Ethical dilemmas are common in the neonatal intensive care setting. The aim of the present study was to investigate the opinions of Swedish physicians and the general public on treatment decisions regarding a newborn with severe brain damage. We used a vignette-based questionnaire which was sent to a random sample of physicians (n = 628) and the general population (n = 585). Respondents were asked to provide answers as to whether it is acceptable to discontinue ventilator treatment, and when (...) it actually is discontinued whether or not it was acceptable to use drugs which hasten death unintentionally or intentionally. The response rate was 67 % of physicians and 46 % of the general population. A majority of both physicians [56 % (CI 50–62)] and the general population [53 % (CI 49–58)] supported arguments for withdrawing ventilator treatment. A large majority in both groups supported arguments for alleviating the patient’s symptoms even if the treatment hastened death, but the two groups display significantly different views on whether or not to provide drugs with the additional intention of hastening death, although the difference disappeared when we compared subgroups of those who were for or against euthanasia-like actions. The study indicated that physicians and the general population have similar opinions regarding discontinuing life-sustaining treatment and providing effective drugs which might unintentionally hasten death but seem to have different views on intentions. The results might be helpful to physicians wanting to examine their own intentions when providing adequate treatment at the end of life. (shrink)

Few parents-to-be consider that their child may be born with ambiguous sex. Still, parents of a newborn child with ambiguous sex are expected to make a far-reaching decision for the child: should the child be operated upon so that it has either female or male genitals? The aim of this article is to examine, phenomenologically, why parents decide to have their children undergo genital surgery when it is not necessary for the child’s physiological functions. (...) Drawing on phenomenological work by Maurice Merleau-Ponty, Simone de Beauvoir and Sara Ahmed, we examine parents’ frustration when their child’s sex is ambiguous and their experiences of the practice of medical sex assignment. We also examine parental identity work when the child has been assigned a sex and the interaction between parents and medical professionals when parents make decisions regarding surgery on their child. Furthermore, we provide a critical perspective on the surgical practice. (shrink)

I defend a relational account of difference in the moral status between fetuses and newborns. The difference in moral status between a fetus and a newborn is that the newborn baby is the proper object of ‘parental responsibility’ whereas the fetus is not. ‘Parental responsibilities’ are a moral dimension of a ‘parent-child relation’, a relation which newborn babies stand in, but fetuses do not. I defend this relational account by analyzing the concepts of ‘parent’ and ‘ (...) class='Hi'>child’, and conclude that the difference in the moral status between fetuses and newborns means one may claim abortion is morally permissible while also claiming infanticide is not morally permissible, without inconsistency between the two claims. (shrink)

The Child Abuse Amendments of 1984 established the norms for treating disabled newborns, but they did not address the treatment of premature babies. Parents and physicians need a framework for decisionmaking. A decision handed down recently by the Texas Supreme Court is a step forward.

A significant portion of newborns cared for in the neonatal intensive care unit or other ICUs, such as the cardiac ICU, have a medical condition with a genetic component, including congenital malformations, the leading cause of death in the NICU. In many cases, however, it is not clear which condition the child has or what can be done to help him or her. Genomic sequencing of sick newborns has the potential to bypass the prolonged journey to a diagnosis, improving (...) the medical care of individual infants. Sequencing also has the potential to benefit others beyond the child whose genome is sequenced and his or her immediate family. Sequence data from sick newborns will expand medicine's understanding of genetic diseases, leading to improvements in clinicians’ ability to counsel family and to provide even more targeted care. Not only will more frequent use of sequencing lead to discovery of new genes; it will also provide unique insights into the full spectrum of known Mendelian genetic diseases, so‐called phenotypic expansion, when a gene previously recognized as associated with a phenotype is found to be associated with an expanded set of clinical features. Genetic and environmental changes that modify the expression of a genetic disease may also be elucidated. (shrink)

Scientific and technological advances are lending pressure to expand the scope of newborn screening. Whereas this has great potential for improving child health, it also challenges our current perception of such programmes. Standard newborn screening programmes are clearly justified by the fact that early detection and treatment of affected individuals avoids significant morbidity and mortality. However, proposals to expand the scope and complexity of such testing are not all supported by a similar level of evidence for unequivocal (...) benefit. We argue that screening for genetic susceptibility to complex disorders is inherently different from standard screening and, while of potential value, must be considered separately from conventional testing. (shrink)

This manuscript provides a review of the potential role of newborn genetic testing for autism, and whether the state has an inherent responsibility to facilitate and subsidise this. This is situated within the broader construct of benefits and limitations of genetic testing currently. Potential benefits of such presymptomatic genetic testing include facilitating earlier diagnosis and access to appropriate intervention which can improve the treatment outcome for the child and indirectly benefit caregivers and society by reducing the care needs (...) of the child and adult in future. However, there are several limitations to newborn genetic testing including the variable penetrance of ‘autism-risk’ genes, marked phenotypic heterogeneity of autism, real-world limitations in access to treatment, potential psychological harm to caregivers and financial considerations. We hence argue for facilitation of diagnostic genetic testing instead, especially for parents who seek to have greater understanding of recurrence likelihoods, related to reproductive decision-making. Facilitation of such testing can be in the form of both financial subsidies and infrastructural elements including availability of testing facilities and trained healthcare personnel for individualised pregenetic and postgenetic test counselling. (shrink)

There is a broadly held view that neonatologists are ethically obligated to act to override parental nontreatment decisions for imperiled premature newborns when there is a reasonable chance of a good outcome. It is argued here that three types of uncertainty undercut any such general obligation: (1) the vagueness of the boundary at which an infant’s deficits become so intolerable that death could be reasonably preferred; (2) the uncertainty about whether aggressive treatment will result in the survival of a reasonably (...) healthy child or, alternatively, the survival of a child with intolerable deficits; and (3) the inability to determine an acceptable ratio between the likelihoods of those two outcomes. It is argued that the broadly held view accords insufficient weight to the fact that newborn intensive care increases the likelihood of harm to the child by effecting survival with intolerable deficits. Though treatment may offer a reasonable chance of a good outcome, it is argued that there are situations in which neonatologists should nonetheless defer to parental nontreatment decisions. (shrink)

If a disabled newborn infant dies, her parents may be able to conceive another child without impairment. This is sometimes referred to as 'replacement'. Some philosophers have argued that replacement provides a strong reason for disabled newborns to be killed or allowed to die. In this paper I focus on the case for replacement as it relates to decisions about life support in newborn intensive care. I argue (following Jeff McMahan) that the impersonal reason to replace is (...) weak and easily outweighed. I assess and reject several possible ways in which the impersonal reason to replace could be defended. I then address an alternative justification for replacement - as an individual-affecting benefit. The strongest justification for replacement may be the interests of parents. In the latter part of the paper I look at a related question. What role should replacement play in decisions about the funding of newborn intensive care? (shrink)

Medical advances in newborn care have raised ethical dilemmas as to the level of care which is appropriate when an infant is severely damaged and incapable of a reasonable quality of life in the future. Some of the considerations, philosophical and practical, are discussed. It is concluded that within the framework of the law and after due consultation, decisions are best reached in privacy by the parents and their medical advisor and should be based on the perceived interests of (...) the child. (shrink)

Advances in genomic medicine have lead to debate about the potential inclusion of genetic tests for susceptibility to common complex disorders in newborn screening programmes. Empirical evidence concerning psychosocial reactions to genetic testing is a crucial component of both ethical debate and policy development, but while there has been much speculation concerning the possible psychosocial impact of screening newborns for genetic susceptibilities, there remains a paucity of data. The aim of the study reported here is to provide some of (...) this missing empirical evidence, using type 1 diabetes as an example of a common disorder with multiple significant genetic contributors to its aetiology. Semi-structured interviews were conducted with 11 parents of babies who had received increased risk results in a study that involved newborn screening for genetic susceptibility to type 1 diabetes. Interpretative phenomenological analysis was used to evaluate the data. The interview data suggest that the probabilistic nature of results of genetic susceptibility tests impacts upon all aspects of parents' psychosocial reactions, resulting in a complex and dynamic process quite different to that described in relation to current newborn screening programmes. While parents generally reported fairly minor levels of concern in response to news of their child's increased genetic risk, these worries frequently recurred, and perception of risk also varied and fluctuated over time. Both individual and contextual factors appeared to interact with the inherent uncertainty of the test result to contribute to the dynamic nature of parental reactions, and their behavioural responses. The implications of these findings for future research and for the debate concerning potential expansion of newborn screening are discussed. (shrink)

Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making (...) and information attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities ; parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs. (shrink)

Recent animal research suggests that it may soon be possible to support the human fetus in an artificial uterine environment for part of a pregnancy. A technique of extending gestation in this way (“ectogestation”) could be offered to parents of extremely premature infants (EPIs) to improve outcomes for their child. The use of artificial uteruses for ectogestation could generate ethical questions because of the technology’s potential impact on the point of “viability”—loosely defined as the stage of pregnancy beyond which (...) the fetus may survive external to the womb. Several medical decisions during the perinatal period are based on the gestation at which infants are considered viable, for example decisions about newborn resuscitation and abortion, and ectogestation has the potential to impact on these. Despite these possible implications, there is little existing evidence or analysis of how this technology would affect medical practice. In this paper, we combine empirical data with ethical analysis. We report a survey of 91 practicing Australian obstetricians and neonatologists; we aimed to assess their conceptual understanding of “viability,” and what ethical consequences they envisage arising from improved survival of EPIs. We also assess what the ethical implications of extending gestation should be for newborn and obstetric care. We analyze the concept of viability and argue that while ectogestation might have implications for the permissibility of neonatal life‐prolonging treatment at extremely early gestation, it should not necessarily have implications for abortion policy. We compare our ethical findings with the results of the survey. (shrink)

Critical congenital heart disease screening is rapidly becoming the standard of care in the United States after being added to the Recommended Uniform Screening Panel in 2011. Newborn screens typically do not require affirmative parental consent. In fact, most states allow parents to exempt their baby from receiving the required screen on the basis of religious or personally held beliefs. There are many ethical considerations implicated with allowing parents to exempt their child from newborn screening for CCHD. (...) Considerations include the treatment of religious exemptions in our current legal system, as well as medical and ethical principles in relation to the rights of infants. Although there are significant benefits to screening newborns for CCHD, when a parent refuses for religious or personal beliefs, in the case of CCHD screening, the parental decision should stand. (shrink)

Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding (...) result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42). Results: Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%–92.7%) and to reasons opposing disclosure was low (4.1%–18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%–78.8%), and more agreement with arguments opposing disclosure (15.7%–51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived “duty” to disclose, that if the clinician possessed the information, the clinician could not withhold it. Discussion: While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives. (shrink)

The health of newborns has always been subject to the natural lottery. When in the past a severely disabled baby was born, nature provided the “solution,” and the child did not survive. Medical technology has brought about a change; fetuses who would have died during pregnancy or newborns who once would have had little chance to survive are now kept alive. Although these technological advances do benefit many children, the dark side is that more severely handicapped babies are surviving.When (...) a severely disabled baby is born, all persons concerned are faced with emotional difficulties as well as moral and legal dilemmas. Questions that arise include whether it is acceptable, morally and legally, to allow the severely handicapped newborn to die by forgoing treatment or by direct intervention. (shrink)

A "wrongful life" suit is based on the purported tortious liability of a genetic counsellor towards an infant with hereditary defects, with the latter asserting that he or she would not have been born at all if not for the counsellor's negligence. This negligence allegedly lies in the failure on the part of the defendant adequately to advice the parents or to conduct properly the relevant testing and thereby prevent the child's conception or birth. This paper will offer support (...) for the thesis that it would be both feasible and desirable to endorse "wrongful life" compensation actions. The genetic counsellor owed a duty of due professional care to the impaired newborn who now claims that but for the counsellor's negligence, he or she would not have been born at all. The plaintiff's defective life constitutes a compensable injury. A sufficient causal link may exist between the plaintiff's injury and the defendant's breach of duty of due professional care and an appropriate measure of damages can be allocated to the disabled newborn. Sanctioning a "wrongful life" cause of action does not necessarily entail abandoning valuable constraints with regard to abortion and euthanasia. Nor does it inevitably lead to an uncontrolled slide down a "slippery slope". (shrink)

This article presents the Islamic bioethical deliberation on the issue of sex assignment surgery for infants with disorders of sex development or intersexed as a case study. The main objective of this study is to present a different approach in assessing a biomedical issue within the medium of the Maqasid al-Shari’ah. Within the framework of the maqasidic scheme of benefits and harms, any practice where benefits are substantial is considered permissible, while those promoting harms are prohibited. The concept of Maqasid (...) al-Shari’ah which is the mechanistic interpretation of Qur’an and Hadith presents the holistic attention of Islam on many life activities, including healthcare. Indeed, this concept encompasses many aspects of worldly life, both for the human individual and collectively for the whole society. In healthcare, the practice of SAS on DSD newborns has presented an assortment of implications on the future livelihood of the affected individual. The process of decision-making seems to be very multifaceted since every element such as the determination of the ‘correct’ sex and the urgency of early surgery must consider the benefits and harms, as well as the child’s rights and best interest. The application of the concept of Maqasid al-Shari’ah, would convey a pragmatic approach that is often disregarded in Western medicine. This approach considers the right of the individual to live life optimally, individually and socially and practice his faith, precisely, in accordance with the assigned gender. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“A Child Has Been Born unto Us”Arendt on BirthAdriana CavareroTranslated by Silvia Guslandi and Cosette BruhnsIn The Human Condition, at the end of the dense chapter on action, Hannah Arendt reiterates that action, that is, the political faculty for excellence, “is ontologically rooted” in the fact of natality, “like an ever-present reminder that men, though they must die, are not born in order to die but in order (...) to begin” (Arendt 1998, 246).1 To reinforce this argument, Arendt compares action to miracles, and makes an interesting and, as we will see, somewhat perplexing reference to the Bible:[The miracle] is, in other words, the birth of new men and the new beginning, the action they are capable of by virtue of being born. Only the full experience of this capacity can bestow upon human affairs faith and hope, those two essential characteristics of human existence which Greek antiquity ignored altogether.…It is this faith in and hope for the world that found perhaps its most glorious and most succinct expression in the few words with which the Gospels announced their “glad tidings”: “A child has been born unto us.”(HC, 247)The citation is suggestive, but incorrect. In the Gospels, which do announce with true joy the birth of the child, the phrase as it is quoted here does not exist. It appears instead in Isaiah (9:6), translated into English both as “For to us a child is borne,” and, in the version of the King James Bible from which Arendt is plausibly drawing, as “For unto us a child is born.” The error, if indeed it is an error, is thus twofold (see Young-Ah Gottlieb 2003, 136ff.), since [End Page 12] both the passage referenced and the words cited are incorrect. That Arendt frequently cites from memory, and that the citations tend to be bibliographically incorrect, is known to her interpreters, but in this case the error ends up being quite significant. As is well known, the prophetic text carries a strong Messianic burden, and such a burden would trouble significantly the thesis that Arendt is here illustrating; the Gospels’ message creates instead fewer obstacles to her strategy of framing the meaning of birth within the mundane horizon that in her vocabulary takes the names of “world” or “worldliness.” Since “‘to live’ and to ‘be among men’” mean the same thing (HC, 7), the child, every newborn, that is, every human being that makes its entrance in the world, is not, according to the Arendtian vision, born to us, coming from elsewhere, but appears among us here. The scenario of birth, like that of action, whatever be the holy text that mentions or exemplarily validates them, is, for Arendt, a radically mundane scenario that does not call into question any transcendence or religious instance of salvation.Jewish, secular, and classically trained in Greek and Latin, Arendt, who had little familiarity with the Jewish language and tradition, met Christian thought primarily through Saint Augustine, to whom she dedicated her doctoral thesis (Der Liebesbegriff bei Augustin, published in Berlin in 1929 and then in English in 1996 as Love and Saint Augustine), and who remained a constant point of reference throughout her work. A phrase from Augustine—initium ut esset homo creatus est—present in the thesis, appears, in fact, in Arendt’s later texts, including The Human Condition, indeed with obsessive repetitiveness in reference to the category of birth.2 In her monumental work The Origins of Totalitarianism, published in 1951, a full seven years prior to The Human Condition, Arendt already writes: “Beginning, before it becomes a historical event, is the supreme capacity of man; politically, it is identical with man’s freedom. Initium ut esset homo creatus est, ‘that a beginning be made, man was created’, said Augustine. This beginning is guaranteed by each new birth; it is indeed every man” (Arendt 1973, 479). On the philosophically anomalous theme of birth, the contributions of the Christian tradition that Arendt does appreciate are predominantly two: the “glad tidings” that herald the coming of the child, and Augustine’s comments on the narrative of Creation.Natality, Birth, and the Human Condition of... (shrink)

Preterm discharge effects: Relationship between the maternal experience and newborn's psychobiological regulation The purpose of this study is to investigate how the past experiences of mothers and their potentially traumatic events during pregnancy may have influenced the processes of psychobiological self-regulation and cognitive development in a child born preterm. Eighty children who had a gestational age of < 32 weeks were examined at the 9th month of the corrected age. The mothers and children were divided in two groups: (...) multipara mothers and their children and the primipara mothers and their children. These children were examined on the basis of sleep disorders, nutritional problems and mental development. Perinatal data from clinical observations and data from standardized developmental tests were used to describe the differences. The children of primipara mothers who had unexpected preterm delivery presented major incidences of sleep disorders while the children of primipara mothers, who programmed preterm delivery, presented a major incidences of nutrition problems. The predictability of preterm delivery has a major influence on the capacity of newborns for self-regulation in the case of primipara mothers. (shrink)

This essay is written in the belief that questions relating to the treatment of impaired and imperiled newborns cannot be adequately resolved in the absence of a general moral theory of parent-child relations. The rationale for treatment decisions in these cases should be consistent with principles that ought to govern the normal work of parenting. The first section of this paper briefly examines the social contract theory elaborated by John Rawls in his renowned book A Theory of Justice and (...) extracts from it normative principles that can guide us in our attempt to lay a rational foundation for parenthood. The second section clarifies the implications of a Rawlsian theory for the problem at hand by examining several standards that have been proposed for the treatment of impaired newborns: the strict right-to-life standard, the medical decision standard, and the quality-of-life standard. A Rawlsian standard, by contrast, is autonomy-based. That is, it would have us base our treatment decisions on consideration of the child's capacity for developing critical rationality in making decisions on his or her own. This standard, it is suggested, avoids morally objectionable features of the others. (shrink)

CQ: The Baby Bas Ross case stirred much public debate in The Netherlands since 1988 -a newborn infant with Down's syndrome whose parents refused to consent to a surgery that would have repaired an otherwise fatal congenital anomaly. Can you share your thoughts with us on this case?HD: I was the first ethicist to comment on this case because I was a friend of Dr. Molenaar, who was the final surgical decision maker for Baby Bas. A physician and I (...) supported his decision throughout the prosecution that followed. We also summarized the case in the N.T.V.G., the Dutch Magazine of Medicine. We argued In the article that parents should have the option to make nontreatment decisions. Moreover, In cases where the physician has to perform aggressive medical interventions, there certainly must be thorough and sound justification to ensure that the decision to Intervene Is in the best interest of the child.Heleen M. Dupuis, Ph.D., is Professor of Bioethics at the Leiden University School of Medicine, where she heads the Department of Metamedica and teaches in the Department of Philosophy. She is also a member of the Institutional Review Board/Ethics Committee of the Leiden University Hospital and a member of the Ethics Committee of the Royal Dutch Society of Medicine. (shrink)

Decision-making regarding treatment for newborns with disabilities in resource-poor settings is a difficult process that can put parents and caregivers in conflict. Despite several guidelines that have helped to clarify some of the medical decision-making in Ghana, there is still no clear consensus on the specific moral criteria to be used. This article presents the case of a mother who expressed her wish that her child with Down syndrome should not have been resuscitated at birth. It explores the ethical (...) issues at stake in both her misgivings about the resuscitation and her unwillingness to consider surgical repair of an atrioventricular (AV) canal defect. Knowing that children born with Down syndrome are able to pursue life’s goals, should our treatment of complete AV canal defect in such children be considered morally obligatory, even in resource-poor settings like Ghana? (shrink)

ABSTRACTMother‐to‐child transmission of HIV represents a particularly dramatic aspect of the HIV epidemic with an estimated 600,000 newborns infected yearly, 90% of them living in sub‐Saharan Africa. Since the beginning of the HIV epidemic, an estimated 5.1 million children worldwide have been infected with HIV. MTCT is responsible for 90% of these infections. Two‐thirds of the MTCT are believed to occur during pregnancy and delivery, and about one‐third through breastfeeding. As the number of women of child bearing age (...) infected with HIV rises, so does the number of infected children. It is apparent that voluntary testing in Botswana has made some valuable inroads in decreasing perinatal HIV transmission, but the statistics showing the increased rate of HIV infection among women 15–24 years of age are not very promising. After reviewing all the pertinent scientific data it is clear that mandatory HIV testing of all pregnant women in conjunction with the implementation of a full package of interventions would save thousands of lives – mothers, newborns and others who could be infected as a result of these women not being aware of their HIV status. If the protection and preservation of human life is a priority in Botswana, then it is time to allow for mandatory HIV testing of all pregnant women, before it is too late for those who are the most vulnerable. To do less would be medically inappropriate and ethically irresponsible. (shrink)

When the decision has been made to stop treatment of a newborn child with a bad prognosis, the child usually dies in a short time. Sometimes, however, gasping occurs, and although it is usually thought that this is not a sign of suffering, the parents can hardly fail to interpret it as such. Could that be a reason to administer muscle relaxants to the child? It would not harm the child and may greatly benefit the (...) parents. So it seems the humane thing to do. Legally, however, the action would count as killing, and the prohibition of killing normally implies a denial of the authority to decide on exceptions, which should be understood as a protection of public trust. I discuss three ways of arguing why the law, nevertheless, should allow for an exception in this case. The discussion identifies and describes this kind of conflict, and shows how to evaluate proposals for solving it, using a particularly clear exemplary case by way of illustration. (shrink)

When the decision has been made to stop treatment of a newborn child with a bad prognosis, the child usually dies in a short time. Sometimes, however, gasping occurs, and although it is usually thought that this is not a sign of suffering, the parents can hardly fail to interpret it as such. Could that be a reason to administer muscle relaxants to the child? It would not harm the child and may greatly benefit the (...) parents. So it seems the humane thing to do. Legally, however, the action would count as killing, and the prohibition of killing normally implies a denial of the authority to decide on exceptions, which should be understood as a protection of public trust. I discuss three ways of arguing why the law, nevertheless, should allow for an exception in this case. The discussion identifies and describes this kind of conflict, and shows how to evaluate proposals for solving it, using a particularly clear exemplary case by way of illustration. (shrink)

The use of ultrasonic scans in pregnancy makes it possible to observe the fetus undisturbed in the womb. Dr Alessandra Piontelli has done what no one has done before: she observed eleven fetuses in the womb using ultrasound scans, and then observed their development at home from birth up to the age of four years. She includes a description of the psychoanalytic psychotherapy of one of the research children, and the psychoanalysis of five other very young children whose behaviour in (...) analysis suggested that they were deeply preoccupied with their experience in the womb. Dr Piontelli has discovered what many parents have always thought - that each fetus, like each newborn baby, is a highly individual creature. By drawing on her experience as a child psychotherapist and psychoanalyst as well as on her observational research, she is able to investigate issues relating to individuality, psychological birth and the influence of maternal emotions during pregnancy. Her findings demonstrate clearly how psychoanalytical evidence enhances, deepens and supports observational data on the remarkable behavioural and psychological continuities between pre-natal and post-natal life. (shrink)

This paper articulates a careful and detailed objection to the moral permissibility of postnatal abortion. Giubilini and Minerva claim that if being unable to nurture one’s newborn child without significant burdens to oneself, family or society, is a proper moral ground for the demand that the life of a fetus be terminated, then ‘after-birth abortion should be considered a permissible option for women who would be damaged by [rearing the child or] giving up their newborns for adoption.’ (...) It will be shown that the permissibility of postnatal abortion does not follow from the argument’s premises, in particular, the premise that the newborn is not a person in the morally relevant sense. (shrink)

The case of Twin B involves the decision to send a newborn to a less intensive Level 2 special care nursery (SCN) than to the Level 3 neonatal intensive care unit (NICU) that is considered optimal by the physician. The physician’s acceptance of the transfer is against the child’s best interest and is due to parental convenience. In analyzing the case, we reject the best interest standard. Our rejection is partly supported by the views of Douglas Diekema, John (...) Hardwig, and Lannie Ross. Instead of the best interest standard, we offer and defend an approach we base on a microeconomic analysis of externalities, such as those involved with automobile emissions. This extends our previously presented general microeconomic approach to patient decision-making. It provides a clearer way to evaluate situations, like those of Twin B, in which burdens faced by family members may be used to determine the appropriate level of treatment for a decisionally incapable patient. (shrink)

"The problem with you, Dewey, is that you think philosophy is done with the hands rather than with the eyes.""Thank you for the compliment."1A child's curious hand: like the budding of a plant seeking nourishment from sun and soil, the hand expresses into the world so that it may give, receive, and reproduce itself: the newborn grasping for mama's breast or papa's nose, instinctually squeezing a finger that may be placed in its palm; the toddler negotiating the traumatic (...) development of its identity by seizing toys and declaring "Mine!"; the painful learning that fire is hot through the necessary experience of placing fingers in flame despite previous verbal warnings; holding hands with grandpa while crossing the .. (shrink)

Women most fully experience the consequences of human reproductive technologies. Men who convene to evaluate such technologies discuss "them": the women who must accept, avoid, or even resist these technologies; the women who consume technologies they did not devise; the women who are the objects of policies made by men. So often the input of women is neither sought nor listened to. The privileged insights and perspectives that women bring to the consideration of technologies in human reproduction are the subject (...) of these volumes, which constitute the revised and edited record of a Workshop on "Ethical Issues in Human Reproduction Technology: Analysis by Women" (EIRTAW), held in June, 1979, at Hampshire College in Amherst, Massachusetts. Some 80 members of the workshop, 90 percent of them women (from 24 states), represented diverse occupations and personal histories, different races and classes, varied political commitments. They included doctors, nurses, and scientists, lay midwives, consumer advocates, historians, and sociologists, lawyers, policy analysts, and ethicists. Each session, however, made plain that ethics is an everyday concern for women in general, as well as an academic profession for some. (shrink)

Two of the most poignant decisions in pediatrics concern disagreements between physicians and families over imperiled newborns. When can the family demand more life-sustaining treatment than physicians want to provide? When can it properly ask for less? The author looks at these questions from the point of view of decision theory, and first argues that insofar as the family acts in the child’s best interest, its choices cannot be constrained, and that the maximax and minimax strategies are equally in (...) the child’s best interest. He then proposes a guideline according to which the family can demand LST if it is physiologically possible to preserve a life the child can be expected to welcome, and refuse such treatment if it causes suffering that is “more than can be borne” even if an uncompromised life is expected to emerge. (shrink)

Prenatal expectations about what children will be like after birth may provide a context for how parents perceive their infant's actual temperament. We examined how these expectations and perceptions are associated and together predict early parenting behavior, with parenting behavior in turn predicting changes in temperament. Reports of 125 families about their expectations of their unborn child's temperament, their infant's temperament at 4 and 12 months post-partum, and their hostile, responsive, warm, and overprotective parenting were included. We also included (...) data from an independent sample of 168 mothers, with the same measures, except that mothers reported on Big Five personality traits at T1. Results indicated that in both samples, parents' expectations were positively associated with perceptions of infant temperament. Prenatal expectations and newborn temperament independently predicted parenting behavior, and maternal and paternal parenting in turn predicted infant temperament at T3, controlling for infant temperament at T2. Although overall findings indicated associations between a more difficult temperament and more negative/less positive parenting, significant combinations of specific traits and parenting behaviors were sample-specific—indicating that more research is necessary to draw a conclusion about specific links. Both maternal and paternal expectations about their unborn child's temperament appear to carry over into the postpartum reality and provide a context for shaping early interactions between caregivers and their children, which may further shape the developing temperament of the child. (shrink)

From the very beginning, studies of the nature and nurture of intelligence have been closely associated with an interest in intervening, and those interventions have been surrounded by controversy. The nature of those controversies has not always been the same, however. Since the mid‐nineteenth century, when Francis Galton imagined a science that would assess the extent to which a trait like “genius” was due to nature or due to nurture, science and technology have changed dramatically, and so have the interventions (...) that have been envisioned in light of those developments. A scientist today can search for particular stretches of DNA and assess whether differences in those stretches are associated with differences in a human trait of interest; a genetic counselor today can genetically test an individual (be it an embryo, fetus, newborn, child, or adult) and provide information about what that genetic result means, allowing for interventions that can range from terminating a pregnancy to prescribing chemotherapy. So when one asks a question like, “Why is studying the genetics of intelligence controversial?,” it is important to realize up front that the answer will be, “It can be controversial for a variety of different reasons, and those reasons have evolved over time.” The purpose of this essay is to provide a survey of the controversies that surround genetic studies of intelligence. With the survey in place, I will then draw out several lessons both for scientists who study the genetics of intelligence as well as for science studies scholars (bioethicists, philosophers, historians, sociologists) who reflect and comment on the controversies surrounding that research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Diacritics 30.4 (2000) 38-58 [Access article in PDF] Giorgio Agamben and the Politics of the Living Dead Andrew Norris Death is most frightening, since it is a boundary. —Aristotle, Nicomachean EthicsAnd as the same thing there exists in us living and dead and the waking and the sleeping and young and old: for these things having changed round are those, and those having changed round are these. —Heraclitus, Fragment (...) 88 What is politics today? What is its relationship to the tradition from which it emerges? The questions are difficult ones to answer in part because contemporary politics seems so schizophrenic. In affluent Western countries politics is increasingly a matter of spectacle on the one hand and managed economies on the other. Hannah Arendt seems quite confirmed in her claim that the once-glorious public realm of appearance is fundamentally degraded when it is overrun by concerns more appropriate to the private realm, such as household management and gossip. If this "unnatural growth of the natural" [47] inclines us to nostalgia for a time when the two realms were more decisively separated, such nostalgia is likely intensified by the "ethnic cleansing," rape camps, and genocide that we now associate with names such as "Yugoslavia" and "Rwanda." But as improbable as any flight to the past may be, it is even less likely that the politics of that past could help us navigate the treacherous waters of our current technological society. I have in mind not only the familiar claim that the attempted genocides of our time are only made possible by quite modern forms of technology, organization, and experience, 1 but also recent scientific and "medical" advances. Consider just two: first, the corporate driven and controlled development of biotechnologies, in which huge multinationals are acquiring patents to genetic "information" such as "all human blood cells that have come from the umbilical cord of [any] newborn child." If there is any doubt that such developments will lead us to redefine the human being, these may be laid to rest by the case of John Moore, an Alaskan businessman who found his own body parts had been patented, without his knowledge, by the University of California at Los Angeles and licensed to the Sandoz Pharmaceutical Corporation [Rifkin 60-61]. So much for Locke's attempt to ground the institution of private property in the fact that "every Man has a Property in his own Person"! 2 In its place we seem to be moving [End Page 38] toward something more like the "logical synthesis of biology and economy" called for by the National Socialist Institut allemand in Paris in 1942 [Agamben, Homo Sacer 145]. A similar process of redefinition is already underway in the field of death, a phenomenon that scientists and lawyers are having a harder and harder time pinning down. Where once death was defined by the cessation of the movement of the heart and lungs, recent life support technologies have forced scientists to define death in terms of such technologies. Witness Doctor Norman Shumway's defense of the definition of death as brain death: "I'm saying that anyone whose brain is dead is dead. It is the one determinant that would be universally applicable, because the brain is the one organ that can't be transplanted" [163]. By implication, if and when technology is developed that allows for brain transplants, even those whose brains are "dead" will be brought back to some kind of life, perhaps as organ farms for others who are less ambiguously alive.Giorgio Agamben, from whose book Homo Sacer: Sovereign Power and Bare Life I take both this last grisly example and its analysis, argues that, contrary to appearances, such developments do not represent a radical break with the tradition. His analysis both builds upon and corrects Michel Foucault's claim that politics in our time is constituted by disciplines of normalization and subjectification that Foucault labels "bio-power." For Foucault, biopower is fundamentally modern. "What might be called a society's 'threshold of modernity,'" he writes, "has been reached when the life of the species is wagered... (shrink)

In spite of an intensive discussion of ethical subjects, psychiatric departments rarely request clinical ethics support. However, during regular psychological supervisions subjects with an underlying ethical conflict are increasingly encountered. Based on the case study of a 39-year-old female patient suffering from personality disorder and her newborn child, the role of ethical consultation in psychiatric treatment and the decision making regarding health and welfare of child and mother will be presented. While discussing opportunities and limitations of psychological (...) supervision as a possible vehicle for clinical ethics support, it becomes obvious that during psychological supervision, ethical conflicts can also be reflected and treatment alternatives be evaluated. Psychological supervision finds its limits because of its more intuitive processes when the conflict escalates, when the patient cannot be involved and when institutional interests dominate. In these cases, the more structured and formalised process of clinical ethics consultation clearly offers advantages. (shrink)

This article analyses the discursive construction of collective and individual memories and the functions of commemorative events for the discursive construction of national identities through the example of Austrian post-war commemorative events. Thus, the various attempts to come to terms with the Nazi past in post-war Austria are illustrated in detail. The article will first summarize the socio-political contexts relating to the relevant post-war commemorative years in Austria. Then we will consider sequences of a political speech by the then Austrian (...) chancellor, Dr Wolfgang Schüssel, as one of many possible examples in 2005 which establishes a hegemonic stance towards the Nazi past. Finally, we will discuss our results and illustrate that, in addition to hegemonic discourses, competing narratives aim to provide different answers to the basic question `how should one come to terms with traumatic pasts?' Our results are such that in the hegemonic narrative of Austrian history after 1945, the political event of the Declaration of Independence is represented metaphorically as a `rebirth'; a metaphorical scenario which constructs a `creation myth', and by this anthropomorphization suggests that `newborn' Austria is to be perceived as innocent as a newborn child. On the other hand, the historical events before and after are placed in the cognitive frame of natural disasters or fateful events and a community of victims is discursively constructed comprising the victims of the Nazi terror as well as the soldiers waging the war of aggression. Discursive patterns apparent in this case study can, of course, be generalized to similar communicative events in many nation-states. The specific systematic and explicit linguistic/pragmatic and discourse-analytic methodology presented in this article lends itself to deconstruct official discourses which influence collective beliefs, opinions and ideologies. (shrink)

Toward the midpoint of theOTJocasta, in a bid to convince Oedipus of the unreliability of oracles, recalls the old prophecy that Laius was destined to die at the hands of his son. Jocasta points out that this prediction proved doubly mistaken, since Laius was killed by foreign robbers at a crossroads and his newborn child was exposed on the desolate mountainside. To Jocasta's surprise, Oedipus responds with agitation. He questions her closely about the circumstances of Laius' death and (...) then embarks on an autobiographical narrative that touches on his early life in Corinth and his journey to Delphi, reaching its rhetorical climax with the description of his own fateful encounter at the very crossroads mentioned by Jocasta. (shrink)

In this paper I argue that a newborn child and the Mother, defined as any person who takes up the role of other,1 reflect the ontological connectedness of God and humankind. The relationship between the infant and other is experienced by the child as if the two are one, and in this, life is first experienced by the infant as being ‘not alone’. The human interactions that we experience, or do not in early infancy, have such a (...) profound psychological effect on us that we continue to be impacted by them for our whole lives and to this end I assert that the experience of at-one-ness I will write about, fundamentally establishes the experience of the infant in the context of God, self and the other. (shrink)

Many people wonder as they look at their newborn child about how this perfect child can be marked by original sin. This invites us to look more deeply at our understanding of human nature and our capacity to make choices that can give life to ourselves and others, or take life and diminish it. While we have tended to identify the sin of the first couple as some sort of sexual sin, this is not supported by the (...) text of Genesis. The original sin is one of seeking knowledge, of overstepping the boundaries established by God, and grasping what is not ours. We are created in God's image, but that does not mean being equal to God-clearly not. God intimately and lovingly breathed life into the creature of the earth, but being so richly blessed is sadly not enough. The story is a complex one that leaves the reader wondering why God places the tree of the knowledge of good and evil right in the midst of the garden, where the first couple cannot avoid seeing it and continually have to confront the boundary that God has set. The role of the serpent prompts questions that will remain unanswered about how God allows the serpent to exist in the first place, let alone endanger the peace and tranquillity of the garden. (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)

Defective newborn children are to be considered human persons. Thus, primary duty in proxy consent is to act with the infant's best interest in mind. This duty may at times override the otherwise prima facie right to life, but only under restricted circumstances. Refinements of McCormick's “relational potential” criteria and of ordinary-extraordinary means analysis prove useful in such decisions. Utilitarian considerations of social consequences have impact but can be kept subsidiary. The importance for decision making of available child (...) support services is considered. Spina bifida is used throughout as an example of issues discussed. (shrink)

Newborn screening for genetic diseases has developed rapidly in Western countries. These biopolitics raise the question of birth as a sociological “knot” insofar as it is the threshold between the child and the fetus. The question therefore addressed in this text, based on a field study of newborn screening for cystic fibrosis in France, is that of the link between the quest for good health and the elimination of poor health. Do they reinforce each other or, on (...) the contrary, are they contradictory? I analyze the positions of both mothers of screened children and clinicians regarding the following three points: prenatal diagnosis to preclude sets of sick siblings, identification of heterozygous individuals, and generalized prenatal screening. This study shows how increasingly attentive patient care and an increasingly demanding approach to prenatal diagnosis reinforce one another. It also analyzes the role of taking action early on and evaluating the lives of sick or disabled people in this process. In conclusion, I engage a more general discussion about what I suggest calling a “quality life.”. (shrink)

The purpose of this research was to explore the concept of collaboration within a specific healthcare context and to include the perspectives of healthcare users, a position largely lacking in previous studies. In applying a critical theoretical approach, the focus was on, as an exemplar, mothers with newborn babies who had spent more than 48 hr in a special care nursery. Semistructured interviews were undertaken with child health nurses, midwives and mothers. The three key theoretical findings on collaboration (...) generated in the study point to layers of meanings around identity, knowledge and institutions of care. Findings from the interview data analysis were further examined through the lens of key policy documents. The research outcomes indicate that the concept of collaboration serves an important function in healthcare in obscuring the complexities and ambiguities that characterise the care continuum. The study concludes the need for a more critical approach to the assumptions that underlie the language of collaboration and the implications for practice in healthcare. (shrink)

Jan Narveson criticizes the view expressed in my Libertarian Philosophy in the Real World that there is no orthodox libertarian position on the ethics of abortion. He asserts that fetuses lack the defining characteristics of personhood, and thus are ineligible for what he terms “intrinsic” rights under his, and presumably any other, plausible libertarian theory. My counterargument is threefold: Narveson’s contractarianism can be interpreted in a way that is consistent with the pro-life perspective; because his theory permits no principled distinction (...) between the moral status of third trimester fetuses and newborns, the contrary reading of his social contract produces a result that is implausible and even repellent; and even if his version of contractarianism does imply a unique, aggressively pro-choice stance on abortion, there are competing libertarian theories that are receptive to pro-life views. (shrink)

Under the terms of the UN Convention on the Rights of the Child, which Australia has ratified, children have a right to know who their genetic parents are. As a result, we have a duty to establish these facts and to make this information available for children to access should they wish to know. Introducing mandatory DNA testing of newborns and their alleged genetic parents is one viable option to ensure that this information is available for children to access. (...) Indeed, it may be the only viable option to address childrens' right to the fulfilment of Article 7 of the CRC. There are a number of benefits to obtaining this benefit for children. For one, mandatory DNA testing could solve all disputed paternity cases and finalise them early in the lives of children, thus making life more financially secure for those children in the long term. This could reduce or eliminate the need for fathers to secretly carry out DNA tests in order to disestablish paternity. The large number of benefits gained from identifying genetic parents for children and the small possible risks that they may suffer when this information is withheld give us good reasons to support mandatory DNA testing. (shrink)

Mother-to-child transmission of the Human Immunodeficiency –Virus is a serious public health problem, contributing up to 90% of childhood HIV infections. In Tanzania, the prevention-of-mother-to-child-transmission feature of the HIV programme was rolled out in 2000. The components of PMTCT include counselling and HIV testing directed at antenatal clinic attendees. It is through the process of Provider Initiated Counseling and Testing that counselling is offered participant confidentiality and voluntariness are upheld and valid consent obtained. The objective of the study (...) was to explore antenatal clinic attendees’ experiences of the concept of voluntariness vis- a- vis the implementation of prior counseling and subsequent testing for HIV under the PITC as part of their antenatal care. In-depth interviews were conducted with17 antenatal clinic attendees and 6 nursing officers working at the Muhimbili National Hospital antenatal clinic. The study data were analyzed using qualitative content analysis. Antenatal clinic attendees’ accounts suggested that counselling and testing for HIV during pregnancy was voluntary, and that knowledge of their HIV status led them to access appropriate treatment for both mother and her newborn baby. They reported feeling no pressure from nursing officers, and gave verbal consent to undergo the HIV test. However, some antenatal clinic attendees reported pressure from their partners to test for HIV. Healthcare providers were thus faced with a dilemma of disclosure/ nondisclosure when dealing with discordant couples. Antenatal clinic attendees at MNH undertook the PITC for HIV voluntarily. This was enhanced by their prior knowledge of HIV, the need to prevent mother- to- child transmission of HIV, and the effectiveness of the voluntary policy implemented by nursing officers. (shrink)

Few subjects have generated so many newspaper headlines and such heated controversy as the treatment, or non-treatment, of handicapped newborns. In 1982, the case of Baby Doe, a child born with Down's syndrome, stirred up a national debate in the United States, while in Britain a year earlier, Dr. Leonard Arthur stood trial for his decision to allow a baby with Down's syndrome to die. Government intervention and these recent legal battles accentuate the need for a reassessment of the (...) complex issues involved. This volume--by two authorities on medical ethics--presents a philosophical analysis of the subject based on particular case studies. Addressing the doctrine of the absolute sanctity of life, Singer and Kuhse examine some actual cases where decisions have been reached; consider the criteria for making these decisions; investigate the differences between killing and letting die; compare Western attitudes and practices with those of other cultures; and conclude by proposing a decision-making framework that offers a rational alternative to the polemics and confusion generated by this highly controversial topic. (shrink)