This target article considers the ethical implications of providing prenatal diagnosis (PND) and antenatal screening services to detect fetal abnormalities in jurisdictions that prohibit abortion for these conditions. This unusual health policy context is common in the Latin American region. Congenital conditions are often untreated or under-treated in developing countries due to limited health resources, leading many women/couples to prefer termination of affected pregnancies. Three potential harms derive from the provision of PND in the absence of legal and (...) safe abortion for these conditions: psychological distress, unjust distribution of burdens between socio-economic classes, and financial burdens for families and society. We present Iran as a comparative case study where recognition of these ethical issues has led to the liberalization of abortion laws for fetuses with thalassemia. We argue that physicians, geneticists and policymakers have an ethical and professional duty of care to advocate for change in order to ameliorate these harms. (shrink)

Two versions of the argument that prenatal diagnosis discriminates against the disabled are distinguished and analysed. Both are shown to be inadequate, but some valid concerns about the social effects of prenatal diagnosis are highlighted.

Prenatal Diagnosis (PD) includes diagnostic procedures carried out during the antenatal period, together with Preconception Screening (PS) of prospective parents, and prenatal genetic diagnosis (PGD). The purpose of all these procedures is to provide prospective parents with opportunities to decide whether or not to have a child who will be diseased or disabled. Selection decisions determine what kinds of children are brought into existence; the ability to make these decisions is of huge ethical significance. It raises (...) connected questions about discrimination, the social status of disabled people and the medicalisation of disability; patient vulnerability and the power of the medical and counselling professions to influence decision-making; and the conceptualisation of selection as a public health measure and even as eugenic. In this paper, I outline the ethical issues raised by prenatal diagnosis and describe some of the arguments which have been elaborated in relation to the permissibility of selecting against (and occasionally for) diseases and disabilities. I conclude that there are no good arguments against the prevention of disability through PD but that providing adequate information for decision-making and facilitating uncoerced individual decisions requires further attention. (shrink)

: A fascinating criticism of abortion occasioned by prenatal diagnosis of potentially disabling traits is that the complex of test-and-abortion sends a morally disparaging message to people living with disabilities. I have argued that available versions of this "expressivist" argument are inadequate on two grounds. The most fundamental is that, considered as a practice, abortions prompted by prenatal testing are not semantically well-behaved enough to send any particular message; they do not function as signs in a rule-governed (...) symbol system. Further, even granting, for the sake of argument, the expressive power of testing and aborting, it would not be possible, contra the argument's proponents, to distinguish between abortions undertaken because of beliefs about the disabling conditions the fetus might face as a child and abortions undertaken for many other possible reasons--e.g., because of the poverty the fetus would face or the increase in family size that the birth of a new child would occasion. Here, I respond to criticisms of those arguments, and propose and defend another: the expressivist argument cannot, in general, distinguish successfully between abortion and therapy as modalities for responding to disabilities. (shrink)

Prenatal diagnosis challenges the issue of parental autonomy. Two ethical aspects of the parental decision making process with reference to PND have been taken into consideration: the duty to know and the right not to know. Whilst the first approach has been widely discussed in literature, the latter seems to be overlooked. In order to find good moral reasons supporting the right not to know, firstly the duty to know approach was critically analysed. Subsequently, the emphasis was put (...) on the unconditional parental love and the issue of child’s best interests as the features supporting parental right not to know. The clarification of what is good parenthood was presented as the best normative approach supporting the parental right not to know in case of PND. Apart from parental autonomy, raising the question of the right not to know is important in the debate about the place and role of people with disabilities in society. (shrink)

Ballantyne and colleagues (2009) cogently present the conflict that arises in jurisdictions in which prenatal diagnosis (PND) is available and abortions are prohibited. They primarily focus on two...

Prenatal diagnosis utilizes invasive procedures such as amniocentesis, chorionic villus sampling, cord blood sampling and pre-implantation genetic diagnosis. These techniques can diagnose serious foetal illnesses and this therefore provides valuable information to couples, helping them to prepare for the birth of an affected child. It also affords women the freedom to decide whether to terminate a pregnancy. The selective termination of foetuses with serious disabilities does not represent disability discrimination because women and parents are actually rejecting the (...) disability, rather than the foetus itself More significantly, the choice to abort a foetus with a serious illness or disability is an intensely private and personal exercise that does not and cannot be reflective of a wider public morality. Exactly the same can be said of the choice to selectively abort foetuses based solely on their sex. The private choice of women in this respect does not amount to the social devaluation of women. Firstly, it is an erroneous assumption that women in Australia prefer male babies. Secondly, even if there is a preference for male babies, banning prenatal sex selection would be treating just one of many symptoms of sexism, rather than curing the primary causes. The moral right of all women to reproductive freedom is an embodiment of their equal value in society. (shrink)

Is it justified to detect minor genetic aberrations before birth and terminate pregnancies based upon such information? We present the case of a woman who wanted Prenatal Diagnosis to detect whether her female fetus was a Haemophilia mutation carrier. Such carriers are usually healthy.She wished to eradicate the Haemophilia mutation from her family to avoid future generations being affected and to protect her children from having to go through PND themselves. We explore existing practice guidelines, public attitudes and (...) possible objections to providing PND for minor abnormalities. We argue that in a society where couples have considerable autonomy relating to decisions about the fetus at least until viability, the routine restriction of PND for minor genetic abnormalities would be an unjust infringement of individual liberty. (shrink)

Alarm over the prospect that prenatal diagnostic techniques, which permit identification of fetal sex and facilitate abortion of healthy but unwanted female fetuses has led some to urge their outright prohibition. This article argues against that response. Prenatal diagnosis permits timely action to preserve and enhance the life and health of fetuses otherwise endangered, and, by offering assurance of fetal normality, may often encourage continuation of pregnancies otherwise vulnerable to termination. Further, conditions in some societies may sometimes (...) render excusable the inclination to abort certain healthy female fetuses. In places where abortion for fetal sex alone is recognised as unethical, however, medical licensing authorities already possess the power to discipline, for professional misconduct, physicians who prescribe or perform prenatal diagnosis purely to identify fetal sex, or those who disclose fetal sex when that is unrelated to the fetus's medical condition. (shrink)

This article presents a part of the results of an empirical study conducted at a Parisian hospital between 2011 and 2014. It aimed at understanding the women and couples’ motivations to terminate or not a pregnancy once a prenatal diagnosis has revealed a genetically related disease in the embryo or fetus. The article first presents the social and legal context of the study, the methodology used and the pathologies that were encountered. Then, it examines the results of the (...) interviews conducted with 5 women alone and 23 couples explaining their reasons for deciding to terminate or not the pregnancy. Finally, it explores the patients’ views about the doctor’s involvement in the decision-making process. The findings reveal the reasons they formulate when they ponder whether to terminate or not the pregnancy. It highlights the process of their deliberation, their hierarchisation of arguments and concerns. They also show how patients, though often consumed in sorrow, claim to be the legitimate decision-makers, especially women, in a social and legal context in which the rejection of eugenics is viewed as an undisputable principle. (shrink)

This article explores the reasons women of diverse class, racial ethnic, national, and religious backgrounds give for their decisions not to accept an amniocentesis or, having accepted one, not to pursue an abortion after diagnosis of serious fetal disability. The narratives of refusers reveal conflicts and tensions between the universalizing rationality of biomedical interventions into pregnancy and the wider heterogeneous social frame work to which women respond in their decision-making processes.

The question who is the subject of the right to prenatal diagnosis may be answered in four ways: the parents, the child, society, or no one. This article investigates the philosophical issues involved in each of these answers, which touch upon the conditions of personal identity, the principle of privacy, the scope of social responsibility, and the debate about impersonalism in ethics.

Through personal testimony, the author details the experience of fathering a baby with a poor prenatal diagnosis. The author invites the reader to follow his journey, from learning his wife is pregnant, through their experiences as a family with their unborn daughter’s poor prenatal diagnosis, welcoming their baby girl at her birth, and ultimately finding peace in her early passing. Perinatal peer support is discussed and encouraged, drawing attention to the needs and concerns of the babies, (...) women, and families who may not know to seek help in a similar situation. Great honor is given to the beauty and sanctity of life from the perspective of a father with a sick unborn child. National Catholic Bioethics Quarterly 14.1 : 31–37. (shrink)

Today, French public debate and bioethics research reflect an ongoing controversy about eugenics. The field of reproductive medicine is often targeted as pre-implantation genetic diagnosis (PGD), prenatal diagnosis, and prenatal detection are accused of drifting towards eugenics or being driven by eugenics considerations. This article aims at understanding why the charge against eugenics came at the forefront of the ethical debate. Above all, it aims at showing that the charge against prenatal diagnosis is groundless. (...) The point of view presented in this article has been elaborated jointly by a geneticist and a philosopher. Besides a survey of the medical, bioethical, philosophical and social sciences literature on the topic, the methodology is founded on a joint analysis of geneticist’s various consults. Evidence from office visits demonstrated that prenatal diagnosis leads to case-by-case decisions. As we have suggested, this conclusion does not mean that prenatal diagnosis is devoid of ethical issues, and we have identified at least two. The first is related to the evaluation of a decision to abort. The second line of ethical questions arises from the fact that the claim for “normality” hardly hides normative and ambiguous views about disability. As a conclusion, ethical dilemmas keep being noticeable in the field of reproductive medicine and genetic counselling, but an enquiry about eugenic tendencies probably does not allow us to understand them in the proper way. (shrink)

The 20th century eugenics movement in the USA and contemporary practices involving prenatal screening (PNS), prenatal diagnosis (PND), abortion and preimplantation genetic diagnosis (PGD) share important morally relevant similarities. I summarise some features of the 20th century eugenics movement; describe the contemporary standard of care in the USA regarding PNS, PND, abortion and PGD; and demonstrate that the ‘old eugenics’ the contemporary standard of care share the underlying view that social resources should be invested to prevent (...) the birth of people with certain characteristics. This comparison makes evident the difficulty of crafting moral arguments that treat some uses of PNS, PND, abortion and PGD as licit and others as illicit. (shrink)

Prenatal diagnosis, especially noninvasive prenatal testing, has changed the experience of pregnancy, prenatal care and responsibilities in Israel and Germany in different ways. These differences reflect the countries' historical legacies, medico-legal policies, normative and cultural identities. Building on this observation, the contributors of this book present conversations between leading scholars from Israel and Germany based on an empirical bioethical perspective, analyses about the reshaping of 'life' by biomedicine, and philosophical reflections on socio-cultural claims and epistemic horizons (...) of responsibilities. Practices and discussions of reproductive medicine transform the concepts of responsibility and irresponsibility. (shrink)

Tom Shakespeare’s book Disability rights and wrongs is very rich and interesting and ought to be compulsory reading for anyone interested in the relation between disability and medical ethics.1In my short contribution to this symposium on the book, I will focus on a particular aspect of his discussion of prenatal diagnosis and termination of pregnancy.In chapter 6 of Disability rights and wrongs, a chapter entitled Questioning prenatal diagnosis, the author discusses a wide range of issues concerning (...) the relation between disability and prenatal diagnosis. One of the arguments he discusses is the so-called “expressivist objection” to prenatal diagnosis—that is, the claim that prenatal diagnosis expresses a discriminatory or negative attitude towards people with disability. After having analysed the expressivist objection, Shakespeare, in line with a range of other authors, concludes that the argument is not sound: Nor should we interpret a decision to have a test or a termination as expressing disrespect or discrimination towards disabled people.1Is it thus time now to lay the expressivist objection to rest? In the following, I will suggest that it may be too early to completely dismiss the objection, partially because it is often misrepresented by its opponents, who argue against implausibly strong versions of the objection.THE OBJECTION UNFOLDEDWhat does the expressivist objection essentially claim? The core of the claim is, as described above, that prenatal diagnosis and termination of pregnancy expresses certain attitudes towards disabled people. What is taken to express these attitudes may be the social practice of prenatal diagnosis and termination of pregnancy either …. (shrink)

IntroductionMother–child interactions during the first years of life have a significant impact on the emotional and cognitive development of the child. In this work, we study how a prenatal diagnosis of malformation may affect maternal representations and the quality of these early interactions. To this end, we conducted a longitudinal observational study of mother–child interactions from the gestational stage until the baby completed 12 months of age.Participants and MethodsWe recruited 250 pregnant women from a local university hospital. Among (...) them, 50 mother–infant dyads participated in all stages of the study. The study group consisted of 25 pregnant women with fetuses with some structural alteration and the control group consisted of 25 pregnant women with fetuses without structural anomalies. We collected obstetric and socio demographic data and pregnancy outcomes. Anxiety and depressive state data were collected using the COVI and Raskin Scales. We video-recorded the mother–infant interactions during several stages, including when the child was a newborn and when the child was 2, 4, 6, 9, and 12 months of age. The quality of the mother infant interactions were measured using the Coding Interactive Behavior. The interactive moments recorded on video was composed of three different activities, each one lasting appoximately 3 min, which included Free Interaction, where the mother was instructed to interact “as usual” without any toy, Toy Interaction, where the mother and baby played with a puppv, and Song Interaction, where the mother and baby interacted while the mother sang the “Happy Birthday” song.ResultsIn the gestational phase, there was a significant difference between the groups with respect to anxiety and depression scores, which were significantly higher for the study group. In the postnatal phase, we found significant differences between the groups with respect to CIB scales after the child completed 6 months of age: the study group presented significantly higher values of Maternal Sensitivity at 6 months of age, of Baby Involvement at 9 and 12 months of age, and of Dyadic Reciprocity at 6, 9, and 12 months of age, while the control group presented significantly higher values of Withdrawal of the Baby at 6 months of age, and of Dyadic Negative States at 6 and 9 months of age.ConclusionThe support offered by the study favored the mother–infant bond and had a positive effect on the quality of interaction during the first year of life, despite the presence of prenatal diagnosis. (shrink)

The ethical guidelines for prenatal diagnosis proposed by the World Health Organisation , as well as by national regulations, only refer to paternity and gender of the fetus as unacceptable, disease-unrelated criteria for prenatal selection, as no other such parameters are at hand so far. This perspective is too narrow because research on complex genetic systems such as cognition and ageing is about to provide clinically applicable tests for genetic constituents of potentially desirable properties such as intelligence (...) or longevity which could be misused as parameters for prenatal diagnosis. Moreover, there is an increasing number of prenatally testable genetic traits, such as heritable deafness, which are generally regarded as pathological but desired by some prospective parents and taken into account as parameters for pro-disability selection. To protect prenatal diagnosis from ethically unacceptable genetic consumerism, guidelines must be clarified as soon as possible and updated towards a worldwide restriction of prenatal genetic testing to immediately disease-determining traits. (shrink)

In the past few years considerable attention has been given to a relatively new method of prenatal diagnosis known as chorionic villus sampling (CVS). Because CVS can be performed in the first trimester it is hailed by many as a significant advance over amniocentesis. What has not been as publicized, however, are the disadvantages of CVS and earlier prenatal diagnosis. The emotional costs of CVS in terms of the greater number of both spontaneous and selective abortions (...) following CVS, the use of CVS for sex selection and, because of the greater social acceptability of first trimester abortion, the possibility of increased pressure on women to undergo prenatal diagnosis by health insurance companies, medical professionals and government agencies, all need to be weighed against the advantages of early prenatal diagnosis. (shrink)

The development and implementation of prenataldiagnosis has changed the experience of pregnancy for many women. How women make decisions about prenatal diagnosis PD is an important question that challenges us both individually and as a community. The questionof care is central to many women's decision-making process. How much care a child will require, how much care a woman feels confident to provide, and the level of care available for children with genetic conditionsand families from their communities all impact (...) on women's decisions to undertake prenatal diagnosis as well as how to use the information available from testing. Interviews with women making these decisions explored, among otherthings, the role that caring and access to care played in women's ethical deliberations. Before PD can widen women's reproductive choices and counter criticisms that its use is eugenically oriented, the central role that provision of, and access to, care holds for participants in PD programmes must be acknowledged and addressed. (shrink)

Moral and social arguments weigh heavily against performing medical procedures solely for purposes of sex selection. The medical profession has a responsibility to abandon its posture of ethical neutrality and take a firm stand now against sex selection.

Termination of pregnancy after a certain gestational age and following prenatal diagnosis, in many nations seem to be granted with a special status to the extent that they by law have to be discussed within a predominantly medical context and have physicians as third parties involved in the decision-making process (‘indication-based’ approach). The existing legal frameworks for indication-based approaches, however, do frequently fail to provide clear guidance for the involved physicians. Critics, therefore, asked for professional ethics and professional (...) institutions in order to provide normative guidance for the physicians in termination of pregnancy on medical grounds. After outlining the clinical pathway in an indication-based approach and the involved types of (clinical) judgements, this paper draws upon different understandings of professional ethics in order to explore their potential to provide normative guidance in termination of pregnancy on medical grounds. The analysis reveals that professional ethics will not suffice—neither as a set of established norms nor as internal morality—in order to determine the normative framework of indication-based approaches on termination of pregnancy. In addition, there seem to be considerable inconsistencies regarding the target and outcome between prenatal testing on the one hand and following termination of pregnancy on the other hand. A source of morality external to medicine has to be the basis of evaluation if a consistent and workable normative framework for termination of pregnancy and prenatal testing should be established. (shrink)

Die Geschichte der genetischen Pränataldiagnostik ist bislang als Teil der Geschichte der Humangenetik und deren Neuorientierung als klinisch-laborwissenschaftliche Disziplin in der zweiten Hälfte des 20. Jahrhunderts betrachtet worden. Anhand neuen Quellenmaterials soll in diesem Beitrag gezeigt werden, dass das Interesse an der Pränataldiagnostik in Westdeutschland auch im Kontext von Forschungen entstand, die sich mit Gefahren für den Menschen in der Umwelt befassten. Anhand der Debatten um die Einrichtung des DFG-Schwerpunktprogramms „Pränatale Diagnostik genetischer Defekte“ 1970 untersuchen wir, wie die Technik der (...) Amniozentese in Westdeutschland von einer interdisziplinären Forschungsgruppe eingeführt wurde, die sich mit Schädigungen des Organismus durch Strahlen, Arzneimittel und andere Gebrauchsstoffe und Konsumgüter befasste. In einer als ökologische Wende bezeichneten Zeit wachsenden Umweltbewusstseins, so unsere These, sollte durch die Förderung der Pränataldiagnostik eine wahrgenommene Lücke in der Prävention umweltbedingt auftretender genetischer Anomalien geschlossen werden. Für die Pränataldiagnostik als „Schutzmaßnahme“ sprach unter anderem ihre erwartete Finanzierung als Krankenkassenleistung im Zuge der Reform des Abtreibungsrechts. Erst in einem zweiten Schritt führten Veränderungen von Strukturen der Forschung, vor allem aber Erfahrungen in der gynäkologischen Praxis zu einer Neuausrichtung auf die Diagnostik und Prävention mehrheitlich erblicher oder spontan auftretender Anomalien. Die Pränataldiagnostik, so wie sie schließlich in Westdeutschland ab den frühen 1980er Jahren routinemäßig Einsatz fand, hatte mit Fragen der „Umwelt“ kaum noch zu tun. Diese Fallstudie zur Frühgeschichte der genetischen Pränataldiagnostik handelt von dem noch wenig untersuchten Verhältnis von humangenetischer Forschung, klinischer Praxis und Umweltforschung und hat zum weiteren Ziel, den bisher in anderen Kontexten beschriebenen Wandel von Perspektiven in der Vorsorge um 1970 zu beleuchten. (shrink)

El diagnóstico prenatal como opción reproductiva más difundida a nivel mundial se refiere a métodos para investigar la salud del feto. Entre sus objetivos está la detección de malformaciones congénitas en la vida fetal y permitir la interrupción del embarazo. Un enfoque ético, basado en el respeto por las personas y a la confidencialidad, evitando el daño y respetando la autonomía, son las claves de un asesoramiento genético óptimo. Se realizó una revisión bibliográfica con el objetivo de exponer algunas (...) consideraciones éticas en la práctica asistencial de la genética médica, a partir de los principios fundamentales de la bioética vinculados al diagnóstico prenatal y al proceso de asesoramiento genético, ya que estos aspectos éticos en la práctica de la genética médica es una temática relativamente joven que ha estado influida por el desarrollo de la bioética y la solución de los dilemas éticos y sociales en la práctica médica. Prenatal diagnosis, as the world widest spread reproductive option, refers to fetus health research methods. Fetal life congenital malformation detection and allowing termination of pregnancy are among its main objectives. An ethical approach, based on respect for people and for confidentiality, avoiding hurt and respecting autonomy, is the key towards optimum genetic counseling. A bibliographic review was conducted. Its objective is to set out some ethical considerations in medical genetics health care practice starting from bioethics fundamental principles, which are linked to prenatal diagnosis and to the genetic counseling process; since dealing with issues related to these ethical aspects in medical genetics practice is a relatively new subject that has been influenced by the development of bioethics and the solution to ethical and social dilemmas in medical practice. (shrink)

Empirical evidence suggests that some health professionals believe consent procedures for the emerging technology of non-invasive prenatal diagnosis (NIPD) should become less rigorous than those currently used for invasive prenatal testing. In this paper, we consider the importance of informed consent and informed choice procedures for protecting autonomy in those prenatal tests which will give rise to a definitive result. We consider whether there is anything special about NIPD that could sanction a change to consent procedures (...) for prenatal diagnosis or otherwise render informed decision-making less important. We accept the claim that the absence of risk of miscarriage to some extent lessens the gravity of the decision to test compared with invasive methods of testing. However, we also claim that the definitive nature of the information received, and the fact that the information can lead to decisions of great significance, makes NIPD an important choice. This choice should only be made by means of a rigorous and appropriately supported decision-making process (assuming that this is what the pregnant woman wants). We conclude that, on balance, consent procedures for NIPD should mirror those for invasive testing, albeit without the need to emphasise procedure-related risk. (shrink)

ZusammenfassungAm 1. Februar 2010 ist das Gendiagnostikgesetz in Kraft getreten. Die Debatte um einige Regelungsbereiche, wie beispielsweise das Neugeborenenscreening, reißt nicht ab. Ein Aspekt des Gesetzes ist im Rahmen der Debatte um die Präimplantationsdiagnostik in Deutschland unter neuen Vorzeichen zu diskutieren: Das – international bislang einzigartige – Verbot der pränatalen Diagnostik so genannter spätmanifestierender Erkrankungen, die erst nach der Vollendung des 18. Lebensjahres ausbrechen. In diesem Beitrag möchten wir Hinweise zur differenzierten Diskussion dieser in § 15 GenDG bestimmten Verbotsnorm liefern. (...) Obgleich Argumente, insbesondere das Recht auf Nichtwissen des geborenen Kindes, für ein solches Verbot sprechen, kommen wir aufgrund der medizinischen Sachlage und nach einer Analyse der Pro- und Kontraargumente aus ethischer und rechtlicher Sicht zu dem Schluss, dass ein generelles Verbot der pränatalen Diagnostik spätmanifestierender Erkrankungen im Sinne der Zielsetzung womöglich insuffizient ist sowie in der Begründung Inkonsistenzen zum bereits bestehenden Regelwerk aufweist, und lenken daher den Blick auf unter Umständen bessere Alternativen. (shrink)

Detection of genetic aberrations in prenatal samples, obtained through amniocentesis or chorion villus biopsy, is increasingly performed using chromosomal microarray, a technique that can uncover both aneuploidies and copy number variants throughout the genome. Despite the obvious benefits of CMA, the decision on implementing the technology is complicated by ethical issues concerning variant interpretation and reporting. In Belgium, uniform guidelines were composed and a shared database for prenatal CMA findings was established. This Belgian approach sparks discussion: it is (...) evidence-based, prevents inconsistencies and avoids parental anxiety, but can be considered paternalistic. Here, we reflect on the cultural and moral bases of the Belgian reporting system of prenatally detected variants. (shrink)

Information on the factors influencing parents’ decision-making process following a lethal, life-limiting or severely debilitating prenatal diagnosis remains deficient. A comprehensive systematic review and meta-synthesis was conducted to explore the influencing factors for parents considering termination or continuation of pregnancy following identification of lethal, life-limiting or severely debilitating fetal abnormalities. Electronic searches of 13 databases were conducted. These searches were supplemented by hand-searching Google Scholar and bibliographies and citation tracing. Thomas and Harden’s thematic synthesis method was used to (...) synthesise data from identified studies. Twenty-four papers were identified and reviewed, but two papers were removed following quality assessment. Three main themes were identified through systematic synthesis. Theme 1, entitled ‘all life is precious’, described parents’ perception of the importance of the fetus’ life, a fatalistic view of their situation alongside moral implications as well as the implications decisions would have on their own life, in consideration of previous life experiences. Theme 2 contained two sub-themes which considered the parent’s own imagined future and the influence of other people’s experiences. Finally, Theme 3 presented three sub-themes which may influence their parental decision-making: These described parental consideration of the quality of life for their unborn child, the possibility of waiting to try for another pregnancy, and their own responsibilities and commitments. The first review to fully explore parental decision-making process following lethal, life-limiting, or severely debilitating prenatal diagnosis provided novel findings and insight into which factors influenced parents’ decision-making process. This comprehensive and systematic review provides greater understanding of the factors influential on decision-making, such as hope, morality and potential implications on their own and other’s quality of life, will enable professionals to facilitate supported decision-making, including greater knowledge of the variables likely to influence parental choices. (shrink)