RESUMEN
Maternal-fetal therapy (MFT) is special because treatment of the fetus is exclusively possible through the body of another person, the pregnant woman. MFT is a broad specialty with diverse interventions. In this manuscript several examples of innovations in MFT are discussed to illustrate the shift of lifesaving interventions to interventions aiming to improve morbidity of the future child. The broadening of the scope and shift towards prenatal treatments improving morbidity result in new ethical challenges. Particularly attention is needed for counseling and (the risk of) therapeutic misconception.
Asunto(s)
Consejo/ética , Toma de Decisiones/ética , Enfermedades Fetales/terapia , Terapias Fetales/ética , Atención Prenatal/ética , Niño , Consejo/métodos , Femenino , Terapias Fetales/métodos , Feto , Humanos , Embarazo , Complicaciones del Embarazo/terapiaRESUMEN
Thalassemias are among the most frequent genetic disorders worldwide. They are an important social and economic strain in high-risk populations. The benefit of ß-thalassemia screening programs is growing evident but the capacity to diagnose fetal ß-thalassemia exceeds the treatment possibilities and even when treatment before birth becomes feasible, difficult decisions about the relative risks will remain. This paper can be of practical and ethically justified aid when counseling women about screening, diagnosis, and treatment of ß-thalassemia. It takes in consideration various social challenges, medical issues such as antenatal screening, preimplantation genetic diagnosis, prenatal diagnosis, non-invasive prenatal testing and prenatal therapy. We also describe the Sardinian experience in applying and promoting high-risk population screening and diagnosis programs and future trends in the management of ß-thalassemia.
Asunto(s)
Aceptación de la Atención de Salud , Diagnóstico Prenatal/ética , Relaciones Profesional-Paciente/ética , Determinantes Sociales de la Salud , Talasemia beta/diagnóstico , Consejo Dirigido/ética , Femenino , Terapias Fetales/ética , Terapias Fetales/métodos , Pruebas Genéticas/ética , Humanos , Italia , Participación del Paciente , Embarazo , Diagnóstico Prenatal/métodos , Riesgo , Factores Socioeconómicos , Talasemia beta/genética , Talasemia beta/terapiaRESUMEN
In this paper, we aim to stimulate ethical debate about the morally relevant connection between ectogenesis and the foetus as a potential beneficiary of treatment. Ectogenesis could facilitate foetal interventions by treating the foetus independently of the pregnant woman and provide easier access to the foetus if interventions are required. The moral relevance hereof derives from the observation that, together with other developments in genetic technology and prenatal treatment, this may catalyse the allocation of a patient status to the foetus. The topic of foetal medicine is of growing interest to clinicians, and it also deserves due attention from an ethical perspective. To the extent that these developments contribute to the allocation of a patient status to the foetus (and to its respective interests for medical treatment), normative questions arise about how moral responsibilities towards foetal interests should be balanced against the interests of the pregnant woman. We conclude that, even if ectogenesis could facilitate foetal therapy, it is important to remain sensitive to the fact that it would not circumvent the key ethical concerns that come with in utero foetal treatment and that it may even exacerbate potential conflicts between directive treatment recommendations and the pregnant woman's autonomous decision to the contrary.
Asunto(s)
Ectogénesis/ética , Terapias Fetales/ética , Feto , Mujeres Embarazadas , Beneficencia , Femenino , Humanos , Obligaciones Morales , Autonomía Personal , Embarazo/éticaRESUMEN
Advances in imaging and technique have pushed the boundaries of the types of surgical interventions available to fetuses with congenital and developmental abnormalities. This review focuses on fundamental aspects of fetal anesthesia, including the physiologic changes of pregnancy, uteroplacental perfusion, and fetal physiology. We discuss the types of fetal surgeries and procedures currently being performed and discuss the specific anesthetic approaches to different categories of fetal surgeries. We also discuss ethical aspects of fetal surgery and anesthesia.
Asunto(s)
Anestesia de Conducción/métodos , Anestesia General/métodos , Anestésicos/uso terapéutico , Enfermedades Fetales/cirugía , Terapias Fetales/métodos , Feto/cirugía , Analgésicos Opioides/uso terapéutico , Cesárea/métodos , Femenino , Terapias Fetales/ética , Viabilidad Fetal , Fetoscopía/métodos , Edad Gestacional , Humanos , Inyecciones Intramusculares , Procedimientos Quirúrgicos Mínimamente Invasivos/métodos , Agujas , Bloqueantes Neuromusculares/uso terapéutico , Circulación Placentaria/fisiología , Embarazo/fisiología , Cirugía Asistida por ComputadorRESUMEN
To act or not to act? Developments in prenatal and postnatal care for children with spina bifida aperta Until the middle of the twentieth century, newborns with spina bifida aperta had low chances of survival. Advances in the treatment of hydrocephalus, among other conditions, led to increased chances of survival during the 1960s. This also revealed the downsides of the treatment of spina bifida patients since some considered the quality of life of a number of these patients to be unacceptable. But withholding treatment also had negative consequences, leading to an ethical deadlock. Over the past thirty years - besides postnatal closure of the neural tube defect - more emphasis has been put on selective pregnancy termination and sporadic active termination of life in newborns with very severe forms of spina bifida. At the same time, new treatment strategies, such as foetal surgery, are being developed. With this historical overview, we illustrate the way in which technological developments and ethical dilemmas are constantly affecting each other.
Asunto(s)
Aborto Eugénico , Eutanasia Activa , Terapias Fetales , Espina Bífida Quística/terapia , Aborto Eugénico/ética , Eutanasia Activa/ética , Terapias Fetales/ética , Humanos , Recién Nacido , Atención Posnatal , Atención Prenatal , Calidad de VidaRESUMEN
Anhydramnios caused by early anuria is thought to be universally fatal due to pulmonary hypoplasia. Bilateral renal agenesis and early fetal renal failure leading to anhydramnios constitute early pregnancy renal anhydramnios (EPRA). There have been successful reports of amnioinfusions to promote lung growth in the setting of EPRA. Some of these successfully treated EPRA fetuses have survived the neonatal period, undergone successful dialysis, and subsequently received a kidney transplant. Conversely, there are no reports of untreated EPRA survivors. This early success of amnioinfusions to treat EPRA justifies a rigorous prospective trial. The objective of this study is to provide a review of what is known about fetal therapy for EPRA and describe the Renal Anhydramnios Fetal Therapy trial. We review the epidemiology, pathophysiology, and genetics of EPRA. Furthermore, we have performed systematic review of case reports of treated EPRA. We describe the ethical framework, logistical challenges, and rationale for the current single center (NCT03101891) and planned multicenter trial.
Asunto(s)
Anuria/complicaciones , Terapias Fetales/métodos , Enfermedades Renales/terapia , Riñón/anomalías , Anuria/epidemiología , Anuria/terapia , Femenino , Enfermedades Fetales/terapia , Terapias Fetales/ética , Humanos , Riñón/embriología , Enfermedades Renales/epidemiología , Enfermedades Renales/genética , Pulmón/embriología , EmbarazoAsunto(s)
Terapias Fetales/métodos , Anomalías Congénitas/terapia , Femenino , Enfermedades Fetales/diagnóstico , Enfermedades Fetales/terapia , Terapias Fetales/ética , Terapias Fetales/tendencias , Fetoscopía/métodos , Humanos , Recién Nacido , Manejo del Dolor/métodos , Atención Perinatal/métodos , Embarazo , Ultrasonografía Intervencional , Ultrasonografía PrenatalRESUMEN
Maternal-fetal surgery is performed on two patients, the pregnant patient and the fetal patient. Ethics is therefore an essential dimension of maternal-fetal surgery. From its beginnings in only a few centers, various procedures have become available in highly specialized centers in developed countries. Innovation and research have played an indispensable role in the development of maternal-fetal surgery and will continue to do so. In this article we present ethically justified criteria, based on the ethical concept of the fetus as a patient, for clinical innovation and research of maternal-fetal surgery and for the professionally responsible transition from innovation and research into clinical practice. These criteria are designed to be used by clinical innovators, clinical investigators, and by oversight committees.
Asunto(s)
Ética Médica , Terapias Fetales/ética , Feto/cirugía , Femenino , Humanos , EmbarazoRESUMEN
In this paper, I will argue that the moral assessment of the prenatal selection and postnatal modification biotechnologies requires a nuanced approach, which pays close attention to the variety of sometimes conflicting parental roles and reasons involved in decisions for and against their use. I will focus on several related but distinct reasons that parents have, or give, for modifying existing children or selecting future children. Many of these reasons are expressed in terms of more effective parenting. Because there is a plurality of legitimate parental goals, I will conclude that assessing parental interventions requires us to adjudicate conflicts or tradeoffs among those goals.
Asunto(s)
Conducta de Elección/ética , Anomalías Congénitas/prevención & control , Terapias Fetales/ética , Mejoramiento Genético/ética , Principios Morales , Responsabilidad Parental/psicología , Bioética , Femenino , Humanos , Masculino , Ética Basada en PrincipiosRESUMEN
Management of congenital diaphragmatic hernia (CDH) begins soon after it is detected, whether antenatally or postnatally. Assessment of the severity of the condition, associated congenital anomalies, maternal health and related issues, weight of the fetus/baby, mode of delivery, timing of delivery, immediate appropriate management of the baby with CDH at birth, appropriate utilization of available treatment modalities as well as infrastructure of the treating institute have an impact on the outcome of the neonate. Survival without significant long-term/permanent morbidity is considered as good outcome. With advances in antenatal diagnosis, several legal and ethical considerations have cropped up. While on one hand there are proponents of early antenatal diagnosis and medical termination of pregnancy (MTP), on the other hand there are several socio-cultural groups who look upon human life as precious and argue against MTP. There is an ongoing ethical battle between maternal vs. fetal rights; there is no way to put a lid on the controversy whether the mother be allowed to choose in favor of MTP after being aware of the anomalous fetus or, we must attempt to save every fetus irrespective of the antenatal diagnosis of life-threatening anomalies. Notwithstanding, appropriate assessment of the condition, thorough counseling and sound evidence-based decisions could avert ethical dilemma in most cases. This review article provides information about the various choices available in the diagnostic and treatment armamentarium, though it should be kept in mind that the entire spectrum of management strategies may not be universally available.
Asunto(s)
Hernias Diafragmáticas Congénitas/cirugía , Oxigenación por Membrana Extracorpórea , Terapias Fetales/ética , Terapias Fetales/métodos , Feto/cirugía , Hernias Diafragmáticas Congénitas/complicaciones , Hernias Diafragmáticas Congénitas/diagnóstico , Humanos , Hipertensión Pulmonar/etiología , Recién Nacido , Diagnóstico Prenatal/ética , Diagnóstico Prenatal/métodos , Respiración ArtificialRESUMEN
En paralelo con los recientes avances en el diagnóstico prenatal del síndrome de Down, empieza a disponerse de algunas terapias. Algunos grupos sugieren que las intervenciones prenatales pueden abordar, mejor que las postnatales, los problemas cognitivos propios del síndrome de Down. Se están ya desarrollando algunos ensayos clínicos. El artículo analiza los pros y los contras éticos en relación con la intención de mejorar los aspectos cognitivos mediante intervenciones farmacológicas. Si esto se acepta, es el momento de analizar si la terapia fetal es conveniente, e incluso deseable. Siempre sobre la base de una eficacia bien comprobada y real, y de una carencia de efectos adversos sobre la madre y el feto. En el más optimista de los resultados, ¿sería ético obligar a la madre a aceptar esa terapia?
Parallel to recent advances in prenatal screening for Down syndrome (DS), therapies for different aspects of the condition have become available. As intellectual disability is a key aspect, this is an active area for research. Several groups have hypothesized that prenatal interventions will give better chances at improving cognitive functioning in persons with DS than postnatal treatment. Clinical trials are being developed. We first discuss the ethical pros and cons of trying to improve cognitive functioning in persons with DS to see if there are categorical objections to the general idea, and then move on to explore ethically relevant aspects of the prospect of developing fetal therapy for DS (FTDS). Inviting pregnant women to participate in FTDS-research should be based on adequate pre-clinical trials. Should FTDS be proven to be effective and safe, women carrying a fetus with trisomy 21 who have decided to continue the pregnancy may have a moral obligation to make use of this option
Asunto(s)
Humanos , Femenino , Embarazo , Recién Nacido , Síndrome de Down/terapia , Terapias Fetales/ética , Trastornos Neurocognitivos/terapia , Diagnóstico Prenatal , Enfermedades Fetales/terapia , Medicina de Precisión/tendencias , ComorbilidadRESUMEN
El autor hace una valoración ética sobre la posibilidad de administrar fármacos a la madre de un feto con síndrome de Down, con el fin de mejorar el desarrollo cerebral del nasciturus desde las primeras etapas de la vida. Considera que el ensayo clínico que ya se está preparando con el fármaco fluoxetina (prozac), un antidepresivo con el que se ha demostrado que mejora la neurogénesis en modelos animales de síndrome de Down, no está éticamente justificado debido al actual riesgo que conlleva
An ethic evaluation is made on the possibility to administer drugs during pregnancy to mothers who will deliver a baby with Down syndrome, with the objective to improve the neural development of the fetus as earlier as possible. A clinical trial has been proposed to analyze the effect of fluoxetine (prozac), an antidepressive drug that has been shown to improve neurogenesis in animal models of Down syndrome. On the basis of the present knowledge, the author considers that the trial is not ethically justified
Asunto(s)
Humanos , Femenino , Embarazo , Síndrome de Down/terapia , Terapias Fetales/ética , Trastornos Neurocognitivos/tratamiento farmacológico , Discusiones Bioéticas , Discapacidades del Desarrollo/prevención & control , Desarrollo Fetal , Fluoxetina/uso terapéuticoRESUMEN
BACKGROUND: The results of the Management of Myelomeningocele Study (MOMS) randomized controlled trial have demonstrated that maternal-fetal surgery (MFS) for myelomeningocele (MMC) compared to postnatal MMC repair has clear neurological benefits for the child at 12 and 30 months of age. Level I evidence nevertheless does not provide answers to many questions in this delicate field. Since the beginning of 2012, our fetal center has been offering MFS for spina bifida aperta (SBA) to patients from different European and non-European countries, in a societal context where termination of pregnancy is the option chosen by most patients when being informed of this diagnosis. METHODS: We aim to explore in this text some of the ethical, legal, and psychological issues that we have encountered. RESULTS: For many of these questions, we do not have definite answers. A pregnant patient when diagnosed with a MMC fetus is a vulnerable subject. She needs to be referred to a highly specialized center with sufficient expertise in diagnosis and in all therapeutic options. Objective but compassionate counseling is of paramount importance. It is required that a multidisciplinary professional team obtains full voluntary consent from the mother after providing an appropriate information including diagnosis, short-, medium-, and long-term prognosis as well as benefits and harms of the fetal surgery. CONCLUSION: The latter should be offered with full respect for maternal choice and individual assessment and perception of potential risks taking into consideration legislation in the fetal center and the parents' country legislation.
Asunto(s)
Enfermedades Fetales/cirugía , Terapias Fetales , Jurisprudencia , Meningomielocele/cirugía , Europa (Continente) , Femenino , Terapias Fetales/ética , Terapias Fetales/métodos , Terapias Fetales/psicología , Feto/anomalías , Feto/cirugía , Humanos , EmbarazoRESUMEN
The field of maternal-fetal intervention is rapidly evolving with new technologies and innovations. This raises complex ethical and medico-legal challenges related to what constitutes innovative treatment versus human experimentation, with or without the umbrella of "medical research." There exists a gray zone between these black and white classifications, but there are also clear guidelines that should be responsibly negotiated when making the essential transition between an innovative treatment and a validated therapy. This review attempts to define some of the current and future ethical challenges in maternal-fetal research, and to offer constructive insight into how they might be addressed.
Asunto(s)
Investigación Biomédica , Terapias Fetales/ética , Ética Médica , HumanosRESUMEN
The introduction of routine fetal ultrasound and the technical improvements in ultrasound equipment have greatly increased our ability to diagnose fetal anomalies. As a consequence, congenital anomalies are diagnosed today earlier and in a greater number of patients than ever before. The development of fetal intervention and fetal surgery techniques, improved anesthesia methodology, and sophisticated perinatal care at the limits of viability, have now made prenatal management of some birth defects or fetal malformations a reality. The increasing number of indications for fetal therapy and the apparent desire of parents to seek out these procedures have raised concern regarding the ethical issues related to the therapy. While fetal therapy may have a huge impact on the prenatal management of some congenital birth defects and/or fetal malformations, because of the invasive nature of these procedures, the lack of sufficient data regarding long-term outcomes, and the medical/ethical uncertainties associated with some of these interventions there is cause for concern. This chapter aims to highlight some of the most important ethical considerations pertaining to fetal therapy, and to provide a conceptual ethical framework for a decision-making process to help in the choice of management options.
Asunto(s)
Anomalías Congénitas/terapia , Toma de Decisiones , Terapias Fetales/ética , Ultrasonografía Prenatal , Consejo , Femenino , Humanos , Embarazo , Diagnóstico PrenatalRESUMEN
PURPOSE OF REVIEW: Although most fetal disorders can be treated after birth, a few conditions that predictably lead to fetal or neonatal death, or that progress significantly before birth, are ideally treated prenatally. The number of centers offering fetal therapeutic procedures is gradually increasing worldwide. Patients and caregivers should be aware of the potential maternal risks of these interventions. RECENT FINDINGS: For transplacental medical therapy (corticosteroids, antiarrhythmics and immunoglobulins), severe maternal adverse events are rare, when done in expert centers. Minimally invasive procedures carry a risk of maternal complications of about 5%, with 1% being severe complications (pulmonary edema or placental abruption). Open fetal surgery carries important risks to the mother, both in the index pregnancy (pulmonary edema, placental abruption, chorioamnionitis and scar dehiscence) and in subsequent pregnancies (uterine rupture), yet some of these risks are decreasing with surgical refinement and increasing experience of the surgical team. SUMMARY: The information in this manuscript provides a base to counsel expectant mothers on risk of fetal therapy.
Asunto(s)
Enfermedades Fetales/cirugía , Terapias Fetales , Procedimientos Quirúrgicos Mínimamente Invasivos , Complicaciones Posoperatorias/mortalidad , Complicaciones del Embarazo/cirugía , Mujeres Embarazadas , Adulto , Anomalías Congénitas , Consejo Dirigido , Femenino , Enfermedades Fetales/diagnóstico , Enfermedades Fetales/psicología , Terapias Fetales/ética , Terapias Fetales/métodos , Terapias Fetales/mortalidad , Edad Gestacional , Humanos , Mortalidad Materna , Procedimientos Quirúrgicos Mínimamente Invasivos/ética , Procedimientos Quirúrgicos Mínimamente Invasivos/métodos , Procedimientos Quirúrgicos Mínimamente Invasivos/mortalidad , Embarazo , Complicaciones del Embarazo/diagnóstico , Complicaciones del Embarazo/psicología , Mujeres Embarazadas/psicología , Diagnóstico Prenatal , Factores de Riesgo , Resultado del TratamientoRESUMEN
BACKGROUND: Parallel to recent advances in prenatal screening for Down syndrome (DS), therapies for different aspects of the condition have become available. As intellectual disability is a key aspect, this is an active area for research. Several groups have hypothesized that prenatal interventions will give better chances at improving cognitive functioning in persons with DS than postnatal treatment. Clinical trials are being developed. METHOD: We first discuss the ethical pros and cons of trying to improve cognitive functioning in persons with DS to see if there are categorical objections to the general idea, and then move on to explore ethically relevant aspects of the prospect of developing fetal therapy for DS (FTDS). RESULTS: Only on the basis of a one-dimensional emphasis on the social model of disability would (fetal) therapy aimed at cognitive improvement be inherently problematic. CONCLUSIONS: Inviting pregnant women to participate in FTDS-research should be based on adequate pre-clinical trials, as well as information aimed at avoiding the so-called 'therapeutic misconception'. Should FTDS be proven to be effective and safe, women carrying a fetus with trisomy 21 who have decided to continue the pregnancy may have a moral obligation to make use of this option. © 2016 John Wiley & Sons, Ltd.
Asunto(s)
Síndrome de Down/terapia , Terapias Fetales/ética , Animales , Cognición/fisiología , Modelos Animales de Enfermedad , Síndrome de Down/diagnóstico , Síndrome de Down/psicología , Femenino , Terapias Fetales/métodos , Humanos , Recién Nacido , Ratones , EmbarazoRESUMEN
Prenatal screening for Down syndrome has to date focused on facilitating the informed choice to continue or not with a pregnancy. The non-invasive prenatal test (NIPT) for Down syndrome does potentially offer the option to apply foetal neurocognitive therapy for Down syndrome (FTDS). Current research in animal models looks promising and therefore a proactive ethical reflection in relation to clinical trials is urgently needed. This discussion includes an exploration of the ethical aspects of FTDS. There seem to be no convincing a priori objections on the basis of the social model of disability. Arguments in terms of (respect for) autonomy, wellbeing and justice seem to in principle support such therapy. Still, both the conditions for sound clinical trials and the implications of possible effective therapy for current prenatal screening need further scrutiny.