Decisions to provide life-sustaining medical care for marginally viable newborns present a unique set of morally complex challenges for providers and parents in the United States. This article examines recent legal trends that restrict discretionary decision-making, and critiques commonly employed ethical justifications offered to support permitting such discretion.

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)

In lieu of an abstract, here is a brief excerpt of the content:How was Haiti?Sadath Sayeed"She smelled of milk and urine. Chacko marveled at how someone so small and undefined, so vague in her resemblances, could so completely command the attention, the love, the sanity of a grown man."—Arundhati Roy from The God of Small ThingsFather and SonTwenty minutes before I was to be taxied to the airport in Port-au-Prince, the baby boy handed to me did not breathe (...) continuously. He didn't breathe at all. Born a few hours earlier at home—probably in one of the hundreds of make-shift tent cities. I did ask if the baby cried after he came out of mom. Yes. He didn't suckle well and stopped crying. Dad decided to get help. Climbed onto a moped with his baby wrapped in a blanket. Must have tucked him under one arm and rode between piles of rubble to the closest health care facility.People at this other place tried to help his baby boy breathe. They pushed air into his mouth like you are doing. After a few minutes, they said that they couldn't help anymore."Go to the University hospital."From a shirt sleeve pocket, he pulled a crumpled white piece of paper with some writing scribbled on it. I gathered it documented this last visit. They took the time to hand him a note before they sent him on his way.What did Dad think? Thanks for the note. Okay, now what? Swaddle my baby. Tuck him under one arm. Hop on my moped.Strained ResourcesL'Université d'État d'Haïti has been the main teaching hospital for all of the country for decades. Many, if not most, formally trained Haitian health care providers have spent some time in Port-au-Prince at this institution. As important as it is, it has suffered from neglect over many, many years. The earthquake made matters exponentially worse. [End Page 98]Dad must have been directed to the pediatric service when he arrived. There, a few Haitian pediatric residents and nurses were doing what they did every morning. Tending to an overcrowded patient population of babies, children, and parents. The pediatrics building was left uninhabitable. All inpatient and outpatient care took place on a street where the tents had been erected.In the ICU, tent twenty beds filled a space probably meant for ten military style cots. Metal cribs and full adult hospital beds were jammed next to one another to fill every possible nook. Parents slept on the adult beds with their sick children or underneath the cribs. Siblings too. Outside, hundreds of parents would line up starting at six a.m. and stand in line for hours so that they could get their children seen in a couple of smaller tents that were used to run the outpatient clinics. Moms would fan their kids under the shade of trees on the side of the road. Feed them some milk or juice while they waited. Smile at us passers-by. They seemed to possess a bottomless well of patience.Power cords with extension wires littered the street-hospital floor under the canopy.When it rained, we were only modestly concerned about electrocution. A single 1950's style metal desk with two worn out chairs greeted visitors to the entry way and was usually occupied by some of the medical staff. A single, large metal fan that had collected enough dust and soot in its circular cage to look bearded hummed a breeze toward the desk.A bottomless well of patience and resiliency. In the popular media, this last word has been thrown around a lot to describe the character of the Haitian people. It is insufficient. Their adversity is truly absurd. Sense cannot be made of the scene in the pediatrics tents months after the earthquake struck, nor elsewhere on that campus, let alone outside its walls.The local medical staff hadn't been paid a dime in many months even prior to the earthquake. They suffered unimaginable losses during the earthquake. They still came to work."We love our children. They love us too."What so many of us think of as charity... (shrink)

Lower respiratory tract infections are a leading cause of paediatric morbidity and mortality worldwide. Children in low-income countries are disproportionately affected. This is in large part due to limitations in healthcare resources and medical technologies. Mechanical ventilation can be a life-saving therapy for many children with acute respiratory failure. The scarcity of functioning ventilators in low-income countries results in countless preventable deaths. Some hospitals have attempted to adapt to this scarcity by using hand-bag ventilation, as either a bridge to a (...) mechanical ventilator, or until clinical improvement occurs rendering mechanical ventilation no longer necessary. In instances of hand-bag ventilation, an endotracheal tube is first placed. Family members are then asked to play the role of a ventilator, manually compressing a bag repeatedly to inflate the child’s lungs. This approach is fraught with numerous ethical challenges. A careful examination of the data and a nuanced approach to the ethical considerations are imperative. Ethical arguments in support of and in opposition to allowing parental hand-bag ventilation are explored, including the best interests of the child, the child’s right to an open future, beneficence and parental protection, legitimising substandard care, and finally, contextual concerns. An algorithmic, potentially ethically permissible approach to parental participation in manual ventilation is proposed. (shrink)

In early 2010, the Nebraska state legislature passed a new abortion restricting law asserting a new, compelling state interest in preventing fetal pain. In this article, we review existing constitutional abortion doctrine and note difficulties presented by persistent legal attention to a socially derived viability construct. We then offer a substantive biological, ethical, and legal critique of the new fetal pain rationale.

On April 13, 2010, Nebraska enacted a new state ban on abortion in the Pain-Capable Unborn Child Protection Act that ha caught the attention of many on both sides of the abortion debate, and has inspired other states to attempt similar measures. The statute requires the referring or abortion-providing physician to make a “determination of the probable postfertilization age of the unborn child” and makes it illegal to induce or attempt to perform or induce an abortion upon a woman when (...) the “probable postfertilization age” of the fetus is “twenty or more weeks” unless the doctor determines in “reasonable medical judgment she has a condition which so complicates her medical condition as to necessitate the abortion of her pregnancy to avert her death or to avert serious risk of substantial and irreversible physical impairment of a major bodily function or it is necessary to preserve the life of an unborn child.”. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Introduction:Developing Health Care in Severely Resource-Constrained SettingsPaul Farmer and Sadath SayeedThis symposium of Narrative Inquiry in Bioethics catalogues the experiences of health care providers working in resource-poor settings, with stories written by those on the frontlines of global health. Two commentaries by esteemed scholars Renee Fox and Byron and Mary-Jo Good accompany the narratives, helping situate the lived experiences of global health practitioners within the frameworks of sociology (...) and medical anthropology respectively.The burgeoning interest in global health among students, health science trainees, clinical practitioners, social entrepreneurs, philanthropists, and government officials is often linked with substantial moral claims. People working in global health often start with the rhetorical premise that each and every human being, regardless of economic, social, or political circumstances that lie beyond his or her control, deserves equal access to quality health care services. This is a bold position at risk of trivialization, in part because the sentiment is so commonplace among global health equity activists.Despite this relatively recent global outpouring of solidarity and concern, billions of poor people still lack access to basic health services. All too often, interventions that perpetuate existing trade practices and market economics are promoted, usually to the detriment of the poor. As our good friend and colleague Arthur Kleinman warns:The irrelevance of ethics can be seen when considering universal ethical formulations of justice and equity that do not begin with the local moral conditions of poor people, those experiencing the systematic injustice of higher disease rates and fewer health-care resources because of their positioning at the bottom of local social structures of power.(1999, p.72)If we are serious about reducing health disparities globally, we must be prepared to mobilize resources in Africa just as we would in the United States or in Europe. If we fetishize cost-effective (read: low-cost) interventions for the poor, we must ask whether we use the same metrics in other situations. In other words, we must always strive to address the fundamental structural and social causes of health inequity.We believe that global health must avoid the "iron cage of rationality," to use sociologist Max Weber's words. One unanticipated consequence of the growth of global health as a field is that the "audit culture"—which encourages accountability and effectiveness—can at times reinforce power differentials between donors (whether government agencies or multilateral foundations) and their intended beneficiaries. Agendas are often set not by community members but by global health leaders who rarely demonstrate sustained commitments to a local community. [End Page 73]As the guest editors of this issue, we hope to recapture the soul of global health work through the art of storytelling. Narratives, even when presented as raw and unrefined as many within this issue, remind us of the immense challenges—both programmatic and moral—involved in this work. The profound scarcity of resources available to health providers in poor countries forces ethical questions on doctors, nurses, pharmacists, social workers, and other health care workers, who make difficult choices every day about what to do with the few resources they have. These are the ethical dilemmas of mortal dramas at their most dire. Global health work demands of its practitioners an alternate mode of audit than academic methodologies can provide. Narratives return us to the basic human commitments that led many of us to this work, and they remind us to use words like equality and justice meaningfully.The narratives that follow offer unmitigated perspectives on the working lives of global health practitioners. They highlight the translation of the moral and programmatic challenges of health care delivery into real choices: for example, between a visiting surgeon's desire to treat a patient and his capacity (or really incapacity) to provide follow-up care. They acknowledge the necessity of interdisciplinary cooperation in resource-constrained settings, as well as the difficulties in collaborating across cultures and continents. Most importantly, they make the claim that a newborn in distress in a tent in Port-au-Prince merits the same resources and attention as one in Boston, and that his or her death merits the same indignation. They demonstrate the radical solidarity inherent in the... (shrink)

Volume 20, Issue 7, July 2020, Page 174-177.

In 2013, one year after the enactment of the landmark Mental Health Act, a small team of psychiatrists, psychologists, and statisticians from the University of Ghana Medical School began a controversial field-based randomized-control trial entitled "Joining Forces" at the Mount Horeb prayer camp. Located about 45 minutes outside of Accra, Mt. Horeb is one of the largest and best known prayer camps in Ghana. It is an Evangelical Pentecostal organization whose mission is to "set free those held captive by Satan (...) through a ministry of fasting and prayer". Mount Horeb had a well-documented track record of human... (shrink)

Background To determine whether fetal care paediatric and maternal–fetal medicine specialists harbour differing attitudes about pregnancy termination for congenital fetal conditions, their perceived responsibilities to pregnant women and fetuses, and the fetus as a patient and whether self-perceived primary responsibilities to fetuses and women and views about the fetus as a patient are associated with attitudes about clinical care.Methods Mail survey of 434 MFM and FCP specialists .Results MFMs were more likely than FCPs to disagree with these statements : ‘the (...) presence of a fetal abnormality is not an appropriate reason for a couple to consider pregnancy termination’ ; ‘the effects that a child born with disabilities might have on marital and family relationships is not an appropriate reason for a couple to consider pregnancy termination’ ; and ‘the cost of healthcare for the future child is not an appropriate reason for a couple to consider pregnancy termination’ . 65% MFMs versus 47% FCPs disagreed that their professional responsibility is to focus primarily on fetal well-being . Specialists did not differ regarding the fetus as a separate patient. Responses about self-perceived responsibility to focus on fetal well-being were associated with clinical practice attitudes.Conclusions Independent of demographic and sociopolitical characteristics, FCPs and MFMs possess divergent ethical sensitivities regarding pregnancy termination, pregnant women and fetuses, which may influence clinical care. (shrink)

This paper examines the institutional mechanisms supporting the ethical oversight of human participant research conducted by the United Nations (UN). The UN has served an instrumental role in shaping international standards on research ethics, which invariably require ethical oversight of all research studies with human participants. The authors’ experiences of conducting research collaboratively with UN agencies, in contrast, have led to concern that the UN frequently sponsors, or participates in, studies with human participants that have not received appropriate ethical oversight. (...) It is argued that the institutional mechanisms in place to prevent research with human participants from being undertaken by the UN without ethical oversight do not, at present, extend substantively beyond the provision of guidelines and online training offered by a minority of UN bodies. The WHO and UNICEF are identified as notable exceptions, having implemented various measures to prevent health research with human participants from being undertaken without ethical oversight. Yet, it is highlighted that the WHO and UNICEF are not the only UN bodies that undertake health research with human participants and there are countless actors under the umbrella of the UN system that are regularly involved in non-health research with human participants. Arguments for the pursuit of the highest standard of ethical oversight by UN bodies are presented. Moving forward, the paper asks the question: is it time for the UN to set the standards for the oversight of ethical oversight? (shrink)

The growing significance of social media in research demands new ethical standards and practices. Although a substantial body of literature on social media ethics exists, studies on the ethics of conducting research using social media are scarce. The emergence of new evidence sources, like social media, requires innovative methods and renewed consideration of research ethics. Therefore, we pose the following question: What are the defining characteristics of ethics papers on social media research? Following a modified version of the Preferred Reporting (...) Items for Systematic Reviews and Meta-Analyses (PRISMA) protocol, we analyzed 34 publications based on ten variables: author gender, publication year, region, academic discipline, type, design, methodology, social media platform in focus, positionality statement, and ethical issues. Our findings suggest contemporary social media research ethics primarily reflects the ethical ideals of the Global North, with limited representation from the Global South. Women authors have published more papers than men authors. Previous studies have prioritized ethical concerns such as privacy, informed consent, and anonymity while overlooking researchers’ risks and the ethics of social media sites. We particularly emphasized the lack of researchers’ positionality statements in research. Our findings will pave the way to understanding social media ethics better, especially with the rapid growth of social media research in global scholarship. (shrink)

In M.A.K. v. Rush-Presbyterian-St. Luke's Medical Center, the Illinois Supreme Court reversed the appellate court and held that the phrase any physician, medical practitioner, hospital, clinic, health care facility or other medical or medically related facility, in a patient's signed consent form met the general designation requirement of the Code of Federal Regulations for the release of alcohol and drug abuse treatment records. Thus, the Illinois Supreme Court held that the medical center's release of a patient's records did not violate (...) the federal Confidentiality of Alcohol and Drug Abuse Patient Records regulations. (shrink)

This article argues that the concept of incommensurability (of conceptual frameworks) is not as incoherent as has been sometimes argued, and that it is possible to formulate this notion in such a way that it can be meaningful. The article suggests that it is worthwhile to salvage the concept of incommensurability because it is a very useful concept, almost indispensable in explaining certain situations.

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness (...) and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the child's best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Striving To Do Good:Well-Springs, Realities, and Paradoxes of Medical Humanitarian WorkRenée C. FoxThe voices that speak from the pages of these testimonial narratives are those of physicians who are engaged in medical humanitarian work. The preponderance of them are based in U.S. academic medical centers where they have clinical, teaching, and research responsibilities from which they regularly "commute" to care for patients in what the euphemistic language of "global (...) health" terms "resource-limited," rather than "poor" countries." This "hybrid life," as one of the physicians (Robert Riviello) refers to it, has transported them periodically to numerous African societies (to Algeria, Ethiopia, Gabon, Morocco, Rwanda, Sudan, Tanzania, and Uganda), to Haiti, to India and Nepal, and to Guatemala and Mexico. Three of the "stories" are written by physicians at work in the countries where they were born (Prasanta Tripathy in Eastern India, Sridevi Seetharam and colleagues in Southern India, and Paul Pierre, in Haiti).Only one group of physician-coauthors (Maricruz Merino, Jonathan Iralu, and Sonya Shin) write about their experiences in practicing medicine among poor and socially disadvantaged patients on the American mainland—in the setting of the Navajo Indian reservation in Gallup, New Mexico.All these physicians describe their involvement in humanitarian medicine as emanating from their commitment to "social justice," to "saving lives," and to "caring for the poor"; to their universalistic convictions about "human solidarity," and the non- otherness of others; to their indignation about the inequities and injustices of the world, particularly with regard to access to health care (in the words of Jeffrey Deal, "[They] deserve better. They all do"); and to their "passionate" desire, not just their "sense of duty," to help rectify these wrongs (Richard Keiden). I was struck by the fact that none of them uses the word "suffering" to describe the plight of the persons whom they feel they have been called to medically assist.Three of the physicians express the wellsprings of their motivation in religious terms. Richard Keiden refers to a "guiding principle of Judaism" on which his medical humanitarian work has been founded—"tzedakah"—which "translates as charity but actually means righteousness," is based on a "concept of social justice," and is "an obligation, not a choice." Robert Riveillo says that at the time of his graduation from high school he envisioned his "life's work as a long-term missionary surgeon"; he invokes "loving mercy," as well as justice, "in this work of solidarity" that he has undertaken; and he poignantly admits that "most days I still long to pack my things, my family, and our efforts and move to Africa for a life of direct service." What Jeffrey Deal writes is the most explicitly and ardently religious of all. He identifies his work as a physician in Sudan with Jesus's "desire for us to care [End Page 115] for the poor and downtrodden in His stead." He is haunted by his "failure" to deliver alive a "partially born" baby girl who for him incarnated "the least of the least" of whom Jesus "spoke passionately." And in touching "ever so briefly... [that] one, tiny being [he] encountered... [on ] that hot morning in Sudan," he attests, he "touched Jesus."Jeffrey Deal is not the only one who was so stricken by the death of a baby or a child. For a number of these physicians (Sadath Sayeed, Maneesh Batra, and for Sridevi Seetharam, Lisa Adams and their colleagues), it was a tragedy that they found hard to bear with "detached enlightenment" (Sayeed), or to accept. The most demonstrably heartbroken and morally outraged among them is Sadath Sayeed, who "wept uncontrollably" over the death of a baby boy, born "at home" in Haiti, "probably in one of the hundreds of make-shift tent cities." The baby was not breathing continuously, and was "handed" to him to care for. At the close of the "story " about this experience that he recounts, Sayeed lashes out with fury and angst at those who were likely to ask him, "How was it in Haiti?" Do you want to hear "my real answer?" he replies:... [L]et me summarize my last patient for you: Good luck Dad... (shrink)