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 ‘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)

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)

In the 1960s, newborn screening programs tested for a single very rare but serious disorder. In recent years, thanks to the development of new screening technology, they have expanded into panels of tests; a federally sponsored expert group has recommended that states test for twenty-nine core disorders and twenty-five secondary disorders. By the standards used to decide whether to introduce new preventive health services into clinical use, the decision-making in newborn screening policy has been lax.

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)

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)

Policies and position statements regarding decision-making for extremely premature babies exist in many countries and are often directive, focusing on parental choice and expected outcomes. These recommendations often state survival and handicap as reasons for optional intervention. The fact that such outcome statistics would not justify such approaches in other populations suggests that some other powerful factors are at work. The value of neonatal intensive care has been scrutinized far more than intensive care for older patients and suggests that neonatal (...) care is held to a higher standard of justification. The relative value placed on the life of newborns, in particular the preterm, is less than expected by any objective medical data or any prevailing moral frameworks about the value of individual lives. Why do we feel less obligated to treat the premature baby? Do we put newborns in a special and lesser moral category? We explore this question from a legal and ethical perspective and offer several hypotheses pertaining to personhood, reproductive choices, “precious children,” and probable evolutionary and anthropological factors. (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)

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)

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)

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)

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)

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)

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)

In the past few years, medical practices surrounding the decision to resuscitate marginally viable newborns have received a fair amount of attention. Baroness Warnock, of the UK Nuffield Council on Bioethics, has recently suggested that Britain follow the recommended practice in Holland of setting a gestational age limit below which marginally viable newborns should not be routinely resuscitated, despite reported statistical probabilities of raw survival approaching twenty percent. In the US, a highly publicized case from Texas came to (...) a controversial legal conclusion, permitting physicians to disregard parental preference for palliative care and unilaterally initiate resuscitation when faced with the birth of an extremely premature baby. (shrink)

Though in existence for over thirty-five years, due to the increasing panoply of possible tests. Newborn screening programs are drawing public attention. Many jurisdictions have mandatory newborn screening programs for treatable disorders. Disorders are detected through tests on blood spots drawn from a newborn’s heel soon after birth and verified through a diagnostic test with follow-up. Unbeknownst to most parents, these blood spot cards are also stored thereafter. Indeed, while dried blood spots are primarily used for screening for health problems, (...) experience demonstrates that they can be made useful in various contexts unrelated to screening.Newborn dried blood spots have taken on a new life as a result of developments in genetics and the increasing ability of bioinformatics to link DNA information with clinical data. Additionally, storage and secondary uses have been documented to occur without parental consent. (shrink)

Recently, I argued that subjects inside of artificial wombs—termed ‘gestatelings’ by Romanis—share the same legal and moral status as newborns (neonates). Gestatelings, on my view, are persons in both a legal and moral sense. Kingma challenges these claims. Specifically, Kingma argues that my previous argument is invalid, as it equivocates on the term ‘newborn’. Kingma concludes that questions about the legal and moral status of gestatelings remain ‘unanswered’. I am grateful to Kingma for raising potential concerns with the view (...) I have presented. In this essay, however, I argue that (most) of Kingma’s objections are unpersuasive. First, my original argument does not equivocate on terms like ‘newborn’ or ‘neonate’. The terms denote human beings that have been born recently; that is what matters to the argument. Charges of equivocation, I suspect, rest on a confusion between the denotation and connotations of ‘newborn’ (or ‘neonate’). Next, I show that, contra Kingma, it is clear that—under current law in the USA and UK—gestatelings would count as legal persons. Moral personhood is more difficult. On that subject, Kingma’s criticisms have merit. In response, however, I show that my original claim—that gestatelings should count as moral persons—remains true on several (common) philosophical accounts of personhood. Regarding those accounts that imply gestatelings are not moral persons, I argue that advocates face a troubling dilemma. I conclude that regardless of which view of moral personhood one adopts, questions about the moral status of gestatelings are not ‘unanswered’. (shrink)

Though in existence for over thirty-five years, due to the increasing panoply of possible tests. Newborn screening programs are drawing public attention. Many jurisdictions have mandatory newborn screening programs for treatable disorders. Disorders are detected through tests on blood spots drawn from a newborn’s heel soon after birth and verified through a diagnostic test with follow-up. Unbeknownst to most parents, these blood spot cards are also stored thereafter. Indeed, while dried blood spots are primarily used for screening for health problems, (...) experience demonstrates that they can be made useful in various contexts unrelated to screening.Newborn dried blood spots have taken on a new life as a result of developments in genetics and the increasing ability of bioinformatics to link DNA information with clinical data. Additionally, storage and secondary uses have been documented to occur without parental consent. (shrink)

IntroductionHigh healthcare costs make illness precarious for both patients and their families’ economic situation. Despite the recent focus on the interconnection between health and financial risk at the systemic level, the ethical conflict between concerns for potential health benefits and financial risk protection at the household level in a low-income setting is less understood.MethodsUsing a seven-step ethical analysis, we examine a real-life dilemma faced by families and health workers at the micro level in Ethiopia and analyse the acceptability of limiting (...) treatment for an ill newborn to protect against financial risk. We assess available evidence and ethical issues at stake and discuss the dilemma with respect to three priority setting criteria: health maximisation, priority to the worse-off and financial risk protection.ResultsGiving priority to health maximisation and extra priority to the worse-off suggests, in this particular case, that limiting treatment is not acceptable even if the total well-being gain from reduced financial risk is taken into account. Our conclusion depends on the facts of the case and the relative weight assigned to these criteria. However, there are problematic aspects with the premise of this dilemma. The most affected parties—the newborn, family members and health worker—cannot make free choices about whether to limit treatment or not, and we thereby accept deprivations of people’s substantive freedoms.ConclusionIn settings where healthcare is financed largely out-of-pocket, families and health workers face tragic trade-offs. As countries move towards universal health coverage, financial risk protection for high-priority services is necessary to promote fairness, improve health and reduce poverty. (shrink)

Debates about expanding newborn screening with whole genome sequencing are fueled by data about public perception, public opinion, and the positions taken by public advocates and advocacy groups. One form of evidence that merits attention as we consider possible uses of whole‐genome sequencing during the newborn period is parents’ (and children's) diverse experiences with existing expanded screening protocols. What do we know about this experience base? And what implications might these data have for decisions about how we use whole genome (...) sequencing and how we assess its impact in the future? Although the broader literature on genetic susceptibility testing suggests that testing usually does not have adverse effects on children's psychosocial well‐being, certain newborn screening results have been demonstrated to cause distress, alter behavior, and even to influence the formation of new parental and family identities. (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)

In their article, Dees and Kwon (2013) describe the case of newborn screening for Krabbe disease and argue compellingly that a mandatory newborn screening program for this disease is problematic in several respects. Therefore, they submit, testing on Krabbe disease should only be offered on a voluntary basis, under a research protocol. In my opinion, Dees and Kwon are correct to point out the problematic character of a mandatory screening program for Krabbe disease. Their move toward a research paradigm is (...) however problematic. More specific, their proposal presents problems for the role of informed consent in Krabbe testing. (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)

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)

IntroductionThanks to Dominic Wilkinson, a formidable clinician-philosopher, for his considered response, and especially for highlighting my work's translatability outside of an theological context. In part, because bioethics’ pioneers were theologians, the discipline misses something important when theology is not an integral part of the conversation. I do not have the space to do an in-depth response,i so the best I can do is use some assertions to gesture at a few key points.Relational anthropology and the best interests of the patientWilkinson (...) spends significant time critiquing my claim that the Social Quality of Life Model is consistent with a healthcare provider acting in the best interest of her patient. And though he notes that my general argument goes through without this claim, the idea that clinicians should always act in the best interests of their patients is so commonly held that this topic deserves sustained attention. Wilkinson highlights my relational anthropology as the foundation of my claims about the sQOL, but this anthropology is not founded, as he suggests, on a crude naturalism. Ultimately, it is founded on the first principle that human beings are made in the image of a Triune God who is intrinsically relational. Many different kinds of thinkers have a similar anthropology. We may see the interconnectedness and social nature of human beings as empirical evidence which supports our position, but it is not sufficient to produce the anthropology itself without the naturalistic fallacy Wilkinson rightly mentions.Much of Wilkinson's disagreement comes down to anthropological first principles. He appears to have an enlightenment view which begins with the person, an individual subject of benefits and burdens. Someone with …. (shrink)

Common‐sense morality seems to dictate that newborn babies strictly outrank non‐human animals on an ordered list of subjects of moral consideration. This is best described as the view that newborn babies have a higher moral status than any non‐human animal. In this article, I will argue that this common‐sense claim about the special moral status of newborn babies makes it hard to avoid the conclusion that fetuses, including pre‐conscious fetuses, also have a higher moral status than any non‐human animal—indeed, as (...) high as newborn babies. While this conclusion does not quite entail that abortion is generally seriously immoral, it does seem to follow that it would be no less difficult to justify (even relatively early) abortion than it would be to justify killing a newborn. (shrink)