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Rev. bioét. derecho ; (47): 55-75, nov. 2019.
Artículo en Español | IBECS | ID: ibc-184866


La modificación genética de la línea germinal humana presenta grandes problemas de carácter ético y jurídico. El Comité de Bioética de España ha publicado una Declaración ofreciendo una respuesta a estos retos. Este artículo analiza críticamente su postura, subrayando la escasa consistencia de cualquier argumento que pretenda censurar cualquier forma de mejora en la salud humana. Con tal fin, se exponen cuestiones como la relación entre dignidad humana y modificación genética o la inconsistencia de la apelación al argumento de la pendiente resbaladiza en este contexto. Asimismo, se afirma la necesidad de trazar distinciones entre las intervenciones que afectan a bienes absolutos, como la salud, y los que no lo son

La modificació genètica de la línia germinal humana presenta enormes problemes de caràcter ètic i jurídic. El Comitè de Bioètica d'Espanya ha publicat una Declaració oferint una resposta a aquests reptes. Aquest article analitza críticament la seva postura, subratllant l'escassa consistència de qualsevol argument que pretengui censurar qualsevol forma de millora en la salut humana. Amb tal fi, s'exposen qüestions com la relació entre dignitat humana i modificació genètica o la inconsistència de l'apel•lació a l'argument del pendent relliscós en aquest context. Així mateix, s'afirma la necessitat de traçar distincions entre les intervencions que afecten béns absoluts, com la salut, i els que no ho són

Genetic modification of the human germline presents major ethical and legal problems. The Spanish Bioethics Committee has published a Declaration offering a response to these challenges. This article critically analyzes its position, underlining the scarce consistency of any argument that attempts to censor any form of improvement in human health. To this end, questions such as the relationship between human dignity and genetic modification or the inconsistency of the appeal to the argument of the slippery slope in this context are raised. At the same time, this paper highlights the need to draw distinctions between interventions that affect absolute goods, such as health, and those that are not

Humanos , Edición Génica/ética , Genoma Humano , Proyecto Genoma Humano/ética , Bioética , Comités de Ética/normas , Comités de Ética/ética , Comités de Ética/organización & administración , Comités de Ética Clínica/ética , España , Investigaciones con Embriones/ética , Creación de Embriones para Investigación/ética , Ingeniería Genética/ética , Terapia Genética/ética
Transplant Proc ; 51(9): 2899-2901, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31606182


At times, clinical expertise may not be sufficient to find a way out of a moral impasse, especially in the context of end-of-life and organ transplantation decisions. Advances in medical knowledge and technology, and highly pluralistic and multicultural societies, have led to the emergence of new ethical problems in daily clinical practice along with the need to manage them in a prompt and effective manner. Clinical ethics developed in the late 1970s and early 1980s in North American health care contexts with the aim of identifying, analyzing, and attempting to resolve ethical conflicts and dilemmas at the patient's bedside. At present, only a few regions in Italy have established clinical ethics committees, and Italy may count on a very small number of clinical ethics services fully devoted to ethics case consultation, guidelines development, and the education of health care providers and citizens. Despite this situation, one has to acknowledge both the increasing request for ethics support coming from health care providers who experience an "ethical vacuum" in the Italian health care system and the cultural change that is affecting Italy nowadays. By highlighting clinical examples and sharing experiences, we show and encourage the potential benefits of establishing clinical ethics services in Italian health care contexts.

Comités de Ética Clínica , Ética Clínica , Trasplante de Órganos/ética , Cuidado Terminal/ética , Humanos , Italia , Cuidado Terminal/métodos
Pediatrics ; 143(5)2019 05.
Artículo en Inglés | MEDLINE | ID: mdl-31036674


In hospitals throughout the United States, institutional ethics committees (IECs) have become a standard vehicle for the education of health professionals about biomedical ethics, for the drafting and review of hospital policy, and for clinical ethics case consultation. In addition, there is increasing interest in a role for the IEC in organizational ethics. Recommendations are made about the membership and structure of an IEC, and guidance is provided for those serving on an IEC.

Bioética , Comités de Ética/ética , Personal de Salud/ética , Hospitales/ética , Bioética/educación , Comités de Ética/normas , Comités de Ética Clínica/ética , Comités de Ética Clínica/normas , Personal de Salud/educación , Personal de Salud/normas , Hospitales/normas , Humanos
J Clin Ethics ; 30(1): 35-45, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-30896442


In this article, we first review the development of clinical ethics in pediatrics in the United States. We report that, over the last 40 years, most children's hospitals have ethics committees but that those committees are rarely consulted. We speculate that the reasons for the paucity of ethics consults might be because ethical dilemmas are aired in other venues. The role of the ethics consultant, then, might be to shape the institutional climate and create safe spaces for the discussion of difficult and sometimes contentious issues. Finally, we report how pediatric clinical ethics has evolved differently in a number of other countries around the world.

Ética Clínica , Pediatría , Niño , Eticistas , Comités de Ética , Comités de Ética Clínica , Ética Institucional , Humanos , Internacionalidad , Pediatría/ética , Estados Unidos
Ann Palliat Med ; 8(Suppl 1): S22-S29, 2019 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-30525773


The aims of this article are twofold: (I) provide a general overview of perinatal bereavement services throughout the healthcare system and (II) identify future opportunities to improve bereavement services, including providing resources for the creation of standardized care guidelines, policies and educational opportunities across the healthcare system. Commentary is provided related to maternal child services, the neonatal intensive care unit (NICU), prenatal clinics, operating room (OR) and perioperative services, emergency department (ED), ethics, chaplaincy and palliative care services. An integrated system of care increases quality and safety and contributes to patient satisfaction. Physicians, nurses and administrators must encourage pregnancy loss support so that regardless of where in the facility the contact is made, when in the pregnancy the loss occurs, or whatever the conditions contributing to the pregnancy ending, trained caregivers are there to provide bereavement support for the family and palliative symptom management to the fetus born with a life limiting condition. The goal for respectful caregiving throughout an entire hospital system is achievable and critically important.

Aflicción , Prestación Integrada de Atención de Salud/organización & administración , Cuidados Paliativos/organización & administración , Aborto Espontáneo/psicología , Atención Ambulatoria/organización & administración , Servicio de Capellanía en Hospital/estadística & datos numéricos , Comités de Ética Clínica/estadística & datos numéricos , Muerte Fetal , Cuidados Paliativos al Final de la Vida/organización & administración , Humanos , Cuidado Intensivo Neonatal/organización & administración , Grupo de Atención al Paciente/organización & administración , Atención Perinatal/organización & administración , Atención Prenatal/organización & administración , Relaciones Profesional-Familia , Apoyo Social
G Ital Nefrol ; 35(6)2018 Dec.
Artículo en Italiano | MEDLINE | ID: mdl-30550032


Transplantation represents modernity thus the laws regulating the procedure should be continuously renovated and remodeled in order to take full advantage of progress. The debate is about Law no. 219, December 22, 2017 and on Law no. 222, April 1, 1999. The quests are a) about the possibility to modify the first so that people deciding on how they want to die, may also decide about their willingness to allow the removal of their organs for transplantation and b) the possibility for donor families and recipients to have contacts after transplantation in the case both sides agree. Questions were emailed to the constitutionalist Francesco Paolo Casavola, immediate Past President of the National Committee for Bioethics, and to the philosophers Remo Bodei and Aldo Masullo. Their answers received by September 16, support the idea a) to include in the Law no. 219, 2017 the possibility to decide not only on the modality one wants to die but also on the possibility to allow his own organs to be removed for transplantation and b) to liberalize contacts between donor families and recipients when both side agree. For both changes there is enough evidence of their feasibility-necessity. The answers related to contacts between donor families and recipients support the decision of the National Committee for Bioethics on September 27, 2018. Professor Casavola also suggests that contacts should organized and supervised by the ethical committees of the hospitals where the transplantation procedure is accomplished.

Derecho a Morir/legislación & jurisprudencia , Donantes de Tejidos/legislación & jurisprudencia , Obtención de Tejidos y Órganos/legislación & jurisprudencia , Receptores de Trasplantes/legislación & jurisprudencia , Confidencialidad , Toma de Decisiones , Eticistas , Comités de Ética Clínica , Testimonio de Experto , Familia , Humanos , Relaciones Interpersonales , Propiedad/legislación & jurisprudencia , Filosofía , Política , Derecho a Morir/ética , Donantes de Tejidos/ética , Obtención de Tejidos y Órganos/ética
Georgian Med News ; (283): 171-175, 2018 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-30516517


Making appropriate medical decisions in the best interest of the patient and in a line with the patient's autonomy, rights, dignity and plurality of values, are very important. In order to reach those goals and develop patient-oriented health service, Clinical Ethics Committees (CECs) support could make a great contribution. European countries (Netherland, Belgium, Italy, Germany, Norway, UK) are experiencing an exponential rise in the number of CECs as a mechanism to address the new ethical dilemmas in clinical settings, however the practice of CECs are facing barriers in transitional countries in central, eastern, and southeastern Europe. Despite the differences across the European countries we have found many similarities in groundwork trends of CECs development in studied countries, which have the most important impetus on the implementation and development of CECs. The most important and common ones are: enforcement of human rights doctrine, pluralistic civil movement, progressive development of medical science and new technologies, transfer of human rights movement in health care, development of bioethics, CECs educational capacity building, arising of complex moral, legal and ethical dilemmas in physicians' daily clinical practice, shifting medical care paradigm from the physician's single obligation to the shared responsibilities with respect of patient's rights, autonomy and dignity. Exploring those trends will lead to the opportunity to identify the most important factors that impact on the strengthening of the CECs practice in transitional countries as well.

Bioética , Toma de Decisiones , Prestación de Atención de Salud/ética , Comités de Ética Clínica/ética , Médicos , Europa (Continente) , Médicos/ética , Conducta Social
Cuad. bioét ; 29(97): 221-231, sept.-dic. 2018.
Artículo en Inglés | IBECS | ID: ibc-175374


In 2017, the Italian National Bioethics Committee (INBC) released an opinion paper titled "Clinical ethics committees". Said document advocates for the creation of "clinical bioethics committees" in every suitable setting and lays out a set of guidelines aimed at regulating such committees' functions. The recommendations deal primarily with the independence, requirements for counselling, structures, composition, tasks, placement, coordination, requisite competences, regulations. In the opinion's contents there are: a) the need to entrust counselling and training on ethical issues within clinical practice to different committees than those that deal with ethical assessments of scientific trials and experimentation; b) the laying out of all the various functions and related competencies required of the ethics committees' members; c) the necessity that all counselling practices be carried out by each committee as a whole, rather than by a single expert member; d) Committee's independence. The authors elaborate on each one of the above mentioned aspects and highlight the importance of INBC's recommendations in order to improve the quality standards of care delivered "to each patient's bed"

En el 2017, el Comité Nacional Italiano de Bioética (CNIB) publicó un artículo de opinión titulado "Comités de Ética Clínica". Dicho documento aboga por la creación de "comités clínicos de bioética" en cada entorno adecuado, y establece un conjunto de directrices destinadas a regular las funciones de tales comités. Las recomendaciones se refieren principalmente a la independencia, los requisitos para el asesoramiento, las estructuras, la composición, las tareas, la ubicación, la coordinación, las competencias requeridas, las regulaciones. En los contenidos de la opinión se plantean: a) la necesidad de confiar el asesoramiento y la capacitación en cuestiones éticas dentro de la práctica clínica a diferentes comités que aquellos que se ocupan de las evaluaciones éticas de los ensayos científicos y la experimentación; b) la presentación de las diversas funciones y competencias requeridas por los miembros de los comités de ética; c) la necesidad de que todas las prácticas de asesoramiento sean llevadas a cabo por cada comité como un todo, y no por un solo miembro experto; d) independencia del comité. Los autores detallan cada uno de los aspectos mencionados anteriormente y resaltan la importancia de las recomendaciones de CNIB para mejorar los estándares de calidad de la atención brindada "a la cabecera de la cama de cada paciente"

Humanos , Comités de Ética Clínica/organización & administración , Ética Clínica , Miembro de Comité , Comités de Ética Clínica/normas , Comités de Ética Clínica/tendencias , Italia
Cuad Bioet ; 29(97): 221-231, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30380897


In 2017, the Italian National Bioethics Committee (INBC) released an opinion paper titled ″Clinical ethics committees″. Said document advocates for the creation of ″clinical bioethics committees″ in every suitable setting and lays out a set of guidelines aimed at regulating such committees' functions. The recommendations deal primarily with the independence, requirements for counselling, structures, composition, tasks, placement, coordination, requisite competences, regulations. In the opinion's contents there are: a) the need to entrust counselling and training on ethical issues within clinical practice to different committees than those that deal with ethical assessments of scientific trials and experimentation; b) the laying out of all the various functions and related competencies required of the ethics committees' members; c) the necessity that all counselling practices be carried out by each committee as a whole, rather than by a single expert member; d) Committee's independence. The authors elaborate on each one of the above mentioned aspects and highlight the importance of INBC's recommendations in order to improve the quality standards of care delivered ″to each patient's bed″.

Comités de Ética Clínica/organización & administración , Comités de Ética Clínica/tendencias , Bioética , Italia
BMC Med Ethics ; 19(1): 76, 2018 08 14.
Artículo en Inglés | MEDLINE | ID: mdl-30107797


BACKGROUND: The 1981 Uniform Determination of Death Act (UDDA) established the validity of both cardio-respiratory and neurological criteria of death. However, many religious traditions including most forms of Haredi Judaism (ultra-orthodox) and many varieties of Buddhism strongly disagree with death by neurological criteria (DNC). Only one state in the U.S., New Jersey, allows for both religious exemptions to DNC and provides continuation of health insurance coverage when an exception is invoked in its 1991 Declaration of Death Act (NJDDA). There is yet no quantitative or qualitative data on the frequencies of religious exemptions in New Jersey. This study gathered information about the frequency of religious exemptions and policy in New Jersey that was created out of respect for religious beliefs. METHODS: Literature and internet searches on topics related to religious objections to DNC were conducted. Fifty-three chaplains and heads of bioethics committees in New Jersey hospitals were contacted by phone or email requesting a research interview. Respondents answered a set of questions about religious exemptions to DNC at the hospital where they worked that explored the frequency of such religious exemptions in the past five years, the religious tradition indicated, and whether any request for a religious exemption had been denied. This study was approved by the Northeastern University Institutional Review Board (IRB #: 16-03-15). RESULTS: Eighteen chaplains and bioethics committee members participated in a full research interview. Of these, five reported instances of religious exemptions to DNC occurring at the hospital at which they worked for a total of approximately 30-36 known exemptions in the past five years. Families sought religious exemptions because of faith in an Orthodox Judaism tradition and nonreligious reasons. No failed attempts to obtain an exemption were reported. CONCLUSIONS: Religious exemptions to DNC in New Jersey do occur, although very infrequently. Prior to this study, there was no information on their frequency. Considering religious exemptions do occur, there is a need for national or state policies that addresses both religious objections to DNC and hospital resources. More information is needed to better understand the impact of granting religious exemptions before new policy can be established.

Muerte Encefálica/diagnóstico , Muerte , Religión y Medicina , Comités de Ética Clínica/estadística & datos numéricos , Humanos , Judaísmo , Legislación Médica , New Jersey
J Clin Ethics ; 29(2): 150-7, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30130038


The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work.

Eticistas/educación , Comités de Ética Clínica , Consultoría Ética/normas , Humanos , Objetivos Organizacionales , Sociedades Médicas , Estados Unidos
Trials ; 19(1): 364, 2018 Jul 09.
Artículo en Inglés | MEDLINE | ID: mdl-29986761


BACKGROUND: Latest research demonstrates a significant improvement in stress-related symptoms in psychological disorders as a result of exercise training (ET). Controlled clinical trials further validate the significance of ET by demonstrating lower salivary cortisol levels in patients with post-traumatic stress disorder (PTSD) after intervention. A significant change in cortisol and dehydroepiandrosterone (DHEA) levels can already be found after an 8-12-week ET program. The proposed study aims to investigate the impact of an 8-week ET on PTSD symptoms and changes in cortisol levels in a juvenile refugee sample from the Democratic Republic of the Congo (DRC) at an Ugandan refugee settlement. It is the first to implement an ET intervention in a resource-poor, post-conflict setting. METHODS/DESIGN: In a randomized controlled trial, 198 adolescent participants aged 13-16 years from the DRC who, suffer from PTSD, will be investigated. The participants are based at the Nakivale refugee settlement, an official refugee camp in Uganda, Africa, which is among the largest in the world. The participants will be randomized into an Exercise Training (ET) group with a maximum heart rate (HRmax) of > 60%, an Alternative Intervention (AI) group with low-level exercises, and a Waiting-list Control (WC) group. After the 8-week interventional phase, changes in cortisol awakening response (CAR) and DHEA in the ET group that correspond to an improvement in PTSD symptoms are expected that remain at follow-up after 3 months. DISCUSSION: To date, there is no controlled and reliable longitudinal study examining the effects of an ET program on symptom severity in individuals with PTSD that can be explained with a harmonization of cortisol secretion. The presented study design introduces an intervention that can be implemented with little expenditure. It aims to provide a promising low-threshold and cost-effective treatment approach for the application in resource-poor settings. TRIAL REGISTRATION: German Trials Register, ID: DRKS00014280 . Registered prospectively on 15 March 2018.

Terapia por Ejercicio , Hidrocortisona/sangre , Ensayos Clínicos Controlados Aleatorios como Asunto , Refugiados , Trastornos por Estrés Postraumático/terapia , Adolescente , Deshidroepiandrosterona/sangre , Comités de Ética Clínica , Ejercicio , Humanos , Sistema Hipotálamo-Hipofisario/fisiología , Sistema Hipófiso-Suprarrenal/fisiología , Proyectos de Investigación , Trastornos por Estrés Postraumático/sangre , Resultado del Tratamiento
Rev. clín. esp. (Ed. impr.) ; 218(3): 142-148, abr. 2018.
Artículo en Español | IBECS | ID: ibc-174246


El desarrollo de la ética clínica hospitalaria en España depende casi exclusivamente de los comités de ética asistencial. Estos han sido criticados por su falta de cercanía a la cabecera del paciente en los conflictos éticos cotidianos y por su escasa operatividad práctica, que se refleja en el escaso número de consultas que reciben. En el presente trabajo reflexionamos sobre la necesidad de modificar el modelo actual de atención en ética clínica para reactivarlo y llamar la atención sobre el papel primordial del internista como motor de dicho cambio. Para ello proponemos un modelo en que los comités de ética asistencial incorporen consultores de ética, mejor posicionados para la discusión de casos a la cabecera del enfermo. Seguidamente analizamos las características que dichos consultores deberían poseer

The development of hospital clinical ethics in Spain depends almost exclusively on the healthcare ethics committees, which have been criticized for a lack of proximity to the patient's bedside in day-to-day ethical conflicts and for their scarce practical operation, reflected in the low number of consultations they receive. In this study, we reflect on the need to change the current healthcare model in clinical ethics so as to reactivate it and call attention to the essential role of internists as the engine for this change. To this end, we propose a model in which the healthcare ethics committees incorporate ethics consultants, who are better positioned to discuss cases at the patient's bedside. We then analyse the characteristics that these consultants should have

Humanos , Administración de la Práctica Médica/ética , Prácticas Clínicas/ética , Medicina Interna/ética , Medicina Interna , Comités de Ética Clínica/organización & administración , Comités de Ética Clínica/normas , Consultores , Prestación de Atención de Salud/ética
Pediatrics ; 141(3)2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-29490907


A 3-month-old boy with failure to thrive was referred to a nephrology clinic after a diagnostic workup for failure to thrive revealed a serum urea nitrogen level of 95 mg/dL and creatinine level of 3.6 mg/dL. A renal ultrasound revealed marked bilateral hydronephrosis with little remaining renal cortex in either kidney. A voiding cystourethrogram revealed evidence of posterior urethral valves. The child had no evident comorbidities. Fulguration of the valves was successfully performed but did not lead to improvement in kidney function. The nephrologists recommended the initiation of dialysis with the hope that the child would be able to receive a kidney transplant in the future. After careful consideration, the family stated that they did not want this child to suffer with a lifetime of dialysis and transplant care. They were also concerned about the impact of this child's illness on their other 2 children and their family. They requested that their son be provided with palliative care only. Experts in nephrology, bioethics, and critical care discuss the ethical issues raised by this parental request.

Comités de Ética Clínica , Hemodiálisis en el Domicilio/ética , Fallo Renal Crónico/terapia , Cuidados Paliativos/ética , Padres/psicología , Negativa del Paciente al Tratamiento , Costo de Enfermedad , Toma de Decisiones , Humanos , Lactante , Masculino