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)

Objects: With the advent of genetic technologies, many genetic/metabolic disorders can be detected asymptomatically but might be untreatable, and the benefits and risks of screening for them are not fully known. The purpose of this study is to explore current practice with regard to the parental consent process in newborn screening .Design: Staff in 23 obstetric clinics/hospitals that conduct NBS in one city of southern Taiwan were interviewed. Using content analysis, 15 interview transcripts, eight completed questionnaires, and other relevant (...) documents from the 23 clinics/hospitals were analysed to reveal the framework of the parental consent process in NBS in southern Taiwan.Main measures: Three categories—informed consent, informed dissent, and no informed/consent—were developed to analyse the parental consent process in NBS.Results: The parental consent procedures in NBS and the quality of the information provided before obtaining consent vary widely. Because the traditional NBS was incorporated into routine paediatric practices in most clinics/hospitals, the most frequently encountered consent model is “informed dissent” and “no informed/consent” ; while an “informed consent” model is the frequent model for screening rare metabolic/genetic disorders.Conclusions: Specific guidelines to regulate the parental consent process for NBS are essential. Further studies should investigate parental responses to NBS, taking these as the basis on which to establish an informed consent model in Taiwan. (shrink)

The same research proposal was submitted to 24 district health authority (DHA) research ethics committees in different parts of the country. The objective was to obtain permission for a multi-centre research project. The study of neonatal care in different types of unit (regional, subregional and district), required that four health authorities were approached in each of six widely separated health regions in England. Data were collected and compared concerning aspects of processing, including application forms, information required, timing and decision-making. The (...) key finding was that ethics committees received and processed the applications variably, reflecting individual factors and local problems. To improve consensus and facilitate multicentre studies, standard forms and instructions are suggested and the establishment of a national committee or advisory group advocated. (shrink)

Introduction In 2007, a national review committee was instituted in The Netherlands to review cases of active ending of life for newborns. It was expected that 15–20 cases would be reported. To date, however, only one case has been reported to this committee. Reporting is essential to obtain societal control and transparency; the possible explanations for this lack of reporting were therefore explored. Methods Data on end-of-life decision-making were scrutinised from Dutch nation-wide studies (1995, 2001 and 2005), before institution of (...) the committee. Physicians received a questionnaire about their medical decision-making for stratified samples of deceased infants up to 1 year, drawn from the central death registry. Results In 2005, 58% of all deaths were preceded by an end-of-life decision, compared with 68% in 2001 and 62% in 1995. The use of drugs with a possible life-shortening effect tended to be lower. In 2005, all four cases in the study in which an infants' life was actively ended were preceded by a decision to forego life-prolonging treatment. In three cases, the infant's life expectancy was short; one case involved a longer life expectancy. Discussion The expected number of cases is probably an overestimation due to changes in medical practice such as the tendency to attribute less life-shortening effects to opioids. The lack of reports is probably also associated with requirements in the regulation; it may be difficult to fulfil them due either to time constraints or the nature of the suffering that is addressed. If societal control of active ending of life is considered useful, changes in the regulation may be needed. (shrink)

Now widely adopted, SCID newborn screening has proven effective for early identification and treatment of SCID. In addition, screening has improved our understanding of SCID and related disorders, which are more diverse than originally believed. Newborn screening for SCID illustrates how adding new disorders to newborn screening panels can be enormously beneficial if evidence‐based guidelines are adhered to and if mechanisms are in place to track outcomes and learn along the way. These lessons should guide all additions (...) to newborn screening, including those involving sequencing. (shrink)

Massively parallel sequencing, also known as next‐generation sequencing, has the potential to significantly improve newborn screening programs in the United States and around the world. Compared to genetic tests whose use is well established, sequencing allows for the analysis of large amounts of DNA, providing more comprehensive and rapid results at a lower cost. It is already being used in limited ways by some public health newborn screening laboratories in the United States and other countries—and it is under (...) study for broader and more widespread use, including as a core part of newborn screening programs. Sequencing technology has the potential to significantly improve these essential public health programs. For many of the conditions that newborns are already screened for, sequencing can return more specific and more sensitive results. The technology could also enable newborn screening programs to expand the list of rare pediatric conditions that they look for, thereby identifying more infants who can benefit from immediate care. (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 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)

The idea of “postponed withholding,” proposed by Syltern et al. (2022), is a provocative one, and like all good provocative ideas, provokes deeper thinking from fresh perspectives. Our attention wa...

Allowing relatively inexperienced physicians-in-training to perform invasive medical procedures is a widely accepted practice, generally felt to be justified by the need to train future generations of physicians. The ethical justification of this practice, however, is rarely if ever explored in any depth. This essay examines the moral issues associated with this practice, in the setting of a specific clinical scenario involving the emergency intubation of a critically ill newborn. The practice is ultimately shown to be justified based not (...) only on the needs of society and future patients but also on the best interests of the patient being treated. However, several important qualifications need to be satisfied in order for this practice to be ethically permissible. The arguments and qualifications presented can be extended to clinical situations beyond the specific scenario discussed and are relevant to a wide range of medical and surgical settings. (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)

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

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

The standard approach to parental refusal of transfusion on religious grounds in many newborn intensive care units and paediatric services is to override the refusal and provide the transfusion, usually with court intervention if time allows. This approach is justified by the child's right to effective treatment, seen to outweigh the parents' right to religious freedom and their right to decide for their child. That justification, however, may be limited by the predicted effectiveness of the transfusion (or any proposed (...) treatment) in preventing significant harm to the child. A case where parental refusal was appropriately respected is briefly discussed. (shrink)

What role does experience play in the development of face recognition? A growing body of evidence indicates that newborn brains need slowly changing visual experiences to develop accurate visual recognition abilities. All of the work supporting this “slowness constraint” on visual development comes from studies testing basic‐level object recognition. Here, we present the results of controlled‐rearing experiments that provide evidence for a slowness constraint on the development of face recognition, a prototypical subordinate‐level object recognition task. We found that (1) (...) newborn chicks can rapidly develop view‐invariant face recognition and (2) the development of this ability relies on experience with slowly moving faces. When chicks were reared with quickly moving faces, they built distorted face representations that largely lacked invariance to viewpoint changes, effectively “breaking” their face recognition abilities. These results provide causal evidence that slowly changing visual experiences play a critical role in the development of face recognition, akin to basic‐level object recognition. Thus, face recognition is not a hardwired property of vision but is learned rapidly as the visual system adapts to the temporal structure of the animal's visual environment. (shrink)

Newborn screening involves a complex logistical process, which depends on the close cooperation of many professionals, such as midwives, laboratory technicians, general practitioners and pediatricians. These professionals may encounter moral problems in the process, which have not been systematically studied before. This study fills this gap. We conducted interviews with 36 professionals involved in NBS in the Netherlands and made an inventory of the moral problems they encounter, as well as of the ways in which they tend to respond (...) to them. The moral problems professionals encounter stem from interpersonal conflicts and intrapersonal conflicts. Given the complexity of the work of NBS professionals, the study suggests that the moral problems that occur on the work floor cannot easily be solved by means of offering better or more stringent policy guidelines. Rather, it should be appreciated that professionals contribute significantly to shaping the morality of NBS with the help of their daily choices, and they should be supported in carrying out this task—for example with the help of a moral training or regular multidisciplinary moral deliberation, facilitated by an ethicist. (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...

In 1993, debates over mandatory HIV testing reemerged in New York when politicians and journalists launched a compaign to “unblind” results of a survey of HIV prevalence in newborns. This article reports on the findings from a content analysis of 108 “Baby AIDS” news stories published in New York newspapers in 1993 and 1994. In constructing a discourse of blame for the infection of “innocent” babies, “Baby AIDS” news stories demonstrate that racist, heterosexist, and sexist assumptions about HIV transmission, motherhood, (...) and public HIV surveillance are fundamentally intertwined. The article concludes that arguments by AIDS analysts that homophobia and racism are distinct and independent dimensions of policy and popular understandings of HIV are not only misguided but also dangerous. (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.

The experience of newborn screening for Krabbe disease in New York State demonstrates the ethical problems that arise when screening programs are expanded in the absence of true understanding of the diseases involved. In its 5 years of testing and millions of dollars in costs, there have been very few benefits, and the testing has uncovered potential cases of late-onset disease that raise difficult ethical questions in their own right. For these reasons, we argue that Krabbe screening should only (...) be continued as a research project that includes the informed consent of parents to the testing. (shrink)

This commentary examines twelve stories in which parents recount how they (and often their co-parent) decided whether or not to circumcise their newborn sons. Several debated whether this should be their decision to make. The stories offer an intimate glimpse into people's efforts to do the best for children in a context of incomplete and changing information and intense public controversy. The commentary explores the diverse meanings and contradictory commonsense beliefs that surround foreskin removal in the United States today. (...) Considering these parents' reflections—and their silences—can help us appreciate the real-life consequences of debates about the ethics of male circumcision. (shrink)

This book uses an incidence approach to look at the economic repercussions of birth defects. The authors investigate eighteen of the most clinically significant birth defects affecting 35,000 newborns each year in our country. Their assessments suggest that the annual cost of these eighteen birth defects, together, is more than eight billion dollars . The authors describe in detail their methodology and data sources while providing thorough accounts of each of the eighteen birth defects. Waitzman, Scheffler, and Romano break new (...) ground by using reports from the California Birth Defects Monitoring Program in order to provide cost estimates. They illustrate to the reader how cost estimates of specific birth defects can be used to justify prevention interventions and strategies. In chapter seven, they provide an important example, showing cost-benefit analysis of a program of folate supplementation of food to prevent neutral tube defects. Contents: List of Tables; Preface; Acknowledgements; Introduction; The Application of Cost-of-Illness Methodology To Birth Defects; The Direct Medical Costs of Birth Defects; Nonmedical Direct Costs of Birth Defects: Developmental Services and Special Education; The Indirect Costs of Birth Defects; Premature Mortality and Heightened Morbidity; An Assessment of Total Costs and Policy Implications; Description of Birth Defects; Description of Major Data Sources; Index. (shrink)

In a recent Article Carla Kary attempts to show that there should be a significant moral difference between instances of killing and letting die. I shall maintain in Section I that Kary's argument is somewhat weakened by the failure to note an important ambiguity in the notion of killing a person. I shall also argue in Section II that a similar ambiguity affects the notion of letting someone die, and that the failure to note this latter ambiguity also weakens the (...) position developed by Robert Coburn with regard to defective newborns. CiteULike Connotea Del.icio.us What's this? (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News from the President’s Council on BioethicsDiane M. Gianelli (bio) and F. Daniel Davis (bio)Although the President's Council has moved into several new areas of interest during the past year, it also has devoted considerable effort to finalizing several upcoming reports and white papers. In early 2008, the Council will publish a collection of essays on human dignity and bioethics, a report on organ transplantation, and a white paper (...) on "brain death."The Council's report on organ transplantation—now near the end of the drafting and editing phases—has the public as its main audience and, as such, seeks to promote greater understanding of the ethical issues in organ procurement, allocation, and transplantation. The report situates these issues within the contexts of the history of transplantation, the clinical realities of this therapeutic modality, and the current policy framework of state and federal law and regulation.The Council is aware that other bodies—such as the Institute of Medicine—have, in recent years, produced excellent reports on transplantation. The Council's report, however, has a different focus. It explores such foundational issues as the meaning and experience of human embodiment, the philosophy of giving and receiving, and transplantation in relation to the ends and aims of medicine.The report also analyzes the ethics of deceased organ donation, living organ donation, organ allocation, and various proposals for increasing the supply of organs, with a focus on those that call for the replacement of the organ-as-gift philosophy with a market-oriented ethic of selling and buying.In another upcoming publication, the Council revisits the notion of "brain death." The Council did not plan to take on this issue when it began its organ transplantation project. But when researching material for that report, it became clear that—in recent years—some serious criticisms of the neurological standard for declaring death have arisen. Since the vast majority of organs procured from the dead come from "brain dead" patients—that is, those declared dead by the neurological standard—this presented an issue ripe for exploration.The last time a national bioethics body looked at the criteria for determining death was in 1981, when The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research issued "Defining Death," its seminal report that articulated and defended the neurological standard for declaring death. It also proposed a uniform statute for states to adopt based [End Page 397] on that standard. After its publication, states that had not already rewritten their laws to recognize the new neurological standard did so. The Council's white paper on the topic takes a new look at "brain death" in light of the recent evidence and arguments on both sides of the issue.In the Council's last report to the Kennedy Institute of Ethics Journal (December 2006), its upcoming volume on "Dignity" was described. Scholars from a variety of disciplines—and opinions—have written essays on "dignity and bioethics." The volume is ready to go to press.In addition to these documents, the Council, after devoting a number of sessions to the topic over the past couple of years, is considering publication of a white paper on newborn screening, with a probable focus on the benefits, harms, and burdens of mandated screening, and a look at the broader human significance of genetic information. The paper probably also will address the moral precepts that should guide such testing, as well as the precepts that should guide the acquisition and use of the genetic information gained through this process.Venturing into new territory this year, the Council heard from several speakers on "the healing professions" and "the ethical foundations of health care." Both of these topics are the subject of considerable attention and debate in the ethics literature. There is some concern, for example, that medicine and the other healing professions have lost—or are in danger of losing—their moral bearings. And in the controversies surrounding health care reform policies, what is at stake ethically often is obscured, confused, or lacking altogether.Under the rubric of "the professions," the Council heard various dimensions of the issue: the "crisis" in the ethics... (shrink)

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

Breaking bad news (BBN) to parents whose newborn has a major disease is an ethical dilemma. In Saudi Arabia, BBN about newborns is performed according to the parental preferences that have been reported from non-Arabic/non-Islamic countries. Saudi mothers' preferences about BBN have not yet been studied. Therefore, we aimed to elicit the preferences of Saudi mothers about BBN concerning newborns. We selected a convenience sample of 402 Saudi mothers, aged 18-50 years, who had no previous experience with BBN. We (...) selected them via a simple number-randomization scheme from the premises of a level III Saudi hospital between October of 2009 and January of 2011. We used a hypothetical situation (BBN about trisomy 21) to elicit their preferences about BBN concerning newborns via a structured verbal questionnaire composed of 12 multiple-choice questions. We expressed their preferences as percentages (95% confidence interval), and we used the Kendall's W test (W) to assess the degree of agreement in preferences. The Saudi mothers preferred that BBN be conducted with both parents together (64% [60-69]), albeit with weak levels of agreement (W = 0.29). They showed moderate agreement in their preferences that BBN should be conducted early (79% [75-83], W = 0.48), in detail (81% [77-85], W = 0.52), in person (88% [85-91], W = 0.58), and in a quiet setting (86% [83-90], W = 0.53). With extremely weak agreement, they preferred to have a known person present for support during BBN (56% [51-61], W = 0.01), to have close bodily contact with their babies (66% [61-70], W = 0.10), and to have no another patients present (64% [59-68], W = 0.08). They showed moderate levels of agreement in their desires to detail, in advance, their preferences about process of BBN by giving a reversible, written informed consent that could be utilized for guidance, if needed (80% [76-84], W = 0.36). In our experience, Saudi mothers' preferences about BBN concerning newborns are varied, suggesting that a "one-size-fits-all" approach is inappropriate. A reversible, written informed consent detailing their preferences about BBN that would be kept in their medical records and utilized for guidance, if needed, may be the best solution, given this level of diversity. These findings merit further study. (shrink)

Hom and colleagues (2016) argue in favor of allowing religious exemptions to congenital critical heart disease (CCHD) newborn screening, but the logic of their position is at odds with the moral ju...

BackgroundPhysical activity is known to improve mental health, and is regarded as safe and desirable for uncomplicated pregnancy. In this novel study, we aim to evaluate whether there are associations between maternal physical activity during pregnancy and neonatal brain cortical development.MethodsForty-four mother/newborn dyads were included in this longitudinal study. Healthy pregnant women were recruited and their physical activity throughout pregnancy were documented using accelerometers worn for 3–7 days for each of the 6 time points at 4–10, ∼12, ∼18, ∼24, (...) ∼30, and ∼36 weeks of pregnancy. Average daily total steps and daily total activity count as well as daily minutes spent in sedentary/light/moderate/vigorous activity modes were extracted from the accelerometers for each time point. At ∼2 weeks of postnatal age, their newborns underwent an MRI examination of the brain without sedation, and 3D T1-weighted brain structural images were post-processed by the iBEAT2.0 software utilizing advanced deep learning approaches. Cortical surface maps were reconstructed from the segmented brain images and parcellated to 34 regions in each brain hemisphere, and mean cortical thickness for each region was computed for partial correlation analyses with physical activity measures, with appropriate multiple comparison corrections and potential confounders controlled.ResultsAt 4–10 weeks of pregnancy, mother’s daily total activity count positively correlated (FDR corrected P ≤ 0.05) with newborn’s cortical thickness in the left caudal middle frontal gyrus (rho = 0.48, P = 0.04), right medial orbital frontal gyrus (rho = 0.48, P = 0.04), and right transverse temporal gyrus (rho = 0.48, P = 0.04); mother’s daily time in moderate activity mode positively correlated with newborn’s cortical thickness in the right transverse temporal gyrus (rho = 0.53, P = 0.03). At ∼24 weeks of pregnancy, mother’s daily total activity count positively correlated (FDR corrected P ≤ 0.05) with newborn’s cortical thickness in the left (rho = 0.56, P = 0.02) and right isthmus cingulate gyrus (rho = 0.50, P = 0.05).ConclusionWe identified significant relationships between physical activity in healthy pregnant women during the 1st and 2nd trimester and brain cortical development in newborns. Higher maternal physical activity level is associated with greater neonatal brain cortical thickness, presumably indicating better cortical development. (shrink)

BackgroundResuscitation and treatment of critically ill newborn infants is associated with relatively high mortality, morbidity and cost. Guidelines relating to resuscitation have traditionally focused on the best interests of infants. There are, however, limited resources available in the neonatal intensive care unit, meaning that difficult decisions sometimes need to be made. This study explores the intuitions of lay people regarding resource allocation decisions in the NICU.MethodsThe study design was a cross-sectional quantitative survey, consisting of 20 hypothetical rationing scenarios. There (...) were 119 respondents who entered the questionnaire, and 109 who completed it. The respondents were adult US and Indian participants of the online crowdsourcing platform Mechanical Turk. Respondents were asked to decide which of two infants to treat in a situation of scarce resources. Demographic characteristics, personality traits and political views were recorded. Respondents were also asked to respond to a widely cited thought experiment involving rationing.ResultsThe majority of respondents, in all except one scenario, chose the utilitarian option of directing treatment to the infant with the higher chance of survival, higher life expectancy, less severe disability, and less expensive treatment. As discrepancy between outcomes decreased, however, there was a statistically significant increase in egalitarian responses and decrease in utilitarian responses in scenarios involving chance of survival, life expectancy, and cost of treatment. In the classic ‘lifeboat’ scenario, all but two respondents were utilitarian.ConclusionsThis survey suggests that in situations of scarcity and equal clinical need, non-health professionals support rationing of life-saving treatment based on probability of survival, duration of survival, cost of treatment or quality of life. However, where the difference in prognosis or cost is very small, non-health professionals preferred to give infants an equal chance of receiving treatment. (shrink)

How do newborns learn to recognize objects? According to temporal learning models in computational neuroscience, the brain constructs object representations by extracting smoothly changing features from the environment. To date, however, it is unknown whether newborns depend on smoothly changing features to build invariant object representations. Here, we used an automated controlled-rearing method to examine whether visual experience with smoothly changing features facilitates the development of view-invariant object recognition in a newborn animal model—the domestic chick. When newborn chicks (...) were reared with a virtual object that moved smoothly over time, the chicks created view-invariant representations that were selective for object identity and tolerant to viewpoint changes. Conversely, when newborn chicks were reared with a temporally non-smooth object, the chicks developed less selectivity for identity features and less tolerance to viewpoint changes. These results provide evidence for a “smoothness constraint” on the development of invariant object recognition and indicate that newborns leverage the temporal smoothness of natural visual environments to build abstract mental models of objects. (shrink)

BackgroundThe increased risk of developing attention-deficit hyperactivity disorder (ADHD) in extremely preterm infants is well-documented. Better understanding of perinatal risk factors, particularly those that are modifiable, can inform prevention efforts.MethodsWe examined data from the Extremely Low Gestational Age Newborns (ELGAN) Study. Participants were screened for ADHD at age 10 with the Child Symptom Inventory-4 (N = 734) and assessed at age 15 with a structured diagnostic interview (MINI-KID) to evaluate for the diagnosis of ADHD (N = 575). We studied associations (...) of pre-pregnancy maternal body mass index (BMI), pregestational and/or gestational diabetes, maternal smoking during pregnancy (MSDP), and hypertensive disorders of pregnancy (HDP) with 10-year and 15-year ADHD outcomes. Relative risks were calculated using Poisson regression models with robust error variance, adjusted for maternal age, maternal educational status, use of food stamps, public insurance status, marital status at birth, and family history of ADHD. We defined ADHD as a positive screen on the CSI-4 at age 10 and/or meeting DSM-5 criteria at age 15 on the MINI-KID. We evaluated the robustness of the associations to broadening or restricting the definition of ADHD. We limited the analysis to individuals with IQ ≥ 70 to decrease confounding by cognitive functioning. We evaluated interactions between maternal BMI and diabetes status. We assessed for mediation of risk increase by alterations in inflammatory or neurotrophic protein levels in the first week of life.ResultsElevated maternal BMI and maternal diabetes were each associated with a 55–65% increase in risk of ADHD, with evidence of both additive and multiplicative interactions between the two exposures. MSDP and HDP were not associated with the risk of ADHD outcomes. There was some evidence for association of ADHD outcomes with high levels of inflammatory proteins or moderate levels of neurotrophic proteins, but there was no evidence that these mediated the risk associated with maternal BMI or diabetes.ConclusionContrary to previous population-based studies, MSDP and HDP did not predict ADHD outcomes in this extremely preterm cohort, but elevated maternal pre-pregnancy BMI, maternal diabetes, and perinatal inflammatory markers were associated with increased risk of ADHD at age 10 and/or 15, with positive interaction between pre-pregnancy BMI and maternal diabetes. (shrink)

In this book, Kuhse and Singer consider the moral problems which arise in decisions about the treatment or non-treatment of severely handicapped newborns. Their main conclusion is that some of these infants should be killed.

This essay is composed of five stories written by practicing physicians about their patients. Each clinical story describes a challenging ethical condition–potential abuse of medical power, gravely ill and probably over-treated newborns, iatrogenic narcotic addiction, deceived dying people. Rather than singling out one ethical conflict to resolve or adjudicate, the authors attempt, through literary methods, to grasp the singular experiences of their patients and to act according to the deep structures of their patients' lives. Examining these five stories with simple (...) literary tools–attention to narrative frames, time, plot, and desire–reveals the mechanisms through which acts of writing and reading contribute to clinical clarity and ethical actions. (shrink)

The mammary gland is a skin gland unique to the class Mammalia. Despite a growing molecular and histological understanding of the development and physiology of the mammary gland, its functional and morphological origins have remained speculative. Numerous theories on the origin of the mammary gland and lactation exist. The purpose of the mammary gland is to provide the newborn with copious amounts of milk, a unique body fluid that has a dual role of nutrition and immunological protection. Interestingly, antimicrobial (...) enzymes, such as xanthine oxidoreductase or lysozyme, are directly involved in the evolution of the nutritional aspect of milk. We outline that xanthine oxidoreductase evolved a dual role in the mammary gland and hence provide new evidence supporting the hypothesis that the nutritional function of the milk evolved subsequent to its protective function. Therefore, we postulate that the mammary gland evolved from the innate immune system. In addition, we suggest that lactation partly evolved as an inflammatory response to tissue damage and infection, and discuss the observation that the two signaling pathways, NF‐kB and Jak/Stat, play central roles in inflammation as well as in lactation. BioEssays 28: 606–616, 2006. © 2006 Wiley Periodicals, Inc. (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)