Family members as gamete donors or gestational carriers: an Ethics Committee opinion.

The use of adult intrafamilial gamete donors and gestational surrogates is generally ethically acceptable when all participants are fully informed and counseled, but consanguineous arrangements or ones that simulate incestuous unions should be prohibited. Adult child-to-parent arrangements require caution to avoid coercion, and parent-to-adult child arrangements are acceptable in limited situations. Programs that choose to participate in intrafamilial arrangements should be prepared to spend additional time counseling participants and ensuring that they have made free, informed decisions. This document replaces the document of the same name, last published in 2017.

Australian human research ethics committee members' confidence in reviewing genomic research applications.

Human research ethics committees (HRECs) are evaluating increasing quantities of genomic research applications with complex ethical considerations. Genomic confidence is reportedly low amongst many non-genetics-experts; however, no studies have evaluated genomic confidence levels in HREC members specifically. This study used online surveys to explore genomic confidence levels, predictors of confidence, and genomics resource needs of members from 185 HRECs across Australia. Surveys were fully or partially completed by 145 members. All reported having postgraduate 94 (86%) and/or bachelor 15 (14%) degrees. Participants consisted mainly of researchers (n = 45, 33%) and lay members (n = 41, 30%), affiliated with either public health services (n = 73, 51%) or public universities (n = 31, 22%). Over half had served their HREC [Formula: see text]3 years. Fifty (44%) reviewed genomic studies [Formula: see text]3 times annually. Seventy (60%) had undertaken some form of genomic education. While most (94/103, 91%) had high genomic literacy based on familiarity with genomic terms, average genomic confidence scores (GCS) were moderate (5.7/10, n = 119). Simple linear regression showed that GCS was positively associated with years of HREC service, frequency of reviewing genomic applications, undertaking self-reported genomic education, and familiarity with genomic terms (p < 0.05 for all). Conversely, lay members and/or those relying on others when reviewing genomic studies had lower GCSs (p < 0.05 for both). Most members (n = 83, 76%) agreed further resources would be valuable when reviewing genomic research applications, and online courses and printed materials were preferred. In conclusion, even well-educated HREC members familiar with genomic terms lack genomic confidence, which could be enhanced with additional genomic education and/or resources.

Ética y conducta responsable en investigación: una mirada a través de la Revista Médica Hondureña / Ethics and responsible conduct in research: A look through the Revista Médica Hondureña

Antecedentes: La ética de la investigación tiene el fin de proteger los derechos, la integridad y la confidencialidad de los participantes en investigaciones. La integridad científica se refiere a la conducta responsable en la investigación. Objetivo: Describir la incorporación de la temática de ética de la investigación y la integridad científica entre las publicaciones de la Revista Médica Hondureña. Métodos: Análisis bibliométrico de las publicaciones en los números de cada volumen utilizando los términos investigación, integridad científica y ética (buscador temático http://www.bvs.hn/RMH/html5, revisión de los artículos publicados en la sección Ética y búsqueda temática por personal de la Biblioteca Médica Nacional). Resultados: De 54 artículos, en 28 (51.8%), 1996-2019, se hace referencia a la ética de la investigación y/o integridad científica. Hasta 2010, se habían publicado tres artículos. El tipo de artículo fue sección Ética 17, Editorial 5, Original 3, Opinión 2 y Especial 1. De acuerdo al área temática general, los artículos abordaron Promoción 2, Capacitación 2, Aplicación de los principios éticos de la investigación 16, Comités de ética en investigación 4 e Integridad científica 4. Discusión: A través de la Revista Médica Hondureñahemos visualizado los avances en investigación a través de la aplicación de buenas prácticas como lo es la ética de la investigación y la integridad científica. Ya que la publicación es el final del ciclo de la investigación, es necesario impulsar su fortalecimiento desde otros espacios de gestión. En Honduras existe la necesidad urgente de contar con un sistema nacional de investigación para la salud...(AU)

Investigación clínica a pie de cama. Sepsis / Clinical research at the bedside. Sepsis / Recerca clínica a peu de llit. Sèpsia

La investigación clínica en sepsis es una prioridad y una obligación cuyo objetivo primordial ha de ser tanto el conocimiento de su compleja fisiopatología como la búsqueda de herramientas diagnósticas precoces y eficaces para mejorar el tratamiento y disminuir la tasa de mortalidad. Los principios éticos de la investigación biomédica ayudan a determinar el equilibrio entre el avance de la ciencia y la protección de los derechos y bienestar de los sujetos de la investigación

Clinical research in sepsis is a priority and an obligation whose primary objective must be both knowledge of its complex pathophysiology and the search for early and effective diagnostic tools to improve treatment and reduce the mortality rate. The ethical principles of biomedical research help to determine the balance between the advancement of science and the protection of the rights and welfare of research subjects

La recerca clínica en la sèpsia és una prioritat I una obligació l'objectiu primordial de la qual ha de ser tant el coneixement de la seva complexa fisiopatología, com la cerca d'eines diagnòstiques precoces I eficaces per a millorar-ne el tractament I disminuir la taxa de mortalitat. Els principis ètics de la recerca biomèdica ajuden a determinar l'equilibri entre l'avanç de la ciència I la protecció dels drets I benestar dels subjectes de la recerca

Ethics in embryo research: a position statement by the ASRM Ethics in Embryo Research Task Force and the ASRM Ethics Committee.

Scientific research using human embryos advances human health and offspring well-being and provides vital insights into the mechanisms for reproduction and disease. Research involving human embryos is ethically acceptable if it is likely to provide significant new knowledge that may benefit human health, well-being of the offspring, or reproduction.

¿Modificar o no modificar el genoma de nuestra descendencia? Algunos comentarios a raiz de la Declaración del Comité de Bioética de España sobre la edición genómica en humanos / To modify or not to modify the genome of our offspring? Some comments following the Declaration of the Spanish Bioethics Committee on genomic editing in humans / Modificar o no modificar el genoma de la nostra descendència?. Alguns comentaris arran de la Declaració del Comitè de Bioètica d'Espanya sobre l'edició genòmica en humans

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

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

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

Institutional Ethics Committees.

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.

Declaración sobre: Ética y Responsabilidad en la Sostenibilidad del Sistema Nacional de Salud / Declaration on ethics and responsibility in the sustainability of the Spanish National Heatlh System

Representantes de Comités de Bioética autonómicos y del Comité de Bioética de España reunidos en Zaragoza con fecha de 16 de noviembre de 2016 elaboraron una declaración para contribuir a la reflexión pública sobre la sostenibilidad del Sistema Nacional de Salud a partir de los valores éticos que deben impulsar la responsabilidad de todos los agentes implicados en su desarrollo. Manteniéndose la vigencia de las circunstancias concurrentes en su redacción inicial, la reunión de la "Red de Consejos, Comisiones y Comités autonómicos de Bioética y del Comité de Bioética de España" (REDECABE) celebrada en Logroño el día 26 de octubre de 2018 ratificó su plena vigencia como herramienta para la sostenibilidad del Sistema Nacional de Salud, instando su máxima difusión tanto en lengua española como inglesa

Representatives from Autonomous Communities' Bioethics Committees and the National Bioethics Committee met in Zaragoza on 16 November 2016 to draft a joint statement to contribute to publicly reflecting upon the sustainable nature of the National Health System, taking into consideration the ethical values that should promote the responsibility of all actors involved in their development. Since circumstances of the first draft remain, the meeting of the Network of Bioethics Councils, Commissions and Committees of Autonomous Regions (REDCABE), held Logroño on 26 October 2018, ratified the full validity of the declaration as a tool for sustainability of the National Health System, aiming for its dissemination in as many fields as possible, both in Spanish and English language

Misconduct in third-party assisted reproduction: an Ethics Committee opinion.

Professionals who discover misconduct or other undisclosed information that would be material to the participation of another party (such as a donor, gestational carrier, intended parent, or lawyer) in an assisted reproductive technology arrangement should encourage disclosure to that party. In some instances, it is ethically permissible for the physician either to disclose material information to the affected party or to decline to provide care. In all cases involving the legal status or rights of the parties, referral to legal professionals is advised. This document replaces the document of the same name, last published in 2014 (Fertil Steril 2014;101:38-42).

Consideration of the gestational carrier: an Ethics Committee opinion.

Intended parents engage with gestational carriers in an attempt to achieve their personal reproductive goals. All gestational carriers have a right to be fully informed of the risks as well as the contractual and legal aspects of the gestational-carrier process. Gestational carriers have autonomy in making their own decisions regarding medical care and should be free from undue influences by the stakeholders involved. They should have free access to and receive psychological evaluation and counseling before, during, and after participating. Gestational carriers require independent legal counsel regarding the execution of contracts. This document replaces the document of the same name, last published in 2013 (Fertil Steril 2013;99:1838-1841).

Disclosure of sex when incidentally revealed as part of preimplantation genetic testing (PGT): an Ethics Committee opinion.

Clinics may develop a policy to disallow selecting which embryos to transfer based on sex and choose to use only embryo quality as selection criteria. Clinics may also develop a policy to use randomization to select those embryos for transfer if more embryos suitable for transfer are available than can be transferred.

Informing offspring of their conception by gamete or embryo donation: an Ethics Committee opinion.

This document discusses the ethical implications of informing offspring about their conception using gamete or embryo donation. It replaces the 2013 ASRM Ethics Committee document of the same name (Fertil Steril 2013;100:45-9).

Ethical Principles, Process, and the Work of Bioethics Commissions.

Shortly after the Presidential Commission for the Study of Bioethical Issues was constituted in 2010 and days before the commission members were to join a conference call to discuss possible topics for their deliberation, Craig Venter held a press conference announcing that his lab had created a synthetic chromosome for a species of mycoplasma and had inserted this genetic material into organisms of another species of mycoplasma (the genes of which had been deactivated), transforming the host species into the donor species. While not overtly claiming to have "created life in the test tube," Venter's publicity seemed cleverly designed to provoke the media into reporting his discovery in just that way. The resulting uproar caused President Obama to give his new bioethics commission the assignment of investigating the ethics of the emerging field of synthetic biology. The commission went right to work. It formed working groups to deliberate about parts of the report, feeding ideas and language to the staff members who would do the actual writing, and then present the working group suggestions to the commission as a whole for public deliberation at open meetings. One of those working groups was charged with coming up with ethical principles that would guide the analysis. Having served as a member of that working group, I report here on the process by which these principles emerged and reflect upon the suitability of that process for the work of public bioethics commissions.

Avances y retos de las Comisiones Estatales de Bioética en México / State Bioethics Commissions in Mexico, Achievements and Challenges

Se han realizado estudios comparativos sobre comisiones nacionales de bioética, comités hospitalarios de bioética y de ética en investigación de diversos países; sin embargo existen pocos datos sobre la aplicación de la bioética a nivel subnacional. Este trabajo ofrece una aproximación a la evolución de las Comisiones Estatales de Bioética en México, se identifican como actividades de su quehacer acciones de capacitación, difusión, asesoría y promoción de la bioética en la atención médica y la vinculación con la Comisión Nacional de Bioética y otras instituciones de salud y educativas. Las Comisiones Estatales ayudan a fomentar la bioética a nivel subnacional y a extender la atención integral en situaciones complejas en el ámbito médico e investigativo (AU)

Comparative studies have been developed on the infrastructure on bioethics of different countries, comprised mainly by national commissions, hospital bioethics and research ethics committees; however, there are few data on the application of bioethics at the subnational level. This work offers an approximation to the evolution of the State Commissions of Bioethics in Mexico and accounts for their work in outreach, education, and counseling, as well as entrenching a culture of bioethics in medical care and networking with the National Bioethics Commission and other health and educational institutions. State Commissions help to promote bioethics at the subnational level and to foster comprehensive care in complex medical and research settings (AU)

[Neonatal palliative care at home: Contribution of the regional pediatric palliative care team]. / Soins palliatifs néonatals à domicile : apport des équipes régionales de soins palliatifs pédiatriques.

The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks.

Who should Decide for the Unrepresented?

Unrepresented patients lack the capacity to make medical decisions for themselves, have no clear documentation of preferences for medical treatment, and have no surrogate decision maker or obvious candidate for that role. There is no consensus about who should serve as the decision maker for these patients, particularly regarding whether to continue or to limit life-sustaining treatment. Several authors have argued that ethics committees should play this role rather than the patient's treating physician, a common current default. We argue that concerns about the adequacy of physicians as surrogates are either empirically unfounded or apply equally to ethics committees. We suggest that physicians should be the primary decision maker for the unrepresented because of their fiduciary duties toward their patients. As part of the process of fulfilling these duties, they should seek the advice of third parties such as ethic committees; but final end-of-life decision-making for the unrepresented should rest with the treating physician.

Fraude científico en las publicaciones o el «juego de policías y ladrones» / Fraud in scientific research papers: playing the «cops and robbers» game

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