ABSTRACTThis article reports the first results of a survey, by mail questionnaire, of the attitudes and practices of paediatricians with respect to the nontreatment of newborn infants with severe defects. Questionnaires were sent to 500 paediatricians in senior positions throughout the United Kingdom. 263 questionnaires, were completed and returned. The survey was an attempt to identify areas of consensus amongst paediatric specialists, and to discover some of the factors which influence their practice. A preliminary analysis of the data (...) has revealed variations in attitudes and practices in some areas, and a broad consensus in others. The following report is not an endorsement of any particular point of view. (shrink)

ABSTRACT This article reports the first results of a survey, by mail questionnaire, of the attitudes and practices of paediatricians with respect to the nontreatment of newborn infants with severe defects. Questionnaires were sent to 500 paediatricians in senior positions throughout the United Kingdom. 263 questionnaires, (52.6%) were completed and returned. The survey was an attempt to identify areas of consensus amongst paediatric specialists, and to discover some of the factors which influence their practice. A preliminary analysis of (...) the data has revealed variations in attitudes and practices in some areas, and a broad consensus in others. The following report is not an endorsement of any particular point of view. (shrink)

Are there some newborn infants whose short- and long-term care costs are so great that treatment should not be provided and they should be allowed to die? Public discourse and academic debate about the ethics of newborn intensive care has often shied away from this question. There has been enough ink spilt over whether or when for the infant's sake it might be better not to provide life-saving treatment. The further question of not saving infants because (...) of inadequate resources has seemed too difficult, too controversial, or perhaps too outrageous to even consider. However, Roman Catholic ethicist Charles Camosy has recently challenged this, arguing that costs should be a primary consideration in decision-making in neonatal intensive care. In the first part of this paper I will outline and critique Camosy's central argument, which he calls the ‘social quality of life (sQOL)’ model. Although there are some conceptual problems with the way the argument is presented, even those who do not share Camosy's Catholic background have good reason to accept his key point that resources should be considered in intensive care treatment decisions for all patients. In the second part of the paper, I explore the ways in which we might identify which infants are too expensive to treat. I argue that both traditional personal ‘quality of life’ and Camosy's ‘sQOL’ should factor into these decisions, and I outline two practical proposals. (shrink)

Conscious experiences in infants remain poorly understood. In this NeuroView, Passos-Ferreira discusses recent evidence for and against consciousness in newborn babies. She argues that the weight of evidence from neuroimaging and behavioral studies supports the thesis that newborn infants are conscious.

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)

When is it permissible to allow a newborn infant to die on the basis of their future quality of life? The prevailing official view is that treatment may be withdrawn only if the burdens in an infant's future life outweigh the benefits. In this paper I outline and defend an alternative view. On the Threshold View, treatment may be withdrawn from infants if their future well-being is below a threshold that is close to, but above the zero-point of (...) well-being. I present four arguments in favor of the Threshold View, and identify and respond to several counterarguments. I conclude that it is justifiable in some circumstances for parents and doctors to decide to allow an infant to die even though the infant's life would be worth living. The Threshold View provides a justification for treatment decisions that is more consistent, more robust, and potentially more practical than the standard view. (shrink)

In many forms of severe acute brain injury there is an early phase when prognosis is uncertain, followed later by physiological recovery and the possibility of more certain predictions of future impairment. There may be a window of opportunity for withdrawal of life support early, but if decisions are delayed there is the risk that the patient will survive with severe impairment. In this paper I focus on the example of neonatal encephalopathy and the question of the timing of prognostic (...) tests and decisions to continue or to withdraw life-sustaining treatment. Should testing be performed early or later; and how should parents decide what to do given the conflicting values at stake? I apply decision theory to the problem, using sensitivity analysis to assess how different features of the tests or different values would affect a decision to perform early or late prognostic testing. I draw some general conclusions from this model for decisions about the timing of testing in neonatal encephalopathy. Finally I consider possible solutions to the problem posed by the window of opportunity. Decision theory highlights the costs of uncertainty. This may prompt further research into improving prognostic tests. But it may also prompt us to reconsider our current attitudes towards the palliative care of newborn infants predicted to be severely impaired. (shrink)

Life-sustaining treatment is sometimes withdrawn or withheld from critically ill newborn infants with poor prognosis. Guidelines relating to such decisions place emphasis on the best interests of the infant. However, in practice, parental views and parental interests are often taken into consideration.In this paper I draw on the example of newborn infants with severe muscle weakness (for example spinal muscular atrophy). I provide two arguments that parental interests should be given some weight in decisions about treatment, (...) and that they should be given somewhat more weight in decisions about newborns than for older children. Firstly, the interests of the infant and of parents intersect, and are hard to separate. Parents’ views about treatment may be relevant to an assessment of the infant’s interests, and they may also affect those interests. Secondly, the interests of the infant in her future are relatively reduced by her developmental immaturity. In some situations parents’ welfare interests outweigh those of the infant. However, I argue that this would not justify treatment limitation except in the setting of severe impairment. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when it is (...) justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

Expert analysis is indispensable, especially in medical decision making, because it helps both physicians and patients in making rational decisions. In fact, medical expertise is the very reason pe...

After World War II, infant mortality rates started dropping steeply. We show how this was accomplished in socialist countries in East-Central Europe. Focusing on the two postwar decades, we explore comparatively how medical experts in Poland, Hungary, Czechoslovakia, and East Germany saved fragile newborns. Based on an analysis of medical journals, we argue that the Soviet Union and its medical practices had only a marginal influence; the four countries followed the recommendations of the World Health Organization instead, despite not being (...) members. Importantly, we analyze the expert clashes over definitions of livebirth, which impact infant mortality statistics. We analyze the divergent practices and negotiations between countries: since the infant mortality rate came to represent the level of socioeconomic advancement, its political significance was paramount. Analyzing the struggle to reduce infant mortality thus helps us understand how socialist countries positioned themselves within the transnational framework while being members of the “socialist bloc.”. (shrink)

Newborn infants are among those most severely affected by humanitarian crises. Aid organisations increasingly recognise the necessity to provide for the medical needs of newborns, however, this may generate distinctive ethical questions for those providing humanitarian medical care. Medical ethical approaches to neonatal care familiar in other settings may not be appropriate given the diversity and volatility of humanitarian disasters, and the extreme resource limitations commonly faced by humanitarian aid missions.In this paper, we first systematically review existing guidelines (...) relating to the treatment and resuscitation of newborns in humanitarian crises, finding little substantive ethical guidance for those providing humanitarian healthcare. We next draw on paradigm cases and published literature to identify and describe some of the major ethical questions common to these settings. We divide these questions into quality of life considerations, allocation of limited resources, and conflicting cultural norms and values. We finally suggest some preliminary recommendations to guide ethical decision‐making around resuscitation of newborns and withdrawal of treatment in humanitarian settings. (shrink)

I argue that newborn infants are conscious. I propose a methodology for investigating infant consciousness, and I present two approaches for determining whether newborns are conscious. First, I consider behavioral and neurobiological markers of consciousness. Second, I investigate the major theories of consciousness, including both philosophical and scientific theories, and I discuss what they predict about infant consciousness.

The purpose of the present study was to test the measurement invariance of the baby pediatric symptom checklist across gender and age as a means to provide for valid comparisons in point estimates across groups. A secondary goal involved confirming the earlier identified factor structure and re-examining the presence of differentially item functioning in the BPSC across grouping variables. Participants were 601 children aged below 1 year and 1 year to 12 months. Data were collected as part of the National (...) Health Interview Survey in 2020. Results related to gender indicated satisfying all five levels of measurement and structural invariance. When testing measurement invariance across age groups, a few modifications were necessary. Specifically, partial metric invariance was satisfied after freeing slope estimates of items 1 and 2, partial scalar after freeing intercept terms of items 6 and 10, and partial residual invariance through freeing error terms of items 2 and 12. These non-invariant estimates, however, provide support for partial invariance and do not invalidate the comparison of latent means. The BPSC can be used for the valid assessment of social–emotional skills in infants up to the age of 18 months. (shrink)

Newborn male circumcision is a minor surgical procedure that has generated significant controversy. Accumulating evidence supports significant health benefits, most notably reductions in urinary tract infections, acquisition of HIV and a number of other sexually transmitted infections, penile cancer, phimosis, paraphimosis, balanitis and lichen sclerosis. While circumcision, like any surgical procedure, has risks for complications, they occur in less than 1 in 500 infants circumcised and most are minor and require minimal intervention. The CDC and the American Academy (...) of Pediatrics believe that health benefits of circumcision outweigh the risks. For this reason, the AAP believes that parents should be allowed to make the decision concerning circumcision of their male infants after receiving non-biased information on health risks and health benefits. (shrink)

Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that universal genome sequencing is inevitable. Such optimism can come with the presumption that (...) discussing the potential limits, cost, and downsides of widespread application of genomic technologies is pointless, excessively pessimistic, or overly cautious. We disagree. Given the pragmatic challenges associated with determining what sequencing data mean for the health of individuals, the economic costs associated with interpreting and acting on such data, and the psychosocial costs of predicting one's own or one's child's future life plans based on uncertain testing results, we think this hope and optimism deserve to be tempered.In the analysis that follows, we distinguish between two reasons for using sequencing: to diagnose individual infants who have been identified as sick and to screen populations of infants who appear to be healthy. We also distinguish among three contexts in which sequencing for either diagnosis or screening could be deployed: in clinical medicine, in public health programs, and as a direct‐to‐consumer service. Each of these contexts comes with different professional norms, policy considerations, and public expectations. Finally, we distinguish between two main types of genome sequencing: targeted sequencing, where only specific genes are sequenced or analyzed, and whole‐exome or whole‐genome sequencing, where all the DNA or all the coding segments of all genes are sequenced and analyzed.In a symptomatic newborn, targeted or genome‐wide sequencing can help guide other tests for diagnosis or for specific treatment that is urgently needed. Clinicians use the infant's symptoms (or phenotype) to interrogate the sequencing data. These same complexities and uncertainties, however, limit the usefulness of genome‐wide sequencing as a population screening tool. While we recognize considerable benefit in using targeted sequencing to screen for or detect specific conditions that meet the criteria for inclusion in newborn screening panels, use of genome‐wide sequencing as a sole screening tool for newborns is at best premature. We conclude that sequencing technology can be beneficially used in newborns when that use is nuanced and attentive to context. (shrink)

This symposium includes twelve personal narratives from parents about making the decision whether to circumcise their infant male children. The authors of the narratives include five fathers and seven mothers. Nine of the 12 parent authors opted to circumcise their infant sons, though the reasons they stated for doing so varied. Most of the parent authors relied on cultural or social beliefs, religious guidance, or a desire for sameness with the infant's father. Parents who didn't circumcise their male infants (...) discuss their convictions about autonomy, bodily rights, and the medical benefits of circumcision versus the harm or pain caused by the procedure. The symposium includes four expert commentaries on the narratives that are informed and enriched by the commentators' expertise in pediatric bioethics, healthcare ethics, gender studies, Jewish law and tradition, and the medical and surgical techniques of circumcision. (shrink)

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)

Where do human numerical abilities come from? This article is a commentary on Leibovich et al.’s “From 'sense of number' to 'sense of magnitude' —The role of continuous magnitudes in numerical cognition”. Leibovich et al. argue against nativist views of numerical development by noting limitations in newborns’ vision and limitations regarding newborns’ ability to individuate objects. I argue that these considerations do not undermine competing nativist views and that Leibovich et al.'s model itself presupposes that infant learners have numerical representations.

Nurses working in a newborn intensive care unit report that treatment decision disagreements for infants in their care may lead to ethical dilemmas involving all health-care providers. Applying Rest’s Four-Component Model of Moral Action as the theoretical framework, this study examined the responses of 224 newborn intensive care unit nurses to the Nurses Ethical Involvement Survey. The three most frequent actions selected were as follows: talking with other nurses, talking with doctors, and requesting a team meeting. The (...) multiple regression analysis indicates that newborn intensive care unit nurses with greater concern for the ethical aspects of clinical practice (p =.001) and an increased perception of their ability to influence ethical decision making (p =.018) were more likely to display Nurse Activism. Future research is necessary to identify other factors leading to and inhibiting Nurse Activism as these findings explained just 8.5% of the variance. (shrink)

J S Mill used the term ‘dead dogma’ to describe a belief that has gone unquestioned for so long and to such a degree that people have little idea why they accept it or why they continue to believe it. When wives and children were considered chattel, it made sense for the head of a household to have a ‘sovereignal right’ to do as he wished with his property. Now that women and children are considered to have the full complement (...) of human rights and slavery has been abolished, it is no longer acceptable for someone to have a ‘right’ to completely control the life of another human being. Revealingly, parental rights tend to be invoked only when parents want to do something that is arguably not in their child's best interest. Infant male circumcision is a case in point. Instead of parental rights, I claim that parents have an obligation to protect their children's rights as well as to preserve the future options of those children so far as possible. In this essay, it is argued that the notion that parents have a right to make decisions concerning their children's bodies and minds—irrespective of the child's best interests—is a dead dogma. The ramifications of this argument for the circumcision debate are then spelled out and discussed. (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)

Newborn screening has evolved to include an increasingly complex spectrum of diseases, raising concerns that screening should be optional and require parental consent. Early detection of disorders like PKU and MCAD is essential to prevent serious disability and death in affected children. These are examples of high benefit-risk ratio disorders because of the irrefutable health benefits of early detection, coupled with the low risks of treatment. The dire consequences of not diagnosing an infant with a treatable disorder because of (...) parental refusal to screen are wholly unacceptable. Thus, we believe that newborn screening for disorders with high benefit-risk ratios should continue to be mandatory. (shrink)

Permanent congenital and early-onset hearing impairment is the most common sensory disorder among newborns. The WHO recommends newborn and infant hearing screening for all member states to facilitate early identification and intervention for children with PCEOHI. Ethical implications of newborn/infant hearing screening in low-income and middle-income countries should be considered. Although the Pacific Island region is estimated to have among the highest global burden of hearing loss, hearing health services are limited and virtually non-existent in Pacific Island countries. (...) The aim of this brief report is to consider the ethical implications of implementing hospital-based universal newborn hearing screening in Samoa. Based on well-acknowledged screening principles, this report found that the Samoan context does not satisfy the screening principles for such a programme, and that the implementation of UNHS would, therefore, be unethical. This conclusion was reached even after considering the hypothetical provision of necessary screening and diagnostic audiology equipment from external donors. We recommend that current efforts should be directed towards the wider professional community involved in the daily care of children with a permanent hearing loss. Given the high prevalence of paediatric ear disease in the Pacific Islander population, an interim ear and hearing programme could be considered at the community level. These strategies should provide the infrastructure and referral pathways required in the advent of UNHS in Samoa. (shrink)

ObjectiveTo investigate the attitudes of Chinese parents regarding the storage of dried blood spots collected for newborn screening (NBS) and their use in research.MethodsWe conducted a hospital-based survey of parents and examined parental attitudes regarding (a) allowing NBS sample storage, (b) permitting use of children’s NBS samples for research with parental permission, and (c) permitting use of children’s NBS samples for research without parental permission.ResultsThe response rate was 52 percent. Of parents surveyed, 68 percent would permit their infant’s NBS (...) sample to be stored for at least some length of time. If permission is obtained, 69 percent of parents “strongly agreed” or “agreed” to permit use of the NBS sample for research. If permission is not obtained, only 14 percent of parents “strongly agreed” or “agreed.” There was no significant association between permitting use of NBS samples for research and parental gender, education, household income, number of children, or site of residence.ConclusionsThis is the first survey of Chinese parents regarding the use of NBS samples for different types of research, with results indicating that most parents would permit their infant’s sample to be stored and would support the use of NBS dried blood spots for research purposes. (shrink)

This paper investigates the scope and limits of parents' and physicians' obligations to anencephalic newborns. Special attention is paid to the permissibility of harvesting anencephalic organs for transplant. My starting point is to identify the general justification for treating patients in order to benefit third parties. This analysis reveals that the presence of a close relationship between patients and beneficiaries is often crucial to justifying treating in these cases. In particular, the proper interpretation of the Kantian injunction against treating persons (...) as means only takes on a different light in the context of special relationships. The implications of this analysis for our responsibilities to anencephalic infants is clarified. (shrink)

Birth asphyxia is the most common single cause of death in term newborn infants. The majority of deaths in developed countries follow decisions to withdraw intensive care. Recent technological advances, particularly the use of magnetic resonance imaging (MRI) of the brain, may affect the process of prognostication and decision-making. There is little existing evidence about how prognosis is determined in newborn infants and how this relates to treatment withdrawal decisions.An exploratory qualitative study was performed using in-depth (...) semi-structured interviews with a sample of ten neonatologists from tertiary intensive care units in the UK. Participants were purposively selected to ensure a range of experience and type of unit. They were asked about the process of prognostication for infants with birth asphyxia and decisions about treatment withdrawal. Interviews were transcribed and thematically analysed.MRI played a significant role in decision-making about life-sustaining treatment for a number of clinicians. Clinicians did not identify particular ethical concerns related to MRI, though wider discussion revealed issues relating to uncertainty around predictions, the timing of prognostication and decision-making, and difficulty in predicting quality of life. (shrink)

The essays in this volume, with the exception of Gary Ferngren's, derive from ancestral versions originally presented at a symposium, 'Conflicts with Newborns: Saving Lives, Scarce Resources, and Euthanasia: held May 10-12,1984, at the Mercer University School of Medicine, Macon, Georgia. We wish to express our gratitude to the Georgia Endowment for the Humanities for a generous grant for the symposium and to Mercer University and the Medical Center of Central Georgia for additional financial support. The vit:ws expressed in this (...) volume do not necessarily represent those of the Georgia Endowment for the Humani ties, Mercer University, or the Medical Center of Central Georgia. We have endeavored to bring together a group of individuals with contrast ing viewpoints to display some of the range of approaches to a major problem in public policy: medical decisions regarding the treatment of defective newborns. So many persons contributed to the symposium that acknowledg ment of each would be impossible. Although unnamed, we express our sincere appreciation to each. Three individuals, however, must be recognized: R. Kirby Godsey, President, Mercer University; William P. Bristol, Dean, Mercer University School of Medicine; and Kenneth C. Henderson, Medical Director and Director of Medical Education, Medical Center of Central Georgia. Without their support, the symposium could not have succeeded and this volume would not have been possible. We wish also to express our gratitude to S. G. M. (shrink)

When intensive care for newborns was introduced thirty years ago its primary goal was to improve the rates of survival of sick and premature infants. Medicine has been successful in attaining this goal; however, as more infants survive, the cost of intensive care and the additional cost of services and care for handicapped survivors continue to escalate. In order to curb the increasing cost of newborn intensive care, heightened initiatives directed at the prevention of premature births will (...) be necessary. (shrink)

In its American context the case of baby Messenger, a preterm infant disconnected from life-support by his father and allowed to die has generated debate about neonatal treatment protocols. Limited by the legal and ethical norms of the United States, this case did not consider treatment protocols that might be available in other countries such as Denmark and Israel: threshold protocols whereby certain classes of newborns are not treated, and preemptive abortion allowing one to choose late-term abortion rather than risk (...) delivery. Each offers a viable and ethically sound avenue for dealing with the economic and social expense of anomalous newborns by aborting or not treating those most likely to burden the health care system. Objections that these protocols are antithetical to American bioethical principles are considered but rejected as each policy answers to economic justice, utility and respect for autonomy. (shrink)

In Thursday's New England Journal of Medicine, two doctors from the University Medical Center Groningen in the Netherlands outline the circumstances in which doctors in their hospital have, in 22 cases over seven years, carried out euthanasia on newborn infants. All of these cases were reported to a district attorney's office in the Netherlands. None of the doctors were prosecuted.

Every infant has a right to bodily integrity. Removing healthy tissue from an infant is only permissible if there is an immediate medical indication. In the case of infant male circumcision there is no evidence of an immediate need to perform the procedure. As a German court recently held, any benefit to circumcision can be obtained by delaying the procedure until the male is old enough to give his own fully informed consent. With the option of delaying circumcision providing all (...) of the purported benefits, circumcising an infant is an unnecessary violation of his bodily integrity as well as an ethically invalid form of medical violence. Parental proxy ‘consent’ for newborn circumcision is invalid. Male circumcision also violates four core human rights documents—the Universal Declaration of Human Rights, the Convention on the Rights of the Child, the International Covenant on Civil and Political Rights, and the Convention Against Torture. Social norm theory predicts that once the circumcision rate falls below a critical value, the social norms that currently distort our perception of the practice will dissolve and rates will quickly fall. (shrink)

Psychological birth is not a single event but occurs again and again throughout one's life. A new psychological structure is bom in each developmental transformation of a person's existence. But what about "biological birth" or what we will call the bodily birth of the infant? Does this involve psychological development? It is not taken up in this way by developmental psychology, which usually begins with the newborn infant Some psychologists have even argued that when an infant leaves the mother's (...) uterus, he is bom biologically but not yet psychologically. In the following paper we will take this view as problematic and address to it a description of the birth process based on the perceptive observations of Frederick Leboyer. Appropriating some of Kegan's notions regarding psychological development,' we will reflect upon the . phenomenon of being bom psychologically. In other words, we will investigate whether and in what sense being bom can be seen as a phenomenon involving psychological development. (shrink)

The ethical issues around decision making on behalf of infants have been illuminated by two empirical research studies carried out in Scotland. In-depth interviews with 176 medical and nursing staff and with 108 parents of babies for whom there was discussion of treatment withholding/withdrawal, generated a wealth of data on both the decision making process and the management of cases. Both staff and parents believe that parents should be involved in treatment limitation decisions on behalf of their babies. However, (...) whilst many doctors and nurses consider the ultimate responsibility too great for families to carry, the majority of parents wish to be the final arbiters. We offer explanations for the differences in perception found in the two groups. The results of these empirical studies provide both aids to ethical reflection and guidance for clinicians dealing with these vulnerable families. They demonstrate the value of empirical data in the philosophical debate. (shrink)

Two questions about infant consciousness are especially central. First: are infants conscious? Second: what is infants’ conscious experience like? In previous work, I have addressed the first, arguing that newborn babies are conscious at birth and that it is possible to know something about what infants’ experiences are like. In this talk, I address the second, investigating the phenomenal structure of infant consciousness. I discuss whether infants have a rich or a minimal phenomenology. The current (...) consensus is that infants have perceptual experiences and experiences of pain and pleasure. But, do they have other types of phenomenology? Using Kriegel’s framework from The Varieties of Consciousness (2015), I explore whether infants have sensory phenomenology, cognitive phenomenology, imaginative phenomenology, emotional phenomenology, and agentive phenomenology. I also address the question of what is the phenomenal background of infants’ first-person experiences, and whether or not they have a minimal pre-reflexive structure of consciousness. (shrink)

This paper traces the development of parental rights to accept or to refuse treatment for a defective newborn infant in the United Kingdom and in the United States of America; its main purpose is to explore the common trends from which an acceptable policy may be derived. It is probable that the British law on parental decision-making in respect of infants suffering from Down's syndrome is to be found in the civil case of In Re B rather than (...) in the criminal case of R v Arthur. United States court decisions are strongly influenced by constitutional law and reflect the right to personal privacy. The position on each side of the Atlantic seems very similar but this similarity includes a sense of uncertainty as to legal responsibility. There is a case for agreed guidelines and a suggested format is offered for consideration. (shrink)

BackgroundMultidisciplinary study groups have produced documents in an attempt to support decisions regarding whether to resuscitate "at risk" newborns or not. Moreover, there has been an increasingly insistent request for juridical regulation of neonatal resuscitation practices as well as for clarification of the role of parents in decisions regarding this kind of assistance. The crux of the matter is whether strict guidelines, reference standards based on the parameter of gestational age and authority rules are necessary.DiscussionThe Italian scenario reflects the current (...) animated debate, illustrating the difficulty intrinsic in rigid guidelines on the subject, especially when gestational age is taken as a reference parameter for the medical decision.SummaryConcerning the decision to interrupt or not to initiate resuscitation procedures on low gestational age newborns, physicians do not need rigid rules based on inflexible gestational age and birth weight guidelines. Guidance in addressing the difficult and trying issues associated with infants born at the margins of viability with a realistic assessment of the infant's clinical condition must be based on the infant's best interests, with clinicians and parents entering into what has been described as a "partnership of care". (shrink)

When the delivery of a baby at the edge of viability is imminent, gestational age is usually the primary indi­cator for resuscitation. However, four other variables—female sex, antenatal corticosteroid therapy, singleton birth, and increased birth weight—are also associated with better infant survival and neurologic outcome in intensive care, and the combination of all five variables provides a stronger prognostic tool. An ethical framework is provided here for use in determining whether proposed treatments are likely to defend the dignity and sanctity (...) of a fragile periviable life. The framework is based on the principle of ordinary/propor­tionate and extraordinary/disproportionate medical treatment. The author recommends using the most recent outcome data and this ethical framework together to make perinatal resuscitation decisions. Use of gestational age alone is insufficient and ethically immoral. National Catholic Bioethics Quarterly 14.3 : 429–439. (shrink)