Medicina familiar, principios bioéticos y final de la vida en Colombia / Family Medicine, Bioethical Principles and End of Life in Colombia

Introducción: La medicina familiar, dentro de su enfoque biopsicosocial, acoge la valoración integral de cada individuo en su curso de vida, donde es indispensable integrar todos los principios bioéticos para brindar una atención adecuada, oportuna y humanizada. El abordaje del especialista en medicina familiar sobre el final de vida debe estar ligado a estos aspectos, lo que permite ampliar la relación clínica desde el paciente hasta su núcleo familiar y su equipo en salud. Objetivo: Discutir los principios bioéticos desde una perspectiva integrativa a partir de un recorrido por los principales apartados legales que se han desarrollado en Colombia desde la sentencia C-239 de 1997, en relación con el derecho a morir dignamente. Métodos: Se realizó una revisión narrativa mediante la búsqueda en PubMed, Elsevier, Scielo y la normativa del contexto colombiano. Conclusiones: La disponibilidad de la información permite tener claridad sobre los conceptos al final de vida y el quehacer de los profesionales de la salud en esta etapa, que permita brindar al paciente y a su familia información clara y alternativas en su manejo integral, que dignifique la relación médico-paciente-familia-equipo de salud(AU)

Introduction: Family medicine, within its biopsychosocial approach, welcomes the comprehensive assessment of each individual in his or her life course, where it is essential to integrate all bioethical principles to provide adequate, timely and humanized care. The approach of the family medicine specialist at the end of life should be linked to these aspects, which allows extending the clinical relationship of the patient to the family nucleus and the health team. Objective: To discuss bioethical principles from an integrative perspective based on the review of the main legal paragraphs that have been developed in Colombia since the C-239 ruling of 1997 in relation to the right to die with dignity. Methods: A narrative review was carried out through searches in PubMed, Elsevier, SciELO and in the normativity of the Colombian context. Conclusions: The availability of information allows clarity about the concepts at the end of life and the work of health professionals at this stage, which allows providing the patient and family with clear information and alternatives in their comprehensive management, which dignifies the doctor-patient-family-health team relationship(AU)

Management of Gender Determination of Newborns and Children with Disorders of Sex Development Using a Multidisciplinary Approach: An Exploratory Study of Islamic Perspective in Malaysia.

Management of newborns with disorders of sex development (DSD), especially in deciding the need for a sex assignment surgery, is a complex matter. It is associated with many bioethical issues, such as concerns about the rights and welfare of the newborns and the reliability of parents' consent to the paternalistic disposition of physicians in making the best decisions. This paper, containing interviews with six medical experts and three religious' experts, aims to raise awareness of the multidisciplinary approach, which uses a combination of medicine, religion, and ethics in managing children with DSD, particularly in Malaysia, to avoid unnecessary psychological, biological, emotional, and societal ramifications.

Bioética de proteção: fundamentos e perspectiva / Bioethics of protection: fundamentals and perspective / Bioética de protección: fundamentos y perspectiva

Resumo Este artigo busca promover uma reflexão sobre a perspectiva da bioética de proteção e explicitar suas ferramentas, por meio de levantamento bibliográfico ancorado nos marcos teóricos de seus principais idealizadores e da técnica de leitura informativa, que pretende identificar a temática e as principais ideias envolvidas. Para tanto, apresenta-se, inicialmente, a proteção como princípio bioético mediante um aprofundamento na origem, na definição e na análise dos termos "vulnerabilidade", "suscetibilidade" e "vulneração". Na sequência, busca-se apresentar as abordagens bioéticas voltadas ao "princípio de proteção". Por fim, argumenta-se que a bioética de proteção funciona como paradigma para apreensão, análise e resolução de conflitos morais em saúde pública, revelando-se uma abordagem fundamental nesse campo, haja vista seu desafio de lidar com a tensão entre os âmbitos individual e coletivo.

Abstract This article seeks to reflect on the perspective of bioethics of protection and explain its tools, by using a bibliographic survey based on the theorical marks of its main idealizers and the informative reading technique, which seeks to identify the thematic and the main ideas involved. To that end, we first present protection as a bioethical principle by going deeper into the origin, to the definition and the analysis of the terms "vulnerability", "susceptibility" and "injury". Then, we seek to present the bioethical approaches regarding the "principle of protection". Finally, we argue that bioethics of protection works as a paradigm for the apprehension, analysis, and resolution of moral conflicts in public health, revealing itself a fundamental approach in this field, considering its challenge is facing the tension between the individual and the collective spheres.

Resumen Este artículo pretende fomentar la reflexión sobre la perspectiva de la bioética de protección y explicar sus herramientas a partir de una recopilación bibliográfica realizada en los marcos teóricos de sus principales creadores y la técnica de lectura informativa, con el objetivo de identificar la temática y las ideas principales involucradas. Para ello, primero se presenta la protección como un principio bioético a través de un estudio en profundidad del origen, definición y análisis de los términos "vulnerabilidad", "susceptibilidad" y "vulneración". Después, se exponen los enfoques bioéticos relativos al "principio de protección". Y, por último, se argumenta que la bioética de protección funciona como paradigma para aprehender, analizar y resolver los conflictos morales en salud pública, demostrando ser un abordaje fundamental en este campo teniendo en cuenta su desafío de lidiar con la tensión entre lo individual y lo colectivo.

Desafios na comunicação de más notícias em unidade de terapia intensiva pediátrica / Challenges in breaking bad news in a pediatric intensive care unit / Desafíos en la comunicación de malas noticias en una unidad de cuidados intensivos pediátrica

Resumo Comunicar más notícias é tarefa desafiadora na prática médica, motivo pelo qual o tema tem adquirido relevância na formação de futuros profissionais. Nas unidades de terapia intensiva, esse tipo de comunicação se mescla a múltiplas situações, a exemplo do manejo de informações envolvendo o agravamento do estado clínico e a possibilidade de morte iminente, especialmente em casos pediátricos. Diante desse contexto, o objetivo desta pesquisa foi compreender os desafios enfrentados por médicos intensivistas na comunicação de más notícias, tendo como eixo de análise algumas questões problematizadas no campo das discussões bioéticas. Os resultados apontaram a necessidade de preparo técnico e pessoal do médico diante desse importante desafio, haja vista que a participação da criança no processo de tratamento ainda é limitada, realidade que dificulta o compartilhamento das informações e, consequentemente, o exercício da autonomia.

Abstract Breaking bad news is a challenging task in medical practice, reason why this topic's relevance has grown in the training of future professionals. In intensive care units, this type of communication is mixed with multiple situations, such as the management of information involving the worsening of clinical conditions and the possibility of imminent death, especially in pediatric cases. Given this context, the objective if this study was to understand the challenges faced by intensive care physicians in breaking bad news, from the analytical axis of some questions raised in the field of bioethical discussions. The results highlight the need for technical and personal preparation of physicians in the face of this important challenge, since the child's participation in the treatment process remains limited, a reality that hinders the sharing of information and, consequently, the exercise of autonomy.

Resumen Comunicar malas noticias es una tarea desafiante en la práctica médica, por lo que el tema ha adquirido relevancia en la formación de los futuros profesionales. En las unidades de cuidados intensivos, este tipo de comunicación se mezcla con múltiples situaciones, como, por ejemplo, el manejo de información que implica el agravamiento del estado clínico y la posibilidad de muerte inminente, especialmente en los casos pediátricos. Ante este contexto, el objetivo de esta investigación fue comprender los desafíos que enfrentan los médicos intensivistas en la comunicación de malas noticias, teniendo como eje de análisis algunas cuestiones problematizadas en el ámbito de las discusiones bioéticas. Los resultados señalaron la necesidad de una preparación técnica y personal del médico que se enfrenta a este importante desafío, una vez que la participación del niño en el proceso de tratamiento sigue siendo limitada, una realidad que dificulta el intercambio de información y, en consecuencia, el ejercicio de la autonomía.

Crispr-cas9: el debate bioético más allá de la línea germinal / Crispr-cas9: the bioethical debate beyond the germline / Crispr-cas9: o debate bioético mais além da linhagem germinativa

Resumen El sistema CRISPR-Cas9 es una tecnología de edición genética que, además de ampliar las posibilidades en investigación científica, despierta reflexiones asociadas a la dignidad humana, el control biológico, la terapia y la mejora genética. Se revisaron las discusiones bioéticas asociadas a los desafíos y las repercusiones que suscita su aplicación. Como resultado, los cuestionamientos bioéticos tienden a problematizar la aplicación en organismos no humanos, en la investigación básica y en la línea somática y germinal humana. Para concluir, falta incrementar los niveles de seguridad y efectividad para que los beneficios superen los riesgos y, de esta forma, sea posible disminuir las preocupaciones bioéticas y aumentar la credibilidad en el uso de la técnica.

Abstract The CRISPR-Cas9 system is a genetic editing technology that, in addition to expanding the possibilities for scientific research, promotes reflections associated with human dignity, biological control, therapy, and genetic improvement. Bioethical discussions on the challenges and repercussions of the CRISPR-Cas9 system are reviewed. As a result, bioethical questions tend to problematize the application to non-human organisms, primary research, and the human somatic and germline. In brief, it is necessary to increase the levels of safety and effectiveness so that the benefits outweigh the risks, while reducing bioethical concerns and increasing the credibility of the technique.

Resumo O sistema CRISPR-Cas9 é uma tecnologia de edição de genes que, além de ampliar as possibilidades em pesquisa científica, desperta reflexões associadas com a dignidade humana, o controle biológico, a terapia e o aperfeiçoamento genético. Foram revisadas as discussões bioéticas relacionadas aos desafios e às repercussões que sua aplicação suscita. Como resultado, os questionamentos bioéticos tendem a problematizar a aplicação em organismos não humanos, na pesquisa básica e na linhagem somática e germinativa humana. Para concluir, falta aumentar os níveis de segurança e efetividade para que os benefícios sejam maiores do que os riscos, e assim, seja possível diminuir as preocupações bioéticas e aumentar a credibilidade no uso da técnica.

Vade mecum sobre o morrer e a morte / Vade mecum about dying and death / Vademécum acerca de morir y la muerte

Resumo Considerando o impacto da morte em múltiplos aspectos da coletividade humana, este artigo reflete sobre como diferentes culturas, em épocas distintas, relacionaram-se com esse tema, buscando interpretar os vários significados associados à finitude. Para tanto, o estudo parte de uma revisão bibliográfica de abordagem qualitativa. Constata-se que as civilizações que se sucederam ao longo dos séculos têm em comum uma série de barreiras para compreender e aceitar a morte. E, a despeito de novos paradigmas socioculturais, da liberdade de expressão e de toda a evolução tecnológica que caracterizam a sociedade contemporânea, a desmistificação da morte ainda requer empenho. Em sua conclusão, o texto enfatiza a necessidade de ampliar discussões e estratégias para enfrentar as questões relacionadas à finitude humana, levando em conta que novas ressignificações conceituais sempre emergem com o progresso da ciência.

Abstract Considering the impact of death on multiple aspects of human collectivity, this article reflects on how different cultures, at different times, related to this theme, seeking to interpret the various meanings associated with finitude. Therefore, the study starts with a literature review of a qualitative approach. It found that civilizations that have succeeded each other over the centuries have in common a number of barriers to understanding and accepting death. And, despite new sociocultural paradigms, freedom of expression and all the technological evolution that characterize contemporary society, the demystification of death still requires commitment. In its conclusion, the text emphasizes the need to broaden discussions and strategies to address issues related to human finitude, considering that new conceptual re-significations always emerge with the progress of science.

Resumen Considerando el impacto de la muerte en múltiples aspectos de la colectividad humana, este artículo reflexiona sobre cómo diferentes culturas, en diferentes momentos, se relacionaron con este tema, buscando interpretar los diversos significados asociados a la finitud. Por lo tanto, el estudio parte de una revisión bibliográfica de un enfoque cualitativo. Se constata que las civilizaciones que se han sucedido a lo largo de los siglos tienen en común una serie de barreras para comprender y aceptar la muerte. A pesar de los nuevos paradigmas socioculturales, la libertad de expresión y toda la evolución tecnológica que caracteriza a la sociedad contemporánea, la desmitificación de la muerte aún requiere compromiso. En su conclusión, el texto enfatiza la necesidad de ampliar las discusiones y estrategias para abordar cuestiones relacionadas con la finitud humana, teniendo en cuenta que siempre surgen nuevas resignificaciones conceptuales con el progreso de la ciencia.

Do-not-resuscitate order in COVID-19 times: bioethics and professional ethics.

OBJECTIVE: To reflect about the do-not-resuscitation order at COVID-19 in Brazil, under bioethical focus and medical and nursing professional ethics. METHOD: Reflection study based on the principlist bioethics of Beauchamps and Childress and in professional ethics, problematizing actions, and decisions of non-resuscitation in the pandemic. RESULTS: It is important to consider the patient's clinic, appropriation of treatment goals for people with comorbidities, elderly people, with less chance of surviving to resuscitation, or less quality of life, with the palliative care team, to avoid dysthanasia, use of scarce resources and greater exposure of professionals to contamination. CONCLUSION: COVID-19 increased the vulnerabilities of professionals and patients, impacting professional decisions and conduct more widely than important values ​​such as the restriction of freedom. It propelled the population in general to rethink ethical and bioethical values ​​regarding life and death, interfering in decisions about them, supported by human dignity.

[Cancer in children with intellectual disabilities: Questioning and ethical issues]. / Cancer chez un enfant porteur de handicap intellectuel : questionnement et enjeux éthiques.

The Parents and Caregivers group in the face of ethics in pediatrics of the Île-de-France Ethics Area wondered about the association of the words Disability and Cancer by focusing on the study of the course of children with intellectual disability, treated for cancer. These situations are exceptional, the number of cases in France must not be more than fifty per year. We gathered the testimony of five families of children using a semi-directive survey taking up the journey from birth, announcement of the handicap, the diagnosis of cancer and its treatment. The verbatim show that each story is unique and rich in lessons, despite the feeling of "double penalty": "He did not deserve this, a handicap plus cancer is a lot for one person", "the shot moreover." A healthcare team was also interviewed and raised an additional question: "First, the double penalty… then, what's the point?" Through these testimonies, we sought to question the ethical principles of care, which can be shaken up in these extraordinary supported.

[Ethical stakes in palliative care in radiation oncology]. / Enjeux éthiques de la pratique des soins à visée palliative en oncologie radiothérapique.

In 2021, the Ethics Commission of the SFRO has chosen the issue of the practice of palliative care in radiotherapy oncology. Radiation oncology plays a central role in the care of patients with cancer in palliative phase. But behind the broad name of palliative radiotherapy, we actually find a large variety of situations involving diverse ethical issues. Radiation oncologists have the delicate task to take into account multiple factors throughout a complex decision-making process. While the question of the therapeutic indication and the technical choice allowing it to be implemented remains central, reflection cannot be limited to these decision-making and technical aspects alone. It is also a question of being able to create the conditions for a singularity focused care and to build an authentic care relationship, beyond technicity. It is through this daily ethical work, in close collaboration with patients, and under essential conditions of multidisciplinarity and multiprofessionalism, that our fundamental role as caregiver can be deployed.

Ethical issues facing hematopoietic stem cell transplantation in India.

A successful Hematopoietic stem cell transplantation (HSCT) is often the only hope of survival for children suffering from a range of potentially life-threatening hematological malignancies. The financial, ethical, and emotional problems faced by the matched sibling donor and their recipient siblings during the HSCT are extremely complex and challenging. Herein, the authors have attempted to pen down these in the configuration of a poem.

Bioética e interculturalidade na atenção à saúde indígena / Bioethics and interculturality in indigenous health care / Bioética e interculturalidad en la atención de salud indígena

Resumo Este artigo aponta aspectos socioculturais, teóricos e jurídicos para uma bioética intercultural na atenção à saúde dos povos indígenas do Brasil. A partir de uma perspectiva que busca construir práticas bioéticas adequadas aos encontros entre culturas, o texto argumenta que o foco em tecnologias leves de saúde pode ser um caminho para superar as dificuldades encontradas em um contexto permeado pela colonialidade e o racismo estrutural. Algumas experiências de prática bioética intercultural são apresentadas no artigo. Essas experiências, apesar de se referirem ao contexto brasileiro, podem ser aplicadas em outros cenários de encontro entre diferentes culturas.

Abstract This article points out sociocultural, theoretical and legal aspects for intercultural bioethics in health care for Indigenous peoples in Brazil. From a perspective that seeks to build bioethical practices suitable for encounters between cultures, the text argues that focusing on soft health technologies can help overcome the difficulties found in a context permeated by coloniality and structural racism. A few experiences of intercultural bioethical practice are presented in the article. Despite referring to the Brazilian context, such experiences can be applied in other scenarios where different cultures meet.

Resumen Este artículo señala aspectos socioculturales, teóricos y legales para una Bioética intercultural en la atención a la salud de los pueblos indígenas de Brasil. Desde una perspectiva que busca construir prácticas bioéticas adecuadas para el encuentro entre culturas, el texto sostiene que el enfoque en tecnologías blandas de salud puede ser una forma de superar las dificultades encontradas en un contexto permeado por la colonialidad y el racismo estructural. Algunas experiencias de práctica bioética presentados neste artículo, aunque sean del contexto indígena brasileño, pueden ser aplicadas a otros contextos de encuentros culturales.

Cuidado à criança na atenção primária à saúde: conflitos (bio)éticos / Child health care in primary health care: conflicts (bio)ethics / El cuidado infantil en la atención primaria de salud: conflictos (bio)éticos

Resumo Os conflitos bioéticos no cotidiano do cuidado à criança e ao adolescente na atenção primária à saúde, embora bastante complexos, têm sido pouco abordados, diferentemente do que ocorre no nível de atenção terciária. O amparo a essa população especialmente vulnerável envolve conflitos que demandam do profissional de saúde, além de competência técnica, uma série de conhecimentos legais e atributos éticos indispensáveis. É importante, portanto, reconhecer e analisar as questões (bio)éticas envolvidas, a fim de possibilitar uma tomada de decisão que contemple o melhor interesse da criança. O objetivo do artigo é delimitar, com base em revisão de literatura, os principais conflitos éticos relacionados ao cuidado da criança na atenção primária.

Abstract Although quite complex, bioethical conflicts in the daily routine of child and adolescent health care in primary health care have been little addressed, unlike what occurs at the tertiary care level. Providing support to this especially vulnerable population involves conflicts that require from the health professional, in addition to technical competence, a series of essential legal knowledge and ethical attributes. Therefore, it is important to recognize and analyze the pertinent (bio)ethical issues in order to enable decision-making that is in the best interests of the child. From a literature review, this article aims to delimit the main ethical conflicts related to child health care in primary health care.

Resumen Los conflictos bioéticos en el cuidado diario de niños y adolescentes en la atención primaria de salud, aunque bastante complejos, han sido mal abordados, a diferencia de lo que ocurre en el nivel de atención terciaria. El apoyo a esta población particularmente vulnerable implica conflictos que requieren del profesional de la salud, además de competencia técnica, una serie de conocimientos jurídicos y atributos éticos esenciales. Por lo tanto, es importante reconocer y analizar las cuestiones (bio)éticas involucradas, a fin de permitir la toma de decisiones en el mejor interés del niño. El objetivo del artículo es delimitar, a partir de una revisión de la literatura, los principales conflictos éticos relacionados con el cuidado infantil en la atención primaria.

Saúde LGBTQIA+ à luz da bioética principialista / LGBTQIA+ health in light of principlist bioethics / Salud LGBTQIA+ a la luz de la bioética principialista

Resumo O artigo analisa, à luz da bioética principialista, a experiência de lésbicas, gays, bissexuais, travestis e transexuais, queers, intersexuais, assexuais e outras identidades de gênero e orientações sexuais no acesso a serviços de saúde. Trata-se de pesquisa transversal, de abordagem qualitativa, realizada em 2018, no município de Iguatu/CE, Brasil, com 26 pessoas lésbicas, gays, bissexuais e transexuais, que participaram de grupos focais com entrevistas semiestruturadas. Os resultados apontam graves violações aos princípios básicos da corrente principialista, com violência institucional de cunho psicológico, desrespeito à dignidade, recusa de doação de sangue, não aceitação de nome social, falta de acolhimento e humanização do atendimento. A persistência e a gravidade das situações de discriminação relatadas mostram que, apesar dos avanços e da existência de uma política de saúde específica para essa população, as medidas de combate ao preconceito institucional têm se mostrado insuficientes.

Abstract In light of principlist bioethics, this article analyzes the experiences of lesbian, gay, bisexual, travesti and transgender, queer, intersex, asexual and other gender identities and sexual orientations regarding access to health services. Conducted in 2018, in the municipality of Iguatu, Ceará, Brazil, this cross-sectional, qualitative research conducted semi-structured interviews with 26 lesbian, gay, bisexual and transgender individuals who participated in focus groups. Results reveal serious violations of basic bioethical principles, including institutional violence of psychological nature, disrespect to dignity, refusal of blood donation, non-acceptance of social name, lack of receptive and humanized care. The persistence and severity of the reported situations of discrimination show that, despite the progress and the existence of a specific health policy for this population, the measures to combat institutional prejudice have proven insufficient.

Resumen El artículo analiza, a la luz de la bioética principialista, la experiencia de lesbianas, gays, bisexuales, transexuales y travestis, queers intersexuales, asexuales y otras identidades de género y orientaciones sexuales en el acceso a los servicios de salud. Se trata de una investigación transversal, con enfoque cualitativo, realizada en 2018, en el municipio de Iguatu/CE, Brasil, con 26 personas lesbianas, gays, bisexuales y transexuales, que participaron en grupos focales con entrevistas semiestructuradas. Los resultados indican graves violaciones de los principios básicos de la corriente principialista, con violencia institucional de carácter psicológico, desprecio por la dignidad, negativa a donar sangre, no aceptación del nombre social, falta de recepción y humanización del cuidado. La persistencia y gravedad de las situaciones de discriminación denunciadas muestran que, a pesar de los avances y la existencia de una política de salud específica para esta población, las medidas para combatir el prejuicio institucional han resultado insuficientes.

Planejamento familiar: dilemas bioéticos encontrados na literatura / Family planning: bioethical dilemmas found in the literature / Planificación familiar: dilemas bioéticos encontrados en la literatura

Resumo O artigo traz resultados de revisão integrativa realizada conforme as recomendações do método Preferred Reporting Items for Systematic Reviews and Meta-Analyses. O objetivo era investigar, à luz do modelo principialista, os dilemas bioéticos que emergem do planejamento familiar, de acordo com a literatura. Os dados foram levantados em pesquisa nas bases Medline, Lilacs e Scopus, por meio do cruzamento dos descritores "family planning and bioethics". Após aplicação dos critérios de elegibilidade, sete artigos publicados entre 2011 e 2018 foram selecionados para compor o estudo. Esses artigos foram submetidos a análise de conteúdo, como proposta por Bardin. Quatro categorias temáticas foram observadas: direito a liberdade e autonomia sexual/reprodutiva; interferência de governos no planejamento familiar e reprodutivo; barreiras socioculturais e religiosas ao planejamento familiar; e aprimoramento de tecnologias voltadas à manipulação de pré-embriões. Os resultados sugerem que os avanços científicos andam mais rápido do que as discussões bioéticas, criando dilemas práticos e teóricos.

Abstract This integrative review, based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses method, investigates the bioethical dilemmas that emerge from family planning, in light of principlism. Data were collected based on literature research conducted at the Medline, Lilacs and Scopus databases, using the descriptors "family planning and bioethics." After applying the eligibility criteria, seven papers published between 2011 and 2018 were selected for content analysis, performed according to Bardin's proposal. The study identified four thematic categories: right to freedom and sexual/reproductive autonomy; government interference in family and reproductive planning; sociocultural and religious barriers to family planning; and technological enhancement for pre-embryo handling. Results suggest that scientific advances move faster than bioethical discussions, creating practical and theoretical dilemmas.

Resumen Este artículo presenta los resultados de una revisión integrativa conforme al Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Su objetivo fue investigar, desde el modelo principialista, los dilemas bioéticos que surgen de la planificación familiar en la literatura. Para la recopilación de datos se llevó a cabo búsquedas en las bases de datos Medline, Lilacs y Scopus utilizando los descriptores "family planning and bioethics". Tras la aplicación de criterios de elegibilidad, se seleccionaron siete artículos publicados entre 2011 y 2018. Se aplicó a los artículos el análisis de contenido propuesto por Bardin. Se obtuvieron cuatro categorías temáticas: derecho a la libertad y autonomía sexual/reproductiva; interferencia del gobierno en la planificación familiar y reproductiva; barreras socioculturales y religiosas a la planificación familiar; y mejora de tecnologías relacionadas al manejo de los preembriones. Los resultados apuntaron que los avances científicos van más rápido que las discusiones bioéticas, ocasionando dilemas prácticos y teóricos.

[Intellectual disability and cancer in children: An analysis of the decision-making process]. / Déficience intellectuelle et cancer chez l'enfant : analyse des pratiques concernant le choix du traitement.

AIM: The aim was to describe and to analyze the ethics of decision-making in situations involving children with intellectual disability and cancer, from the referent-doctor's point-of-view, in pediatric oncology units in France. METHODS: Pediatricians working in pediatric oncology units were interviewed through an online questionnaire and a semi-directive interview was systematically proposed. We analyzed the ethical issues that arose during the process of decision-making and we made suggestions in order to address them. RESULTS: Sixteen doctors reported twenty-one clinical cases. Of these cases, one third of the children had a change in their oncologic treatment, with a risk of pejorative outcome on the prognosis. Despite the fact that ethical issues appeared in 80 % of the cases, there were few consultations with ethical committees. Decision-making process showed no difference compared to children without intellectual disability, thus raising ethical issues in the medical team. Our study showed discrepancy between frequently reported ethical issues, high consensus rate regarding treatment decision and lack of consultation with ethical committees. DISCUSSION: We propose three steps to guide the decision-making process in situations involving children with intellectual disability and cancer: 1/deeper understanding of the child through reinforced interactions with their caregivers, 2/better cross-boundary discussions, to improve the effectiveness of the multidisciplinary staff, and 3/more systematic ethical committees consultation.

Reflexiones sobre el impacto de la pandemia de la Covid-19 en el ejercicio médico y sus consideraciones bioéticas y legales / Reflections on the impact of the Covid-19 pandemic on medical practice and its bioethical and legal considerations

El presente trabajo tiene el objetivo de reflexionar, desde una plataforma bioética y legal, sobre las consideraciones que el médico en ejercicio debe tener presente ante el impacto de una emergencia sanitaria, como la pandemia de la covid-19, que le permitan responder con rapidez pero brindando una atención médica con previsión y calidad científica, capaz de contener la transmisibilidad del virus SARS-CoV-2 y así evitar que la capacidad hospitalaria sea rebasada, pero sobre todo para abordar adecuadamente los múltiples dilemas bioéticos que surjan y velar en todo momento por la dignidad, la integridad y la autonomía de las personas, con respeto a sus derechos humanos y en cumplimiento con la normativa vigente nacional e internacional. Estas consideraciones bioéticas y legales, si bien pueden no ser las únicas, son resultado del análisis discursivo, conceptual y crítico realizado, tres de los métodos empleados para el desarrollo de este trabajo.

The present work aims to reflect, from a bioethical and legal platform, on the considerations that the practicing physician must bear in mind in the face of the impact of a health emergency, which has been the case with the COVID-19 pandemic as of today. These must allow them to respond quickly, but they must also be able to provide medical care with foresight and scientific quality capable of containing the transmissibility of the SARS-CoV-2 virus and thus avoiding that hospital capacity is exceeded. Above all, the practicing physician must adequately address the multiple bioethical dilemmas that arise, and they must, always, ensure the dignity, integrity and autonomy of people, with respect for their human rights and, as well as comply with current international and national. regulations. These bioethical and legal considerations, although they may not be the only ones of their kind, are the result of the discursive, conceptual and critical analysis carried out, three of the methods used for the development of this paper.

CRISPR-Cas and Its Wide-Ranging Applications: From Human Genome Editing to Environmental Implications, Technical Limitations, Hazards and Bioethical Issues.

The CRISPR-Cas system is a powerful tool for in vivo editing the genome of most organisms, including man. During the years this technique has been applied in several fields, such as agriculture for crop upgrade and breeding including the creation of allergy-free foods, for eradicating pests, for the improvement of animal breeds, in the industry of bio-fuels and it can even be used as a basis for a cell-based recording apparatus. Possible applications in human health include the making of new medicines through the creation of genetically modified organisms, the treatment of viral infections, the control of pathogens, applications in clinical diagnostics and the cure of human genetic diseases, either caused by somatic (e.g., cancer) or inherited (mendelian disorders) mutations. One of the most divisive, possible uses of this system is the modification of human embryos, for the purpose of preventing or curing a human being before birth. However, the technology in this field is evolving faster than regulations and several concerns are raised by its enormous yet controversial potential. In this scenario, appropriate laws need to be issued and ethical guidelines must be developed, in order to properly assess advantages as well as risks of this approach. In this review, we summarize the potential of these genome editing techniques and their applications in human embryo treatment. We will analyze CRISPR-Cas limitations and the possible genome damage caused in the treated embryo. Finally, we will discuss how all this impacts the law, ethics and common sense.