Informe del Comité de Bioética de España sobre aspectos del uso secundario de los datos y el espacio europeo de protección de datos / [Report of the Spanish Bioethics Committee on aspects of secondary use of data and the European data protection space]

El presente informe da respuesta a la consulta de la Secretaría de Estado de Sanidad del Ministerio de Sanidad de 26 de mayo de 2023 sobre algunos aspectos del uso secundario de los datos y el espacio europeo de protección de datos. Recibida la consulta, el Comité aprobó el siguiente informe en su reunión plenaria del día 7 de noviembre de 2023, conforme a lo dispuesto en el artículo 78.1 a) de la Ley 14/2007, de 3 de julio, de Investigación Biomédica, que fija entre las funciones del Comité emitir informes, propuestas y recomendaciones para los poderes públicos de ámbito estatal y autonómico en asuntos con implicaciones bioéticas relevantes. (AU)

Neuroética: comienza el reinado de las neurociencias en la fundamentación de la ética / Neuroethics: the reign of neuroscience begins in the foundation of the ethics / Neuroética: começa o reinado das neurociências na fundamentação da ética

Resumen: 1] La neurociencia de la ética constituye un progreso al aplicar la ciencia empírica en la investigación del fenómeno moral. 2] Resaltar la importancia de afectos y sentimientos representa una compensación a la excesiva importancia dada a la razón en la formación de los juicios morales. 3] Existen graves dificultades metodológicas al no precisar los conceptos de "intuición", "afectos", "deber" y especialmente qué se entiende por "ética". 4] Pero la investigación científica aprehende al hombre como una "entidad" en sí (presente) y no como una "existencia" (futuro), vale decir, ser-en-el-mundo. 5] En lugar de "tener" una moral el ser humano "es" moral y, como tal, es un proyecto lanzado hacia su más auténtica posibilidad que consiste en apropiarse de su ser-para-la-muerte.

Abstract: 1] The Neuroscience of Ethics constitutes a progress when applying empirical science in the investigation of the moral phenomenon. 2] Emphasizing the importance of affects and feelings represents a compensation for the excessive importance given to reason in the formation of moral judgments. 3] There are serious methodological difficulties by not specifying the concepts of intuition, affections, duty and especially what is understood by ethics. 4] But scientific research apprehends man as an "entity" in himself (present) and not as an "existence" (future), that is, being-in-the-world. 5] Instead of "having" a moral, the human being "is" moral and as such is a project thrown towards its most authentic possibility that consists of appropriating its being-for-death.

Resumo: 1] A neurociência da ética constitui um progresso ao aplicar a ciência empírica na investigação do fenômeno moral. 2] Ressaltar a importância de afetos e sentimentos representa uma compensação à excessiva importância dada à razão na formação dos juízos morais. 3] Existem graves dificuldades metodológicas ao não precisar os conceitos de "intuição", "afetos", "dever" e especialmente o que se entende por "ética". 4] Porém a investigação científica apreende o homem como uma "entidade" em si (presente) e não como una "existência" (futuro), vale dizer, ser-no-mundo. 5] Em lugar de "ter" uma moral o ser humano "é" moral e, como tal, é um projeto lançado à sua mais autêntica possibilidade, que consiste em apropriar-se de seu ser-para-a-morte.

Ética, prudencia y educación médica. De la moral tradicional a la necesidad actual / Ethics, prudence and medical education. From classical moral to current needs

RESUMEN Dentro de las líneas comunes entre la educación médica y la educación en ética se destaca la utilización de la prudencia como virtud. Tanto en la formación clínica como en la moral impera un eje rector: ante todo no hacer daño y procurar el bien en las acciones. Dichas similitudes han sido la constante desde la época clásica griega. Pensadores como Hipócrates y Aristóteles tenían algo en común: ambos eran médicos apasionados y promotores de la vida buena. En el presente artículo se realiza un análisis del juramento hipocrático y se correlaciona con el ideario bioético actual. Asimismo, se pretendió demostrar cómo desde tiempos remotos hasta hoy, con los nuevos retos de los tiempos modernos, la prudencia y la virtud moral se entrelazan de inicio a fin en la formación de los profesionales de la salud (AU).

ABSTRACT Among the common links between medical and ethical education, prudence, as a virtue, is highly important. Both, in clinical training and in moral education there is a main principle: not to damage and seeking good in actions. These similarities have being a constant since the ancient Greece; philosophers like Hippocrates and Aristotle had something in common: both were passionate doctors, and both were sponsors of the good living. In the current article we analyze the Hippocrates oak, stating its relationship with the modern bioethics thoughts. Likewise, we intended to show how, since the ancient times up today, with the new challenges of the modern times, prudence and moral virtue intertwine from the beginning to the end in health professionals training (AU).

Producción científica sobre ética y bioética en revistas médicas cubanas universitarias, 2016-2020 / Scientific production on ethics and bioethics in Cuban university medical journals, 2016-2020

La bioética como disciplina ha evolucionado de manera extraordinaria en los últimos 20 años, convirtiéndose en una de las ramas de estudio más importante de la ética. Se realizó un estudio descriptivo, observacional y bibliométrico de las producciones científicas sobre ética y bioética en el periodo 2016 a 2020, con el objetivo de describir la producción científica sobre estas temáticas en cinco revistas médicas cubanas perteneciente a universidades (Revista Habanera de Ciencias Médicas, Revista Médica Electrónica, Mediciego, Medisan y Revista Información Científica). Todas las revistas fueron de Open Access por lo que se descargaron sin dificultad los artículos para el análisis de las variables, tales como: cantidad de publicaciones por años, tipo de artículos, cantidad y nacionalidad de autores, provincia, sexo de los autores. Se identificaron 49 artículos en los cinco años, de ellos: 16 fueron publicados en la revista Médica Electrónica de Matanzas; la revisión bibliográfica fue el artículo que más se publicó con el 32,66 por ciento; la mayor cantidad de autores por países correspondió a Cuba con el 90,21 por ciento del total; Santiago de Cuba aportó el mayor número de autores por provincias cubanas con un 30,23 por ciento; el 62,94 por ciento de los autores fueron féminas. El estudio bibliométrico realizado permitió describir la producción científica sobre ética y bioética en las revistas médicas cubanas universitarias objeto de estudio, con una discreta productividad al respecto(AU)

Bioethics as a discipline has evolved in an extraordinary way in the last 20 years, becoming one of the most important branches of study of ethics. A descriptive, observational and bibliometric study was carried out of the scientific productions on ethics and bioethics in the period 2016 to 2020, with the aim of describing the scientific production on these topics in five Cuban medical journals belonging to universities (Revista Habanera de Ciencias Médicas, Electronic Medical Magazine, Mediciego, Medisan and Scientific Information Magazine). All the journals were from Open Access, so the articles were downloaded without difficulty for the analysis of variables, such as: number of publications per year, type of articles, number and nationality of authors, province, sex of the authors. Forty-nine articles were identified in the five years, of which: 16 were published in the Matanzas Electronic Medical journal; the bibliographic review was the article that was published the most with 32.66 percent; the largest number of authors by country corresponded to Cuba with 90.21 percent of the total; Santiago de Cuba contributed the highest number of authors by Cuban provinces with 30.23 percent; 62.94 percent of the authors were female. The bibliometric study carried out allowed us to describe the scientific production on ethics and bioethics in the Cuban university medical journals under study, with a discrete productivity in this regard(EU)

Sobre el significado y alcance de los hitos más decisivos en el desarrollo de la bioética universal: el Convenio de Oviedo y la Declaración Universal sobre Bioética y Derechos Humanos de la UNESCO / On the meaning and scope of the most decisive milestones in the development of universal bioethics: The Oviedo Convention and the UNESCO Universal Declaration on Bioethics and Human Rights

El convenio de Oviedo y la Declaración Universal sobre Bioética y Derechos Humanos de la UNESCO son los dos instrumentos jurídicos que más han contribuido al desarrollo de la Bioética universal. Dichos documentos inscriben la bioética en el contexto de los derechos humanos internacionales .En ambos textos se ha logrado identificar y configurar un conjunto mínimo y consensuado de principios bioéticos que hunden sus raíces en los derechos humanos y en la dignidad de la persona. A pesar de su diferente naturaleza jurídica, con ambos documentos se inicia un proceso de juridificación de la bioética universal qué amplia y reorienta el horizonte y los contenidos del Derecho internacional (AU)

The Oviedo Convention and the UNESCO Universal Declaration on Bioethics and Human Rights are the two legal instruments that have contributed the most to the development of universal Bioethics. These documents inscribe Bioethics in the context of international human rights. In both texts it has been possible to identify and configure a minimum and consensual set of bioethical principles that are rooted in human rights and the dignity of the person. Despite their different legal nature, with both documents a process of juridification of universal Bioethics begins, which widens and reorients the horizon and the contents of International Law (AU)

El conveni d'Oviedo i la Declaració Universal sobre Bioètica i Drets Humans de la UNESCO són els dos instruments jurídics que més han contribuït al desenvolupament de la bioètica universal. Aquests documents inscriuen la bioètica en el context dels drets humans internacionals .En tots dos textos s'ha aconseguit identificar i configurar un conjunt mínim i consensuat de principis bioètics que enfonsen les seves arrels en els drets humans i en la dignitat de la persona. Malgrat la seva diferent naturalesa jurídica, amb tots dos documents s'inicia un procés de juridificació de la bioètica universal que àmplia i reorienta l'horitzó i els continguts del Dret internacional (AU)

Conclusiones de la Jornada Anual de Bioética 2020: la bioética ante los desafíos de la COVID-19 / Conclusions of the 2020 Annual Bioethics Conference: bioethics in the face of the challenges of COVID-19

No disponible

Covid-19 y bioética / Covid-19 and bioethics

No disponible

Pandemias, política y ciencia: el papel de la ciencia y los científicos en la solución de los conflictos derivados de la pandemia de la Covid-19 / Pandemics, politics and Science: the role of science and scientifics for the solution of the Covid-19 pandemic conflicts

La crisis de salud pública provocada por la enfermedad de Covid-19 ha recobrado el viejo debate del papel que en la toma de decisiones en nuestras democracias le corresponde a la política y a la ciencia. En este trabajo analizamos cómo, en el contexto de la pandemia, se aprecia que la política ha dejado un papel estelar a la ciencia, bien por anticiparse en ocasiones ésta a aquélla en la propuesta de soluciones, o bien por propia estrategia premeditada ante la opinión pública, habiendo sido frecuente la referencia a la opinión de los científicos como criterio decisor o, más allá, la presencia de éstos como verdaderos portavoces de la autoridad. Ello supone redescubrir la ciencia y la salud como instrumentos de poder, en términos que nos recuerdan a lo que denunciara hace casi cincuenta años Foucault con su Biopolítica

The public health crisis caused by Covid-19 disease has bring again to the public arena the old debate of the role in decision-making process of politics and science. In this paper we analyze, in the context of the current pandemics, how politics has left a stellar role for science, either because science has anticipated in its proposals to politics, or because politics has opted for it as a premeditated strategy. The references to the opinion of scientists as a decision-making criterion or, furthermore, their presence as true spokesmen for authority have been so frequent. This means rediscovering science and health as instruments of power, in terms that remind us of what Foucault denounced almost fifty years ago with his Biopolitics

Bioética, derechos humanos y Covid-19 / Bioethics, Human Rights and covid-19

En este trabajo presento una reflexión sobre el modo de conciliar los esfuerzos por combatir la pandemia de la COVID-19 con la salvaguarda de los derechos humanos, desde una perspectiva bioética. Para ello desarrollo tres puntos: el marco normativo que justifica la restricción o suspensión de derechos ante amena-zas graves para la salud pública; las declaraciones de los comités internacionales de bioética sobre el modo en que se deben proteger los derechos humanos durante la crisis de salud pública que vivimos; y un repaso de los principales derechos amenazados tanto por la crisis de salud pública como por los medios adoptados para combatirla. Antes de entrar en cada uno de esos puntos, ofrezco una nota preliminar para esclarecer determinados conceptos jurídicos y subrayar la necesidad de superar los planteamientos disyuntivos en la consideración de los derechos humanos

In this paper present, from a bioethical perspective, a reflection on how to reconcile efforts to combat the COVID-19 pandemic with the safeguard of human rights. To do this, I develop three points. First, the regulatory framework that justifies the restriction or suspension of rights in the face of serious threats to public health. Second, the declarations of the international bioethics committees on the way in which human rights should be protected during public health crisis. And third, a review of the main rights threatened both by the public health crisis and by the means adopted to combat it. Before going into each of these points, I offer a preliminary note to clarify certain legal concepts and underline the need to overcome disjunctive approaches in considering human rights

The Future of Bioethics: It Shouldn't Take a Pandemic.

The Covid-19 pandemic has concentrated bioethics attention on the "lifeboat ethics" of rationing and fair allocation of scarce medical resources, such as testing, intensive care unit beds, and ventilators. This focus drives ethics resources away from persistent and systemic problems-in particular, the structural injustices that give rise to health disparities affecting disadvantaged communities of color. Bioethics, long allied with academic medicine and highly attentive to individual decision-making, has largely neglected its responsibility to address these difficult "upstream" issues. It is time to broaden our teaching, research, and practice to match the breadth of the field in order to help address these significant societal inequities and unmet health needs.

Medico-legal and bioethical perspectives following the constitutional legitimacy of assisted suicide in Italy.

Assisted suicide is the subject of much debate throughout the world. In Italy, on 24 September 2019, the Italian Constitutional Court legitimised assisted suicide under certain conditions: self-determination capacity, irreversible illness and intense physical/psychological suffering of the patient. This historic judgement surely paved the way for an evolution of the Italian legal framework on the matter but also raised some challenging medico-legal and bioethical questions. This study aims at analysing two of the most controversial among them: the inclusion of psychiatric patients among eligible patients for assisted suicide and the position of physicians related to their right to conscientious objection.

What the HEC-C? An Analysis of the Healthcare Ethics Consultant-Certified Program: One Year in.

Efforts to professionalize the field of bioethics have led to the development of the Healthcare Ethics Consultant-Certified (HEC-C) Program intended to credential practicing healthcare ethics consultants (HCECs). Our team of professional ethicists participated in the inaugural process to support the professionalization efforts and inform our views on the value of this credential from the perspective of ethics consultants. In this paper, we explore the history that has led to this certification process, and evaluate the ability of the HEC-C Program to meet the goals it has set forth for HCECs. We describe the benefits and weaknesses of the program and offer constructive feedback on how the process might be strengthened, as well as share our team's experience in preparing for the exam.

Patient Welfare and Trust.

This January-February 2020 issue marks the start of the Hastings Center Report's fiftieth volume. The issue introduces the column Looking Back, Looking Forward, which we plan to run in this volume only. Conceived by Hastings Center fellows Douglas Diekema and Lainie Friedman Ross, the column will explore the significance of landmark publications from the first fifty years of bioethics. For the first installment, Diekema looks at the unconventional moral position Hans Jonas took in his 1969 essay "Philosophical Reflections on Experimenting with Human Subjects." In the lead article, "Trust, Risk, and Race in American Medicine," Laura Specker Sullivan contextualizes patient mistrust within a history of racism in general and in the nation's biomedical research and clinical institutions specifically. Specker Sullivan proposes ways for individual clinicians to improve relationships with distrustful patients and their families. Two commentaries provide additional insights and recommendations about the work of earning patient trust.

What is 'moral distress' in nursing? A feminist empirical bioethics study.

BACKGROUND: The phenomenon of 'moral distress' has continued to be a popular topic for nursing research. However, much of the scholarship has lacked conceptual clarity, and there is debate about what it means to experience moral distress. Moral distress remains an obscure concept to many clinical nurses, especially those outside of North America, and there is a lack of empirical research regarding its impact on nurses in the United Kingdom and its relevance to clinical practice. RESEARCH AIM: To explore the concept of moral distress in nursing both empirically and conceptually. METHODOLOGY: Feminist interpretive phenomenology was used to explore and analyse the experiences of critical care nurses at two acute care trauma hospitals in the United Kingdom. Empirical data were analysed using Van Manen's six steps for data analysis. ETHICAL CONSIDERATIONS: The study was approved locally by the university ethics review committee and nationally by the Health Research Authority in the United Kingdom. FINDINGS: The empirical findings suggest that psychological distress can occur in response to a variety of moral events. The moral events identified as causing psychological distress in the participants' narratives were moral tension, moral uncertainty, moral constraint, moral conflict and moral dilemmas. DISCUSSION: We suggest a new definition of moral distress which captures this broader range of moral events as legitimate causes of distress. We also suggest that moral distress can be sub-categroised according to the source of distress, for example, 'moral-uncertainty distress'. We argue that this could aid in the development of interventions which attempt to address and mitigate moral distress. CONCLUSION: The empirical findings support the notion that narrow conceptions of moral distress fail to capture the real-life experiences of this group of critical care nurses. If these experiences resonate with other nurses and healthcare professionals, then it is likely that the definition needs to be broadened to recognise these experiences as 'moral distress'.