Bioética do cuidado na clínica de ensino: aprendendo com pacientes / Bioethicsof the care in the teaching clinic: learning with patients

O estudo buscou compreender práticas de acolhimento de pacientes em uma clínica de ensino odontológico.Trata-se de um estudo de caso único e holístico, com abordagem qualitativa. Foram realizadas entrevistas abertas com 20 pacientes, guiadas por um roteiro com temas problematizadores que procuram ligar princípios bioéticos a dispositivos subjetivos do cuidado: conceito ampliado de saúde e doença, intersubjetividade, corresponsabilidade e qualidade de vida. As práticas discursivas analisadas mostraram que o vínculo entre estudantes e pacientes da clínica de ensino se estabelece em uma construção mediada pelo longo tempo da formação. A corresponsabilidade está relacionada às construções intersubjetivasnocuidado e tem como atores do processo osestudantes e os pacientes. Ao afirmarem sentirem-se livres para opinar sobre seus tratamento também expressam uma postura de reduzida autonomia, pois consideramque não sejanecessário fazê-lo. Como reflexo da fragmentação do cuidado nas clínicas de ensino, muitos silenciamentos emergem destas relações de poder e cuidado. Acredita-se que é clara a importância de práticas que se desvinculem de funções estritamente técnicas e invistam nos processos de fala e escuta, incansavelmente buscando empatia e vínculo como as tecnologias de saúde mais potentes para o tratamento, pois reafirmam a autonomia das pessoas na construção de seus itinerários de cuidado e a dignidade humana como valor central da prática de saúde (AU).

The study aimed to understand welcoming patients practices in a dentistry teaching clinic.It is a holistic single-case study with a qualitative approach.Twenty patients were interviewed following anopen-ended script containing problematizing topics trying to connect bioethical principles tosubjective devices of care: expandedconcept of health and illness, intersubjectivity, co-responsibility, and quality of life.The discursive practices analyzed showed that the bond between students and patients of the teaching clinic is established in a construction mediated by the long training time.Co-responsibility is related with the intersubjective constructions in the care, being the actors of the process both the students and the patients.When claiming to feelfree to give an opinion on their treatment, they also express a position of reduced autonomy, as they consider that it is not necessary to give it.As a reflection of the fragmentation of the care in the teaching clinics, much silencing emerges from these relations of power and care.It is believed that that the importance of practices that unlinkthemselvesfrom strictly technical functions and invest in the speaking and listening processes is clear. In an untiring search for empathy and bond as the mostpowerful health technologies for the treatment, they reaffirm the autonomy of the people in the construction of their itineraries of care and human dignity as a core value of the practice of health (AU).

'It's not worse than eating them': the limits of analogy in bioethics.

Bioethicists often defend novel practices by drawing analogies with practices that we are already familiar with and currently tolerate. If some novel practice is less bad than some widely-accepted practice, then (it is argued) we cannot rightly reject it. Using the bioethics literature on xenotransplantation and interspecies blastocyst complementation as a case study, I show how this style of argument can go awry. The key problem is that our moral intuitions about familiar practices can be distorted by their seeming normality. When considering the ethics of emerging technologies and novel practices, we should remain open to the possibility that our moral views about familiar practices are mistaken.

Systemic Modelling in Bioethics.

We present here a new method for bioethics: systemic modelling. In this method, the complex phenomenon being studied (e.g. personalized medicine, genetic testing, gene therapy, genetically modified organisms) is modelled as a whole, to shed light on its organization and functioning, and major (bio)ethical issues and solutions for their resolution are then identified. This systemic modelling method is ideal for use in the identification of solutions, rather than their validation, with other methods then used to test the solutions found. We provide a description and reproducible instructions for the application of systemic modelling in bioethics, together with a brief example of the application of this method to the study of the impact of personalized medicine on French society.

Ethical, Legal, and Social Issues Related to the Inclusion of Individuals With Intellectual Disabilities in Electronic Health Record Research: Scoping Review.

BACKGROUND: Data from electronic health records (EHRs) are increasingly used in the field of genetic research to further precision medicine initiatives. However, many of these efforts exclude individuals with intellectual disabilities, which often stem from genetic conditions. To include this important subpopulation in EHR research, important ethical, legal, and social issues should be considered. OBJECTIVE: The goal of this study was to review prior research to better understand what ethical, legal, and social issues may need further investigation when considering the research use of EHRs for individuals with genetic conditions that may result in intellectual disability. This information will be valuable in developing methods and best practices for involving this group in research given they are considered a vulnerable population that may need special research protections. METHODS: We conducted a scoping review to examine issues related to the use of EHRs for research purposes and those more broadly associated with genetic research. The initial search yielded a total of 460 unique citations. We used an evaluative coding process to determine relevancy for inclusion. RESULTS: This approach resulted in 59 articles in the following areas: informed consent, privacy and security, return of results, and vulnerable populations. The review included several models of garnering informed consent in EHR or genetic research, including tiered or categorical, blanket or general, open, and opt-out models. Second, studies reported on patients' concerns regarding the privacy and security of EHR or genetic data, such as who has access, type of data use in research, identifiability, and risks associated with privacy breach. The literature on return of research results using biospecimens examined the dissension in the field, particularly when sharing individualized genetic results. Finally, work involving vulnerable populations highlighted special considerations when conducting EHR or genetic research. CONCLUSIONS: The results frame important questions for researchers to consider when designing EHR studies, which include individuals with intellectual disabilities, including appropriate safeguards and protections.

Avoiding the potentiality trap: thinking about the moral status of synthetic embryos.

Research ethics committees must sometimes deliberate about objects that do not fit nicely into any existing category. This is currently the case with the "gastruloid," which is a self-assembling blob of cells that resembles a human embryo. The resemblance makes it tempting to group it with other members of that kind, and thus to ask whether gastruloids really are embryos. But fitting an ambiguous object into an existing category with well-worn pathways in research ethics, like the embryo, is only a temporary fix. The bigger problem is that we no longer know what an embryo is. We haven't had a non-absurd definition of 'embryo' for several decades and without a well-defined comparison class, asking whether gastruloids belong to the morally relevant class of things we call embryos is to ask a question without an answer. What's the alternative? A better approach needs to avoid what I'll refer to as "the potentiality trap" and, instead, rely on the emergence of morally salient facts about gastruloids and other synthetic embryos.

Evaluation of Ethical Analyses in Seven Reports from the European Network for Health Technology Assessment.

OBJECTIVES: Ethics has been considered among the core domains of health technology assessment (HTA), but there are still disputes regarding ethical analysis. This study aimed to examine full final reports of the European Network for Health Technology Assessment (EUnetHTA) in terms of their compliance with the ethical methodology and ethical perspective of the HTA Core Model®. METHODS: The study examines seven full final HTA reports of EUnetHTA written based on the methodology proposed in the HTA Core Model®. The reports were analyzed using the following parameters: competency of the person/group who conducted ethical analysis, assessment elements, and the methodology of ethical analysis. RESULTS: The results show that, although the HTA Core Model® helped to standardize the final reports of the assessment, there are still concerns regarding the competency of the ethical analysis team, the perspectives on the purpose of ethical analysis, data sources and viewpoints of various stakeholders, use of ethical analysis methodology, and the evaluation of the ethical appropriateness of the entire HTA process. CONCLUSIONS: The HTA Core Model® helped to standardize the final reports on the HTA; however, not all issues with the content and outcomes were solved. The lack of expertise in ethics and insufficiency of the teams regarding ethical analysis are other existing problems. This study also demonstrated that stakeholder viewpoints in general and patient perspectives, in particular, have been overlooked in the HTA process.

To be an honest person or not to be a cheater: Replicating the effect of messages relating to the self on unethical behaviour.

Previous research has found that negative-valence appeals relating to the self (Don't be a cheater) are more effective at reducing unethical behaviour than appeals relating to behaviour (Don't cheat). We aimed to replicate these findings and examine whether positive-valence appeals relating to the self (Be an honest person) and to behaviour (Answer honestly) could have a similar effect. We ran five experiments with Israeli and U.S. samples, using social interaction and anonymous settings, and different methodologies: Die roll, coin-flip and number choice. A meta-analysis of the five experiments revealed a small effect of the self-appeals relative to the behaviour-appeals. These findings provide additional support for the theoretical explanation offered in terms of the role of the self in regulating unethical behaviour. However, the effect sizes found in our experiments were smaller than the ones previously reported. We discuss the merit in using self-appeals to reduce unethical behaviour, the possible advantage of positive-valence self-appeals, and the possible moderating role of the setting in which the behaviour takes place: Social interaction versus anonymous settings.

[Chapter 1. Space, ethics and imagination.] / Chapitre 1. Espace, éthique et imagination.

Imagination is at the heart of ethical interrogation when it focuses on space activities, present and future. While the first decades of the space enterprise were driven by extremely proactive policies, its goals, its reasons for being must now be more explicit, more reasonable as well as its consequences. Search of extraterrestrial life forms and projects to exploit space resources are two fields of spatial activity that require the association of ethical and imaginary questioning.

The Ethics of Technology: Response to Critics.

The Ethics of Technology: A Geometric Analysis of Five Moral Principles proposes five moral principles for analyzing ethical issues related to engineering and technology. The objections raised by several authors to the multidimensional scaling technique used in the book reveal a lack of familiarity with this widely used technique.

The Four-Quadrant Approach to Ethical Issues in Burn Care.

Burn injuries raise questions about decision-making capacity, informed consent, medical decision making, patient autonomy, the patient-physician relationship, and medical futility that must be acutely addressed. A commonly used approach to managing ethical challenges focuses on moral principles including respect for patient autonomy, beneficence, nonmaleficence, and justice. Another paradigm for ethical analysis is the "four-quadrant" approach, which poses questions for a given case regarding medical indications, patient preferences, quality of life, and contextual features. We have found this approach to be very effective in the clinical setting. This article will highlight the use of the four-quadrant approach in the management of ethical challenges that arise in the care of the severely burned patient.

¿Quién decide qué datos deben constar en la historia clínica en relación con el origen biológico? / Who decides what data should be recorded in the medical history in relation to the biological origin?

Cada vez es más frecuente que se produzcan peticiones de pacientes o de sus representantes relativas a que determinada información no quede registrada en la historia clínica o que, si ya lo está, se elimine. Sin duda esto es debido a que saben que a los historiales clínicos acceden numerosos profesionales que en muchas ocasiones no guardan una relación estrictamente asistencial con ellos y que de manera generalizada se copian antecedentes médicos que de forma innecesaria se reproducen en los diversos informes de alta o de asistencia. El problema produce situaciones de conflicto cuando los datos objeto de controversia hacen referencia a aspectos clínicos especialmente sensibles para la intimidad personal y familiar, como ocurre con las técnicas de reproducción asistida. Por ello, la pregunta que cabe formular es: ¿quién decide qué datos deben constar en la historia clínica y en función de qué criterios debe tomarse esa decisión? (AU)

There is an increasing request by patients or their representatives not to have some data registered in their clinical history or if such data exists to be deleted. Without doubt, this is so because such clinical data is accessed by various professionals who in most cases are not directly involved in caring for such patients. On the other hand, such data is copied and iteratively and unnecessary reproduced in various discharge reports and others forms. The problem arises when such controversial data refer to particularly sensitive clinical aspects such as assisted reproduction techniques, which invades personal and family privacy. Therefore, the question is who determines what data should be recorded in the medical records and according to what criteria should be taken that decision? (AU)

Methods for Practising Ethics in Research and Innovation: A Literature Review, Critical Analysis and Recommendations.

This paper provides a systematic literature review, analysis and discussion of methods that are proposed to practise ethics in research and innovation (R&I). Ethical considerations concerning the impacts of R&I are increasingly important, due to the quickening pace of technological innovation and the ubiquitous use of the outcomes of R&I processes in society. For this reason, several methods for practising ethics have been developed in different fields of R&I. The paper first of all presents a systematic search of academic sources that present and discuss such methods. Secondly, it provides a categorisation of these methods according to three main kinds: (1) ex ante methods, dealing with emerging technologies, (2) intra methods, dealing with technology design, and (3) ex post methods, dealing with ethical analysis of existing technologies. Thirdly, it discusses the methods by considering problems in the way they deal with the uncertainty of technological change, ethical technology design, the identification, analysis and resolving of ethical impacts of technologies and stakeholder participation. The results and discussion of our literature review are valuable for gaining an overview of the state of the art and serve as an outline of a future research agenda of methods for practising ethics in R&I.

The Value of Darkness: A Moral Framework for Urban Nighttime Lighting.

The adverse effects of artificial nighttime lighting, known as light pollution, are emerging as an important environmental issue. To address these effects, current scientific research focuses mainly on identifying what is bad or undesirable about certain types and uses of lighting at night. This paper adopts a value-sensitive approach, focusing instead on what is good about darkness at night. In doing so, it offers a first comprehensive analysis of the environmental value of darkness at night from within applied ethics. A design for values orientation is utilized to conceptualize, define, and categorize the ways in which value is derived from darkness. Nine values are identified and categorized via their type of good, temporal outlook, and spatial characteristics. Furthermore, these nine values are translated into prima facie moral obligations that should be incorporated into future design choices, policy-making, and innovations to nighttime lighting. Thus, the value of darkness is analyzed with the practical goal of informing future decision-making about urban nighttime lighting.

Reading Caplan in Karachi.

Bioethics education and discussions about ethical dilemmas are being increasingly reduced to teaching students how to balance the four, easily memorised philosophical principles popularised by influential American philosophers Tom Beauchamp and Jim Childress. The reality is that human beings approach and comprehend moral issues in diverse ways shaped by shared histories, cultural norms and values, kinship systems, lived experiences and existing socio-political realities. Therefore, ethical discourse limited to a culturally myopic Principlism that disregards the indigenous landscape can be an abstract and meaningless venture. The different moral lenses through which people can view the same issue is highlighted in this essay. It compares the analyses offered by American bioethicist Arthur Caplan of the blocking of polio vaccination by militants in northern Pakistan and of issues related to posthumous insemination, with the more nuanced, contextualised discussions about both topics offered by Pakistani students of bioethics in our Center. For this discipline to resonate with and make an impact on those we teach, an inclusive, more reflective and socially relevant approach is required. In my opinion, bioethics is a contact sport that should not be transformed into merely an academic exercise.

Income-related health transfers principles and orderings of joint distributions of income and health.

The objective of this article is to provide the analyst with the necessary tools that allow for a robust ordering of joint distributions of health and income. We contribute to the literature on the measurement and inference of socioeconomic health inequality in three distinct but complementary ways. First, we provide a formalization of the socioeconomic health inequality-specific ethical principle introduced by Erreygers et al. (2012) . Second, we propose new graphical tools and dominance tests for the identification of robust orderings of joint distributions of income and health associated with this new ethical principle. Finally, based on both pro-poor and pro-extreme ranks ethical principles we address a very important aspect of dominance literature: the inference. To illustrate the empirical relevance of the proposed approach, we compare joint distributions of income and a health-related behavior in the United States in 1997 and 2014.

Maqasid al-Shariah as a Complementary Framework for Conventional Bioethics: Application in Malaysian Assisted Reproductive Technology (ART) Fatwa.

Rapid development in the area of assisted reproductive technology (ART), has benefited mankind by addressing reproductive problems. However, the emergence of new technologies and techniques raises various issues and discussions among physicians and the masses, especially on issues related to bioethics. Apart from solutions provided using conventional bioethics framework, solutions can also be derived via a complementary framework of bioethics based on the Higher Objectives of the Divine Law (Maqasid al-Shariah) in tackling these problems. This approach in the Islamic World has been applied and localised in the Malaysian context. Thus, this paper highlights a conceptual theoretical framework for solving current bioethical issues, with a special focus on ART in the Malaysian context, and compares this theory with conventional theories of bioethics.

What is the ethics of ageing?

Applied ethics is home to numerous productive subfields such as procreative ethics, intergenerational ethics and environmental ethics. By contrast, there is far less ethical work on ageing, and there is no boundary work that attempts to set the scope for 'ageing ethics' or the 'ethics of ageing'. Yet ageing is a fundamental aspect of life; arguably even more fundamental and ubiquitous than procreation. To remedy this situation, I examine conceptions of what the ethics of ageing might mean and argue that these conceptions fail to capture the requirements of the desired subfield. The key reasons for this are, first, that they view ageing as something that happens only when one is old, thereby ignoring the fact that ageing is a process to which we are all subject, and second that the ageing person is treated as an object in ethical discourse rather than as its subject. In response to these shortcomings I put forward a better conception, one which places the ageing person at the centre of ethical analysis, has relevance not just for the elderly and provides a rich yet workable scope. While clarifying and justifying the conceptual boundaries of the subfield, the proposed scope pleasingly broadens the ethics of ageing beyond common negative associations with ageing.

An Ethical (Descriptive) Framework for Judgment of Actions and Decisions in the Construction Industry and Engineering-Part I.

The construction industry is usually characterized as a fragmented system of multiple-organizational entities in which members from different technical backgrounds and moral values join together to develop a particular business or project. The greatest challenge in the construction process for the achievement of a successful practice is the development of an outstanding reputation, which is built on identifying and applying an ethical framework. This framework should reflect a common ethical ground for myriad people involved in this process to survive and compete ethically in today's turbulent construction market. This study establishes a framework for ethical judgment of behavior and actions conducted in the construction process. The framework was primarily developed based on the essential attributes of business management identified in the literature review and subsequently incorporates additional attributes identified to prevent breaches in the construction industry and common ethical values related to professional engineering. The proposed judgment framework is based primarily on the ethical dimension of professional responsibility. The Ethical Judgment Framework consists of descriptive approaches involving technical, professional, administrative, and miscellaneous terms. The framework provides the basis for judging actions as either ethical or unethical. Furthermore, the framework can be implemented as a form of preventive ethics, which would help avoid ethical dilemmas and moral allegations. The framework can be considered a decision-making model to guide actions and improve the ethical reasoning process that would help individuals think through possible implications and consequences of ethical dilemmas in the construction industry.

Organizing a Collaborative Development of Technological Design Requirements Using a Constructive Dialogue on Value Profiles: A Case in Automated Vehicle Development.

Following societal and policy pressures for responsible innovation, innovators are more and more expected to consider the broader socio-ethical context of their work, and more importantly, to integrate such considerations into their daily practices. This may require the involvement of 'outsiders' in innovation trajectories, including e.g. societal and governmental actors. However, methods on how to functionally organize such integration in light of responsible innovation have only recently started to emerge. We present an approach to do just that, in which we first develop value profiles of the involved actors, and second, design a workshop setting that allows innovators to develop design requirements in collaboration with representatives of parties that are not usually involved in such innovation design practices. Using a case study in automated vehicle development, we positively demonstrate the possibility and utility of our approach. We stress that in this study we wish to demonstrate the functionality of our developed method, and did not search for scientifically valid outcomes regarding this technical field.