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1.
Gac Sanit ; 36 Suppl 1: S51-S55, 2022.
Article in Spanish | MEDLINE | ID: mdl-35781149

ABSTRACT

The COVID-19 pandemic has been a clinical challenge, but also a legal and bioethical one. These three fundamental pillars are developed in the approach to prioritizing health resources in pandemic, clinical criteria, corresponding legal framework and applicable ethical principles. Initially, clinical criteria were applied to identify patients with the best survival prognosis, combining a clinical evaluation and the use of short-term and long-term prognostic variables. But the decision to prioritize the care of one patient over another has a legal-political burden, which poses a risk of falling into discrimination since fundamental rights are at stake. The prioritization criteria must be based on principles that reflect as a vehicle philosophy that which we have constitutionally assumed as a social and democratic State of Law, which did not respond to utilitarianism but to personalism. Any philosophy of resource distribution must bear in mind the scientific and constitutional perspective and, with them, those of fundamental rights and bioethical principles. In the prioritization of resources, ethical principles must be consolidated such as respect for the human dignity, the principle of necessity (equal need, equal access to the resource), the principle of equity (which advises prioritizing the most vulnerable population groups), transparency (fundamental in society's trust) and the principle of reciprocity (which requires protecting the sectors of the population that take more risks), among others.


Subject(s)
COVID-19 , Health Resources , COVID-19/epidemiology , Humans , Pandemics , Vulnerable Populations
2.
An. pediatr. (2003. Ed. impr.) ; 95(6): 413-422, Dic. 2021. tab
Article in Spanish | IBECS | ID: ibc-208364

ABSTRACT

Introducción: El consentimiento informado del menor es un requerimiento fundamental de la investigación pediátrica. Actualmente existe una desarmonización en cuanto a la edad del menor maduro para consentir y no se dispone de herramientas sistemáticas para evaluar la competencia en la capacidad de decisión. El objetivo de este trabajo es analizar la situación ética y legal del consentimiento en menores, así como los estudios que utilizan un instrumento objetivo de evaluación en el menor maduro.Material y métodos: Revisión bibliográfica de artículos científicos en PubMed, Embase y Literatura gris, publicados con palabras clave «informed consent minors», sin restricción de fecha hasta marzo 2019. Se revisaron los abstracts y una selección de los artículos completos siguiendo un protocolo de identificación, cribado, elegibilidad e inclusión.Resultados: De los 260 registros identificados, se excluyeron 139. Tras categorizar los 121 artículos resultantes, finalmente se seleccionaron 13 siguiendo los criterios de elegibilidad, incluyéndose 7 artículos sobre normativa ética y legal internacional, y 6 sobre evaluación de comprensión y capacidad de decisión. En 4 estudios se ha utilizado la entrevista semiestructurada McCarthur Competency Assessment Tool for Clinical Research (MacCAT-CR), en diferentes rangos de edad (6-21 años), niños sanos y con alguna patología.Conclusiones: La entrevista semiestructurada McCarthur adaptada a adolescentes podría ser una herramienta adecuada con medidas psicométricas robustas para la valoración de competencia para el consentimiento informado de menores entre 9 y 12 años. La regulación del consentimiento informado en investigación pediátrica debería ser receptiva a estas evidencias. (AU)


Introduction: The informed consent of the minor is a fundamental requirement of paediatric research. There is a lack of harmonisation as regards the age of the mature minor to consent, and there are no systematic tools available to assess competence in decision-making capacity. The objective of this work is to analyse the ethical and legal situation of consent by minors, as well as studies that use an objective assessment tool in the mature minor.Material and methods: Systematic review of scientific articles in PubMed, Embase and the Grey Literature, published with keywords “informed consent minors”, without date restriction until March 2019. Abstracts and a selection of complete articles were reviewed following a protocol including identification, screening, eligibility, and inclusion.Results: Of the 260 records identified, 139 were excluded. After categorising the resulting 121 publications, 13 were finally selected following the eligibility criteria, including 7 articles on international ethical and legal regulations and 6 on understanding and decision- making capacity assessment. The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) semi-structured interview was used in 4 studies, including different age ranges (6-21 years) in healthy and sick children.Conclusions: The semi-structured MacArthur interview adapted to adolescents could be an appropriate tool with robust psychometric measures for assessing competence for the informed consent of minors between 9 and 12 years of age. The regulation of informed consent in paediatric research should consider this evidence. (AU)


Subject(s)
Humans , Child , Informed Consent By Minors/ethics , Informed Consent By Minors/legislation & jurisprudence , Decision Making , Scientific and Technical Publications
3.
An Pediatr (Engl Ed) ; 95(6): 413-422, 2021 Dec.
Article in English | MEDLINE | ID: mdl-34782293

ABSTRACT

INTRODUCTION: The informed consent of the minor is a fundamental requirement of paediatric research. There is a lack of harmonisation as regards the age of the mature minor to consent, and there are no systematic tools available to assess competence in decision-making capacity. The objective of this work is to analyse the ethical and legal situation of consent by minors, as well as studies that use an objective assessment tool in the mature minor. MATERIAL AND METHODS: Systematic review of scientific articles in PubMed, Embase and the Grey Literature, published with keywords "informed consent minors", without date restriction until March 2019. Abstracts and a selection of complete articles were reviewed following a protocol including identification, screening, eligibility, and inclusion. RESULTS: Of the 260 records identified, 139 were excluded. After categorising the resulting 121 publications, 13 were finally selected following the eligibility criteria, including 7 articles on international ethical and legal regulations and 6 on understanding and decision- making capacity assessment. The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) semi-structured interview was used in 4 studies, including different age ranges (6-21 years) in healthy and sick children. CONCLUSIONS: The semi-structured MacArthur interview adapted to adolescents could be an appropriate tool with robust psychometric measures for assessing competence for the informed consent of minors between 9 and 12 years of age. The regulation of informed consent in paediatric research should consider this evidence.


Subject(s)
Informed Consent , Mental Competency , Adaptation, Physiological , Adolescent , Adult , Child , Humans , Psychometrics , Young Adult
4.
Front Public Health ; 9: 737755, 2021.
Article in English | MEDLINE | ID: mdl-34722445

ABSTRACT

Objectives: Each new wave of the COVID-19 pandemic invites the possible obligation to prioritize individuals' access to vital resources, and thereby leads to unresolved and important bioethical concerns. Governments have to make decisions to protect access to the health system with equity. The prioritization criteria during a pandemic are both a clinical and legal-administrative decision with ethical repercussion. We aim to analyse the prioritization protocols used in Spain during the pandemic which, in many cases, have not been updated. Method: We carried out a narrative review of 27 protocols of prioritization proposed by healthcare ethics committees, scientific societies and institutions in Spain for this study. The review evaluated shared aspects and unique differences and proffered a bioethical reflection. Results: The research questions explored patient prioritization, the criteria applied and the relative weight assigned to each criterion. There was a need to use several indicators, being morbidity and mortality scales the most commonly used, followed by facets pertaining to disease severity and functional status. Although age was initially considered in some protocols, it cannot be the sole criterion used when assigning care resources. Conclusions: In COVID-19 pandemic there is a need for a unified set of criteria that guarantees equity and transparency in decision-making processes. Establishing treatment indications is not the aim of such criteria, but instead prioritizing access to care resources. In protocols of prioritization, the principle of efficiency must vary according to the principle of equity and the criteria used to guarantee such equity.


Subject(s)
COVID-19 , Pandemics , Delivery of Health Care , Ethics Committees , Humans , Pandemics/prevention & control , SARS-CoV-2 , Spain/epidemiology
5.
Pediatr Res ; 90(2): 284-288, 2021 08.
Article in English | MEDLINE | ID: mdl-33177673

ABSTRACT

Cerebral palsy (CP) is a heterogeneous neurodevelopmental disorder that causes movement and postural disabilities. Recent research studies focused on genetic diagnosis in patients with CP of unknown etiology. The present study was carried out in 20 families with one family member affected with idiopathic CP. Chromosomal microarray and exome sequencing techniques were performed in all patients. Chromosomal microarray analysis did not show any pathological or probable pathological structural variant. However, the next-generation sequencing study showed a high diagnostic yield. We report 11/20 patients (55%) with different pathogenic or potentially pathogenic variants detected by exome sequencing analysis: five patients with mutations in genes related to hereditary spastic paraplegia, two with mutations in genes related to Aicardi-Goutières syndrome, three with mutations in genes related to developmental/epileptic encephalopathies, and one with a mutation in the PGK1 gene. The accurate and precise patients' selection, the use of a high-throughput genetic platform, the selection of adequate target genes, and the application of rigorous criteria for the clinical interpretation are the most important elements for a good diagnostic performance. Based on our findings, next-generation sequencing should be considered in patients with cryptogenic CP as the first line of genetic workup. IMPACT: Sequencing techniques in CP of uncertain etiology provides a diagnostic yield of 55%. The appropriate selection of cases optimizes the diagnostic yield. NGS facilitate better understanding of new phenotypes of certain genetic diseases.


Subject(s)
Cerebral Palsy/diagnosis , Cerebral Palsy/genetics , DNA Mutational Analysis , Genetic Heterogeneity , Genetic Testing , High-Throughput Nucleotide Sequencing , Mutation , Adolescent , Child , Child, Preschool , Female , Genetic Markers , Genetic Predisposition to Disease , Humans , Male , Phenotype , Predictive Value of Tests , Risk Factors
6.
An Pediatr (Engl Ed) ; 2020 Nov 30.
Article in Spanish | MEDLINE | ID: mdl-33272846

ABSTRACT

INTRODUCTION: The informed consent of the minor is a fundamental requirement of paediatric research. There is a lack of harmonisation as regards the age of the mature minor to consent, and there are no systematic tools available to assess competence in decision-making capacity. The objective of this work is to analyse the ethical and legal situation of consent by minors, as well as studies that use an objective assessment tool in the mature minor. MATERIAL AND METHODS: Systematic review of scientific articles in PubMed, Embase and the Grey Literature, published with keywords "informed consent minors", without date restriction until March 2019. Abstracts and a selection of complete articles were reviewed following a protocol including identification, screening, eligibility, and inclusion. RESULTS: Of the 260 records identified, 139 were excluded. After categorising the resulting 121 publications, 13 were finally selected following the eligibility criteria, including 7 articles on international ethical and legal regulations and 6 on understanding and decision- making capacity assessment. The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) semi-structured interview was used in 4 studies, including different age ranges (6-21 years) in healthy and sick children. CONCLUSIONS: The semi-structured MacArthur interview adapted to adolescents could be an appropriate tool with robust psychometric measures for assessing competence for the informed consent of minors between 9 and 12 years of age. The regulation of informed consent in paediatric research should consider this evidence.

7.
Cuad Bioet ; 31(102): 183-202, 2020.
Article in Spanish | MEDLINE | ID: mdl-32910671

ABSTRACT

The article deals with the analysis of the criteria for the allocation of scarce health resources during the pandemic produced by the COVID 19 virus in Spain. It critically analyses the absence of a legal-constitutional perspective in the elaboration of such criteria and suggests the incorporation of the criterion of equity as a guarantee of the effective exercise of the constitutional right to health protection by vulnerable persons.


Subject(s)
Betacoronavirus , Health Resources/ethics , Pandemics/ethics , Resource Allocation/ethics , COVID-19 , Constitution and Bylaws , Coronavirus Infections/prevention & control , Ethical Theory , Government Agencies , Health Priorities , Health Resources/legislation & jurisprudence , Health Resources/supply & distribution , Health Services Accessibility/ethics , Health Services Accessibility/legislation & jurisprudence , Human Rights/legislation & jurisprudence , Humans , Minority Groups , Pandemics/legislation & jurisprudence , Pandemics/prevention & control , Pneumonia, Viral/prevention & control , Publications , Resource Allocation/legislation & jurisprudence , Role , SARS-CoV-2 , Social Justice , Societies, Medical , Spain/epidemiology , Triage/ethics , Vulnerable Populations
8.
An. pediatr. (2003. Ed. impr.) ; 93(2): 111-117, ago. 2020. tab
Article in Spanish | IBECS | ID: ibc-201753

ABSTRACT

INTRODUCCIÓN: La infección por citomegalovirus es la infección congénita más frecuente en los países desarrollados y una de las principales causas de retraso psicomotor y sordera neurosensorial de origen infeccioso. El presente estudio tiene como objetivos describir las características clínico-analíticas y de neuroimagen de los pacientes con secuelas neurológicas secundarias a la infección congénita por citomegalovirus y compararlas con el grupo de pacientes con infección congénita por citomegalovirus que no presentaron clínica neurológica durante su seguimiento. Material y MÉTODOS: Estudio de cohortes retrospectivo, observacional. Se incluyeron todos los casos de infección congénita por citomegalovirus desde 2003 hasta 2018 y se evaluaron las secuelas neurológicas a corto-medio plazo. Se compararon datos prenatales, perinatales y posnatales de los pacientes con secuelas neurológicas frente a los que no las presentaron. RESULTADOS: En el periodo descrito se registraron 60 pacientes con infección congénita por citomegalovirus: un 65% presentó afectación neurológica durante su periodo de seguimiento (retraso psicomotor 62,2%; microcefalia 61,5%, hipoacusia 46,2%; trastornos motores 27,8%; epilepsia 20,5% y coriorretinitis 5,6%). En el grupo de pacientes que presentó secuelas, la presencia de clínica en el periodo neonatal así como las alteraciones en el estudio de neuroimagen fueron más frecuentes y ambas fueron estadísticamente significativas respecto al grupo asintomático. Los pacientes con afectación neurológica también presentaron mayor puntuación en la escala de neuroimagen según Noyola et al. CONCLUSIONES: La sintomatología al nacimiento y ciertos hallazgos en la neuroimagen, como la presencia de alteraciones de la sustancia blanca o trastornos de la migración neuronal, podrían predecir las secuelas neurocognitivas en los pacientes con infección congénita por citomegalovirus


INTRODUCTION: The infection due to cytomegalovirus is the most common congenital infection in developed countries, and on of the main causes of psychomotor impairment and neurosensory hearing loss of infectious origin. The present study has its objectives to describe the clinical-analytical and neuroimaging of patients with secondary neurological sequelae secondary to the congenital cytomegalovirus infection and then compare them with the group of patients with a congenital cytomegalovirus infection that did not have neurological symptoms during their follow-up. MATERIAL AND METHODS: A retrospective, observational, cohort study was conducted that included all the cases of congenital cytomegalovirus infection from 2003 until 2018 and the short-medium term neurological sequelae were evaluated. Prenatal, perinatal, and postnatal data of patients with neurological sequelae were compared against those that did not present with any. RESULTS: A total of 60 patients with congenital cytomegalovirus infection were recorded during the study period, with 65% having neurological involvement during their follow-up period (62.2% with psychomotor impairment, 61.5% with microcephaly, 46.2% loss of hearing, 27.8% motor disorders, 20.5% epilepsy, and 5.6% with chorioretinitis). In the patient group that had sequelae, the presence of clinical symptoms during the neonatal period, as well as changes in the neuroimaging study, were the most common, with both being statistically significant compared to the asymptomatic group. The patients with neurological involvement also had a higher score on the Noyola et al. neuroimaging scale. CONCLUSIONS: The symptoms at birth, and certain findings in the neuroimaging, like the changes in the white matter or neuronal migration disorders, could predict neurocognitive sequelae in patients with congenital cytomegalovirus infection


Subject(s)
Humans , Male , Female , Pregnancy , Infant, Newborn , Infant , Child, Preschool , Cytomegalovirus Infections/complications , Hearing Loss, Sensorineural/virology , Microcephaly/virology , Nervous System Diseases/virology , Cohort Studies , Cytomegalovirus Infections/congenital , Follow-Up Studies , Hearing Loss, Sensorineural/epidemiology , Nervous System Diseases/diagnostic imaging , Nervous System Diseases/epidemiology , Neuroimaging , Psychomotor Disorders/epidemiology , Psychomotor Disorders/virology , Retrospective Studies , White Matter/diagnostic imaging
9.
Cuad. bioét ; 31(102): 183-202, mayo-ago. 2020.
Article in Spanish | IBECS | ID: ibc-194277

ABSTRACT

El artículo aborda el análisis de los criterios de asignación de recursos sanitarios escasos durante la pandemia producida por el virus covid 19 en España. Se analiza críticamente la ausencia de una perspectiva jurídico-constitucional en la elaboración de tales criterios y se sugiere la incorporación del criterio de equidad como garantía del efectivo disfrute del derecho constitucional a la protección de la salud por parte de las personas vulnerables


The article deals with the analysis of the criteria for the allocation of scarce health resources during the pandemic produced by the covid 19 virus in Spain. It critically analyses the absence of a legal-constitutional perspective in the elaboration of such criteria and suggests the incorporation of the criterion of equity as a guarantee of the effective exercise of the constitutional right to health protection by vulnerable persons


Subject(s)
Humans , Coronavirus Infections/epidemiology , Disaster Vulnerability , Clinical Protocols/classification , 17627/legislation & jurisprudence , Pandemics/ethics , Disease Prevention , Surge Capacity/legislation & jurisprudence , Resource Allocation/legislation & jurisprudence , Health Priorities/ethics
10.
An Pediatr (Engl Ed) ; 93(2): 111-117, 2020 Aug.
Article in Spanish | MEDLINE | ID: mdl-32111550

ABSTRACT

INTRODUCTION: The infection due to cytomegalovirus is the most common congenital infection in developed countries, and on of the main causes of psychomotor impairment and neurosensory hearing loss of infectious origin. The present study has its objectives to describe the clinical-analytical and neuroimaging of patients with secondary neurological sequelae secondary to the congenital cytomegalovirus infection and then compare them with the group of patients with a congenital cytomegalovirus infection that did not have neurological symptoms during their follow-up. MATERIAL AND METHODS: A retrospective, observational, cohort study was conducted that included all the cases of congenital cytomegalovirus infection from 2003 until 2018 and the short-medium term neurological sequelae were evaluated. Prenatal, perinatal, and postnatal data of patients with neurological sequelae were compared against those that did not present with any. RESULTS: A total of 60 patients with congenital cytomegalovirus infection were recorded during the study period, with 65% having neurological involvement during their follow-up period (62.2% with psychomotor impairment, 61.5% with microcephaly, 46.2% loss of hearing, 27.8% motor disorders, 20.5% epilepsy, and 5.6% with chorioretinitis). In the patient group that had sequelae, the presence of clinical symptoms during the neonatal period, as well as changes in the neuroimaging study, were the most common, with both being statistically significant compared to the asymptomatic group. The patients with neurological involvement also had a higher score on the Noyola et al. neuroimaging scale. CONCLUSIONS: The symptoms at birth, and certain findings in the neuroimaging, like the changes in the white matter or neuronal migration disorders, could predict neurocognitive sequelae in patients with congenital cytomegalovirus infection.


Subject(s)
Cytomegalovirus Infections/complications , Hearing Loss, Sensorineural/virology , Microcephaly/virology , Nervous System Diseases/virology , Child, Preschool , Cohort Studies , Cytomegalovirus Infections/congenital , Female , Follow-Up Studies , Hearing Loss, Sensorineural/epidemiology , Humans , Infant , Infant, Newborn , Male , Microcephaly/epidemiology , Nervous System Diseases/diagnostic imaging , Nervous System Diseases/epidemiology , Neuroimaging , Pregnancy , Psychomotor Disorders/epidemiology , Psychomotor Disorders/virology , Retrospective Studies , White Matter/diagnostic imaging
11.
Rev. neurol. (Ed. impr.) ; 69(8): 332-336, 16 oct., 2019. tab
Article in Spanish | IBECS | ID: ibc-187091

ABSTRACT

Introducción: El síndrome HaNDL (headache and neurologic deficits with cerebrospinal fluid lymphocytosis) es una entidad autolimitada y benigna que cursa, como su nombre indica, con aparición de episodios de déficits neurológicos transitorios de naturaleza motora, sensitiva o afásica, y menos frecuentemente visual, de varias horas de duración, acompañados o seguidos de cefalea moderada-grave y linfocitosis del líquido cefalorraquídeo. Su incidencia es baja en la edad adulta, y casi excepcional en la edad pediátrica. La recurrencia de los episodios suele producirse en los primeros tres meses. El pronóstico es excelente. Caso clínico: Mujer de 12 años con cefalea frontal intensa que inicia en el décimo día, de forma brusca, clínica de disartria y hemiparesia derecha con posterior afasia e hipotonía generalizada. Tras descartarse mediante exploraciones complementarias y evolución clínica otras entidades, fue finalmente diagnosticada de síndrome HaNDL, ya que cumplía los criterios clínicos de la Sociedad Internacional de Cefaleas (IHS). Conclusiones: La paciente reunió los criterios de la IHS para el diagnóstico de síndrome HaNDL. Se analizan los principales datos históricos, epidemiológicos y clínicos, y se expone el diagnóstico diferencial del síndrome HaNDL en la edad pediátrica


Introduction: HaNDL (headache and neurological deficits with cerebrospinal fluid lymphocytosis) syndrome is a self-limiting benign condition which, as its name suggests, causes episodes of transient neurological deficits of a motor, sensory, aphasic and, less frequently, visual nature lasting several hours, accompanied or followed by moderate-to-severe headache and lymphocytosis of the cerebrospinal fluid. Its incidence is low in adulthood, and it is extremely uncommon in the paediatric age. Recurrence of episodes usually occurs in the first three months. It has an excellent prognosis. Case report: A 12-year-old female with intense frontal headache that suddenly begins on the tenth day, with clinical signs and symptoms of dysarthria and right hemiparesis with subsequent aphasia and generalised hypotonia. After ruling out other conditions by means of complementary examinations and the clinical course, the patient was finally diagnosed with HaNDL syndrome, since it fulfilled the clinical criteria of the International Headache Society (IHS). Conclusions: The patient met the criteria established by the IHS for the diagnosis of HaNDL syndrome. The main historical, epidemiological and clinical data are analysed and the differential diagnosis of HaNDL syndrome in the paediatric age is described


Subject(s)
Humans , Female , Child , Headache/epidemiology , Lymphocytosis/cerebrospinal fluid , Nervous System Diseases/epidemiology , Headache/etiology , Headache/therapy , Nervous System Diseases/etiology , Nervous System Diseases/therapy , Recurrence , Paresis/complications , Diagnosis, Differential , Leukocytosis/complications
15.
Med. paliat ; 25(1): 17-21, ene.-mar. 2018. ilus, tab
Article in Spanish | IBECS | ID: ibc-171070

ABSTRACT

OBJETIVO: La insuficiencia cardiaca constituye un proceso cuya atención, especialmente al final de la vida, asocia una gran complejidad ética. Este trabajo tiene por objetivo explorar algunas de las cuestiones éticas propias de los cuidados paliativos que reciben las personas con insuficiencia cardiaca avanzada. MÉTODO: Realizamos una búsqueda en MEDLINE® database publicados hasta marzo de 2015, y recopilamos los artículos relacionados con las cuestiones éticas en el cuidado de pacientes con insuficiencia cardiaca. RESULTADOS: Existen varios aspectos fundamentales que permiten asegurar que los cuidados paliativos se realicen de forma apropiada en los pacientes con insuficiencia cardiaca, empezando por una planificación anticipada de la asistencia sanitaria. Son esenciales una adecuada comunicación e información, así como la participación del paciente y los familiares en la toma de decisiones en relación con la aceptación o rechazo de distintas opciones terapéuticas. Los pacientes con dispositivos implantados requieren especial atención, siendo importante identificar aquellas situaciones en las que estos dispositivos puedan necesitar ser desactivados. Asimismo, debe prestarse especial atención a aspectos sociales y espirituales. CONCLUSIONES: La insuficiencia cardiaca es una entidad compleja que asocia elevada morbimortalidad. Dado el curso incierto que presenta, es importante considerar y llevar a cabo, y de forma precoz, una adecuada planificación de eventos adversos, incluyendo también cuidados al final de la vida


OBJECTIVE: Heart failure is a process which, especially at the end of life, entails great ethical complexity in the care provided by physicians. This paper aims to explore some of the characteristics of the ethical issues and palliative care provided to people with advanced heart failure. METHODS: We searched MEDLINE® database for articles published until March 2015, and collected those related to ethical issues in the care of patients with heart failure RESULTS: There are several fundamental aspects which ensure that palliative care is properly provided in patients with heart failure, starting with advance planning of healthcare. Proper communication and information are essential, as well as patient and family participation in the decision-making process, and regarding acceptance or rejection of treatment options. Patients with implanted devices deserve special attention and it is important to identify situations in which these devices may need to be disabled. Moreover, special attention to social and spiritual aspects must be given. CONCLUSIONS: Heart failure is a complex entity which associates high morbidity and mortality. Given its prognostic uncertainty, planning of adverse events and end- of- life care should be integrated from the early stages of the disease


Subject(s)
Humans , Male , Female , Heart Failure/epidemiology , Palliative Care/ethics , Prognosis , Hospice Care/ethics
16.
Cuad. bioét ; 28(93): 177-197, mayo-ago. 2017.
Article in Spanish | IBECS | ID: ibc-163894

ABSTRACT

El artículo aborda la cuestión de la maternidad subrogada desde una perspectiva global. Analiza el fenómeno de la subrogación desde la óptica del derecho internacional y comparado y los efectos que la legalización de la subrogación altruista en los países del primer mundo puede tener sobre las mujeres en condiciones de vulnerabilidad en otros lugares del planeta. Concluye extrapolando las conclusiones de este análisis al debate actual sobre la legalización de la gestación por sustitución altruista en España


The article approaches the issue of surrogacy from a global point of view. Surrogacy is analysed from international and comparative law perspective, as well as the effects of the legalization of altruistic surrogacy in the first-world countries on vulnerable women in other parts of the world. The paper concludes extrapolating the conclusions of this analysis to the current debate about legalization of altruistic surrogacy in Spain


Subject(s)
Humans , Female , Pregnancy , Surrogate Mothers , Reproduction/ethics , Reproductive Techniques, Assisted/ethics , Selective Breeding , Bioethical Issues , Pregnancy/ethics , Personhood , Maternal-Fetal Relations/psychology , Commerce/ethics
17.
Cuad Bioet ; 28(93): 177-197, 2017.
Article in Spanish | MEDLINE | ID: mdl-28621960

ABSTRACT

The article approaches the issue of surrogacy from a global point of view. Surrogacy is analysed from international and comparative law perspective, as well as the effects of the legalization of altruistic surrogacy in the first-world countries on vulnerable women in other parts of the world. The paper concludes extrapolating the conclusions of this analysis to the current debate about legalization of altruistic surrogacy in Spain.


Subject(s)
Altruism , Developed Countries , Developing Countries , Surrogate Mothers/legislation & jurisprudence , Vulnerable Populations , Female , Humans , Pregnancy , Reproduction , Spain
18.
Cuad. bioét ; 24(82): 475-498, sept.-dic. 2013.
Article in Spanish | IBECS | ID: ibc-120127

ABSTRACT

En octubre de 2011 el Tribunal de Justicia de la Unión Europea dictó sentencia en el caso Brüstle v. Greenpeace. Se trataba de resolver una cuestión prejudicial interpuesta por el Bundesgerichtshof, al objeto de determinar el sentido de la expresión “embriones humanos” en la Directiva 44/98/CE, para aplicar esta norma a la resolución del litigio entre Brüstle, neurobiólogo alemán y Greenpeace. El primero pretendía patentar un procedimiento para la obtención de células madre que implicaba la destrucción de embriones humanos. El artículo analiza el significado de esta sentencia a la luz de la discriminación de los embriones preimplantatorios existente en nuestro Derecho. Para ello, se examina el contenido de la Directiva, los informes del European Group on Ethics of Science and New Technologies al respecto, el contenido de la propia Sentencia y de las Conclusiones previas del Abogado General. Se prestará especial atención a la resolución definitiva del caso por el Tribunal Federal alemán, mediante sentencia de 27 de noviembre de 2012. El trabajo se ocupa de la repercusión del caso a nivel europeo, examinando la actividad a que ha dado lugar en el Parlamento Europeo, en el marco de la discusión del programa Horizon 2020 y la iniciativa legislativa ciudadana “Uno de nosotros”, y a nivel español. Se concluye afirmando la necesidad de reformar la ley española de Reproducción Humana Asistida y de Investigación Biomédica (AU)


In October 2011 the Court of Justice of the European Union pronounced the sentence in the case Brüstle v. Greenpeace. This sentence resolves the preliminary ruling interposed by the Bundesgerichtshof. The object of the preliminary ruling was the interpretation of the expression “human embryos”, on 44/98/CE Guideline, in order to resolve the litigation between Brüstle, a German neurobiologist, and Greenpeace. Brüstle have patented a process for obtaining stem cells using cells originally extracted from human embryos, Greenpeace have filed a lawsuit against this patent. The article analyzes the meaning of this sentence in the light of the discrimination of the pre-implantation embryos in Spanish law. The content of the Biopatent Guideline, the Opinions of the European Group on Ethics of Science and New Technologies related to it, the EUJC verdict and the Conclusions of the General Advocate are analyzed. We will pay special attention to the final verdict given on November 27, 2012, by the German Federal Court of Justice. The paper also considers the repercussion of Brüstle case at the European level, examining the activity of the European Parliament, in the frame of the discussion of the program Horizon 2020, and the citizen’s initiative “One of us”. At the Spanish level, the paper underlines the need to reform the laws of Human Assisted Reproduction and of Biomedical Investigation (AU)


Subject(s)
Humans , Blastocyst , Embryo Research/ethics , Origin of Life , Beginning of Human Life/ethics , Jurisprudence , Ethics, Research , Reproductive Rights/ethics , Human Rights , Biological Science Disciplines/ethics , European Union
19.
Cuad Bioet ; 24(81): 223-37, 2013.
Article in Spanish | MEDLINE | ID: mdl-24206250

ABSTRACT

The paper analyzes the question of the universal biolaw from the point of view of the biojuridical praxis. The main problems concerning life's protection are found in the process of interpretation and re-creation of the norms (not in their literal texts) regulating the right to life and new rights, as personal autonomy. But it is also at this sphere where the possibilities of an universal biolaw founded on the funcionalization of the human life value are to be found.


Subject(s)
Bioethical Issues/legislation & jurisprudence , Value of Life , Humans
20.
Cuad. bioét ; 24(81): 223-237, mayo-ago. 2013.
Article in Spanish | IBECS | ID: ibc-120133

ABSTRACT

El artículo analiza la cuestión del bioderecho universal desde el punto de vista de la praxis biojurídica. En el proceso de interpretación y re-creación de las normas que regulan el derecho a la vida y nuevos derechos como la autonomía personal se encuentran los principales problemas para la protección de la vida (que no provienen, por tanto, de la literalidad de las normas), pero también las posibilidades de construir un bioderecho universal regido por el valor de la vida humana hecho función de la experiencia jurídica (AU)


The paper analyzes the question of the universal biolaw from the point of view of the biojuridical praxis. The main problems concerning life’s protection are found in the process of interpretation and re-creation of the norms (not in their literal texts) regulating the right to life and new rights, as personal autonomy. But it is also at this sphere where the possibilities of an universal biolaw founded on the funcionalization of the human life value are to be found (AU)


Subject(s)
Humans , Bioethics , Morals , Principle-Based Ethics , Personhood , Ethical Theory , Human Rights , Personal Autonomy
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