Imaging diagnosis and legal implications of brain injury in survivors following single intrauterine fetal demise from monochorionic twins - a review of the literature.

Brain injury of the surviving twin from monochorionic pregnancies following intrauterine fetal demise during the second and third trimesters is a rare but severe complication. Monochorionicity and gestational age at the time of stillbirth seem to be decisive factors in terms of long-term neurologic outcome prediction for the survivor. Magnetic resonance imaging (MRI), diffusion weighted imaging (DWI) in particular, seem to bring the earliest and most accurate diagnosis. Ultrasound detection of brain damage is possible in later stages of fetal brain injury. It is essential to provide early diagnosis and multidisciplinary counsel to the parents to ensure informed decision making. For couples who choose to terminate pregnancy legislation related to late abortion might lead to further distress. Our paper aims to stress the importance of MRI DWI in the evaluation of surviving twins following single intrauterine fetal demise in monochorionic pregnancies and the delicate context of the medical professionals and parents facing this clinical situation, sometimes complicated by legal constraints.

Fetal medicine specialist experiences of providing a new service of termination of pregnancy for fatal fetal anomaly: a qualitative study.

OBJECTIVE: To explore fetal medicine specialists' experiences of caring for parents following a diagnosis of fatal fetal anomaly (FFA) during the implementation of termination of pregnancy (TOP) for FFA for the first time. DESIGN: Qualitative study. SETTING: Fetal medicine units in the Republic of Ireland. POPULATION: Ten fetal medicine specialists from five of the six fetal medicine units. METHODS: nvivo 12 assisted in the thematic analysis of semi-structured in-depth face-to-face interviews. MAIN OUTCOME MEASURES: Fetal medicine specialists' experiences of prenatal diagnosis and holistic management of pregnancies complicated by FFA. RESULTS: Four themes were identified: 'not fatal enough', 'interactions with colleagues', 'supporting pregnant women' and 'internal conflict and emotional challenges'. Fetal medicine specialists feared getting an FFA diagnosis incorrect because of media scrutiny and criminal liability associated with the TOP for FFA legislation. Challenges with the ambiguous and 'restrictive' legislation were identified that 'ostracised' severe anomalies. Teamwork was essential to facilitate opportunities for learning and peer support; however, conflict with colleagues was experienced regarding the diagnosis of FFA, the provision of feticide and palliative care to infants born alive following TOP for FFA. Participants reported challenges implementing TOP for FFA, including the absence of institutional support and 'stretched' resources. Fetal medicine specialists experienced internal conflict and a psychological burden providing TOP for FFA, but did so to 'provide full care for women'. CONCLUSIONS: Our study identified challenges regarding the suitability of the Irish legislation for TOP for FFA and its rapid introduction into clinical practice. It illustrates the importance of institutional and peer support, as well as the need for supportive management, in the provision of a new service. TWEETABLE ABSTRACT: The implementation of termination services for fatal fetal anomaly is complex and requires institutional support.

When is the Promotion of Prenatal Testing for Selective Abortion Wrong?

Medical professionals routinely offer prenatal genetic testing services to their expecting patients. Some bioethicists believe that when these professionals promote the use of such testing for abortion on grounds of disability, they express a devaluing message to and about extant disabled people. Supporters of this expressivist objection further maintain that, in expressing such a message, medical professionals reinforce negative attitudes about extant disabled people and thereby further stigmatize them. But while the expressivist objection has received quite a bit of support from disability rights theorists-in part because of its intuitive appeal-its current formulation suffers from various shortcomings that render it implausible. By invoking tools from the philosophy of language, I present the expressivist objection*: an improved and distinctive formulation of the expressivist objection that preserves some of its core insights. According to this improved formulation, the promotion of prenatal testing for selective abortion can at least sometimes be wrong.

Sex selection and non-invasive prenatal testing: A review of current practices, evidence, and ethical issues.

Non-invasive prenatal testing (NIPT) can determine the sex of the fetus very accurately and very early in gestation. There are concerns that the ease, timing, and accuracy of NIPT sex determination will facilitate sex-selective termination of pregnancy (TOP). Here, we review current practices, the evidence for a link between NIPT and sex-selective TOP, and associated ethical issues. Sex-selective TOP, usually motivated by son preference, has had serious demographic consequences in countries such as India and China. Currently, ultrasound is the primary method by which parents determine the sex of the fetus. The diffusion of ultrasound technology has had a direct impact on the rates of sex-selective TOP. Although NIPT is currently more costly, it is feasible that increased uptake of this technology could have a similar effect. Partly because NIPT is a relatively recent development in prenatal screening, there is little data on the impact of NIPT on sex selection practices. Evidence that NIPT is playing a role in sex-selective TOP remains largely anecdotal. Further research is required to assess and quantify TOP resulting from NIPT sex determination. The use of these technologies for sex selection raises a number of ethical issues, in addition to practical demographic consequences.

[Ethics in the communication of down syndrome diagnosis]. / La ética en la comunicación del diagnóstico de síndrome de Down.

Down Syndrome diagnosis communication has got serious ethical implications, since the aim thereof can be either eugenic or therapeutic. The purpose of this paper is, on the one hand, to highlight the fundamental role which sanitary proffesionals play in diagnosis communication and the subsequent decission of the mother. On the other, recommendations on the way to communicate a diagnosis are set out. Finally, in order to analize the state of play in Spain the results of a cross-sectional descriptive study with a sample of 352 mothers are exposed. In this study the mothers express, by means of a survey, their personal experiencies of how they have received the news. It is concluded that the communication of Down syndrome diagnosis can be improved in many aspects.

Epistemic Virtue, Prospective Parents and Disability Abortion.

Research shows that a high majority of parents receiving prenatal diagnosis of intellectual disability terminate pregnancy. They have reasons for rejecting a child with intellectual disabilities-these reasons are, most commonly, beliefs about quality of life for it or them. Without a negative evaluation of intellectual disability, their choice makes no sense. Disability-based abortion has been critiqued through virtue ethics for being inconsistent with admirable moral character. Parental selectivity conflicts with the virtue of acceptingness (the commitment to welcome whatever child comes naturally) and exhibits the vice of wilfulness (the project of picking and choosing what children one will take). In this paper I claim that, beyond failures of moral virtue, disability abortion often involves failures of epistemic virtue on the part of parents. I argue two things: parents believe something false, or at least contested, about life with intellectual disability-and they do so because they are not epistemically conscientious. I first explain why a central motivation for disability abortion-that it prevents harm to the child-is mistaken. I next give a brief account of intellectual virtue and culpable ignorance. I then indicate why many parents fail to be intellectually virtuous when choosing to terminate pregnancy. I focus on elimination of intellectual disability and have little to say about physical and sensory impairments.

Ethical and Legal Dilemmas Around Termination of Pregnancy for Severe Fetal Hydrocephalus, Spina Bifida Aperta and Meningomyelocoella.

INTRODUCTION: There are many ethical and moral dilemmas regarding the termination of pregnancy(TOP) with severe fetal anomalies. AIM: Our aim is to present a case of severe fetal hydrocephalus (HCP), spina bifida aperta and, meningomyelocoella (MMC). CASE REPORT: A gynecologist examined a 23-year-old patient with vital pregnancy of 24/25 week of gestation (WG) with the anomaly of the fetus. At the Perinatological Medical Advisory Board, a decision was made that the pregnancy should be continued and monitored bearing in mind that pregnancy exceeded the legal framework for TOP. Medical Advisory Board's ultrasound examination showed the following: severe hydrocephalus (HCP), spina bifida aperta, hyperehogen intestine, pes equinovarus. Via multidisciplinary consultation it was decided to make a delivery with the elective caesarian section (CS) causing as little trauma to the fetus as possible, with 37 WG completed due to the pelvic presentation and fetal anomalies. The patient gave birth via CS to a live female newborn-birth weight 3920 grams, birth length 56 cm, head circumference 48 cm, and Apgar score 8/8. The head was hydrocephalic with spaced suture. There was thoracolumbar defect of spina bifida aperta and meningomyelocele (MMC) 10x12 cm in size. An urgent surgical procedure - the external ventricular derivation of the liquor, and then the successful resection and plastic meningomyelocele was performed by a team of neuro and plastic surgeons. During the fourth postoperative day due to a suspicion of abscess collection and febrility of the mother a relaparotomy is performed and the abscess collection of Retzius space was found. Due to the fall in blood count, blood transfusion in a total dose of 580 ml was given. The patient was discharged on a home treatment as she had a regular general and local status. After the surgery, the condition of the newborn resulted in deterioration, the progression of HCP and dehiscence of head wounds and the thoracolumbar region, in spite of all the measures taken. At that time a decision was made to provide palliative care and this decision was conveyed to the mother. The child had a prolonged apnoeic episode and was not resuscitated. The child died in hospital after surviving for two months postpartum. CONCLUSION: Indication of TOP based on fetal anomalies could be a medical decision but also a personal moral choice of the mother related to legal rules, socio-cultural values and religious beliefs.

Prenatal testing: Does reproductive autonomy succeed in dispelling eugenic concerns?

Traditionally, two main rationales for the provision of prenatal testing and screening are identified: the expansion of women's reproductive choices and the reduction of the burden of disease on society. With the number of prenatal tests available and the increasing potential for their widespread use, it is necessary to examine whether the reproductive autonomy model remains useful in upholding the autonomy of pregnant women or whether it allows public health considerations and even eugenic aims to be smuggled in under the smokescreen of autonomy. In this article I argue that if we are serious about upholding women's autonomy in the context of prenatal testing, what is needed is a model based on a more robust conception of reproductive autonomy, such as the one defended by Josephine Johnston and Rachel Zacharias as 'reproductive autonomy worth having'. While Johnston and Zacharias put forward a basic outline of this conception, I apply it to the specific case of prenatal testing and show how it responds to objections levelled against the reproductive autonomy model. I argue that adopting this kind of conception is necessary to avoid fundamental challenges to women's autonomy when it comes to prenatal screening and testing.

[To act or not to act? Developments in prenatal and postnatal care for children with spina bifida aperta]. / Handelen of niet handelen?

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.

How Not to Argue for Selective Reproductive Procedures.

Many bioethicists try to secure a moral requirement to select against disability, while wishing to avoid denigrating disabled people. Dan Brock's arguments are representative of this attempt. Brock argues that the harm of giving birth to a disabled child when an able child could be had in its stead is a "nonperson-affecting harm." The harm is creating a world with less opportunity and more diminishment of opportunity. I argue that the presumptions that a life with disability is ceteris paribus a worse life, and that there is an inherent badness in living with a disability are contestable and fail to provide an argument that avoids the objections that disability scholars have voiced to reproductive selection against disability.

Maternal-fetal medicine specialists' experiences of conducting feticide as part of termination of pregnancy: a qualitative study.

OBJECTIVES: This study aimed to explore maternal-fetal medicine specialists' experiences of conducting feticide in late termination of pregnancy. METHODS: Participants were recruited via email. Purposeful sampling resulted in ten maternal-fetal specialists. Semistructured interviews were used to examine their experiences of conducting feticide. Interviews occurred across four English National Health Service hospitals. Interpretative phenomenological analysis was used. RESULTS: An ongoing doctor-patient relationship when conducting feticide facilitated participants' self-image as clinicians rather than technicians. Coping involved rationalisation, with feticide viewed as 'part of the job'. Supportive team relationships helped keep emotional expression within control. Participants were not distressed if they felt, through relationship-based decision-making, that the feticide aligned with their values and legal interpretation. To avoid negative judgements, they disclosed selectively, only telling trusted individuals that they conducted feticides. CONCLUSIONS: Participants experienced conducting feticides as difficult but necessary, eliciting pride from the skills involved. Some noted management of personal distress. Optimal conditions were involvement in the process from the initial decision-making and team support. Providing feticides was deemed as potentially stigmatising, with selective disclosure employed. Training in managing feticides and guidance on providing optimal service conditions may decrease selectivity of disclosures and enhance staff well-being and the quality of feticide provisions. © 2015 John Wiley & Sons, Ltd.

Mitochondrial Replacement: Ethics and Identity.

Mitochondrial replacement techniques (MRTs) have the potential to allow prospective parents who are at risk of passing on debilitating or even life-threatening mitochondrial disorders to have healthy children to whom they are genetically related. Ethical concerns have however been raised about these techniques. This article focuses on one aspect of the ethical debate, the question of whether there is any moral difference between the two types of MRT proposed: Pronuclear Transfer (PNT) and Maternal Spindle Transfer (MST). It examines how questions of identity impact on the ethical evaluation of each technique and argues that there is an important difference between the two. PNT, it is argued, is a form of therapy based on embryo modification while MST is, instead, an instance of selective reproduction. The article's main ethical conclusion is that, in some circumstances, there is a stronger obligation to use PNT than MST.

Ethical aspects of creating human-nonhuman chimeras capable of human gamete production and human pregnancy.

In this paper I explore some of the moral issues that could emerge from the creation of human-nonhuman chimeras (HNH-chimeras) capable of human gamete production and human pregnancy. First I explore whether there is a cogent argument against the creation of HNH-chimeras that could produce human gametes. I conclude that so far there is none, and that in fact there is at least one good moral reason for producing such types of creatures. Afterwards I explore some of the moral problems that could emerge from the fact that a HNH-chimera could become pregnant with a human conceptus. I focus on two sets of problems: problems that would arise by virtue of the fact that a human is gestated by a nonhuman creature, and problems that would emerge from the fact that such pregnancies could affect the health of the HNH-chimera.

Chloe's Law: A Powerful Legislative Movement Challenging a Core Ethical Norm of Genetic Testing.

Since the early 1970s, the ethical norm governing counselors involved in testing and screening for genetic conditions related to reproduction has been strict neutrality. Counseling about reproductive genetics was to be patient centered but nondirective. Many advocates for people with Down syndrome believe that high abortion rates following a diagnosis of this condition show an unfounded bias against those with Down syndrome. These advocates have succeeded in enacting federal and state legislation that requires women who receive a prenatal diagnosis of Down syndrome to receive positive information about the condition, thereby ending the nominal goal of value-neutral counseling and setting the stage for further normative shifts in clinical reproductive genetics as counseling expands because of cell-free testing.

Prenatal screening: current practice, new developments, ethical challenges.

Prenatal screening pathways, as nowadays offered in most Western countries consist of similar tests. First, a risk-assessment test for major aneuploides is offered to pregnant women. In case of an increased risk, invasive diagnostic tests, entailing a miscarriage risk, are offered. For decades, only conventional karyotyping was used for final diagnosis. Moreover, several foetal ultrasound scans are offered to detect major congenital anomalies, but the same scans also provide relevant information for optimal support of the pregnancy and the delivery. Recent developments in prenatal screening include the application of microarrays that allow for identifying a much broader range of abnomalities than karyotyping, and non-invasive prenatal testing (NIPT) that enables reducing the number of invasive tests for aneuploidies considerably. In the future, broad NIPT may become possible and affordable. This article will briefly address the ethical issues raised by these technological developments. First, a safe NIPT may lead to routinisation and as such challenge the central issue of informed consent and the aim of prenatal screening: to offer opportunity for autonomous reproductive choice. Widening the scope of prenatal screening also raises the question to what extent 'reproductive autonomy' is meant to expand. Finally, if the same test is used for two different aims, namely detection of foetal anomalies and pregnancy-related problems, non-directive counselling can no longer be taken as a standard. Our broad outline of the ethical issues is meant as an introduction into the more detailed ethical discussions about prenatal screening in the other articles of this special issue.

Psychological aspects of individualized choice and reproductive autonomy in prenatal screening.

Probably the main purpose of reproductive technologies is to enable people who choose to do so to avoid the birth of a baby with a disabling condition. However the conditions women want information about and the 'price' they are willing to pay for obtaining that information vary enormously. Individual women have to arrive at their own prenatal testing choices by 'trading off' means and ends in order to resolve the dilemmas facing them. We know very little about how individuals make these trade-offs, so it is difficult to predict how new technologies will affect their choices and preferences. Uptake decisions can be expected to change, especially in the group of women who now are put off by some aspect of the current screening approach, where the avoidance of miscarriage risk may have provided a kind of 'psychological shelter', protecting a lot of people from having to make other decisions. Technologies such as Pre-implantation Genetic Diagnosis may remove a second 'psychological shelter' because they offer the means of avoiding the birth of an affected child without terminating a pregnancy. Even if new technologies will make some decisions easier in terms of their cognitive demands, they will also create new dilemmas and decision making will not necessarily become less stressful in emotional terms. Key challenges concern information and decision-making.