During the last two decades, neonatal screening in Europe and North America has expanded substantially. This article examines two recent suggestions for expanding neonatal screening: severe combined immunodeficiency and X-linked adrenoleukodystrophy. With reference to well-established risk-benefit based rationales for screening, it is argued that the case for introducing SCID in neonatal screening is considerably stronger than for introducing X-ALD. For instance, the majority of those screened for X-ALD most likely have a negative risk-benefit (...) ratio of screening: they develop milder symptoms or perhaps no symptoms at all, while still being monitored for a long time. This argument is used as a vehicle for making some general points regarding justified expansions of neonatal screening. First, when considering the expansion of neonatal screening, we should look at a condition specific case-by-case basis. Moreover, future expansions of neonatal screening should stick to the well-established rationales for screening while avoiding risk-benefit slippage. Otherwise, more strict procedures of informed consent are warranted in neonatal screening, procedures that, in the end, risk undermining the benefits of current neonatal screening programmes. (shrink)

Screening of newborns for permanent congenital or early-onset hearing impairment has emerged as an essential component of neonatal care in developed countries, following favourable outcomes from early intervention in the critical period for optimal speech and language development. Progress towards a similar programme in developing countries, where most of the world’s children with hearing impairment reside, may be impeded by reservations about the available level of support services and the possible effect of the prevailing healthcare challenges. Ethical justification (...) for the systematic introduction of screening programmes for hearing in newborns based on the limitations in current primary prevention strategies, lack of credible alternative early-detection strategies and the incentives for capacity-building for the requisite support services is examined. (shrink)

As a psychologist and an ethicist, we have explored empirically newborn screening consent and communication processes. In this paper we consider the impact on families if newborn screening uses whole genome sequencing. We frame this within the World Health Organization’s definition of health and contend that proposals to use whole genome sequencing in newborn screening take into account the ethical, practical and psychological impact of such screening. We argue that the important psychological processes occurring in the (...) neonatal phase necessitate a clear justification that providing risk information at this stage provides a health benefit. We illustrate how research on current newborn screening can inform whole genome sequencing debates, whilst highlighting important gaps. Obtaining explicit, voluntary, and sufficiently informed consent for newborn screening is challenging, however we stress that such consent is ethically and legally appropriate and psychologically and practically important. We conclude by outling how this might be done. (shrink)

Increased knowledge of the gene–disease associations contributing to common cancer development raises the prospect of population stratification by genotype and other risk factors. Individual risk assessments could be used to target interventions such as screening, treatment and health education. Genotyping neonates, infants or young children as part of a systematic programme would improve coverage and uptake, and facilitate a screening package that maximises potential benefits and minimises harms including overdiagnosis. This paper explores the potential justifications and risks of (...) genotyping children for genetic variants associated with common cancer development within a personalised screening programme. It identifies the ethical and legal principles that might guide population genotyping where the predictive value of the testing is modest and associated risks might arise in the future, and considers the standards required by population screening programme validity measures . These are distinguished from the normative principles underpinning predictive genetic testing of children for adult-onset diseases—namely, to make best-interests judgements and to preserve autonomy. While the case for population-based genotyping of neonates or young children has not yet been made, the justifications for this approach are likely to become increasingly compelling. A modified evaluative and normative framework should be developed, capturing elements from individualistic and population-based approaches. This should emphasise proper communication and genuine parental consent or informed choice, while recognising the challenges associated with making unsolicited approaches to an asymptomatic group. Such a framework would be strengthened by complementary empirical research. (shrink)

Putnam says that "In one way of conceiving it, realism is an empirical theory." In the present work it is maintained that, in another way of conceiving it, realism is a grammatical thesis. That is, many of the principles taken to be definitive of realism, e.g., "Truth is objective," "Truth is mind-independent," Dummett's "a thought can be true only if there is something in virtue of which it is true," are what Wittgenstein would have called "grammatical remarks." They simply call (...) attention to certain features of the grammar of truth and related concepts. Thus, e.g., it is a feature of the way we use "is true" that statements are not spoken of as true for one person and not true for another. ;The character of grammar and of grammatical remarks in general is spelled out in some detail; it is argued in particular that Wittgenstein is not intending to provide, by means of these notions, a particular account of necessary truth. He is suggesting, rather, that looking upon certain philosophical claims as grammatical is a way of "deflating" them, stripping them of their appearance of profundity. Neither can grammatical remarks imply substantive philosophical theses. This is why realism, conceived as comprising grammatical remarks, does not imply scepticism, as is often supposed, and is not itself a controversial or exciting doctrine. ;There are of course some controversial formulations of realism, versions which are not simply underwritten by grammar. Thus some philosophers have held that, because the truth conditions of a proposition are essentially independent of any evidence we may have for the proposition, truth may not be accessible at all. I believe, however, that Putnam has shown, by means of an argument which is instructively viewed as a grammatical investigation, that truth is accessible, at least to an "ideal" theory. ;Recent expressions of idealism are argued to provide helpful accounts of language use and understanding, but fail to establish that truth is nothing but warranted assertibility, or that it must in some sense "arise within us." Such a conclusion runs afoul of the grammar of truth, of which realism is shown to provide the proper account. (shrink)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole‐genome sequencing and micro‐array based analysis enable genome‐wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre‐test information and achieving autonomous decision‐making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so‐called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set‐up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set‐up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct‐to‐consumer applications of the new genetics. (shrink)

The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole-genome sequencing and micro-array based analysis enable genome-wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre-test information and achieving autonomous decision-making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) the International Association of Bioethics, these challenges were presented for three different areas in which these so-called ‘new genetics’ technologies are increasingly being applied: newborn screening, prenatal screening strategies and commercial personal genome testing. In this article, we build upon the existing ethical framework for a responsible set-up of testing and screening offers and reinterpret some of its criteria in the light of the new genetics. As we will argue, the scope of a responsible testing or screening offer should align with the purpose(s) of testing and with the principle of respect for autonomy for all stakeholders involved, including (future) children. Informed consent is a prerequisite but requires a new approach. We present preliminary and general directions for an individualized or differentiated set-up of the testing offer and for the informed consent process. With this article we wish to contribute to the formation of new ideas on how to tackle the issues of autonomy and informed consent for (public) healthcare and direct-to-consumer applications of the new genetics. (shrink)

The inauguration of Michigan’s BioTrust for Health, a research biobank for leftover neonatal blood spots, posed several novel questions for the state’s Department of Community Health institutional review board. The IRB’s response to these questions affirmed that respect for persons requires consent from donors for tissue donation to a public health biorepository with a research mission. It also acknowledged that the existence of potential risks and benefits to groups as well as to individuals necessitated new institutional collaborations between the (...) IRB and the appointed community oversight board for the BioTrust to foster consideration of the impacts on all stakeholders. (shrink)

BackgroundThis paper represents a portion of the findings from one of the first research studies eliciting the lived experience of adults with an early diagnosis of Phenylketonuria living in Ireland. Ireland has one of the highest prevalence rates of PKU in Europe, however, little is known about the experience of Irish adults with PKU. Furthermore, Ireland is one of the first countries in the world to introduce neonatal screening followed by the introduction of long-term dietary therapy over 50 (...) years ago. This study presents the first comprehensive assessment of the lived experience of Irish adults with PKU on long term dietary therapy.MethodsNarrative data was collected from eleven self-selected participants, using semi-structured interviews. The interviews were divided into five sections focused on eliciting a holistic understanding of the lived experience of adults with PKU living in Ireland. Thematic analysis was guided by Colaizzi's Framework in conjunction with NVivo qualitative data analysis software.FindingsFindings from the original research encompassed a broad understanding of the lived experience of adults with PKU living in Ireland, including factors influencing dietary therapy and managing PHE blood levels. The themes being discussed within this article are those which appear to be least represented within current literature: living with PKU, including reproductive health, the importance of self-management and establishing routine, support networks in adulthood and concerns regarding aging with PKU.ConclusionIt was evident from the findings that a diagnosis of PKU can influence how adults with PKU may experience aging and their own mortality. These findings offer new insight into the vulnerability attached to the experience of aging with PKU and may be beneficial to advocacy groups and for future development of policy and practice. (shrink)

In The Netherlands, neonatal euthanasia has become a legal option and the Groningen Protocol contains an approach to identify situations in which neonatal euthanasia might be appropriate. In the 5 years following the publication of the protocol, neither the prediction that this would be the first step on a slippery slope, nor the prediction of complete transparency and legal control became true. Instead, we experienced a transformation of the healthcare system after antenatal screening policy became a part (...) of antenatal care. This resulted in increased terminations of pregnancy and less euthanasia. (shrink)

This paper examines one particular justification for the screening and termination of embryos/fetuses which possess genetic features known to cause disability. The particular case is that put forward in several places by John Harris. He argues that the obligation to prevent needless suffering justifies the prevention of the births of disabled neonates. The paper begins by rehearsing Harris's case. Then, drawing upon claims advanced in a recent paper in the Journal of Medical Ethics, it is subjected to critical scrutiny, (...) focusing on Harris's “suffering claim” .1 It is argued that the suffering claim must be false if understood as an empirical claim. And, even if understood as a conceptual truth, it mistakenly assimilates the concepts of harm and suffering. Finally, again focusing on Harris's recent work in this area, his characterisation of disability as a “harmed condition” is shown not to apply in the case of at least some moderate forms of intellectual disability. (shrink)

The Michigan Department of Community Health stores almost 4 million dried blood spot specimens in the Michigan Neonatal Biobank. DBS are collected from newborns under a mandatory public health program to screen for serious conditions. At 24 to 36 hours of age, a few drops of blood are taken from the baby’s heel and placed on a filter paper card. The card is sent to the state public health laboratory for testing. After testing, MDCH retains the spots indefinitely for (...) the personal use of the patient and also, pursuant to a 2000 law, for possible research. (shrink)

The Michigan Department of Community Health stores almost 4 million dried blood spot specimens in the Michigan Neonatal Biobank. DBS are collected from newborns under a mandatory public health program to screen for serious conditions. At 24 to 36 hours of age, a few drops of blood are taken from the baby’s heel and placed on a filter paper card. The card is sent to the state public health laboratory for testing. After testing, MDCH retains the spots indefinitely for (...) the personal use of the patient and also, pursuant to a 2000 law, for possible research. (shrink)

Three-way baby making is not new: genetic surrogacy existed in Biblical times and donor insemination was recorded in Britain over 200 years ago. However, the gift of gametes between women breaks all social conventions. This paper examines the phenomenon of gamete-donation questioning whether a ‘gift’ of such magnitude can ever be ‘free’ (as the Human Fertilisation & Embryology Authority advocates), or a ‘true’ gift (in Derridian terms). Exploration of this unprecedented ‘gift’ from a psychoanalytic approach is supplemented by an interdisciplinary (...) one, drawing on the gift literature in philosophy, anthropology, ethnography and socioeconomics, as well as neonatal research and reproductive medicine. Critics note the dearth of analyses that take seriously the psychological ramifications of contemporary treatments, protocols and expectations in reproductive medicine. Based on psychoanalytic therapy within a clinical practice devoted to reproductive issues, the author argues that institutionalised asexual reproduction alters unconscious conceptualisations of the act of procreation – converting the passionate intimacy of primal scene into a clinical coupling of gametes in a mechanised arena. The author argues that, too charged to contemplate, the gamete's transcendent quality and blurring of elementary personae/res distinctions leads protagonists, including professionals, to defensive commodification. Multiple emotional meanings are ascribed to gifted gametes by each in the triangle of donor, recipient and offspring, illustrated here with verbatim material. This article addresses some of the far-reaching socio-political consequences for class, race, age, gender and sexuality of asexual reproduction, related to selection procedures and uneven global and local distribution of fertility treatment and its cost in financial, physical, practical and emotional terms. Similarly, feminist unease over (patriarchal) reproductive control and gatekeeping policies are considered, as well as ethical concerns over genetic manipulation, pre-implantation screening, sex selection, selective foetocide and potential exploitation of transnational donors and surrogates. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News from the President’s Council on BioethicsF. Daniel Davis (bio) and Diane M. Gianelli (bio)As most readers of this column already know, the President's Council on Bioethics went through a major transition during the past year when Leon Kass—in October 2005—handed the chairman's gavel over to Georgetown University's Edmund Pellegrino. Dr. Kass has remained on the Council as a member.1When the gavel change took place, the Council's phone started (...) ringing. Everyone wanted to know the same thing: What topics would the Council take up this term? Dr. Pellegrino's answer was always the same: The Council's agenda would be established through a consultative process with the members themselves and with an eye to those problems and controversies in bioethics to which we, as a body, can make a contribution.Taking its cue from the list of potential topics suggested by members, the Council—over the course of the next several meetings—listened to experts on such topics as children and bioethics (with a focus on children in clinical research), organ transplantation, and that oft-cited-but-hard-to-define concept, "human dignity."The latter topic entered the arena of discussion because it is a concept that is cited frequently in the bioethics literature, and it is also one that has figured prominently in Council discussions and documents. Although the concept is widely invoked, there is no universal understanding of what it means, and it is not easy to encapsulate into a one-size-fits-all definition. Indeed, some critics maintain that appeals to human dignity are fig leaves used to camouflage unconvincing arguments. So between December 2005 and April 2006, the Council devoted several sessions to various perspectives on "human dignity: its meaning, its foundations, and its relevance to bioethics." After hearing from James Childress, Patricia Churchland, Daniel Sulmasy, and Paul Weithman2 on the topic, the Council decided to issue a volume of approximately 20 essays, some by Council members and others by scholars from a variety of relevant disciplines.3 The volume is expected to encompass a broad array of opinion on the topic of human dignity and is scheduled to be published next spring."Children" were also the focus of several sessions during the past year. The Council's last report addressed care giving for the elderly.4 After it was issued, several members suggested it was time to focus on the youngest members of [End Page 375] society. The challenge, of course, was to find a topic that was both timely and relevant—and one about which the Council was uniquely qualified to make a contribution. A number of experts in a variety of related fields testified before the Council about possible issues it could explore: newborn screening for genetic disorders; decision-making standards for those who lack capacity; ethical issues in neonatal and pediatric intensive care; pharmacology and psychiatric disorders in children; and children and clinical research. In addition, a number of groups and individuals involved in related topics met with staff to discuss their interests and concerns.This exploratory engagement with facets of the broad topic of children and bioethics led the Council to focus, more narrowly, on a cluster of issues concerning newborn screening for genetic disorders—a topic on which it is likely that the Council will issue a white paper, possibly by next summer. The stimulus for this particular focus has been the American College of Medical Genetics's recommendation that all newborns in the U.S. be screened for a panel of 29 disorders.5 Currently, each state decides for its residents which conditions are subject to mandated screening, so it is possible to get early diagnoses of treatable disorders in one geographical area but not in another. Proponents of screening find the federal approach to mandated screening more equitable. Potential ethical problems, however, exist with the proposal. Some want to ensure that newborns are screened only for treatable conditions on grounds that it would be too burdensome to discover one is carrying the gene for a late-onset disease that cannot be prevented. Others want to make sure that insurance coverage for individuals and their families is... (shrink)

The rapidly increasing number of cases of Zika virus and limited understanding of its congenital sequelae (e.g., microcephaly) led to stories of fear and uncertainty across social media and other mass communication networks. In this study, we used techniques generic to netnography, a form of ethnography, using Internet‐based computer‐mediated communications as a source of data to understand the experience and perceptions of families with infants diagnosed with Zika‐related microcephaly. We screened 27 YouTube™ videos published online between October 2015 and July (...) 2016, during which the Zika epidemic started, peaked, and declined. We identified three themes: (a) experiencing the news of a diagnosis of Zika‐associated microcephaly; (b) experiencing feelings and expectations of the ‘imperfect’ child; and (c) seeking to understand microcephaly to care for the child. We found that families experienced distressing feelings of shock, sadness, hopelessness, and pain, while dealing with emerging and sometimes conflicting information being transmitted by news outlets, uncertainty about the child's health, and healthcare providers’ lack of clarity to guide the family members. The ‘unknown’ factor of ZIKA was an additional stressful factor in the experience of the families. (shrink)

A 2017 Nature report was widely touted as hailing the arrival of the artificial womb. But the scientists involved claim their technology is merely an improvement in neonatal care. This raises an under-considered question: what differentiates neonatal incubation from artificial womb technology? Considering the nature of gestation—or metaphysics of pregnancy—(a) identifies more profound differences between fetuses and neonates/babies than their location (in or outside the maternal body) alone: fetuses and neonates have different physiological and physical characteristics; (b) characterizes (...) birth as a physiological, mereological and topological transformation as well as a (morally relevant) change of location; and (c) delivers a clear distinction between neonatal incubation and ectogestation: the former supports neonatal physiology; the latter preserves fetal physiology. This allows a detailed conceptual classification of ectogenetive and ectogestative technologies according to which the 2017 system is not just improved neonatal incubation, but genuine ectogestation. But it is not an artificial womb, which is a term that is better put to rest. The analysis reveals that any ethical discussion involving ectogestation must always involve considerations of possible risks to the mother as well as her autonomy and rights. It also adds a third and potentially important dimension to debates in reproductive ethics: the physiological transition from fetus/gestateling to baby/neonate. (shrink)

The growing support for voluntary active euthanasia is evident in the recently approved Dutch Law on Termination of Life on Request. Indeed, the debate over legalized VAE has increased in European countries, the United States, and many other nations over the last several years. The proponents of VAE argue that when a patient judges that the burdens of living outweigh the benefits, euthanasia can be justified. If some adults suffer to such an extent that VAE is justified, then one may (...) conclude that some children suffer to this extent as well. In an attempt to alleviate the suffering of extremely ill neonates, the University Medical Center Groningen developed a protocol for neonatal euthanasia. In this article, I first present the ethical justifications for VAE and discuss how these arguments relate to euthanizing ill neonates. I then argue that, even if one accepts the justification for VAE in adults, neonatal euthanasia cannot be supported, primarily because physicians and parents can never accurately assess the suffering of children. I argue that without the testament of the patient herself as to the nature and magnitude of her suffering, physicians can never accurately weigh the benefits and burdens of a child’s life, and therefore any such system would condemn to death some children whose suffering is not unbearable. I conclude that because the primary duty of physicians is to never harm their patients, neonatal euthanasia cannot be supported. (shrink)

Neonatal suffering has been the focus of recent debate in pediatric bioethics and suffering theory. How to access and conceptualize the suffering that can be attributed to newborns? How to discern the suffering of newborns who, due to being non-neurotypical, may have a short life and severe neurocognitive disabilities, in addition to being entirely dependent on people or life-sustaining technologies? Phenomenology has provided valuable tools for analysing human experiences of suffering, but its application to the neonatal suffering experience (...) is not without fundamental challenges. In this article, I will consider recent contributions to elucidating the phenomenon of neonatal suffering, especially those in the field of non-experiential theories of suffering. Based on this review, a recent phenomenological approach to suffering will be examined. Explicitly directed toward narrative persons, this approach appears to be inherently limited in elucidating the phenomenon of neonatal pediatric suffering. Nevertheless, a suggestion will be offered to partially elaborate the theoretical foundations of a phenomenological theory of neonatal suffering. This suggestion points to the program of a phenomenology of the existential feelings of newborns. (shrink)

Over 35 years ago, Meltzoff and Moore (1977) published their famous article ‘Imitation of facial and manual gestures by human neonates’. Their central conclusion, that neonates can imitate, was and continues to be controversial. Here we focus on an often neglected aspect of this debate, namely on neonatal spontaneous behaviors themselves. We present a case study of a paradigmatic orofacial ‘gesture’, namely tongue protrusion and retraction (TP/R). Against the background of new research on mammalian aerodigestive development, we ask: How (...) does the human aerodigestive system develop and what role does TP/R play in the neonate’s emerging system of aerodigestion? We show that mammalian aerodigestion develops in two phases: (1) from the onset of isolated orofacial movements in utero to the post-natal mastery of suckling at 4 months after birth, and; (2) thereafter, from preparation to the mastery of mastication and deglutition of solid foods. Like other orofacial stereotypies, TP/R emerges in the first phase and vanishes prior to the second. Based upon recent advances in activity-driven early neural development, we suggest a sequence of three developmental events in which TP/R might participate: the acquisition of tongue control, the integration of the central pattern generator for TP/R with other aerodigestive CPGs, and the formation of connections within the cortical maps of S1 and M1. If correct, orofacial stereotypies are crucial to the maturation of aerodigestion in the neonatal period but also unlikely to co-occur with imitative behavior. (shrink)

Until the 1970s, models of early infancy tended to depict the young child as internally preoccupied and incapable of processing visual-tactile data from the external world. Meltzoff and Moore's groundbreaking studies of neonatal imitation disprove this characterization of early life: They suggest that the infant is cognizant of its external environment and is able to control its own body. Taking up these experiments, theorists argue that neonatal imitation provides an empirical justification for the existence of an innate ability (...) to engage in social communication. Since later imitation is taken as a benchmark for self- and other-awareness, theorists claim that a proto- or primitive self must exist in the infant. This paper takes up the issue of whether or not neonatal imitation does provide us with a ground to argue against developmental accounts that consider self-awareness to be a later acquisition. I argue that the enthusiasm over neonatal imitation is premature. Psychological studies that claim to prove neonatal imitation do not provide sufficient grounds for dismissing alternate philosophical and psychological theories about the self as being a post-birth "event" rather than an intrinsic condition. Therefore, I argue that there is no compelling reason to suppose that we come to the world with a primitive sense of self- or other-awareness. (shrink)

This article questions social constructionists' claims to introduce Wittgenstein's philosophy to psychology. The philosophical fiction of a neonate Crusoe is introduced to cast doubt on the interpretations and use of the private language argument to support a new psychology developed by the constructionists. It is argued that a neonate Crusoe's viability in philosophy and apparent absence in psychology offends against the integrity of the philosophical contribution Wittgenstein might make to psychology. The consequences of accepting Crusoe's viability are explored as they (...) appear in both philosophy and psychology. (shrink)

Recientemente fue desechada una reforma en la Ley General de Salud cuyo fin era el de hacer obligatorio en todo el país el tamiz neonatal ampliado. Fue evidente el desconocimiento de la responsabilidad que tiene el Estado mexicano con la niñez, debido al interés superior de la misma y de conformidad con la Constitución y con los tratados internacionales en materia de derechos humanos, así como la responsabilidad internacional en este tema de salud y específicamente en este grupo poblacional (...) sobre la prevención y progresividad hacia el logro de un actuar ético indiscutible en donde la beneficencia y la equidad social son necesarias. (shrink)

Prenatal screening for foetal abnormalities such as Down's syndrome differs from other forms of population screening in that the usual aim of achieving health gains through treatment or prevention does not seem to apply. This type of screening leads to no other options but the choice between continuing or terminating the pregnancy and can only be morally justified if its aim is to provide meaningful options for reproductive choice to pregnant women and their partners. However, this aim (...) should not be understood as maximizing reproductive choice per se. Only if understood as allowing prospective parents to avoid suffering related to living with (a child with) serious disorders and handicaps can prenatal screening be a publicly or collectively funded programme. The alternative of moving prenatal testing outside the healthcare system into the private sector is problematic, as it makes these tests accessible only to those who can afford to pay for it. New developments in prenatal screening will have to be assessed in terms of whether and to what extent they either contribute to or undermine the stated aim of providing meaningful options for reproductive choice. In the light of this criterion, this article discusses the introduction of the new non‐invasive prenatal test (NIPT), the tendency to widen the scope of follow‐up testing, as well as the possible future scenarios of genome‐wide screening and ‘prenatal personalised medicine’. The article ends with recommendations for further debate, research and analysis. (shrink)

Active ending of the life of a newborn baby is a crime. Yet its clandestine practise is a reality in several European countries. In this paper, we defend the necessity to institute a proper legal frame for what we define as active neonatal euthanasia. The only legal attempt so far, the Dutch Groningen protocol, is not satisfactory. We critically analyse this protocol, as well as several other clinical practises and philosophical stances. Furthermore, we have tried to integrate our opinions (...) as clinicians into a law project, with the purpose of pinpointing several issues, specific of perinatality that should be addressed by such a law. In conclusion, we argue that the legalisation of neonatal euthanasia under exceptional circumstances is the only way to avoid all the “well-intentioned” malpractices associated with ending life at the very dawn of it. (shrink)

The religious justification for male circumcision proffered by Jewish and Islamic parents is frequently overlooked in current secular (medical/hygienic) discussions that (1) challenge the moral justification of this ancient practice, and (2) question the decisions of today's parents who are committed, on the basis of their religious beliefs, to continue this practice. This paper reviews critically these conflicting values and arguments and calls for compromise in the face of potential state intervention to coerce parents to abandon this practice. Keywords: disease (...) prevention, medicalization, mutilation, religious values, routine neonatal circumcision, therapeutic state CiteULike Connotea Del.icio.us What's this? (shrink)

Background:Neonatal nurse practitioners have become the frontline staff exposed to a myriad of ethical issues that arise in the day-to-day environment of the neonatal intensive care unit. However, ethics competency at the time of graduation and after years of practice has not been described.Research aim:To examine the ethics knowledge base of neonatal nurse practitioners as this knowledge relates to decision making in the neonatal intensive care unit and to determine whether this knowledge is reflected in attitudes (...) toward ethical dilemmas in the neonatal intensive care unit.Research design:This was a prospective cohort study that examined decision making at the threshold of viability, life-sustaining therapies for sick neonates, and a ranking of the five most impactful ethical issues.Participants and research context:All 47 neonatal nurse practitioners who had an active license in the State of Mississippi were contacted via e-mail. Surveys were completed online using Survey Monkey software.Ethical considerations:The study was approved by the University of Mississippi Medical Center Institutional Review Board (IRB; #2015-0189).Findings:Of the neonatal nurse practitioners who completed the survey, 87.5% stated that their religious practices affected their ethical decision making and 76% felt that decisions regarding life-sustaining treatment for a neonate should not involve consultation with the hospital’s legal team or risk management. Only 11% indicated that the consent process involved patient understanding of possible procedures. Participating in the continuation or escalation of care for infants at the threshold of viability was the top ethical issue encountered by neonatal nurse practitioners.Discussion:Our findings reflect deficiencies in the neonatal nurse practitioner knowledge base concerning ethical decision making, informed consent/permission, and the continuation/escalation of care.Conclusion:In addition to continuing education highlighting ethics concepts, exploring the influence of religion in making decisions and knowing the most prominent dilemmas faced by neonatal nurse practitioners in the neonatal intensive care unit may lead to insights into potential solutions. (shrink)

In The Flesh of Images, Mauro Carbone analyzed Merleau-Ponty's interest in film as it relates to his aesthetic theory. Philosophy-Screens broadens the work undertaken in this earlier book, looking at the ideas of other twentieth-century thinkers concerning the relationship between philosophy and film, and also extending that analysis to address the wider proliferation of screens in the twenty-first century. In the first part of the book, Carbone examines the ways that Sartre, Merleau-Ponty, Lyotard, and Deleuze grappled with the philosophical significance (...) of cinema as a novel aesthetic medium unfolding in the twentieth century. He then considers the significance of this philosophical framework for understanding the digital revolution, in particular the extent to we are increasingly and comprehensively connected with screens. Smart phones, tablets, and computers have become a primary referential optical apparatus for everyday life in ways that influence the experience not only of seeing but also of thinking and desiring. Carbone's Philosophy-Screens follows Deleuze's call for "a philosophy-cinema" that can account for these fundamental changes in perception and aesthetic production, and adapts it to twenty-first century concerns. (shrink)

Prenatal screening for foetal abnormalities such as Down's syndrome differs from other forms of population screening in that the usual aim of achieving health gains through treatment or prevention does not seem to apply. This type of screening leads to no other options but the choice between continuing or terminating the pregnancy and can only be morally justified if its aim is to provide meaningful options for reproductive choice to pregnant women and their partners. However, this aim (...) should not be understood as maximizing reproductive choice per se. Only if understood as allowing prospective parents to avoid suffering related to living with serious disorders and handicaps can prenatal screening be a publicly or collectively funded programme. The alternative of moving prenatal testing outside the healthcare system into the private sector is problematic, as it makes these tests accessible only to those who can afford to pay for it. New developments in prenatal screening will have to be assessed in terms of whether and to what extent they either contribute to or undermine the stated aim of providing meaningful options for reproductive choice. In the light of this criterion, this article discusses the introduction of the new non-invasive prenatal test , the tendency to widen the scope of follow-up testing, as well as the possible future scenarios of genome-wide screening and ‘prenatal personalised medicine’. The article ends with recommendations for further debate, research and analysis. (shrink)

One barrier to optimal pain management in the neonatal intensive care unit is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are vulnerable to pain and harm, and completely dependent on (...) others for pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

_Neonatal Bioethics: A Complicated Decisión_ _Bioética neonatal: uma decisão complicada_ _Carta al editor / Letter to the editor / Carta ao editor_ _Para citar esta carta / To reference this letter / Para citar esta carta _ Dussán-Rojas LV, Chacón-Pedraza SA. Bioética neonatal: una decisión complicada. Pers Bioet. 2019; 23: 140-141. DOI: https://doi.org/10.5294/pebi.2019.23.1.10.

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

The emergence of new obstetrical and neonatal technologies, as well as more aggressive clinical management, has significantly improved the survival of extremely low birth weight infants. This development has heightened concerns about the limits of viability. ELBW infants, weighing less than 1,000 grams and no larger than the palm of one's hand, are often described as of late twentieth century technology. Improved survivability of ELBW infants has provided opportunities for long-term follow-up. Information on their physical and emotional development contributes (...) to developing standards of practice regarding their care. (shrink)

Edgar Page; XI*—Neonates, Persons and the Right to Life, Proceedings of the Aristotelian Society, Volume 89, Issue 1, 1 June 1989, Pages 165–178, https://doi.or.

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

Despite tremendous advances in medical care for critically ill newborn infants, caregivers in neonatal intensive care units still struggle with how to approach those patients whose prognoses appear to be the most grim, and whose treatments appear to be the most futile. Although the practice of passive neonatal euthanasia, from a moral perspective, has been widely condoned, those clinicians and families involved in such cases may still be found legally guilty of child abuse or even manslaughter. Passive (...) class='Hi'>neonatal euthanasia remains both a moral dilemma and a legal ambiguity. Even the definition of passive euthanasia remains unclear. This manuscript reviews the basic moral and legal considerations raised by the current practice of neonatal euthanasia, and examines the formal position statements of the American Medical Association and the American Academy of Pediatrics. The paper concludes by emphasising the need, at least in the United States, to clarify the legal status of this relatively common medical practice. (shrink)

During the past decade, screening tests using computed tomography have disseminated into practice and been marketed to patients despite neither conclusive evidence nor professional agreement about their efficacy and cost-effectiveness at the population level. This phenomenon raises questions about physicians' professional roles and responsibilities within the setting of medical innovation, as well as the appropriate scope of patient autonomy and access to unproven screening technology. This article explores how physicians ought to respond when new screening examinations that (...) lack conclusive evidence of overall population benefit emerge in the marketplace and are requested by individual patients. To this end, the article considers the nature of evidence and how it influences decision-making for screening at both the public policy and individual patient levels. We distinguish medical and ethical differences between screening recommended for a population and screening considered on an individual patient basis. Finally, we discuss specific cases to explore how evidence, patient risk factors and preferences, and physician judgment ought to balance when making individual patient screening decisions. (shrink)

Neonatal pediatrics has made stunning and completely unprecedented progress in recent years. Nonetheless, an increasing number of voices now ask, Where is this field of medicine going? Is it, dare one ask, even headed in the right direction? These are reasonable questions, but first we need to know where this subspecialty of pediatrics has been. The current phenomenon is all the more remarkable because it differs so completely from the past.

A historical and theoretical investigation of the unexpected ways screen-based media protect and excite viewers' fears and anxieties of the worldIn this brilliant contribution to contemporary media studies, acclaimed theorist Francesco Casetti advances a provocative hypothesis: instead of being prostheses that expand or extend our perceptions, modern screen-based media are in fact apparatuses that shelter and protect us from exposure to the world. Rather than bringing us closer to external reality, dominant forms of visual media function as barriers or enclosures (...) that defend against the apparent threats and dangers that seem increasingly to surround us. Working with an original historical overview that begins with the Phantasmagoria of the late eighteenth century, then the shared interior spaces of the movie theater in the early to mid-twentieth century, and finally the solitary digital milieus of the present, Casetti traces the outlines of the protective "bubbles" that disconnect us from our immediate surroundings. To be provided with a shield of immunity to the hazards and uncertainties of the world while experiencing them at a safe remove might seem a positive development. But, he asks, what if these media, instead of providing invulnerability, ensnare individuals in a suffocating enclosure? What if, in their effort to keep reality under control, they exercise a violence equal to that of the dangers they resist? In a dialectical exercise, and through a vivid range of cultural artifacts, Screening Fears traces the emergence of modern protective media and the way they changed our forms of mediation with the world in which we live. (shrink)

The way we communicate with each other is vital to preserving the cultural ecology, or wellbeing, of a place and time. Do we listen to each other? Do we ask the right questions? Do we speak about each other with respect or disdain? The stories that we convey on screens, or what author Carl Plantinga calls 'screen stories,' are one powerful and pervasive means by which we communicate with each other. Screen Stories: Emotion and the Ethics of Engagement argues that (...) film and media studies needs to move toward an an approach to ethics that is more appropriate for mass consumer culture and the lives of its citizens. Primarily concerned with the relationship between media and viewers, this book considers ethical criticism and the emotional power of screen stories that makes such criticism necessary. The content we consume-- from television shows and movies to advertisements-- can significantly affect our welfare on a personal and societal level, and thus, this content is subject to praise and celebration, or questioning and even condemnation. The types of screen stories that circulate contribute to the cultural ecology of a time and place; through shared attention they influence what individuals think and feel. Plantinga develops a theory of the power of screen stories to affect both individuals and cultures, asserting that we can better respond ethically to such media if we understand the sources of its influence on us. (shrink)