Neonatal intensive care nurses are often involved in research protocols as investigators, research assistants or staff nurses implementing the protocol and providing support and explanations to families. It is important, therefore, that nurses have information about parents’ understanding of and attitudes towards the research process. The purpose of this study was to begin an exploration of parents’ perceptions about research with newborn babies through the development and validation of a survey instrument. The questionnaire included: demographic questions; scaled items about (...) research with newborn babies; scenarios describing research studies that varied in degree of risk and benefit to the newborn baby; questions about parents’ willingness to enrol their newborn baby in the studies described; and questions regarding circumstances under which consent should be sought. Content and face validity were established by an expert panel and a pilot test conducted with a small group of health care professionals and lay persons. A convenience sample of 231 parents of newborn babies completed the final version of the questionnaire. Factor analysis revealed seven factors corresponding to issues identified in the literature, providing evidence of construct validity. Parents appeared to have no difficulty in completing the instrument and all questions were answered by the majority of participants. It was concluded that the questionnaire had adequate psychometric properties and that a mixed method approach can be fruitful in exploring sensitive issues. (shrink)

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

Make happy clients of brand-new parents, and you're on your way to chronicling that baby's entire life with your camera. Sandy Puc' knows the secrets, and shares them in this guide.

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

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

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

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

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

This chapter contains sections titled: Introduction Conceptual Issues Decision Issues Conclusion References Further reading.

Most babies born each year in the U.S. undergo mandatory newborn screening to detect serious medical conditions that can cause devastating effects if treatment is not initiated prior to the onset of symptoms. Not all of the blood collected from newborns is used during routine newborn screening, and many states retain the residual dried blood samples. DBS have a broad range of potential uses, from program evaluation to public health and biomedical research unrelated to newborn screening. State (...) laws vary regarding whether parental consent is required to use DBS for secondary research, but federal now requires parental consent for the use of DBS in federally funded research. (shrink)

On October 26, 1984, Dr. Leonard Bailey and the transplant team of Loma Linda University Medical Center in California operated on a five-pound baby girl born a few weeks earlier with hypoplastic left heart syndrome. In babies born with this defect the left side of the heart is much smaller than the right and is unable to pump sufficient blood to sustain life for more than a few weeks. This rare defect occurs about once in every 12,000 live births; (...) it accounts for about a quarter of all cardiac deaths of newborns. In an operation known as a xenograft, involving cross-species transplantation of an organ, Dr. Bailey removed the defective heart from the baby and replaced it with the heart of a baboon. (shrink)

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

Newborn screening consists of taking a few drops of blood from a baby's heel in the first week of life and testing it for a list of disorders. In the United States and most countries in Europe, newborn screening programs began in the 1960s and 1970s with screening for phenylketonuria (PKU), a rare metabolic disease that causes severe and irreversible mental retardation unless treated before problems arise. As knowledge about rare diseases expanded and new screening technologies were (...) introduced—such as the tandem mass spectrometer and high‐performance liquid chromatography—the same blood sample could be used to test for a whole list of disorders. In general, screening programs in most countries have tended to expand, but in different countries they have expanded in different ways. Regulation also varies. In some states, screening is mandatory, whereas in others—Wyoming and Maryland—parents are asked for their informed consent. Germany and France have adopted an explicit informed consent procedure, whereas other European countries have a more informal “opt‐out” procedure that does not require signing an informed consent form. Whether newborn screening requires informed consent is an ongoing issue in bioethics. In this article, we will focus on the tension between informed consent and the problem of compliance in newborn screening. Asking for informed consent—allowing parents to opt out—is often thought to pose a threat to compliance. Building on the work of Onora O'Neill on informed consent and trust, however, as well as on work she coauthored with Neil Manson, we will argue that informed consent procedures may actually help maintain trust in newborn screening and may therefore support compliance. (shrink)

Some state‐based newborn screening programs in the United States already use sequencing technology, as a secondary screening test for individual conditions rather than as a broad screening tool. Newborn screening programs sequence an individual gene, such as the cystic fibrosis transmembrane conductance regulator, which causes cystic fibrosis, after an initial biochemical test suggests that a baby might have a condition related to that gene. The experiences of state public health departments with individual‐gene sequencing illustrate both the usefulness (...) of the technology and its complexities. Here I discuss how newborn screening programs investigate cystic fibrosis and, as another example, adrenoleukodystrophy through individual gene sequencing. (shrink)

When there is a conflict between parents and the physician over appropriate care due to an infant whose decision prevails? What standard, if any, should guide such decisions?This article traces the varying standards articulated over the past three decades from the proposal in Duff and Campbell’s 1973 essay that these decisions are best left to the parents to the Baby Doe Regs of the 1980s which required every life that could be salvaged be continued. We conclude with support for (...) the policy articulated in the 2007 guidelines of the American Academy of Pediatrics on non-intervention or withdrawal of intensive care for high-risk newborns. (shrink)

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

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

Newborn screening involves the collection of blood from the heel of a newborn baby and testing it for a list of rare and inheritable disorders. New biochemical screening technologies led to expansions of NBS programs in the first decade of the 21st century. It is expected that they will in time be replaced by genetic sequencing technologies. These developments have raised a lot of ethical debate. We reviewed the ethical literature on NBS, analyzed the issues and values (...) that emerged, and paid particular interest to the type of impacts authors think NBS should have on the lives of children and their families. Our review shows that most authors keep their ethical reflection confined to policy decisions, about for instance the purpose of the program, and its voluntary or mandatory nature. While some authors show appreciation of how NBS information empowers parents to care for their children, most authors consider these aspects to be ‘private’ and leave their evaluation up to parents themselves. While this division of moral labor fits with the liberal conviction to leave individuals free to decide how they want to live their private lives, it also silences the ethical debate about these issues. Given the present and future capacity of NBS to offer an abundance of health-related information, we argue that there is good reason to develop a more substantive perspective to whether and how NBS can contribute to parents’ good care for children. (shrink)

In a recent paper, Giubilini and Minerva argue for the moral permissibility of what they call ‘after-birth abortion’, or infanticide. Here I suggest that they actually employ a confusion of two distinct arguments: one relying on the purportedly identical moral status of a fetus and a newborn, and the second giving an independent argument for the denial of moral personhood to infants (independent of whatever one might say about fetuses). After distinguishing these arguments, I suggest that neither one is (...) capable of supporting Giubilini and Minerva's conclusion. The first argument is at best neutral between permitting infanticide and prohibiting abortion, and may in fact more strongly support the latter. The second argument, I suggest, contains an ambiguity in its key premise, and can be shown to fail on either resolution of that ambiguity. Hence, I conclude that Giubilini and Minerva have not demonstrated the permissibility of infanticide, or even great moral similarity between abortion and infanticide. (shrink)

Subjects of ectogenesis—human beings that are developing in artificial wombs (AWs)—share the same moral status as newborns. To demonstrate this, I defend two claims. First, subjects of partial ectogenesis—those that develop in utero for a time before being transferred to AWs—are newborns (in the full sense of the word). Second, subjects of complete ectogenesis—those who develop in AWs entirely—share the same moral status as newborns. To defend the first claim, I rely on Elizabeth Chloe Romanis’s distinctions between fetuses, newborns and (...) subjects of ectogenesis. For Romanis, the subject of partial ectogenesis ‘is neither a fetus nor a baby’ but is, instead, a ‘new product of human reproduction’. In this essay, I begin by, expanding upon Romanis’s argument that subjects of partial ectogenesis are not fetuses while arguing that those subjects are newborns. Next, I show that the distinction that Romanis draws between subjects of partial ectogenesis and newborns needs to be revised. The former is a kind of the latter. This leads us to an argument that shows why different moral statuses cannot be justifiably assigned to subjects of partial ectogenesis and subjects of complete ectogenesis, respectively. As subjects of partial ectogenesis share the same moral status as newborns, it follows that subjects of complete ectogenesis share the same moral status as newborns as well. I conclude by considering implications that this essay may have for the research and development of AW technology and conceptual links between a subject’s moral status and birth. (shrink)

Objectives: To gather information about the practices and attitudes of providers of maternity care with respect to informed consent for newborn screening .Methods: A questionnaire concerning information provision and parental consent for NBS was sent to all 1036 registered lead maternity carers in New Zealand.Results: 93% of LMC in New Zealand report giving parents information concerning NBS, most frequently after delivery and in the third trimester . The majority of LMC currently obtain some form of consent for NBS from (...) parents and consider this to be the ideal approach . Despite this a significant minority of LMC reported considering that NBS should be mandatory. Of those in our survey who believed that NBS should be mandatory, paradoxically most still believed that some form of parental consent should be obtained; of those who believed testing should not be mandatory, only a small proportion would accept parental refusal without question.Conclusions: When the results of this survey are considered in conjunction with existing evidence there appears to be a consensus that good quality information in the prenatal period should be an integral part of any NBS programme. The issue of consent is more complex and there is less agreement on the preferred degree of parental involvement in decisions to allow babies to undergo NBS. A policy that both strongly recommends NBS but also allows parental choice appears to be most consistent with the views of LMC in this survey. (shrink)

Newborn screening is the programme through which newborn babies are screened for a variety of conditions shortly after birth. Programmes such as this are individually oriented but resemble traditional public health programmes because they are targeted at large groups of the population and they are offered as preventive interventions to a population considered healthy. As such, an ethical tension exists between the goals of promoting the high uptake of supposedly ‘effective’ population-oriented programmes and the goal of promoting genuinely (...) informed decision-making. There is, however, a lack of understanding with regard to how parents experience the tension between promoting uptake and facilitating informed choice. This paper addresses this issue, and data are presented to show how aspects of the timing, presentation of information and procedural routinisation of newborn screening serves to impact on the decisions made by parents. (shrink)

Hinduism is considered one of the most ancient religions in the world. Although the technological innovation of modernization has undermined the reliance on their traditions, Hindus may still rely on Hindu Scripture when making decisions. From their standpoint, contrary to Western medicine, human lives cannot be reduced to statistical and empirical facts. They focus more on preserving the spirit, rather than considering survival as one of the goals of medicine. Consequently, when a preterm infant is born, Hindu parents might struggle (...) to understand the goals of Western neonatologists. This divergence may create misunderstandings when discussing end-of-life decisions. Since they value relational aspects to be of utmost importance, they may accept treatments only in the likelihood of good neurological outcomes. Being able to interact allows Hindus to act virtuously with the aim of purifying their soul toward moksa. When it comes to end-of-life decisions on behalf of newborns, Hindu parents may opt to forgo treatments and let the baby peacefully die, while praying for their soul to have a better rebirth. This paper aims to evaluate quality-of-life assessment in the Hindu tradition in comparison with the Catholic tradition. It draws parallelisms between these two different religions to investigate whether an inter-religious dialogue is possible. This work will help Catholic, and more broadly Western, doctors to have a better understanding of the Hindu end-of-life views. (shrink)

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

The critical discourse analysis is the tool used in this article, to study how audiovisual media have constructed mental representation about the historical facts occurred in Spain between the final stage of the Spanish Civil War and the late 1980s: the theft of newborn babies. The State has failed in an attempt to establish policies that support truth, justice and reparation as it has been recalled by United Nations experts to the Government of Spain, and the reports and documentaries (...) have become vehicles to capture and recover memories. Our objective is to analyze how this collective awareness has been realized and the contribution of reports and documentaries. Our results show that the Spanish television channels silence the Francoist context to depict the thefts as the product of economical mobs focused on child trafficking. The international channels, however, put the origin of the dictatorship at the center of the discourse. (shrink)

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

In The Netherlands, it is openly acknowledged that the parents' ability to take care of their child plays a role in the decision-making process over administration of life-prolonging treatment to severely defective newborn babies. Unlike other aspects of such decision-making process up until the present time, the ‘ability to take care’ has not received specific attention in regulation or in empirical research. The present study is based on interviews with neonatologists in two Dutch NICUs concerning their definition of the (...) ability to take care and its relevance in non-treatment decisions. All of the respondents think that the ability to take care consists of more than one factor. Most doctors mention the parents' emotional state, social network and cognitive abilities. Some doctors mention the presence of psychological conditions in the parents, their financial situation and physical condition. A few refer to the parents' experience and age, their chances to have another baby and their cultural background. Most doctors think the ability to take care has a secondary relevance in the decision-making process, while the primary concern is assessing the condition of the child. A substantial minority thinks the ability to take care does not play any role, while one doctor thinks it is a factor of primary importance. The study constitutes an important stepping-stone for future research in The Netherlands and elsewhere. (shrink)

The increasing number of newborns has stimulated the infant market. In particular, the baby stroller, serving as an important life partner for both babies and parents, has attracted more attention from society. Stroller design and functionality are of vital importance to babies' physiological and psychological health as well as brain development. Therefore, in this paper, we propose a modularization design method for the novel four-wheeled baby stroller based on the KANO model to ensure the mechanical safety and involve (...) more functionalities. Manual control of the baby stroller requires the rapid response of human motor systems in a completely controlled manner, which could be a potential risk. To enhance the safety and stability of the stroller motion, especially in situations where manual control is hard to achieve (e.g., sharp turns), we propose an autonomous motion control scheme based on model predictive control. Both the modularization design and the motion controller are verified in the MATLAB simulation environment through path tracking tasks. The feasibility is validated by the satisfactory experimental results with lateral position error in a reasonable range and good trajectory smoothness. (shrink)

This paper discusses the issue of ‘post-birth abortion’ from an applied perspective. Three hypothetical situations where a newborn considered as a ‘potential person’ is at risk of being killed are proposed to highlight the potential controversial outcomes of post-birth abortion. The internal consistency of the argument proposed by Giubilini and Minerva to morally justify newborn killing is contested as well. Finally, an alternative moral strategy based on the precautionary principle and excluding any distinction between potential and actual persons (...) is proposed as rational. (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)

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)

Abortion is largely accepted even for reasons that do not have anything to do with the fetus' health. By showing that (1) both fetuses and newborns do not have the same moral status as actual persons, (2) the fact that both are potential persons is morally irrelevant and (3) adoption is not always in the best interest of actual people, the authors argue that what we call ‘after-birth abortion’ (killing a newborn) should be permissible in all the cases where (...) abortion is, including cases where the newborn is not disabled. (shrink)

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

In lieu of an abstract, here is a brief excerpt of the content:Declining Circumcision for My Premature NewbornDionne DeschenneIn 1993, I was pregnant with my first of three sons and was busy preparing for his arrival. Unlike most parents, who focus much of their time on decorating the nursery and buying supplies, I was researching the medical decisions that I would need to make in the moments and weeks following his birth. Having worked in a hospital while a pre-medicine student, (...) I had heard the cries of babies undergoing tests and procedures shortly after birth and knew I needed to be clear on the necessity of those tests and procedures if I was going to consent to them for my baby.My husband was in the Navy and out to sea for six months, so I took a few college courses to pass the time. One was a philosophy course on ethics, and I chose the bioethics of infant male circumcision as the focal point of my coursework that quarter. This allowed me to work through my findings in a racially, religiously, and age-diverse classroom under the guidance of a skilled professor. I was shocked to learn that even the American Academy of Pediatrics (AAP) at that time acknowledged that there were no known medical benefits that resulted from circumcision. How, I wondered, could parents allow their newborns to undergo such a harrowing experience for no reason?As the months passed and the birth of our first son grew nearer, I had everything ready—all of the decisions made, the doctors prepared, and the hospital selected. All of that preparation went out the proverbial window when I contracted pneumonia at 30 weeks. I was admitted to the Naval Hospital and treated for a week before being airlifted to a nearby Army Hospital when my condition worsened. After a few days there, the doctor came in very early one morning to wake me. Our son's heart rate was slowing, and we were at risk of losing him. They needed to immediately perform an emergency Cesarean section to preserve his life. I was terrified, knowing the potential myriad adverse effects his pre-term birth could cause.We were rushed into the OR and within seconds I had an epidural in my back. Moments later, my perfect, tiny but silent baby was whisked from the room to be attended to by a highly skilled and immensely respected NICU team. My husband followed to keep a watchful eye on our son while I was taken to Recovery. A few hours later, I was allowed to join my husband and son in the NICU.Our baby was beautiful, but so tiny that my husband could hold him in one hand. He weighed four pounds and had an enormous needle in the top of his head. The nurse explained to me that the IV needle was in the best location for administering the IV fluids and medications that our baby needed. His pre-term birth had introduced the need for several tests and treatments I had not anticipated. This was immensely distressing for me as someone who wanted to research and understand so that I could make well-informed and ethical decisions. Keep in mind that this was in the days before smartphones. In fact, we didn't even have cell phones at that time! In order to do research, I needed to find a medical text within the hospital that I could read, or get to a library. I had an abdomen full of staples, couldn't drive, and refused to be away from my baby, so going to the library was not an option.Under the conditions, I relied on the hospital staff to help me understand the risks, benefits, and necessities of each procedure or test that they recommended. We formed a relationship of mutual respect. I think this was due to the in-depth [End Page 89] conversations we had during that time. That mutual respect we developed likely led to a remarkable conversation toward the end of our son's first week in the NICU. Our doctor was making his rounds when a nurse asked if we wanted to have our son circumcised that day since the doctor... (shrink)

Background Factors that could potentially act as facilitators and barriers to successful recruitment strategies in perinatal clinical trials are not well documented. The objective was to assess lay persons’ understanding of the informed consent for randomized clinical trial in emergency obstetric and newborn care. Methods This was a qualitative study conducted among survivors of severe obstetric complications who were attending the post-natal clinic of Kawempe National Referral Hospital, Uganda, 6–8 weeks after surviving severe obstetric complications during pregnancy or childbirth. (...) The study that involved 18 in-depth interviews was conducted from June 1, 2019 to July 6, 2019. The issues explored included perceptions of the purpose and necessity to conduct such research how research-related information would be disclosed, and what could be the potential benefits and risks of participation. The data was analyzed by thematic analysis. Results Respondents felt that research was necessary to investigate the cause, prevention or complications of an illness, especially as much was known about some pregnancy and newborn complications. Most believed that the emergency contexts affects whether and what prospective participants may understand if information about research was disclosed. Whereas they did not see the value of procedures like randomization, they felt that if these and any other procedures necessary should be done transparently and fairly. The decisions to participate would significantly be influenced by possibility of risk to the unborn baby or the newborn. Solidarity was an important influence on decision-making. Conclusions Respondents valued participation in RCTs in emergency obstetric and newborn care. However, they expressed concerns and valued openness, transparency and accountability with regard to how clinical trials information is disclosed and the decision-making process for clinical trial participation. While autonomy and solidarity are contradictory values, they complement each other during decision-making for informed consent. (shrink)

Congenital hip dysplasia is an abnormal formation of the hip socket that can cause painful arthritis of the joints. Early intervention is essential to ensure proper development of the bones that make up the hip joint, because the longer the condition goes undetected and untreated, the more difficult it is to correct. The assessment test to detect congenital hip dysplasia in newborns was first described by Marino Ortolani, an Italian pediatrician.Marino Ortolani was born in 1904 in Altedo, a small town (...) between Bologna and Ferrara in northeastern Italy. His parents were agricultural workers. He studied medicine at the University of Bologna and, after graduating in 1929, was awarded a medal for being the first.. (shrink)

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

In this paper we clarify some issues related to our previous article ‘After-birth abortion: why should the baby live?’.

Background There is longstanding consensus on the need to include pregnant women in research. The goal of clinical research is to find highly regulated, carefully controlled, morally responsible ways to generate evidence about how to effectively and safely prevent illness or treat sick people. This manuscripts present a conceptual analysis of the ethicality of clinical trials in 3 scenarios: where the pregnant is involved in clinical trials as a participant during pregnancy for data that addresses pregnancy complications, where the pregnant (...) woman consents to clinical trial participation for an unborn baby that has complications, to generate data on complications at this stage of life, and where the mother may consent for participation of their newborn child in clinical trials. Methods Conceptual analysis. Findings Investigators often choose to exclude pregnant women and newborns from research, even where there is possibility for them to benefit from the study intervention. Objections include vulnerability of pregnant women, altered pharmacokinetics and risk of adverse effects, with a need to balance potential maternal and fetal risks and benefits of research participation. While the objections may be valid, not performing research magnifies what should be a carefully controlled risk during research, pushing this risk into the clinical setting, and subsequently posing a challenge to clinicians who are faced with making treatment decisions for pregnant patients with limited evidence of efficacy and safety. The potential benefits of fair inclusion in clinical trials outweigh the potential risks. Conclusion Research involving pregnant women is necessary to provide women with effective treatment during pregnancy, to promote fetal safety, and to reduce avoidable harm from suboptimal care and to provide pregnant women, their fetuses and newborns. (shrink)

Background There is longstanding consensus on the need to include pregnant women in research. The goal of clinical research is to find highly regulated, carefully controlled, morally responsible ways to generate evidence about how to effectively and safely prevent illness or treat sick people. This manuscripts present a conceptual analysis of the ethicality of clinical trials in 3 scenarios: where the pregnant is involved in clinical trials as a participant during pregnancy for data that addresses pregnancy complications, where the pregnant (...) woman consents to clinical trial participation for an unborn baby that has complications, to generate data on complications at this stage of life, and where the mother may consent for participation of their newborn child in clinical trials. Methods Conceptual analysis. Findings Investigators often choose to exclude pregnant women and newborns from research, even where there is possibility for them to benefit from the study intervention. Objections include vulnerability of pregnant women, altered pharmacokinetics and risk of adverse effects, with a need to balance potential maternal and fetal risks and benefits of research participation. While the objections may be valid, not performing research magnifies what should be a carefully controlled risk during research, pushing this risk into the clinical setting, and subsequently posing a challenge to clinicians who are faced with making treatment decisions for pregnant patients with limited evidence of efficacy and safety. The potential benefits of fair inclusion in clinical trials outweigh the potential risks. Conclusion Research involving pregnant women is necessary to provide women with effective treatment during pregnancy, to promote fetal safety, and to reduce avoidable harm from suboptimal care and to provide pregnant women, their fetuses and newborns. (shrink)

Caring for critically ill and dying patients often triggers both professional and personal growth for physician trainees. In pediatrics, the neonatal intensive care unit is among the most distressing settings for trainees. We used longitudinal narrative writing to gain insight into how physician trainees are challenged by and make sense of repetitive, ongoing conflicts experienced as part of caring for very sick and dying babies. The study took place in a 45-bed, university-based NICU in an urban setting in the United (...) States. From November 2009 to June 2010 we enrolled pediatric residents and neonatology fellows at the beginning of their NICU rotations. Participants were asked to engage in individual, longitudinal narrative writing about their “experience in the NICU.” Thematic narrative analysis was performed. Thirty-seven physician trainees participated in the study. The mean number of narratives per trainee was 12; a total of 441 narratives were available for analysis. Conflict was the most pervasive theme in the narratives. Trainees experienced conflicts with families and conflicts with other clinicians. Trainees also described multiple conflicts of identity as members of the neonatology team, as members of the medical profession, as members of their own families, and as members of society. Physician trainees experience significant conflict and distress while learning to care for critically ill and dying infants. These conflicts often led them to question their own morals and their role in the medical profession. Physician trainees should be educated to expect various types of distress during intensive care rotations, encouraged to identify their own sources of distress, and supported in mitigating their effects. (shrink)

Several criticisms of the Groningen Protocol rest on misunderstandings about how it works or which babies it concerns. Some other objections—about quality‐of‐life judgments and parents' role in making decisions about their children—cannot be easily cleared away, but at least in the context of Dutch culture and medicine, the protocol is acceptable.

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)

Seventy-five years before Niander Wallace brutally kills a newborn replicant in Blade Runner 2049, the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was formed. Its formation led to the creation of the Belmont Report, which established guidelines for the treatment of human subjects. Wallace uses a scalpel as the instrument of disposal, of the newborn replicant, stabbing her in the womb, thereby ending her life moments after wishing her a happy birthday. The (...) conjunction of 2049 and the Belmont Report leads us to important questions concerning biomedical research, given that replicants are “bioengineered humans.” For example, is the “defective” replicant a human subject, and thus protected by research guidelines, or is she a product or consumer good that did not meet expectations? (shrink)