¿Por qué se ha obviado la bioética en la pandemia? / Why has Bioethics been obviated in the pandemic?

La bioética aplicada a la clínica es el arte de elegir la opción óptima en una situación determinada. Lo que no sea óptimo es por definición malo. Nos plantea el problema moral por antonomasia, la cuestión del deber para saber escoger la opción más correcta, teniendo en cuenta los hechos y los valores. Somos agentes morales y tenemos responsabilidad en ello. En cualquier situación hay un momento adecuado u oportuno para hacer algo (Kairós) y hay que saber aprovecharlo. La pandemia no ha afectado a todos por igual, siendo especialmente grave en las personas vulnerables por patología previa o nivel socioeconómico bajo y en los ancianos. La muerte en soledad de miles de personas es un drama que nos interroga sobre la supuesta medicina humanizada y la necesidad de cuidar a la vez o antes que curar. Ahora más que nunca es necesaria una profunda y sincera reflexión que nos permita asumir los posibles errores y tratar de enmendarlos

Bioethics applied to clinical practice is the art of choosing the best option in a given scenario. Any decision which is not optimal is an intrinsically poor one. We are faced by the eternal moral dilemma: how one's sense of duty determines the most suitable path to follow, taking into account both factual evidence and values. We are moral agents and we have a responsibility in this respect. In any situation, there is always a propitious or timely moment to act (Kairos) and we must know how to make the most of it. The current pandemic has not impacted everyone equally; the most severely affected are senior citizens, and clinically vulnerable people with pre-existing medical conditions or of low socioeconomic status. The lonely death of thousands of people is a tragedy that raises questions about supposedly humanized medicine and about the need to provide care while or even instead of healing. More than ever, now is the moment to carry out a profound, honest reflection which may enable us to admit possible errors and endeavour to rectify them

¿A quién y cuándo le interesa el modo de concepción en las técnicas de reproducción asistida? / When and to whom is the method of conception of interest in assisted reproduction techniques?

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Prevención cuaternaria. La contención como imperativo ético / Quaternary prevention: Containment as an ethical necessity

La creciente capacidad de la medicina para producir más iatrogenia que nunca y el riesgo de insostenibilidad de los sistemas sanitarios han generado en los países desarrollados un nuevo concepto de prevención: la prevención cuaternaria, cuyo objetivo es contener la medicalización. La prevención cuaternaria es imprescindible en el fenómeno llamado disease mongering, que podría traducirse por mercantilización de las enfermedades. Potenciar este tipo de prevención y frenar las consecuencias del disease mongering requiere desarrollar todo el potencial institucional de la prevención y toda la voluntad personal de la contención; implica separarnos de la tutela innecesaria de la industria, ser críticos con nuestro trabajo, no ser maleficentes, respetar el principio de justicia sabiéndonos gestores de los limitados recursos públicos, y sentirnos responsables del coste social de oportunidad de las decisiones médicas En este trabajo analizamos desde este punto de vista los cribados en los recién nacidos, los avances en el área de la neonatología y la atención primaria de salud

The growing capacity of medicine to generate more iatrogenic events than ever, and the risk of unsustainability of health systems have led to new prevention concept: quaternary prevention aimed at restraining medicalization. Quaternary prevention is essential in the phenomenon called disease mongering, which could be translated as commercialization of disease. Encouraging this sort of prevention and halting the consequences of disease mongering requires the development of all the institutional potential for prevention, as well as all the personal willingness for restraint; it involves separating us from the unnecessary auspices of industry, being critical of our work, not being maleficent, respecting the principle of justice as managers of the limited public resources and making ourselves feel responsible for the social cost resulting from medical decisions. From this point of view, this work analyses neonatal screening, developments in the area of neonatology and primary health care

[Quaternary prevention: containment as an ethical necessity]. / Prevención cuaternaria. La contención como imperativo ético.

The growing capacity of medicine to generate more iatrogenic events than ever, and the risk of unsustainability of health systems have led to new prevention concept: quaternary prevention aimed at restraining medicalization. Quaternary prevention is essential in the phenomenon called disease mongering, which could be translated as commercialization of disease. Encouraging this sort of prevention and halting the consequences of disease mongering requires the development of all the institutional potential for prevention, as well as all the personal willingness for restraint; it involves separating us from the unnecessary auspices of industry, being critical of our work, not being maleficent, respecting the principle of justice as managers of the limited public resources and making ourselves feel responsible for the social cost resulting from medical decisions. From this point of view, this work analyses neonatal screening, developments in the area of neonatology and primary health care.

Recomendaciones para la toma de decisiones ante la negativa de los padres a la vacunación de sus hijos: análisis ético / Recommendations for making decisions when parents refuse to vaccinate their children: ethical analysis

Vacunar a los niños es la actividad de prevención primaria más efectiva que se conoce y gracias a las vacunas se han salvado muchas vidas. Los movimientos antivacunas siembran dudas acerca de la seguridad y la efectividad de las vacunas infantiles provocando la negativa de algunos padres a vacunar a sus hijos. Dicha negativa plantea un conflicto de valores entre el derecho de los padres a la crianza de sus hijos según sus creencias y el de justicia, al poner en riesgo la inmunidad del grupo. En España, la ley protege esta capacidad de decisión de los padres al no obligar al cumplimiento del calendario oficial. Los pediatras tenemos un papel esencial en la decisión de los padres y debemos informar con rigor y claridad. Es necesario explorar los valores de los padres y sus preocupaciones, desde la empatía, buscando acuerdos. El respeto a la autonomía no nos exime de argumentar e intentar persuadir para conseguir actitudes y decisiones saludables para los niños. Nuestro compromiso desde el fomento de la responsabilidad es esencial para lograr mantener altos niveles de vacunación que protejan la salud infantil (AU)

Vaccinating children is the most effective primary prevention activity and many lives have been saved due to vaccines. Anti-vaccine movements have spread doubts about the safety and effectiveness of childhood vaccines, leading to some parents refusing to vaccinate their children. This refusal raises a conflict of values between the right of parents to the upbringing of their children according to their beliefs and justice, putting the immunity of the group at risk. In Spain, the law protects this ability for parents to decide not to comply with the official vaccine program. Pediatricians play an essential role in a parent's decision, and must provide accurate information about vaccination. It is necessary to explore The values of the parents, their concerns need to be empathetically examined, in order to reach an agreement. Respect for freedom does not exempt us from using discussion and persuasion to achieve attitudes and healthy choices for children. Our commitment to responsability promotion is essential for maintaining high vaccination levels that protect the health of children (AU)

[Recommendations for making decisions when parents refuse to vaccinate their children: ethical analysis]. / Recomendaciones para la toma de decisiones ante la negativa de los padres a la vacunación de sus hijos: análisis ético.

Vaccinating children is the most effective primary prevention activity and many lives have been saved due to vaccines. Anti-vaccine movements have spread doubts about the safety and effectiveness of childhood vaccines, leading to some parents refusing to vaccinate their children. This refusal raises a conflict of values between the right of parents to the upbringing of their children according to their beliefs and justice, putting the immunity of the group at risk. In Spain, the law protects this ability for parents to decide not to comply with the official vaccine program. Pediatricians play an essential role in a parent's decision, and must provide accurate information about vaccination. It is necessary to explore The values of the parents, their concerns need to be empathetically examined, in order to reach an agreement. Respect for freedom does not exempt us from using discussion and persuasion to achieve attitudes and healthy choices for children. Our commitment to responsability promotion is essential for maintaining high vaccination levels that protect the health of children.

Evaluación de los conocimientos legales y éticos de los profesionales sanitarios en relación con el adolescente / No disponible

Introducción: la atención al adolescente menor de edad requiere conocer la doctrina del menor maduro y reflexionar sobre los derechos de los pacientes. La Ley básica 41/2002 reguladora de la autonomía del paciente (LBAP) defiende el derecho del paciente a la información, consentimiento y confidencialidad. Conscientes de la falta de criterios uniformes en actuaciones que requieren considerar la capacidad del menor decidimos diseñar este estudio con el fin de conocer la opinión de los profesionales en este sentido. Material y métodos: estudio multicéntrico mediante encuesta anónima dirigida a 400 médicos de Atención Primaria y Atención Especializada. Consta de 13 preguntas cerradas, dirigidas a evaluar conocimientos, comportamientos y actitudes ante adolescentes de 12 a 18 años. Resultados: los conocimientos de la LBAP son escasos: el 25% conoce cuál es la mayoría de edad sanitaria y el 34% sabe que la persona encargada de valorar la madurez es el médico del paciente. La doctrina del menor maduro la conoce en profundidad el 8,5%. Solo el 23,6% utiliza la firma del menor en el consentimiento informado. El 73% de los encuestados refiere no tener dificultad para considerar maduro a un menor de edad y se siente capaz de deliberar con él cuando existe un conflicto de intereses. Conclusiones: es necesario mejorar la formación de los aspectos éticos y legales en la asistencia sanitaria y sería deseable generalizar la docencia en bioética (AU)

Introduction: adequate healthcare of the adolescent minor requires the physician to be familiar with the mature minor doctrine and to be sensitive to patients’ rights. The 41/2002 Act regulating patient autonomy (LBAP) defends the patient’s right to information, consent and confidentiality. Conscious of the lack of a standard approach to medical scenarios in which the evaluation of a minor’s capacity is required, we decided to design this study in order to find out physicians’ opinion of this issue. Materials and methods: multicentric study using an anonymous survey of 400 Primary Care and Hospital-based Specialist physicians. It comprises 13 closed questions aimed at assessing knowledge, approaches and attitudes when treating adolescents of 12-18 years of age. Results: physicians’ knowledge of Act 41/2002 (LBAP) are very limited: 25% of those surveyed know the legal age of majority for health issues while 34% know that the patient’s doctor is the person ultimately responsible for assessing patient maturity. Eight point five percent have detailed knowledge of the mature minor doctrine. Only 23.6% require the minor to sign informed consent. Seventy-three percent state that they find no difficulty in thinking of minors as being potentially mature and the same number are able to carry out a rational discussion with minors in the event of a conflict of interests. Conclusions: it is necessary to extend physicians’ knowledge of the legal and ethical issues involved in healthcare and it would be advisable to make the teaching of Bioethics more widespread (AU)

Objeción de conciencia y su repercusión en la sanidad / Conscientious objection and its repercussion in public health care

La objeción de conciencia (OC), inicialmente limitada al servicio militar, ha ido poco a poco multiplicando sus modalidades. En el campo sanitario existe un gran número de supuestos, de tal manera que, en un futuro próximo, será la sede por excelencia de los conflictos entre conciencia y ley. Cada especialidad médica tiene unos supuestos específicos y propios con respecto a la OC. La extensión del fenómeno ha desencadenado un debate jurídico sobre la naturaleza del derecho a la objeción de conciencia, y de la conveniencia de su regulación por modalidades. Existe cierta confusión acerca del concepto de esta figura jurídica, a la vez que todos estamos de acuerdo con el hecho de que una sociedad será mejor y más justa si se esfuerza en respetar la conciencia de sus miembros, y no obliga al heroísmo precisamente a las personas con mayor sensibilidad moral. En no pocas ocasiones, los pediatras tomamos conciencia de ella, cuando se plantea un caso aislado que a veces necesita una respuesta urgente. En esta revisión se pretende analizar el concepto de objeción de conciencia, plantear algunos supuestos en el campo sanitario, revisar su marco jurídico y realizar un breve análisis ético (AU)

Conscientious objection, initially limited to the military service has gradually multiplied its varieties. A great number of hypotheses exists in the sanitary field in such a way that this will be the supreme core of conflicts between conscientiousness and law in the near future. Each medical field has its own specific hypotheses in relation to conscientious objection. The spread of the phenomenon has unleashed juridical debate about the nature of the right to conscientious objection, and the suitability of its standardization by varieties. There is some confusion about the concept of this juridical figure, and at the same time we all agree on the fact that a society well be better and fairer if its members exert effort in respecting the conscientiousness and do not oblige heroism, especially to people whit more moral sensitivity. In not few occasions, we, pediatricians become aware of that, when an isolated case appears, which sometimes needs an urgent response. The concept of conscientious objection is meant to be analyzed in this review propose some hypotheses in the sanitary field, revise its juridical framework and attain a brief ethic analysis (AU)

El menor maduro / The mature minor

El menor maduro es un término para designar a los adolescentes menores de edad desde el punto de vista legal, pero con capacidad suficiente para involucrarse en la toma de decisiones, tanto médicas, como de otro tipo. Adquiere cada vez más importancia, dada la participación activa de los adolescentes en nuestra sociedad, y el derecho a la información sanitaria que tiene el paciente. Adiferencia de lo que sucede en el adulto a los que se les supone la capacidad de autonomía, en los menores debe demostrarse su capacidad y madurez moral, y esta verificación le compete al médico responsable del paciente. Plantearemos una serie de preguntas y problemas más frecuentes en la práctica clínica y haremos una serie de consideraciones acerca de la doctrina del menor maduro, las edades con algún tipo de significación, la Ley 41/2002 y el grado de madurez

Mature minor is a term that designates adolescents who are minors from the legal point of view, but who have sufficient capacity to be involved in medical and other type of decision making. It is acquiring increasing importance, given the active participation of adolescents in our society and the patient's right to health care information. On the contrary to that which occurs in the adult, in whom the autonomy capacity is supposed, the minor must demonstrate his/her capacity and moral maturity and this verification is up to the patient's responsible physician. We will establish a series of questions and the most frequent problems in the clinical practice and will give a series of considerations on the doctrine of the mature minor, ages with some type of significance, Law 41/2002 and grade of maturity

Síndrome opercular y trastorno del lenguaje en la infancia. Aportación de dos casos / Opercular syndrome and speech disorder in young childhood. Based on two cases

El síndrome opercular es un trastorno del control voluntario de la musculatura de la cara, lengua, faringe y masticatoria, originado por una lesión bilateral de la corteza opercular anterior. Si bien se ha descrito sobre todo en la edad adulta, en relación con lesiones de etiología vascular, también es posible su presencia en la edad pediátrica con una etilogía más variada: meningoencefalitis, patología perinatal, traumatismo craneal, displasia cortical. Aportamos a dos pacientes en los que la afectación del lenguaje era una manifestación destacada y cuyo diagnóstico se confirmó con el estudio radiológico, destacando la necesidad de efectuar estudios radiológicos en los pacientes con problemas del lenguaje. (AU)

Atención integral a la infancia: Modelo biopsicosocial / Complete care for the young child: Biopsychosocial model

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Marcadores serológicos de enfermedad celíaca en niños con sintomatología digestiva y extradigestiva / Serological markers of celiac disease in children with digestive and extradigestive symptoms

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[Nephrotic syndrome in infancy: clinical, therapeutic and follow up characteristics in 100 cases]. / Síndrome nefrótico de la infancia: características clínicas, terapéuticas y evolutivas en 100 casos.

In order to understand the natural history, clinical features, anatomopathological findings and response to the initial treatment with steroids of the nephrotic syndrome (NS) during childhood, a group of 100 children under 14 years (46 with renal biopsy) observed for an average period of 4 years and 8 months, was reviewed retrospectively. The patients were divided into 3 groups: idopathic NC (89), secondary NS (9) and NS in the first six months of life (2). In the group of idiopathic NS, in which the significant predominance of males (2.8/1) was confirmed, in 69% of the patients the diagnosis was made between the ages of 2 and 5 years. Edemas were found, sometimes accompanied by oliguria and weigh gain, in 77% of the cases. The periods of hypertension and hematuria were infrequent and brief. Thirty eight kidney biopsies were carried out and showed: 25 minimal changes NS, 7 diffuse mesangial proliferative glomerulonephritis (DMPGN), 3 membranoproliferative glomerulonephritis (MPGN), 2 membranous glomerulonephritis (MGN) and 1 segmental and focal glomerulosclerosis. Of the 83 patients treated in first instance with corticosteroids, a positive response was obtained in 72 (87%), although 44% of them have shown to be cortico-dependent. After an average follow up period of 4 years and 8 months, only 2 children, one with MPGN and the other with MGN, are now in chronic renal failure (CRF). In 5 ot the 9 patients included in the second group, the NS was secondary to a Henoch Schönlein purpura. The kidney biopsies showed DMPGN in three of them.(ABSTRACT TRUNCATED AT 250 WORDS)

[Nemaline myopathy: apropos of a case]. / Miopatía nemalínica: A propósito de una observación.

Authors present a girl without familiar antecedents of consanguinity with mild motor deficiency, hypotonicity and obesity during infancy, with progressive posterior healing. The girl did not present Marfan's habit or special phenotype, and had small hypertrophy of calfs. There was not recurrent respiratory infections. EMG was myopathic and muscle dependent seric enzymes (CPK, ALD, LDH...) were normal. Radiographically films showed increased relationship fat-muscle and pathology by MO and ME confirmed the presence of small sticks in muscle fibers. After evaluating the case as a neomutation, the genetic counseling is made.