The phenomenon of femicide is a social tragedy, keeping on being perpetrated across time. Its consequences are deeply traumatic for children and adolescents, becoming motherless, by their father or by their agent of fatherly care. It represents a serious trauma, still needing to be adequately addressed, by the different human sciences and, especially, involving pedagogy in a careful reflection, in order to facilitate full development processes for a subject in a childhood and adolescence age. The reference, here, is to (...) a pedagogy of bereavement, grounded in attentive categories of analysis and in educative methodologies, able to strengthen life value and to activate an existential planning. It should act in the purpose of allowing each orphaned subject — due to femicide —being capable of building his/her own meaningful future, worthy to be wished and towards which addressing the own search of meaning. (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)

Feminisms in the second half of the twentieth century were reshaped by the efforts to end violence against women. Feminist activists in national and international settings invented concepts to refer to previously unquestioned societal practices as oppressive to women and changed the world by naming them. In this article, I engage with the concepts of femicide/feminicidio : the murder of women for gender reasons. I follow the history of this concept and its incursion into the broader political and public (...) sphere in Latin America. Focusing on the Mexican case, I show how the study of national feminist histories is relevant to the history of women’s activism in the international arena. This article contributes to the history of concepts by showing the linguistic distinctions and connections of feminist concepts in different sociocultural environments. Overall, this research argues in favor of studying feminist concepts with Latin American perspectives to articulate the complexity of the world today. (shrink)

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)

Violence against women is a growing health problem, especially when perpetrated in intimate relationships. Despite increasing attention, there is little comparative evidence on the different types of violence involved and there is a paucity of research on sexual femicides. This study examines cases of violence against women in northern Italy, focusing on sexual and non-sexual femicides and comparing them with rape that does not result in femicides. The sample included 500 women who were victims of sexual and non-sexual femicides, and (...) of rape. Results show sexual femicides mostly involved unknown victims or women who were prostitutes. Sexual femicidal offenders used improper weapons to kill their victims, acted in secluded locations, and fled the crime scene; their crime was more likely the result of predatory intentions, with antisociality and sexual deviance being the most significant factors related to this type of femicide. The criminal and violent pattern that characterized sexual femicides in this study shared significant similarities with the pattern of violence involved in rape. Rape victims were in fact mostly unknown, or involved in a brief relationship with their killer. When the victim was known it was more likely that the abuse occurred at home and in front of the woman’s children. Rapists were often under the effect of alcohol or drugs. Non-sexual femicides mainly involved known victims, and they were more often committed in the context of domestic disputes. It was not seldom that the long relationship between the victim and perpetrator was likely to be characterized by contentiousness, suggesting that the woman was often victim of an oppressive climate of emotional tension and domination. Morbid jealousy contributed to aggravating the tone of a controlling relationship. Non-sexual femicides bore more similarities to cases of rape within the pattern of intimate partner violence. Findings are discussed in terms of their implications for prevention and intervention. (shrink)

The criminalization of femicide in Mexico has been introduced as a tool to address the violence, discrimination, and oppression against women. The criminalization strategy has a symbolic function: going beyond deterring the crime to be used as tool for education. In that sense, the criminalization of femicide emerges as an educational tool used to introduce new principles and societal values, highlighting the reality of discrimination and subordination against women, thereby transforming an individual conduct into a watershed issue worthy (...) of collective condemnation. At the same time, official data reveals that over the past two decades, the rate of murders of women involving firearms has increased by 375%. This highlights the necessity for a comprehensive criminalization strategy that acknowledges the widespread criminal use of firearms as a significant factor in gender-related killings of women. Therefore, to raise awareness (as the femicide laws intend), every policy emanating from the State, or its affiliate institutions must incorporate a gender perspective. This includes specific programs targeting armed gender-based violence, considering the entire weapons cycle, including gun production, their use, and transfer processes. Moreover, this gender-sensitive approach must also acknowledge that the possession of small arms is linked to violent masculinities and that women, beyond being victims, might also play roles as perpetrators of armed violence. The symbolic purpose of femicide laws should then become a platform for developing further appropriate effective policies and strategies to reduce gender-based violence, with special consideration of gendered armed violence. This article will analyze the possibility for extending the symbolic purpose of femicide law to produce a gendered small arms control strategy in Mexico. Considering the educational alternative that the femicide law provides, the following paper will evaluate the criteria needed to develop a comprehensive and intersectional program for gun control in Mexico. (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)

RESUMO O objetivo do artigo é analisar como se constituem axiologicamente os discursos de réus do crime de feminicídio no Tribunal do Júri. Sob perspectiva da Análise Dialógica do Discurso (ADD), analisamos dois depoimentos de assassinos, colhidos no triênio 2018-2020. A partir das camadas componentes da dimensão extralinguística dos enunciados eleitos para análise, os resultados apontam: a) no cronotopo do Júri, os discursos dos réus se manifestam defensivo-vitimistas-acusativos; b) na esfera ideológica jurídica, constituem-se híbridos, íntimo-cotidianos, morais e legais; c) na (...) situação específica de interação discursiva, concretizam-se profórmico-hierárquico-bivocais, perpassados de relações dialógicas com leis. Já na dimensão linguística, estilístico e composionalmente, os assassinos discursivizam, em tensão, imagens negativas das mulheres vítimas, descritas como traidoras, enganadoras, ciumentas, histéricas, provocativas, desajustadas, agressivas, entre outras. Sobre si, constroem imagens de homens vitimados, perturbados e interpelados a agir. (shrink)

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)

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)

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)

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)

The purpose of this study is to look at femicide from a different perspective, even though it may seem unrelated at first. Accordingly, it investigated the existence of a link between foreign exchange, which was a major cause of the crises and unemployment, and femicide, which was the outcome of violence against women other than murder. The data were acquired from the We Will Stop Femicide Platform and the Central Bank of the Republic of Turkey in light (...) of the study’s goal. According to the findings of the investigation, there is a long-term cointegrating association between the foreign exchange rate and femicide in Turkey. After 22.6 days, the deviation induced by a 1% change in the currency rate could be balanced. This study is notable for approaching femicide from a hitherto overlooked economic perspective, as well as demonstrating that exchange rate changes are “vital” in terms of non-economic reality and public health. (shrink)

Increasing numbers of women in Turkey are murdered by their relatives, spouses or significant others. The perpetrators plead provocation for their crimes, claiming their actions are provoked by women’s initial acts which they deem to violate societal norms. Pleading provocation enables more lenient sentences. This article investigates the interplay of the legal rules and societal norms on ‘proper’ female behaviour in femicide, based on data drawn from the Journal of Legal Proceedings, which publishes select rulings of the Court of (...) Cassation – the Highest Court in the Turkish legal system – from 2004 to 2018. This article argues that there is a collision between cultural, societal norms and legal rulings in criminal law, and displays linkages between legal processes and social norms which perpetuate patriarchal structures. Accordingly, the article proposes that legal rulings on femicide reflect societal norms and traditional expectations on women’s roles in Turkish society through employing provocation defence. Consequently, law becomes complicit in femicide through provocation, and provocation could be seen as the legal system’s concession to patriarchy. (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)

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)

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)

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)

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)

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)

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.

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)

After drug and weapon trafficking, trafficking of women is one of the most lucrative businesses in the world. According to sociologists César Rey Hernández and Luisa Hernández Angueira in People Trafficking in Puerto Rico: The Challenge of Invisibility (2010), fifty percent of the victims are women and minors. This translates to 2.7 million women and girls that are enslaved in this inhuman business. Puerto Rico is no exception. One of its main problems is the slavery of Dominican women who, in (...) search of a better life in Puerto Rico, are lured to illegally migrate to the island for better opportunities. However, once in the new territory, they are imprisoned and forced to become prostitutes. In addition, femicide is another world-wide pressing issue. The World Health Organization (WHO) affirms that violence against women, between fifteen and forty-four years of age, is the leading cause of death, more than cancer, malaria, car accidents and war combined, and the report ‘A Gendered Analysis of Violent Death’, compiled by Small Arms Survey Center, fourteen out of twenty-five countries with the highest rates of femicide in the world are in Latin America and the Caribbean. This essay focuses on Life is a Sexually Transmittable Disease (2014) by Wilfredo Mattos Cintron. In this novel, the enslaved-immigrant girls and women constitute an ‘injured body’, a body that is merely diminished. The third-world prostitute’s body is the material side of male-controlled dominance, subjugation and violence. Mattos Cintron’s text denounces the ‘suffering body of women’—rape, kidnapping, beating, femicide, their exclusion from human rights and sexual relegation. Moreover, along with patriarchy’s power and the socioeconomic variables as responsible agents of creating the injured body, globalization and capitalism objectify and make women’s bodies currency of the system. (shrink)

This article challenges Nicholas Wolterstorff’s rights-based reading of Old Testament orphans by arguing that the prophetic demand for their cause not only assumes a right-order ethos championed in the Torah, but in doing so exposes the shortcomings in how justice is defined for orphaned children within current rights ideology, whether theistic or not. I present the orphan’s historical trajectory towards becoming socially vulnerable as the final stage in the transition from the kinship-redeemer justice of Israelite village clans to the (...) chesed justice of the patronage economy in emerging urban conditions. In light of these conditions, I show how the orphan laws in Deuteronomy are, counter to Wolterstorff’s claims of corruption, attempting to re-create in legal terms the kinship bond and chesed benevolence that defines the orphan’s justice as the return to a family. I argue that the prophet does not blame inherently corrupt laws, but rather blames patrons and elders who have ignored good laws and ignored right-order by forgetting their brothers’ and sons’ children. (shrink)

In recent years, the biopharmaceutical industry has seen an increase in the development of so-called orphan drugs for the treatment of rare and neglected diseases. This increase has been spurred on by legislation in the United States, Europe, and elsewhere designed to promote orphan drug development. In this article, we examine the drivers of corporate social responsibility (CSR) activities in orphan drug markets and the extent to which biopharmaceutical firms engage in these activities with a strategic orientation. The unique context (...) of orphan drugs constitutes a research opportunity to test the applicability of existing theoretical perspectives on CSR and strategic CSR. Using Schwartz and Carroll’s (Bus Ethics Q, 13(4):503–530, 2003) three-domain approach to CSR and the literature on strategic CSR as a theoretical background, we employ a combination of semi-structured interviews and a quantitative website content analysis to study practices of biopharmaceutical firms in the United States and European Union. Our findings show that both US- and EU-based companies engaged in orphan drugs development perceive their involvement as a responsible business activity beyond the economic dimension of CSR. However, for the majority of these companies their CSR activities do not qualify as strategic according to the criteria established in the literature. We also find significant differences between larger and smaller firms in their use of CSR. Based on these findings, we make several suggestions regarding orphan drug legislation and other measures that might help firms exploit strategic CSR benefits. (shrink)

Mucopolysaccharidosis type I (MPS I) is a rare lysosomal storage disorder treated with bone marrow transplantation or enzyme replacement therapy with laronidase, a high-cost orphan drug. Laronidase was approved by the US Food and Drug Administration and the European Medicines Agency in 2003 and by the Brazilian National Health Surveillance Agency in 2005. Many Brazilian MPS I patients have been receiving laronidase despite the absence of a governmental policy regulating access to the drug. Epidemiological and treatment data concerning MPS I (...) are scarce. This study aims to present a demographic profile of Brazilian patients with MPS I, describe the routes of access to laronidase in Brazil, and discuss associated ethical issues relating to public funding of orphan drugs. (shrink)

The Qur'an began to descend in the Arabian Peninsula in a period when the traditions of ignorance were dominant. In the period of ignorance, when weak and powerless people were oppressed, excluded, exploited, humiliated and subjected to various oppressions, being right was not enough. It was also necessary to have the power and strength to get his due. In such a period when the strong are generally considered right, the Qur'an considers every individual created by Allah as a valuable being. (...) As a matter of fact, there are many basic principles in the Qur'an that reinforce the feelings of brotherhood among individuals, strengthen the social fabric and increase trust in society. One of these basic principles is to defend the rights of every weak person regardless of the person's lineage, race, gender and status. In this context, in our study, first of all, the analysis of the meaning of the word of poor in the semantics of the Qur’an, the attitude of the Prophet towards poverty and wealth and which one is superior has been briefly touched upon. Then, information is given about the difference between the concepts of faqîr (the poor person), miskîn (the needy person). After dealing with the basic principles necessary for the protection and care of orphans and for them to live a virtuous life, the situation of oppressed slaves and mustad'af people in society is discussed. (shrink)

BackgroundApproximately 7% of the general population is affected by an orphan disease, which, in the United States, is defined as affecting fewer than 1 in 1500 people. Disease awareness is often low and time-to-diagnosis delayed. Different legislations worldwide have created incentives for pharmaceutical companies to develop drugs for orphan diseases. A journalistic article in Bloomberg Businessweek has claimed that pharmaceutical companies have tried marketing orphan drugs by placing a specific disease into the popular television series “House, M.D.” which features diagnostic (...) journeys and was produced between 2004 and 2012. This study aimed to describe the presentation of orphan diseases in the television series “House, M.D.”, to test in an exploratory fashion the hypothesis that treatable orphan conditions are overrepresented in “House, M.D.” and to discuss whether such marketing practices may or may not be ethical.MethodsA list of all medical cases depicted in the television series “House, M.D.” was obtained and classified as orphan or non-orphan according to the Orphanet database. The ratios of orphan diseases among all diseases, such with an orphan drug designation and such with an orphan drug approval by the FDA were then compared with conservative approximations of real world conditions (chi-squared tests for equality of proportions). STROBE criteria were respected.ResultsOut of a total of n = 181 different medical diagnoses, n = 42 (23.2%) were orphan diseases. The difference in percentages in between “House, M.D.” and reality was not statistically significant for orphan diseases overall (p = 0.96), yet was statistically significantly higher for both orphan diseases with one or more orphan drug designations (p = 0.0192) and such with one or more approved orphan drugs (p < 0.0001).ConclusionsOrphan diseases with a designated and/or approved orphan drug were overrepresented in the television series “House, M.D.” with statistical significance while orphan diseases overall were not. This may be explained by (so far) undocumented efforts of pharmaceutical companies to place their orphan drugs in the television series, as described in the article in Bloomberg Businessweek. Further research is needed into marketing practices in popular and emerging media formats. (shrink)

Millions of Ugandan children have become orphaned over the last two decades, the primary cause being the increasing HIV/AIDS epidemic. This phenomenon has prompted the government to institute numerous legal reforms. These internal reforms, implemented in a legal environment based on English common law and increasingly, international standards, greatly influence the legal inheritance rights of Ugandan orphans and their chances for prosperity. In many regions, however, the traditional local mores trump both national and global standards, meaning that while Ugandan (...) parents may own appreciable property upon death, their children rarely receive it, but rather fall victim to “property grabbing” or mismanagement by relatives. The key impediments to solving this problem and to Uganda’s adoption of a more egalitarian system of inheritance include the ineffectiveness of local councils, the inadequate enforcement of the Children Stature, and the heavily centralized and cumbersome structure of the national government. Therefore, significant reforms are needed, including the pronouncement of a national policy regarding orphans, the reduction of national reliance on NGOs, and the restoration of a national legislative effort to codify orphans’ property rights. (shrink)

The law ordinarily recognises the woman who gives birth as the mother of a child, but in certain jurisdictions, it will recognise the commissioning couple as the legal parents of a child born to a commercial surrogate. Some commissioning parents have, however, effectively abandoned the children they commission, and in such cases, commercial surrogates may find themselves facing unexpected maternal responsibility for children they had fully intended to give up. Any assumption that commercial surrogates ought to assume maternal responsibility for (...) abandoned children runs contrary to the moral suppositions that typically govern contract surrogacy, in particular, assumptions that gestational carriers are not ‘mothers’ in any morally significant sense. In general, commercial gestational surrogates are almost entirely conceptualised as ‘vessels’. In a moral sense, it is deeply inconsistent to expect commercial surrogates to assume maternal responsibility simply because commissioning parents abandon children for one reason or another. We identify several instances of child abandonment and discuss their implications with regard to the moral conceptualisation of commercial gestational surrogates. We conclude that if gestational surrogates are to remain conceptualised as mere vessels, they should not be expected to assume responsibility for children abandoned by commissioning parents, not even the limited responsibility of giving them up for adoption or surrendering them to the state. (shrink)

Like many humans in the wake of genocide and war, most wildlife today has sustained trauma. High rates of mortality, habitat destruction, and social breakdown precipitated by human actions are unprecedented in history. Elephants are one of many species dramatically affected by violence. Although elephant communities have processes, rituals, and social structures for responding to trauma—grieving, mourning, and socialization—the scale, nature, and magnitude of human violence have disrupted their ability to use these practices. Absent the cultural, carrier groups who traditionally (...) lead and teach these healing practices, humans must assume the role. Trauma theory has brought attention to victims' severe, sustained psychological damage. Looking through the lens of trauma theory provides a better understanding of how systematic violence has affected individuals and groups and how the pervasive nature of traumatic events affects human-nonhuman animal relationships. The framing of recent trauma theory compels conservationists to create new relationships—neither anthropocentric nor powerbased—with nonhuman animals. The David Sheldrick Wildlife Trust, Kenya, shows how humans, taking on the role of interspecies witness, bring orphan elephants back to health and help re-build elephant communities shattered by genocide. (shrink)

Directed cell migration is a fundamental component of numerous biological systems and is critical to the pathology of many diseases. Although the importance of secreted chemoattractant factors in providing navigational cues to migrating cells bearing specific chemoattractant receptors is now well‐established, how the function of these factors is regulated is not so well understood and may be of key importance to the design of new therapeutics for numerous human diseases. While regulation of migration clearly takes place on a number of (...) different levels, it is becoming clear that so‐called ‘atypical’ receptors play a role in scavenging, or altering the localisation of, chemoattractant molecules such as chemokines and complement components. These receptors do this through binding and/or internalising their chemoattractant ligands without activating signal transduction cascades leading to cell migration. The atypical chemokine receptor family currently comprises the receptors D6, DARC and CCX‐CKR. In this review, we discuss the evidence from in vitro and in vivo studies that these receptors play a role in regulating cell migration, and speculate that other orphan receptors may also belong to this family. Furthermore, with the advent of gene therapy on the horizon, the therapeutic potential of these receptors in human disease is also considered. BioEssays 29: 237–247, 2007. © 2007 Wiley Periodicals, Inc. (shrink)

Women who are abused by their male intimate partners incur many costs, ranging in severity from fleeting physical pain to death. Previous research has linked the presence of children sired by a woman’s previous partner to increased risk of woman abuse and to increased risk of femicide. The current research extends this work by securing data from samples of 111 unabused women, 111 less severely abused women, 128 more severely abused women, and 26 victims of intimate partner femicide (...) from the Chicago Women’s Health Risk Study to document an ordinal trend in the risk of experiencing more severe forms of violence for women who have children in the household sired by a previous partner. The discussion addresses two potential explanations for this trend and highlights directions for future research. (shrink)

Democratic societies find it difficult to reach consensus concerning principles for healthcare distribution in the face of resource constraints. At the same time the need for legitimacy of allocation decisions has been recognised. Against this background, the National Institute for Health and Clinical Excellence (NICE) aspires to meet the principles of procedural justice, specifically the conditions of accountability for reasonableness as espoused by Daniels and Sabin, that is, publicity, relevance, revisions and appeal, and enforcement. Although NICE has adopted a highly (...) standardised approach and continuously publishes key documents on its website, its technology appraisal programme does not fulfil the publicity condition of accountability for reasonableness. Economic models are not made sufficiently transparent to enable public scrutiny, and decision criteria other than cost-effectiveness remain enigmatic. NICE’s reliance on cost-utility analysis and “plausible” cost-per-quality-adjusted life year (QALY) benchmarks further raises serious issues with regard to the relevance condition of accountability for reasonableness. This is illustrated by counterintuitive cost-per-QALY rankings that are difficult to justify using reflective equilibrium methods, and by the current debate surrounding expensive therapies for rare diseases (“orphan” treatments). In addition, an excessive focus on QALYs may stand in the way of exploiting the best available effectiveness evidence. The NICE mechanism for revision and appeals is also more restrictive than provided in accountability for reasonableness. As to the enforcement condition, no effective quality assurance processes are in place for technology assessments, and implementation of guidance remains imperfect. NICE, despite impressive efforts, appears to have a long way to go before meeting the conditions of accountability for reasonableness. (shrink)

Nonfeminist accounts of post-menopausal IVF reject the practice on four main grounds: I) scarcity of resources; 2) fairness; 3) the “inappropriateness” of post-menopausal motherhood; and 4) concerns for orphaned children. I argue that these grounds are insufficient for denying post-menopausal women IVF access. I then suggest that a feminist evaluation of the practice is more compelling; ultimately, however, we have no strong grounds for a policy denying post-menopausal women access to this technology.

Making Things Up By BennettKarenOxford University Press, 2018. xii + 260 pp.

This paper argues that at least one of the following propositions is true: (1) the human species is very likely to go extinct before reaching a “posthuman” stage; (2) any posthuman civilization is extremely unlikely to run a significant number of simulations of their evolutionary history (or variations thereof); (3) we are almost certainly living in a computer simulation. It follows that the belief that there is a significant chance that we will one day become posthumans who run ancestor-simulations is (...) false, unless we are currently living in a simulation. A number of other consequences of this result are also discussed. (shrink)

: Nonfeminist accounts of post-menopausal IVF reject the practice on four main grounds: 1) scarcity of resources; 2) fairness; 3) the "inappropriateness" of post-menopausal motherhood; and 4) concerns for orphaned children. I argue that these grounds are insufficient for denying post-menopausal women IVF access. I then suggest that a feminist evaluation of the practice is more compelling; ultimately, however, we have no strong grounds for a policy denying post-menopausal women access to this technology.

Hybrid metaethical theories attempt to incorporate essential elements of expressivism and cognitivism, and thereby to accrue the benefits of both. Hybrid theories are often defended in part by appeals to slurs and other pejoratives, which have both expressive and cognitivist features. This paper takes far more seriously the analogy between pejoratives and moral predicates. It explains how pejoratives work, identifies the features that allow pejoratives to do that work, and models a theory of moral predicates on those features. The result (...) is an expressivist theory that, among other advantages, is immune to embedding difficulties and avoids an overlooked difficulty concerning attitude ascriptions that is lethal to most other hybrid theories. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Books ReceivedAt the Eleventh Hour: The Biography of Swami Rama. By Pandit Rajmani Tigunait, Ph.D. Honesdale, Pennsylvania: Himalayan Institute Press, 2002. Pp. 427. Hardcover $18.95.Awakening and Insight: Zen Buddhism and Psychotherapy. Edited by Polly Young Eisendrath and Shoji Muramoto. Hove, England: Brunner-Routledge, 2002. Pp. xii + 275. Paper $24.95.Beyond Metaphysics Revisited: Krishnamurti and Western Philosophy. By J. Richard Wingerter. Lanham, Maryland: University Press of America, 2002. Pp. vii + (...) 391. Hardcover $71.00.Bhāmatī and Vivaraṇa Schools of Advaita Vedānta: A Critical Approach. By Pulasth Soobah Roodurmun, foreword by V. N. Jha, and edited by Kanshi Ram. New Delhi: Motilal Banarsidass Publishers, 2002. Pp. xv + 297. Price not given.A Bibliography of Ananda Kentish Coomaraswamy. By James S. Crouch. New Delhi: Indira Gandhi National Centre for the Arts and Manohar Publishers and Distributors, 2002. Pp. 430. Price not given.Crisis Theory and World Order: Heideggerian Reflections. By Norman K. Swazo. Albany: State University of New York Press, 2002. Pp. x + 289. Hardcover $78.50. Paper $26.95.Devotional Literature in South Asia: Current Research 1997-2000: Proceedings of the Eighth International Conference on Early Literature in New Indo-Aryan Languages, Leuven, 23-26 August 2000. Edited by Winand M. Callewaert and Dieter Taillieu. New Delhi: Manohar Publishers and Distributors, 2002. Pp. xxii + 324. Price not given.Dharma Bell and Dhāraṇī Pillar: Li Po's Buddhist Inscriptions. By Paul W. Kroll. Kyoto: Italian School of East Asian Studies, 2001. Pp. viii + 95. Price not given.Essays on the Moral Philosophy of Mengzi. Edited, with introduction, by Xiusheng Liu and Philip J. Ivanhoe. Indianapolis and Cambridge: Hackett Publishing Company, 2002. Pp. xiv + 249. Hardcover $39.95. Paper $16.95. Professional price $12.95.Ethical Questions: East and West. Edited by Bina Gupta. Lanham, Maryland: Rowman and Littlefield Publishers, 2002. Pp. vi + 279. Hardcover $70.00. Paper $26.95.Ethical Relativism and Universalism. By Saral Jhingran. New Delhi: Motilal Banarsidass Publishers, 2001. Pp. xiv + 385. Price not given.Genius-In Their Own Words: The Intellectual Journeys of Seven Great 20th Century [End Page 431] Thinkers. Edited and with introduction by David Ramsay Steele, foreword by Arthur C. Danto. Chicago and La Salle: Open Court, 2002. Pp. xxii + 366. Paper $24.95.The Hatha Yoga Pradipika. The original Sanskrit by Svatmarama, an English translation by Brian Dana Akers. Woodstock, New York: YogaVidya.com, 2002. Pp. xii + 115. Hardcover $19.95. Paper $11.95.Human Rights and Chinese Thought: A Cross-Cultural Inquiry. By Stephen C. Angle. New York: Cambridge University Press, 2002. Pp. xviii + 285. Hardcover $65.00. Paper $23.00.Indestructible Truth: The Living Spirituality of Tibetan Buddhism. By Reginald A. Ray. Boston and London: Shambhala Publications, 2002. Pp. x + 495. Paper $17.95.Introduction to Eastern Thought. By Marietta Stepaniants. Edited by James Behuniak and translated by Rommela Kohanovskaya. Lanham, Maryland: AltaMira Press, a division of Rowman and Littlefield Publishers, 2002. Pp. xiv + 293. Hardcover $69.00. Paper $24.95.Jainism and Ecology: Nonviolence in the Web of Life. Edited by Christopher Key Chapple. Cambridge: Harvard University Press for the Center for the Study of World Religions, 2002. Pp. xliv + 252. Hardcover $32.95. Paper $22.95.Mediating the Power of Buddhas: Ritual in the Mañjuśrīmūlakalpa. By Glenn Wallis. Albany: State University of New York Press, 2002. Pp. xiii + 263. Hardcover $86.50. Paper $29.95.Methodology in Religious Studies: The Interface with Women's Studies. Edited by Arvind Sharma. Albany: State University of New York Press, 2002. Pp. xi + 253. Hardcover $78.50. Paper $26.95.Persons and Valuable Worlds: A Global Philosophy. By Eliot Deutsch. Lanham, Maryland: Rowman and Littlefield Publishers, 2002. Pp. x + 309. Hardcover $80.00. Paper $34.95.Philosophy and Art in Gurdjieff's Beelzebub: A Modern Sufi Odyssey. By Anna T. Challenger. Amsterdam and New York: Editions Rodopi B.V., 2002. Pp. xi + 145. Paper EUR 27,00, U.S. $25.00.The Pratyabhijñā Philosophy. By G. V. Tagare. New Delhi: Motilal Banarsidass Publishers, 2002. Pp. xii + 165. Price not given.Reflections on Reality: The Three Natures and Non-Natures in the Mind-Only School: Dynamic Responses to ong-ka-a's The... (shrink)

SummarySkepticism is very powerful and persuasive, yet it is not the basis upon which the reasonable person operates in the world. In this paper I've tried to articulate the criteria whereby the reasonable person determines what is a fact and determines that she/he knows. I've taken six areas where knowledge is a matter of contention between the reasonable person and the skeptic and constructed dialogues between the two. The six areas are things not directly perceived mathematical and tautological statements the (...) distinction between dream and reality other minds and the contents of other minds facts of the past both historical and invividual “scientific facts”. My position is that of the reasonable person.RésuméLe scepticisme est très puissant et persuasif, mais ce n'est pas une base à partir de laquelle la personne raisonnable agit dans le monde. Dans cet article, j'ai essayé?on; énoncer les critères selon lesquels la personne raisonnable détermine ce qu'est un fait et ce qu'elle sait. J'ai pris six domaines où la connaissance est objet de contestation entre la personne raisonnable et le sceptique et ai imaginé un dialogue entre eux. Ces six domaines sont: les choses non directement perçues les énoncés mathématiques et tautologiques la distinction entre rêve et réalité les autres esprits et leur contenu les faits appartenant au passé individuel et historique les faits scientifiques. Ma propre position s'identifie avec celle de la personne raisonnable.ZusammenfassungDer Skeptizismus mag zwar eine starke und überzeugende Doktrin sein, er bietet jedoch keine Grundlage für vernünftige Handlungen in der Welt an. Es wird versucht, die Kriterien anzugeben, aufgrund von welchen eine vernünftige Person bestimmt, was eine Tatsache ist und was sie weiss. Es werden sechs Bereiche angegeben, in welchen sich die vernünftige Person mit dem Skeptiker über Erkenntnisfragen in einen Konflikt verwickeln kann: Dinge, die nicht unmittelbar wahrgenommen werden mathematisch und tautologische Aussagen, die Unterscheidung zwischen Traum und Wirklichkeit, andere Geister und fremdpsychische Inhalte, Tatsachen der Vergangenheit , wissenschaftliche Tatsachen. Der Position der vernünftigen Person wird der Vorzug gegeben. (shrink)