◽  
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Fenneke Blom ◽  
Rob van der Sande ◽  
◽  
...  

"In the Dutch Universities of Applied Sciences (UASs) applied research is gaining an increasingly important place in their activities, not only as a means to improve teaching but as a means to develop innovations and professionalism as well. The establishment of a clear framework of research integrity is an important condition to foster the research environment. Up to now, in the UASs there is no specific training for researchers that helps researchers to develop the necessary competencies. This project seeks to address this issue by developing a training program on ‘Responsible Conduct of Research’. To identify what topics should be covered twelve researchers from six different UASs and seven different domains were interviewed (Economics, Arts and Culture, Pedagogy, Technology, Healthcare, Business Administration, and Bioinformatics). Their input resulted in a picture of the state of the art in integrity issues that the interviewees considered as important. Based on an explorative qualitative data analysis and the project team’s expertise tailored learning objectives and appropriate learning methods were formulated. The training program will likely be offered through the Association of UASs (Vereniging van Hogescholen) to all UASs in our country. "


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