Nas vias de interromper ou não a gestação: vivências de gestantes de fetos com anencefalia / On the way to interrupting the gestation or not: experiences of pregnant women with anencephalic fetuses

Resumo A anencefalia é uma malformação caracterizada pela ausência total ou parcial do encéfalo e o Brasil é o quarto colocado em número de nascimentos de fetos anencéfalos no mundo. Existe associação entre anencefalia fetal e maior número de complicações maternas. A partir de 2012 a mulher com gestação de anencéfalo poderá manter ou interromper a gestação, se assim o desejar, sem necessidade de autorização judicial. Objetivos: compreender as vivências das mulheres de fetos com anencefalia e identificar os fatores determinantes para a escolha de interromper ou não interromper a gestação. Estudo qualitativo e método das narrativas de vida, com 12 mulheres, maiores de 18 anos e com diagnóstico de feto anencéfalo, que realizaram a interrupção da gestação ou o parto em uma maternidade pública do Rio de Janeiro. A coleta dos dados foi entre junho e novembro de 2016 e encerrada quando os padrões narrativos alcançaram a saturação progressiva, a partir das recorrências. Os enunciados emergidos após leitura flutuante e aprofundada foram articulados em Núcleos Narrativos e realizada análise comparativa e compreensiva dos dados. Os relatos trouxeram à tona as vivências intensas dessas mulheres, como também as fragilidades existentes em relação ao cuidado e a problemática da interrupção da gestação.

Abstract Anencephaly is a malformation characterized by the total or partial absence of the brain, and Brazil records the fourth largest number of births of anencephalic fetuses in the world. Fetal anencephaly is associated with a more significant number of maternal complications. As of 2012, women with anencephalic gestation were empowered with the right to carry the pregnancy to term or terminate it, if they so desired, without any judicial authorization. Objectives: to understand the experiences of women with fetal anencephaly and to identify the determinant factors for interrupting the gestation or not. This is a qualitative study using the Life Narratives method with 12 women over 18 years old diagnosed with an anencephalic fetus, who interrupted gestation or delivery in a public maternity hospital in Rio de Janeiro. Data were collected between June and November 2016, and the process was finalized when the narrative patterns reached progressive saturation from the recurrences. The statements that emerged following floating and in-depth reading were articulated in Narrative Nuclei, and data comparative and comprehensive analysis was performed. The reports brought to light the intense experiences of these women, as well as the weaknesses existing concerning care and the pregnancy termination issue.

Consenso de la Rama de Genética de la Sociedad Chilena de Pediatría sobre las anomalías congénitas de mal pronóstico vital (ACMPV): Genetics Consensus Committee / Congenital anomalies of poor prognosis

Introducción: La rama de genética de la Sociedad Chilena de Pediatría, en relación con el proyecto de ley que regula la despenalización de la interrupción voluntaria del embarazo en 3 causales, centrándose en la segunda causal que considera al «embrión o feto que padezca una alteración estructural congénita o genética incompatible con la vida extrauterina¼, se reunió para discutir conforme a la evidencia científica qué anomalías congénitas (AC) podrían ser incluidas en el proyecto de ley. Metodología: Los expertos en genética clínica se centraron en 10 AC. Se efectuó revisión bibliográfica y una reunión extraordinaria para discutirla. Resultados: Se acordó no emplear el término «incompatible con la vida extrauterina¼, pues existen excepciones de sobrevidas más prolongadas y cambiar por «anomalía congénita de mal pronóstico vital (ACMPV)¼. Se evaluaron 10 AC: defectos graves de cierre del tubo neural: anencefalia, iniencefalia y craneorraquisquisis, hipoplasia pulmonar, feto acardio, ectopia cordis, triploidía no mosaico, complejo limb body wall, anomalía body stalk, trisomía 13, trisomía 18 y agenesia renal bilateral. Se analizaron los hallazgos sobre prevalencia, historia natural, métodos diagnósticos prenatales, sobrevida, casos descritos de sobrevida prolongada. Para catalogarlas como ACMPV se consideraron: sobrevida posnatal, existencia de tratamientos y evolución posterior e historia natural sin intervenciones. Conclusión: Las ACMPV incluidas serían: anencefalia, hipoplasia pulmonar severa, feto acardio, ectopia cordis cervical, triploidía no mosaico, complejo limb body wall, anomalía body stalk, trisomía 13 no mosaico, trisomía 18 no mosaico y agenesia renal bilateral. Se requiere para el diagnóstico que toda mujer gestante tenga acceso a evaluaciones ecográficas de anatomía fetal, y en ocasiones a resonancia magnética y estudios citogenéticos y moleculares.

Introduction: The Genetic Branch of the Chilean Society of Paediatrics, given the draft Law governing the decriminalisation of abortion on three grounds, focusing on the second ground, which considers the "embryo or foetus suffering from a congenital structural anomaly or a genetic disorder incompatible with life outside the womb", met to discuss the scientific evidence according to which congenital anomalies (CA) may be included in this draft law. Methodology: Experts in clinical genetics focused on 10 CA, reviewed the literature evidence, and met to discuss it. Results: It was agreed not to use the term "incompatible with life outside the womb", as there are exceptions and longer survivals, and change to "congenital anomaly of poor prognosis (CAPP)". Ten CA were evaluated: serious defects of neural tube closure: anencephaly, iniencephaly and craniorachischisis, pulmonary hypoplasia, acardiac foetus, ectopia cordis, non-mosaic triploidy, "limb body wall" complex, "body stalk" anomaly, trisomy 13, trisomy 18, and bilateral renal agenesis. Findings on the prevalence, natural history, prenatal diagnostic methods, survival, and reported cases of prolonged survival were analysed. Post-natal survival, existence of treatments, and outcomes, as well as natural history without intervention, were taken into account in classifying a CA as a CAPP. Conclusion: A CAPP would be: anencephaly, severe pulmonary hypoplasia, acardiac foetus, cervical ectopia cordis, non-mosaic triploidy, limb body wall complex, body stalk anomaly, non-mosaic trisomy 13, non-mosaic trisomy 18, and bilateral renal agenesis. For their diagnosis, it is required that all pregnant women have access to assessments by foetal anatomy ultrasound and occasionally MRI, and cytogenetic and molecular testing.

El aborto eugenésico podría explicar la menor mortalidad infantil existente en Cuba comparada con la de Chile / Eugenic abortion could explain the lower infant mortality in Cuba compared to that in Chile

Background: Cuba and Chile have the lower infant mortality rates of Latin America. Infant mortality rate in Cuba is similar to that of developed countries. Chilean infant mortality rate is slightly higher than that of Cuba. Aim: To investigate if the lower infant mortality rate in Cuba, compared to Chile, could be explained by eugenic abortion, considering that abortion is legal in Cuba but not in Chile. Material and Methods: We compared total and congenital abnormalities related infant mortality in Cuba and Chile during 2008, based on vital statistics of both countries. Results: In 2008, infant mortality rates in Chile were significantly higher than those of Cuba (7.8 vs. 4.7per 1,000 live born respectively, odds ratio (OR) 1.67; 95% confidence intervals (Cl) 1.52-1.83). Congenital abnormalities accounted for 33.8 and 19.2% of infant deaths in Chile and Cuba, respectively. Discarding infant deaths related to congenital abnormalities, infant mortality rate continued to be higher in Chile than in Cuba (5.19 vs. 3.82 per 1000 live born respectively, OR 1.36; 95%CI 1.221.52). Conclusions: Considering that antenatal diagnosis is widely available in both countries, but abortion is legal in Cuba but not in Chile, we conclude that eugenic abortion may partially explain the lower infant mortality rate observed in Cuba compared to that observed in Chile.

¿Existe el aborto eugenésico? / Does the eugenic abortion exist?

El aborto eugenésico tiene diferentes significados y connotaciones en el ámbito filosófico, en el médico-asistencial y en el médico-legal. Asistimos por medio de determinadas prácticas y legislaciones a la interrupción del embarazo con distintos fines. Se reflexiona sobre estos procedimientos, en particular, sobre si son abortos eugenésicos o se lleva a cabo una criptoeugenesia.

The eugenic abortion has different meaning and connotations in the philosophical scope, for the welfare doctor and the legal doctor. We attend by means of certain practices and legislations the interruption of the pregnancy with different aims. It is reflected on these procedures on if they are eugenic abortions or criptoeugenesiais carried out one.

Opinions of decision-makers on the liberalization of abortion laws in Mexico

OBJECTIVE: In the last decade, important advances were made in the struggle for reproductive rights in Mexico. The goal of this study was to discover the opinions of decision-makers about the grounds for legal abortion as well as to explore their perceptions about further liberalization of abortion laws countrywide. MATERIAL AND METHODS: In-depth interviews were conducted with eight prominent decision-makers working in governmental health, law and social institutions as well as representatives of political parties. RESULTS: Six decision-makers favored a further liberalization of abortion laws. They proposed several strategies to move forward with liberalization. Two decision-makers were against abortion under all circumstances. CONCLUSIONS: Three factors seem to play a key role in the liberalization of abortion: a liberal party governing at the state level, a favorable public opinion and the pressure of NGOs promoting reproductive rights. A state-by-state approach seems more effective for generating changes in abortion laws.

OBJETIVO: En la última década se realizaron avances importantes en la lucha por los derechos reproductivos en México. El objetivo del estudio fue conocer las opiniones de tomadores de decisiones (TD) sobre las causales para un aborto legal, así como explorar sus percepciones sobre la liberalización de las leyes en todo el país. MATERIAL Y MÉTODOS: Se realizaron entrevistas a profundidad con ocho TD de instituciones gubernamentales de asuntos sociales, legales y de salud, así como representantes de partidos políticos. RESULTADOS: Seis entrevistados favorecieron la liberalización de las leyes y propusieron varias estrategias para realizarla. Dos entrevistados estuvieron en contra del aborto bajo cualquier circunstancia. CONCLUSIONES: En la liberalización del aborto, tres factores parecen tener un papel relevante: un partido liberal gobernando estatalmente, una opinión pública favorable y la presión de ONG que promueven los derechos reproductivos. El trabajo estatal parece ser más efectivo para generar cambios en las leyes del aborto.

Declining sex ratio: role of society, technology and government regulation in Faridabad district, Haryana.

BACKGROUND: A declining sex ratio at birth has been documented during censuses in India. The decline is especially more in the northern states of Haryana and Punjab. We attempted to assess the role of society (preference for a male child, awareness and acceptability of the practice of sex determination), technology (availability and affordability) and government regulation in the adverse ratio for girls in the Ballabgarh block of Haryana in northern India. METHODS: The population (about 80 000) in the Ballabgarh block has been under constant demographic surveillance for the past 30 years and the data are stored electronically. This was used to determine the sex ratio at birth in the area since 1990. The data on availability of ultrasound machines was collected from the district authorities, as registration of these machines was made mandatory under the Prenatal Diagnostic Techniques Act, 1994. We interviewed 160 mothers and grandmothers to determine the awareness and acceptability of sex determination methods and practices. RESULTS: The demographic data for the past 10 years showed a declining sex ratio-from 881 in 1990-91 to 833 in 2000-01. The data support the view that in the initial part of this period, ultrasound was used for sex determination of all-order births but subsequently was used more in higher-order births. Our interviews with the mothers and grandmothers of the area showed that the practice of sex determination is prevalent and the attitude of the society is ambivalent. The increased availability of ultrasound machines in the area in the past 10 years corresponded to the decline in sex ratio. When the government made the practice illegal, the sex ratio improved only to fall again as the law was not implemented. Later years saw a more stringent implementation of the law and the sex ratio improved again. CONCLUSION: There is a 'demand' for sex determination technology and, therefore, this would continue to be 'supplied'. At most the 'supply' can be regulated. Social engineering efforts need to be targeted at reducing the demand if the sex ratio is to be improved.

Anencefalia: consideraciones bioéticas y juridicas / Anencefalia: bioethics and legal considerations

El objetivo de este trabajo es abordar, desde la perspectiva bioética y juridica una de las situaciones particularmente complejas, en las que puede encontrarse una mujer y su grupo familiar frente al diagnóstico de la gestación de un feto anencefálico, y analizar si la decisi¢n de interrumpir el embarazo puede o no resultar éticamente justificable.

Aborto: sus implicacias legales / Abortion: legal implications

Estudia la figura delictiva del aborto. Revisa los articulos concernientes al Codigo Argentino, analizando cada uno de ellos. Refiere la responsabilidad penal, criminal del medico