Prabhpal Singh has defended a relational account of the difference in moral status between fetuses and newborns. Newborns stand in the parent-child relation while fetuses do not, and standing in the parent-child relationship brings with it higher moral status for newborns. Orphans pose a problem for this account because they do not stand in a parent-child relationship. I argue that Singh has not satisfactorily responded to the problem.

This article examines the attempt by the Kingdom of Morocco—a country of pivotal geopolitical importance in the late 1970s and early 1980s—to secure a research reactor. It finds that by treating that reactor as a diplomatic object, we can observe the different diplomatic frameworks in which that object was conceived of, contextualized, and negotiated. The historical emergence of these frameworks occurred in close relationship with the IAEA, which acted as an intermediary linking various administrations, programs, and countries, including Morocco. In (...) the end, this history reveals that the late Cold War nuclear world involved multilateral actions and forces, some of which encouraged Morocco in its bid to acquire a reactor, but others of which left that same reactor orphaned and unfinished. (shrink)

The rule of rescue describes the moral impulse to save identifiable lives in immediate danger at any expense. Think of the extremes taken to rescue a small child who has fallen down a well, a woman pinned beneath the rubble of an earthquake, or a submarine crew trapped on the ocean floor. No effort is deemed too great. Yet should this same moral instinct to rescue, regardless of cost, be applied in the emergency room, the hospital, or the community clinic? (...) -/- In health care, the desire to save lives at any cost must be reconciled with the reality of resource scarcity. As one example, the estimated cost for prophylactic Factor VIII to treat one patient with hemophilia for one year is $300,000. Costs of this magnitude have been accepted by public and private insurers in the developed world, even though, in principle, these sums could provide greater overall health benefit if allocated to pay for the unmet health care needs of many other patients. Looking forward, however, broad application of the rule of rescue will be increasingly untenable. But the moral instinct will remain: the desire to help those weakest among us, especially when their small numbers allow us to see them as unique individuals. What, then, is the ethical framework that can guide coverage and reimbursement decisions for orphan drugs into the future? (shrink)

Use of humanities content in American medical education has been debated for well over 60 years. While many respected scholars and medical educators have purported the value of humanities content in medical training, its inclusion remains unstandardized, and the undergraduate medical curriculum continues to be focused on scientific and technical content. Cited barriers to the integration of humanities include time and space in an already overburdened curriculum, and a lack of consensus on the exact content, pedagogy and instruction. Edmund Pellegrino, (...) physician and scholar of the latter twentieth century, spent much of his professional life promoting the value and importance of the humanities in medical education, seeking the best way to incorporate and teach this content in clinically relevant ways. His efforts included the founding of multiple enterprises starting in the 1960s and 1970s to promote human values in medical education, including the Society for Health and Human Values and its Institute on Human Values in Medicine. Regardless of his efforts and those of many others into the current century, the medical humanities remains a curricular orphan, unable to find a lasting home in medical education and training. (shrink)

In this paper, I urge feminists to re-center fetal moral status in their theorizing about abortion. I argue that fundamental feminist normative commitments are at odds with efforts to de-emphasize fetal moral status: The feminist commitment to ensuring care for dependents supports surprising conclusions with regard to the ethics of abortion, and the feminist commitment to politicizing the personal has surprising conclusions regarding the politics of abortion. But these feminist insights also support the conclusion that, conditional on fetal moral status, (...) care for unwanted fetuses would be a social obligation that only derivatively falls to women who are unwillingly pregnant. (shrink)

Although popular, I argue that the International Committee of Medical Journal Editors (ICMJE) account of authorship is flawed. It inadvertently allows for practices that it was designed to prevent. In addition, it creates a new category of authorless papers—orphan papers. The original World Association of Medical Editors (WAME) criterion is preferable.

I offer a response to an objection to my account of the moral difference between fetuses and newborns, an account that seeks to address an analogy between abortion and infanticide which is based on the apparent equality of moral value of fetuses and newborns.

Christians care for orphans and children without parental care in different forms. However, in the Global South, care is primarily provided in orphanages or large residential settings. Despite good intentions, there are limitations to provide a nurturing family environment for the children in such care environment. With current knowledge of alternative child care and in light of the holistic ministry, this article suggests an approach for the church to care for orphans and children at risk by focusing on (...) the family and the local community. Additionally, simple steps to transition to holistic orphan care are offered. (shrink)

At least seven orphan members of the nuclear receptor superfamily are transcriptionally regulated by the steroid hormone ecdysone and expressed during the onset of Drosophila metamorphosis. A recent paper provides functions for two of these receptors, E75B and DHR3, through trans‐regulation and heterodimerization(1). DHR3 appears to function as a switch that defines the transition from a late larva to a prepupa, and E75B functions as a timer that modulates this transition. This study provides a biological function for orphan receptor interactions (...) during development. (shrink)

This study investigates the literary references to orphans in writings amongst the Qumran texts that were written in Hebrew and can be associated with the sectarian Qumran movement. The study focuses on passages where forms of the word -•-• are used. These include the Damascus Document, Hodayot and Barkhi Nafshiª. The investigation concludes that the references to orphans in these passages do not have the same rhetorical functions. In CD 6, the wordings of authoritative scriptures are adapted to (...) portray orphans and widows as the victims of wrongdoing. In 1QHª and 4Q434, however, orphans are mentioned in hymns that praise the Lord's positive treatment of needy people. (shrink)

A number of advances in assisted reproduction have been greeted by the accusation that they would produce children ‘without parents’. In this paper I will argue that while to date these accusations have been false, there is a limited but important sense in which they would be true of children born of a reproductive technology that is now on the horizon. If our genetic parents are those individuals from whom we have inherited 50% of our genes, then, unlike in any (...) other reproductive scenario, children who were conceived from gametes derived from stem cell lines derived from discarded IVF embryos would have no genetic parents! This paper defends this claim and investigates its ethical implications. I argue that there are reasons to think that the creation of such embryos might be morally superior to the existing alternatives in an important set of circumstances. (shrink)

In infancy, all primates require a caregiver who meets their physical needs, such as food and protection (among many others), and their affective, cognitive, and social needs (in some species, this requirement extends until the primate is a juvenile). The caregiver is essential for primate infant survival and social and cognitive development. For that reason, infants are greatly affected if they lose their caregivers; the effects of becoming an orphan range from being unable to survive to behavioral and physiological consequences (...) that last through adulthood. This entry provides an overview of relevant aspects of the study of primate orphans such as survival rates, adoption, variables in the adoption process, the effects of losing a mother, and orphans in sanctuaries. (shrink)

Children and pregnant women are often excluded from clinical research. This has resulted in a paucity of evidence on how medicines work for fetuses, neonates, infants, and adolescents. It also raises bioethics, scientific, and public health concerns. For over half a century, doctors have prescribed medicines to children largely on the basis of how they work in adults, despite children’s varied physiologies and differences in how their bodies absorb and metabolize drugs. Regulations and legislation have led to an increase in (...) the number of pediatric studies and to better drug labeling. However, children at all stages of their lives often remain “therapeutic orphans” owing to insufficient evidence about how medicines work for them. (shrink)

Establishing the nature of genetic parenthood is an important task. This is, firstly, because many people desire that relationship and it is in their interest to know what that is, and secondly, because there is a view that it may incur certain moral obligations between the genetic parent and their child. Many theorists have made attempts to define exactly what genetic parenthood is. I show that these definitions are deficient if they wish to fully capture all reproductive scenarios in ways (...) that are intuitive and/or meaningful. Through a series of cases involving technologies such as cloning and genome editing, we see that in lieu of the traditional two parents, there are possible beings who have no genetic parents, one genetic parent, or many genetic parents. Establishing these cases complicates our understanding of genetic parenthood. From this, we must reconsider current definitions, as well as the usefulness of defining genetic parenthood in these complex cases. Here I do not aim to establish a new definition, but rather to suggest that this complexity makes it necessary to re‐assess the importance of the connection between genetic parenthood and parental obligations and authorities. (shrink)

An urgent need for standards and guidelines on genetic testing has arisen because of swift advances in research, facilitated by the Human Genome Project. The goals of the Human Genome Project include the identification of all genes and sequencing of the human genome. The project is currently ahead of schedule and under budget. We can expect an avalanche of genetic information, much of which will be relevant to human disease. In addition to the Human Genome Project, investigator-initiated research projects and (...) commercial biotechnology laboratories are discovering human disease genes at a breathtaking pace. Technology transfer has been rapid and has led to the availability of numerous clinical tests within only a few years since the first disease gene yielded to the technique of positional cloning. Disease genes are selected for study for a number of reasons. Genes for rare diseases may be studied before more common disorders because they elucidate an important area of pathogenesis. Unfortunately, technology transfer to the clinic for rare tests is hindered by several factors. Standards need to be established to assure that genetic tests for rare diseases are not ignored or mismanaged in the rush to commercialize tests for more common human genetic diseases. (shrink)

This essay outlines the moral dilemma of funding orphan drug research and development. To date, ethical aspects of priority setting for research funding have not been an issue of discussion in the bioethics debate. Conflicting moral obligations of beneficence and distributive justice appear to demand very different levels of funding for orphan drug research. The two types of orphan disease, rare diseases and tropical diseases, however, present very different ethical challenges to questions about allocation of research funds. The dilemma is (...) analysed considering utilitarian and rights based theories of justice and moral obligations of non-abandonment and a professional obligation to advance medical science. The limitations of standard economic evaluation tools and other priority setting tools used to inform health policy decision makers on research funding decisions are outlined. (shrink)

Die Entwicklung einer „personalisierten Medizin“ ist zurzeit in aller Munde. Insbesondere die personalisierte Arzneimitteltherapie gewinnt infolge der pharmakologischen und molekulargenetischen Entwicklungen immer mehr an Bedeutung. Dies macht es erforderlich, die Auswirkungen der personalisierten Arzneimitteltherapie auf die gesetzliche Krankenversicherung (GKV) und die Patientenversorgung zu untersuchen. In diesem Zusammenhang stellt sich die Frage nach einer „Orphanisierung“: Könnten Arzneimittel der personalisierten Medizin regelmäßig als Orphan Drugs, also als Arzneimittel für seltene Leiden, ausgewiesen werden, würde für sie nach dem Arzneimittelneuordnungsgesetz (AMNOG) grundsätzlich kein Nachweis (...) des Zusatznutzens im Rahmen der vom Gemeinsamen Bundesausschuss (GBA) vorzunehmenden frühen Nutzenbewertung erforderlich werden. Entscheidend für die Ausweisung des Arzneimittels als Orphan Drug ist unter anderem die Prävalenzrate der Patientengruppe, deren Erkrankung mit dem Arzneimittel behandelt werden soll. In diesem Zusammenhang kommt der Stratifizierung von Patientengruppen im Rahmen der personalisierten Arzneimitteltherapie eine besondere Bedeutung zu. Eine solche „Orphanisierung“ hätte für die GKV wegen der mangelnden Kenntnis von dem Zusatznutzen des Arzneimittels insbesondere preisrechtliche Konsequenzen; für die Patienten sind die Folgen durchaus differenzierter zu betrachten. (shrink)

The challenge of orphans and vulnerable children has become central to the response of many organisations today. The number of OVC throughout northern Nigeria is growing as a result of the Boko Haram pandemic. Mostly, this is caused by the death of parents who have been killed by the insurgents. It has been estimated that by 2015, 200 000 children under the age of 18 had been orphaned by the Boko Haram insurgents. As the number of OVC is growing, (...) it is becoming more and more difficult for their communities to address all their needs, including their need for positive role models and mentors. This article discusses the role that mentoring can play in the development of OVC affected by violence in northern Nigeria, specifically those in internally displaced person camps. This article argued that one approach to improve the holistic care of OVC in IDP camps in northern Nigeria is through the use of mentors. (shrink)

Introduction. The inadequacy of the support measures provided to children with orphan diseases is exacerbated by the trend towards an increase in the number of children with such a diagnosis. Orphan diseases also include diseases caused by primary immunodeficiency or congenital errors of immunity, which are life-threatening. However, these people are part of society and require attention from it, and social and economic measures from the state. Most of them, with proper treatment, socialization and appropriate government support, can lead a (...) normal life and live a full life. Scientific novelty of the research. On the basis of the study results, the authors contribute to clarifying the principles used in the implementation of the security function of the social state. The targeting of social support measures must be supplemented with the principles of social justice and freedom to choose ways to meet the needs of specific categories of citizens, understood as follows. The welfare state supports those citizens who need it most of all, namely, the poor. Specific categories of citizens can satisfy their needs, while having the opportunity to choose. This opportunity arises thanks to the receipt of targeted assistance in the form of monthly or annual subsidies. Families with children with orphan diseases should also be included in these categories. If they have the right to receive annual government subsidies, they will be able to spend these funds depending on the current needs due to the state of health of their children with orphan diseases (for the purchase of socially important food products; medicines, medical nutrition, and various services). The aim of the work is to study the problems of providing support measures to children with orphan diseases in the context of the current model of the welfare state. The article analyzes the satisfaction of patients with congenital immunity errors with various types of state support, identifies problems that reduce their satisfaction. Methods. The authors use methods such as comparative analysis, study of regulatory legal acts, sociological analysis. Results. On the basis of the study results the effectiveness of measures of state support for children with orphan diseases, studying the best experience of foreign countries, proposals were made to clarify the principles used to implement the security function by the social state, to expand the composition of the subjects involved in providing support measures analyzed in the article. Conclusions. The results obtained make it possible to assert that the targeted approach, which is basic in the model of the welfare state, does not cover most of the problems of children with innate immunity errors and, accordingly, the families that represent their interests. (shrink)

The term “critical thinking” is barely a century old; and it is controversial, fraught with ambiguity, and often treated as an academic orphan, condemned to the margins of scholarly culture. Despite its “royal” ancestry, as the embodiment of rationality inherited from Ancient Greece, it has come to represent an isolated and sectarian field of inquiry. But philosophers would be wise to take due credit for their offspring rather than shun or disavow critical thinking; and other scholars should recognize it as (...) their shared legacy from philosophy, and the embodiment of intellectual rigor. (shrink)

Like many North African, Francophone, and world writers whose lives span the historic divide of independence from colonialism, Abdelkébir Khatibi’s work focuses in large part upon the idea of encounter, or, in French, “rencontre.” In this paper I focus upon the figure of the orphan in La mémoire tatouée and Le lutteur de classe à la manière taoïste, two of his earliest texts. By focusing upon the orphan as a multivalent term, and by following Khatibi’s emphasis upon language, literature, and (...) even life itself as a game or experiment, we can see how Khatibi creates an ethics of encounter that derives its meaning from recuperating a negatively connotated word and transforming it into a term of positive value. With the term “orphan,” he shows how through encountering the Other, by extending beyond into the unknown, by exceeding the circumscriptions of ancestry, identity, and national culture, the individual rises into a new status of free living. Moreover, it is equally through the practice of writing that life redounds with life; writing for Khatibi is never a mimetic representation of life per se but a space for experimenting, for discovery, and for exceeding the parochial nature of an individual’s physical placement in the world. In this sense, the orphan status of his writing shows itself through his aggressively restless, polyphonic, and ageneric writing that uses the localization of genre only as a hinge to push against in the quest to articulate a new relation to the world. (shrink)

A prevailing belief among Russia’s cultural elite in the early twentieth century was that the music of composers such as Sergei Rachmaninoff, Aleksandr Scriabin, and Nikolai Medtner could forge a shared identity for the Russian people across social and economic divides. In this illuminating study of competing artistic and ideological visions at the close of Russia’s “Silver Age,” author Rebecca Mitchell interweaves cultural history, music, and philosophy to explore how “Nietzsche’s orphans” strove to find in music a means to (...) overcome the disunity of modern life in the final tumultuous years before World War I and the Communist Revolution. (shrink)

For a significant number of patients, there exists no, or only little, interest in developing a treatment for their disease or condition. Especially with regard to rare diseases, the lack of commercial interest in drug development is a burning issue. Several interventions have been made in the regulatory field in order to address the commercial disinterest in these conditions. However, existing regulations mainly focus on the provision of incentives to the sponsors of clinical trials of orphan drugs, and leave unanswered (...) the overarching question about the rightful place of orphan drugs in resource allocation systems. In this article, we analyse the ethical aspects of funding research and development in the field of rare diseases. We then propose an ethical framework that can help health policy makers move forward in the difficult matter of fairly allocating resources for the prevention, diagnosis and treatment of rare diseases. (shrink)

The supreme counsel of the religion of Islam insistently emphasizes and promotes social solidarity and solidarity at every stage of life. Among the encouraged advices; the Qur'an and the hadith how meticulously focused on orphans and promised conditions and provisions for a virtuous life. The aim of the protection of orphans, shelter, representation, surety, evaluation of his property for bestowal, approaching with compassion and mercy. The prophet of Islam, who was born as orphan, Muhammad (pbuh.), by addressing the (...) conscience of humanity in order to protect the rights and law of orphan, brought preventive, encouraging orders and prohibitions. When it comes to dealing with orphans and protecting their rights and laws, it is not a correct approach to understand only in the form of protecting and meeting their material needs. On the contrary, it has been emphasized to meet his spiritual and psychological needs, not to insult his personality, and to contribute to his growing up as a beneficial individual for the society. This issue is stated as follows in the verse: “So don't crush the orphan” (Duhâ, 93/9). This order and the person of the Messenger of Allah also, draw the attention of mankind to respect for the material and spiritual rights of the orphan. The main target of the related things is not to leave the orphans alone, but to protect them, to provide an atmosphere of love. Otherwise, orphans deprived of the environment of love may pose problems for themselves and society while struggling with some psychological problems. The main purpose of our study is to draw attention to the compliance of the orphans' rights-law in the axis of the Qur'an and hadith according to the rapidly developing and changing life conditions in our age. (shrink)

Paulo Freire consistently upheld humanization and mutuality as educational ideals. This article argues that conceptualizations of knowledge and how knowledge is sought and produced play a role in fostering humanization and mutuality in educational contexts. Drawing on Mary Shelley’s novel Frankenstein, this article focuses on the two central characters who ‘ardently’ pursue knowledge at all costs. It will be argued that the text suggests two possible outcomes from the pursuit of knowledge. One is mutuality; the other is social disconnectedness.

The PRIME Institute of the College of Pharmacy, University of Minnesota, recently released preliminary research findings indicating a trend of extraordinary pharmaceutical industry pricing of drug products in the United States (U.S.). According to researchers at the PRIME Institute, such extraordinary price increases are defined as any price increase that is equal to, or greater than, 100% at a single point in time. In some instances, PRIME Institute researchers found that drugs exhibiting extraordinary price increases are categorized as "orphan drugs" (...) (or blood-related biologic treatments) and often life-saving or life-sustaining for treating the cause or symptoms of diseases affecting fewer than 200,000 people in the U.S., or where there is prevalence of less than 5 per 10,000 people afflicted with a disease or symptoms in the community. Because of extraordinary price increases for orphan drugs — some exceeding 1000% at a single point in time -this article addresses two interrelated questions: Are extraordinary orphan drug price increases socially responsible behavior? If so, are the pharmaceutical industry's policies providing orphan drug access to American consumers in dire need of available life-sustaining and life-enhancing pharmaceuticals considered "socially responsible" behavior? The author concludes, after an interdisciplinary analysis of the legal, economic, sociopolitical, and ethical dimensions of orphan drug pricing, that they are not socially responsible – unless justified by cost and availability of health care marketplace/patient options. Furthermore, the author recommends a socially responsible industry strategic approach to insure that patients ultimately receive -regardless of cost -timely access to life-saving and life-sustaining orphan drugs. (shrink)

This issue’s “Legal Briefing” column covers recent legal developments involving medical decision making for incapacitated patients who have no available legally authorized surrogate decision maker. These individuals are frequently referred to either as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. The challenges involved in obtaining consent for medical treatment on behalf of these individuals have been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the “single greatest category of problems” (...) encountered in bioethics consultation. In 2012, JCE published a comprehensive review of the available mechanisms by which to make medical decisions for the unbefriended. The purpose of this “Legal Briefing” is to update the 2012 study. Accordingly, this “Legal Briefing” collects and describes significant legal developments from only the past three years. My basic assessment has not changed. “Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform.” Most facilities are “muddling through on an ad hoc basis.” But the situation is not wholly negative. There have been a number of promising new initiatives. I group these developments into the following seven categories: 1. Increased Attention and Discussion 2. Prevention through Better Advance Care Planning 3. Prevention through Expanded Default Surrogate Lists 4. Statutorily Authorized Intramural Mechanisms 5. California Litigation Challenging the Team Approach 6. Public Guardianship 7. Improving Existing Guardianship Processes. (shrink)

Comment Sortir de la Terreur. by Bronislaw Baczko The Kiss of Lamourette. by Robert Darnton Les Origines Culturelles de la Revolution Francaise. by Roger Chartier Naissance du Journal Revolutionnaire. by Claude Labrosse; Pierre Retat "Mere Words," The Journal of Modern History, June 1991. by Dorinda Outram Revolutionary News: The Press in France 1789-1799. by Jeremy D. Popkin.

In recent years, the issue of accepting a higher cost per health improvement for orphan drugs has been the subject of discussion in health care policy agencies and the academic literature. This article aims to provide an analysis of broadly egalitarian arguments for and against accepting higher costs per health improvement. More specifically, we aim to investigate which arguments one should agree upon putting aside and where further explorations are needed. We identify three kinds of arguments in the literature: considerations (...) of substantial equality, formal equality, and opportunity cost. We argue that considerations of substantial equality do not support higher costs per health improvement orphan drugs, even if such considerations are considered valid. On the contrary, arguments of formal equality may support accepting a higher cost per health improvement for orphan drugs. However, in order to do so, a number of both normative and empirical issues must be resolved; these issues are identified in the article. For instance, it must be settled to what extent the opportunity cost in terms of foregone health for other patients is acceptable in order to uphold formal equality. We conclude that certain arguments can be set aside, and future focus should be put on the unresolved normative and empirical issues related to formal equality and opportunity cost. (shrink)

Bertrand Russell undertook an extended North American lecture tour in 1931 to raise funds for the Beacon Hill experimental school he operated with Dora Russell. To rectify the existing lack of scholarly analysis of the 1931 tour, this paper provides annotated transcriptions of twenty-eight letters Russell sent during the tour to Dora and to Patricia Spence, Russell’s mistress. These letters provide intriguing insights into the state of Russell’s financial and professional affairs and illuminate personal relationships he cultivated in the United (...) States and Canada. Most importantly, they document his complex marital situation at this tumultuous juncture in his life before he decided to end his relationship with Dora early in 1932 in favour of Spence. (shrink)

Orphans and vulnerable children fall under the category of children who are at risk of exposure to more stressful circumstances and receive less social assistance compared to other children. This study aims to investigate the impact of group counseling based on social intervention and psychological therapy on social support and the perceived stress growth of orphans and vulnerable children. In one special educational needs school in Nanning, China, the SSGPC was developed and implemented. Using the social support and (...) post-stress growth scales, the researchers investigated the effects of SSGPC on orphans and vulnerable children. Twenty-seven orphans and vulnerable children between the ages of nine and 12 were arbitrarily assigned to the experimental and control groups. A pre-test post-test method of quasi-experimental design was applied, with 13 participants in the experimental group and 14 in the control group. The results revealed that the intervention group had significantly higher scores for social support and post-stress growth than the control group. The SSGPC had significantly improved the levels of social support for orphans. The findings indicated that the SSGPC provided an effective way to improve social support and post-stress growth of orphans and vulnerable children. (shrink)

With the human genome mapped, and with the mapping of more than one hundred animal genomes in progress, the amount of genetic data available is increasing exponentially. This exponential increase in data is having an immediate impact on the process of drug development. By using techniques of information technology to manipulate data regarding the genes, proteins, and biochemical pathways associated with various diseases, scientists are beginning to be able to design drugs in a systematic fashion. In the context of any (...) given disease, scientists look to see whether a gene, a protein for which the gene codes, or another protein in the relevant biochemical pathway could be the “target” biological molecule, the “knocking out” of which would halt or slow the disease's progression. Once a target molecule has been identified and characterized structurally, drug therapies that would be likely to knock out this target can be identified and tested systematically. The merger of information technology and genetic technology has changed the process of pharmaceutical development so much that a new term—bioinformatics—has been coined to describe this new approach to such development. (shrink)