The Making of a Clinical Ethicist: A Personal Tribute to Al Jonsen.

In this account, the author shares her long-standing personal and professional relationship with her mentor, Albert R. Jonsen, PhD, a prominent figure in the history of bioethics.

Constructive Disappointment and Disbelief: Building a Career in Neuroethics.

Sometimes one's greatest academic disappointments can have unexpected outcomes. This is especially true when one is trying to change career trajectories or do something that others did not take seriously. My path into neuroethics was an unexpected journey catalyzed in part by constructive disappointment and the disbelief of colleagues who thought that the work I was pursuing nearly two decades prior was a fool's errand. After all, could anyone-in his or her right mind-ever conceive of waking up a person unconscious from brain injury and getting him to speak? 1.

Dignidad y ética del cuidar en las enfermedades neurodegenerativas / Dignity and ethics of care in the neurodegenerative diseases

En el contexto de las enfermedades neurodegenerativas el médico está llamado a satisfacer, más que en otras áreas, no sólo la simple demanda de salud, sino sobre todo la necesidad de asistencia que expresa una exigencia de relación. Al esquema síntoma-diagnóstico-tratamiento-sanación, en estos casos el cuidado debe sustituir un esquema abierto e incierto en la duración y en los resultados. Se trata de un modelo llamado “medicina del incurable“, que tiene como objetivo combatir la lucha contra el malestar debido a la enfermedad en vez de la lucha contra la enfermedad. En esta perspectiva, el compromiso para garantizar una calidad de vida al enfermo significa por sí mismo atención a su dignidad, que se expresa en actuar siempre hacia él tratándole como una persona, es decir como protagonista de su vida y, por lo tanto, en reconocer su derecho a ser asistido en sus dimensiones corporal, psíquica y espiritual. En este modelo reviste especial importancia tanto dialogar con el paciente, aunque afectado desde el punto de vista cognitivo, como promover la esperanza, con la convicción de que el ser humano, si tiene el apoyo adecuado, es todavía capaz, incluso en situaciones extremadamente críticas, de transformar su experiencia en una oportunidad de crecimiento, gracias a la construcción de nuevos –aunque frágiles– equilibrios (AU)

In the context of neurodegenerative diseases the doctor is called more than in other areas to respond not only to the simple question of health, but also to the need of assistance, which implicates the necessity of relationship, too. The scheme of symptom-diagnosis-treatment-healing is to be replaced in these cases with a treatment based on an open system of uncertain length and results. It is a model called “medicine of incurable”, which aims to combat the discomfort of the disease rather than the fight against the disease. In this perspective, the commitment to ensure a quality of life to the sick in itself means attention to his dignity, which is expressed in acting towards him treating him always as a person, that is protagonist of his life, and then to recognize his right to be assisted in physical, psychological and spiritual dimensions. In this model it becomes particularly important to converse with the patient, even if affected by cognitive pathologies, as well as to stimulate hope, with the belief that human being, if properly supported, is still able, even in extremely critical situations, to make out of his personal experience a chance to grow, thanks to the construction of new balances, however weak they may be (AU)

[Neuroethics]. / Neuroética.

Neuroethics emerged as a discipline in 2012 after a World Congress organized by the Stanford University, the University of California at San Francisco (UCSF), and sponsored by the Dana Foundation. It has emerged with great force and an important interdisciplinary approach between science and philosophy. Its most relevant lines of action are the study of the ethical consequences of neuroscience research and clinical interventions; as well as the biological factors of human behavior or conduct.

La neuroética es una disciplina que surge en 2012 a partir de un Congreso Mundial organizado por las Universidades de Stanford, de California en San Francisco y patrocinado por la Fundación Dana; surge con una gran fuerza y tiene grandes acciones interdisciplinarias entre la ciencia y la filosofía. De sus líneas de acción se distinguen: una que estudia las consecuencias éticas de las investigaciones e intervenciones de las neurociencias y la que estudia las determinaciones biológicas de las diferentes conductas humanas.

[Bioethics in clinical practice]. / La bioética en la práctica clínica.

Bioethics has grown exponentially in recent decades. Its most important schools include principlism, casuistry, virtue ethics and the ethics of care. These schools are not exclusive. Within bioethics, clinical ethics addresses the inherent clinical practice ethical problems, problems which are many and very varied. Bioethics training is essential for clinicians to address these bioethics' problems. But even the professionals are trained, there are problems that cannot be solved individually and require advisory groups in clinical ethics: clinical ethics committees. These committees are also responsible for education in bioethics in health institutions. Clinical bioethics is a practical discipline, oriented to address specific problems, so its development is necessary to improve the decision making in such complex problems, inevitable problems in healthcare.

La bioética ha tenido un desarrollo exponencial en las últimas décadas. Entre sus escuelas más importantes destacan el principialismo, el casuismo, la ética de la virtud y la ética del cuidado, las cuales no son mutuamente excluyentes. Dentro de la bioética, la ética clínica aborda los problemas éticos de la práctica clínica, problemas que son numerosos y muy variados. La formación en bioética es fundamental para que los clínicos aborden adecuadamente estos problemas. Pero aunque los profesionales estén formados, existen problemas que precisan del concurso de grupos asesores en ética clínica: los comités de ética para la asistencia sanitaria. Estos comités son además los responsables de la formación en bioética en las instituciones sanitarias. La bioética clínica es una disciplina práctica, orientada a dar respuesta a problemas concretos, por lo que su desarrollo es necesario para mejorar la toma de decisiones ante estos complejos problemas, inevitables en la asistencia sanitaria.

CURRENT PERSPECTIVES OF POTTER'S GLOBAL BIOETHICS AS A BRIDGE BETWEEN CLINICAL (PERSONALIZED) AND PUBLIC HEALTH ETHICS.

In the context of modern scientific and technological developments in biomedicine and health care, and the potential consequences of their application on humans and the environment, Potter's global bioethics concept resurfaces. By actualizing Potter's original thoughts on individual bioethical issues, the universality of two of his books, which today represent the backbone of the world bioethical literature, "Bioethics--Bridge to the Future" and "Global Bioethics: Building on the Leopold Legacy", is emphasized. Potter's global bioethics today can legitimately be viewed as a bridge between clinical personalized ethics on the one hand and ethics of public health on the other.

[Lessons from the HeLa story]. / Henrietta Lacks et les cellules HeLa - Les leçons d'une histoire.

An exceptional arrangement concluded for access to the HeLa cell line sequence highlights the problems involved in studies on « old ¼ samples obtained before ethical and privacy safeguards were in place.

Homage to Henry Beecher (1904-1976).

The writings of Henry Beecher (1904-1976) have had an enormous influence on thinking and practice with respect to the ethics of medicine and clinical research. This essay examines the seminal contributions of Beecher as illustrated by four landmark articles concerning the ethics of clinical research, the placebo effect and placebo-controlled trials, the evaluation of invasive procedures, and "brain death" and vital organ transplantation. To appreciate Beecher's legacy, it is salutary to explicate the significance of his enduring contributions and to critically evaluate their limitations.

Core competencies for health care ethics consultants: in search of professional status in a post-modern world.

The American Society for Bioethics and the Humanities (ASBH) issued its Core Competencies for Health Care Ethics Consultation just as it is becoming ever clearer that secular ethics is intractably plural and without foundations in any reality that is not a social-historical construction (ASBH Core Competencies for Health Care Ethics Consultation, 2nd edn. American Society for Bioethics and Humanities, Glenview, IL, 2011). Core Competencies fails to recognize that the ethics of health care ethics consultants is not ethics in the usual sense of a morally canonical ethics. Its ethics is the ethics established at law and in enforceable health care public policy in a particular jurisdiction. Its normativity is a legal normativity, so that the wrongness of violating this ethics is simply the legal penalties involved and the likelihood of their being imposed. That the ethics of ethics consultation is that ethics legally established accounts for the circumstance that the major role of hospital ethics consultants is as quasi-lawyers giving legal advice, aiding in risk management, and engaging in mediation. It also indicates why this collage of roles has succeeded so well. This article shows how moral philosophy as it was reborn in the 13th century West led to the ethics of modernity and then finally to the ethics of hospital ethics consultation. It provides a brief history of the emergence of an ethics that is after morality. Against this background, the significance of Core Competencies must be critically reconsidered.

Nurses in the Nazi "euthanasia" program: a critical feminist analysis.

From 1940 to 1945, Nazi Germany conducted a program of killing institutionalized psychiatric patients. Known as "euthanasia," this killing program included the administration of lethal doses of medication given largely by nurses. The purposes of this article are to (1) describe the historical context in which nurses' participation in the Nazi euthanasia program occurred; (2) present a recently unsealed narrative testimony of a nurse accused of active participation in the euthanasia program; and (3) analyze this account from a critical-feminist perspective, with a focus on its epistemological salience for contemporary nursing.