David Rodriguez

This book offers a theoretical and practical overview of the specific ethical and legal issues in pediatric organ transplantation. Written by a team of leading experts, Ethical Issues in Pediatric Organ Transplantation addresses those difficult ethical questions concerning clinical, organizational, legal and policy issues including donor, recipient and allocation issues. Challenging topics, including children as donors, donation after cardiac death, misattributed paternity, familial conflicts of interest, developmental disability as a listing criteria, small bowel transplant, and considerations in navigating the media are discussed. It serves as a fundamental handbook and resource for pediatricians, transplant health care professionals, trainees, graduate students, scholars, practitioners of bioethics and health policy makers.

Despite continuing controversies regarding the vital status of both brain-dead donors and individuals who undergo donation after circulatory death (DCD), respecting the dead donor rule (DDR) remains the standard moral framework for organ procurement. The DDR increases organ supply without jeopardizing trust in transplantation systems, reassuring society that donors will not experience harm during organ procurement. While the assumption that individuals cannot be harmed once they are dead is reasonable in the case of brain-dead protocols, we argue that the DDR is not an acceptable strategy to protect donors from harm in DCD protocols. We propose a threefold alternative to justify organ procurement practices: (1) ensuring that donors are sufficiently protected from harm; (2) ensuring that they are respected through informed consent; and (3) ensuring that society is fully informed of the inherently debatable nature of any criterion to declare death

It was only after James P. Lovette's death, in 2006, that I discovered that the twenty‐four‐year‐old colleague and friend with whom I had spent so many afternoons debating issues in organ transplantation had been the first successful child heart transplantee in the world and one of the longest‐living survivors of a second transplant. During the years we met, he never even hinted at the fact that three different hearts had beaten in his chest. The revelation that his life had been an almost uninterrupted chain of medical challenges suddenly made me appreciate his quirkiness in a whole new light.Organ transplantation crudely exemplifies a traditional moral dilemma between means and ends: in order to save a life, someone else has to die. Bioethicists involved in this field have the role of identifying the ethical issues surrounding organ donation and helping others to argue in an intelligible and convincing way. In my view, bioethicists have the obligation to foster a discussion as open and transparent as possible on these matters. Still, I sometimes fear that I may be helping to cause unnecessary harms to potential recipients who are desperately waiting for a vital organ. Scholars would be chillingly cold if their quest for truth systematically came at the cost of lives lost. Every life can be meaningful and provide meaning to many others. This is true even with organ recipients, who often have short lives full of considerable suffering.

The ever‐increasing demand for organs led Spain, France, and other European countries to promote uncontrolled donation after circulatory determination of death (uDCDD). For the same reason, New York City has recently developed its own uDCDD protocol, which differs from European programs in some key ways. The New York protocol incorporates a series of technical and management improvements that address some practical problems identified in response to European uDCDD protocols. However, the more fundamental issue of whether uDCDD donors are dead when organs are procured remains problematic for the New York City protocol and, indeed, for all uDCDD protocols. In the United States, two amendments to the legal criteria of death have been suggested to avoid a formal violation of the dead donor rule in DCDD protocols: first, replacing the requirement “irreversible” with the weaker term “permanent,” and second, using the term “circulatory” instead of “cardiac” to identify the key function that must be lost to declare death. While intended to facilitate controlled DCDD, these modifications create a problem for uDCDD protocols: if extracorporeal membrane oxygenation is introduced to preserve the organs, then circulation is restored after death is declared. In this issue of the Hastings Center Report, Kevin Munjal and colleagues call for a new ethical construct and policy so that uncontrolled and controlled DCDD can coexist.

Several studies have explored differences between North American and European doctor patient relationships. They have focused primarily on differences in philosophical traditions and historic and socioeconomic factors between these two regions that might lead to differences in behaviour, as well as divergent concepts in and justifications of medical practice. However, few empirical intercultural studies have been carried out to identify in practice these cultural differences. This lack of standard comparative empirical studies led us to compare differences between France and the USA regarding end-of-life decision-making. We tested certain assertions put forward by bioethicists concerning the impact of culture on the acceptance of advance directives in such decisions. In particular, we compared North American and French intensive care professional's attitudes toward: advance directives, and the role of the family in decisions to withhold or withdraw life-support.

La normalización de la precariedad entre las personas jóvenes está entrando en lo que parece una nueva fase. De la mano de, entre otros factores, los discursos empresariales y la teoría del capital humano, estamos asistiendo a una vuelta de tuerca en la presión sobre la juventud: ya no basta con la búsqueda «activa» de empleo, ahora hay que invertir en uno mismo como «empresario de sí mismo» y, en esta lógica, si es preciso hay que optar por la «movilidad internacional». Presentamos una revisión teórica y conceptual alrededor de lo que se conoce como fuga de cerebros y su justificación discursiva. Estamos ante un proceso que probablemente dejará una marca importante en una generación que ha visto truncadas sus posibilidades de transición a situaciones estables, idealmente identificadas con el mundo adulto.

En los últimos treinta años se ha transitado desde una concepción del capital humano como una macromagnitud económica a una idea de capital humano corporeizada en el individuo. Hemos asistido a una progresiva infiltración de dicha ideología del capital humano también en la vida de la juventud precaria. Nos centramos aquí en los jóvenes universitarios, para quienes el capital humano, ya de forma hegemónica, dirige y marca sus recorridos laborales y vitales. El análisis de los discursos de estos jóvenes nos permitirá explorar desde la imposición de la lógica de la movilidad laboral, a la sujeción a las formas de "emprendedor de sí mismo" y a la normalización, como parte del proceso de incorporación de capital humano, de formas de empleo progresivamente al margen de los derechos y garantías laborales clásicas del trabajo salariado.

En los últimos treinta años se ha transitado desde una concepción del capital humano como una macromagnitud económica a una idea de capital humano corporeizada en el individuo. Hemos asistido a una progresiva infiltración de dicha ideología del capital humano también en la vida de la juventud precaria. Nos centramos aquí en los jóvenes universitarios, para quienes el capital humano, ya de forma hegemónica, dirige y marca sus recorridos laborales y vitales. El análisis de los discursos de estos jóvenes nos permitirá explorar desde la imposición de la lógica de la movilidad laboral, a la sujeción a las formas de "emprendedor de sí mismo" y a la normalización, como parte del proceso de incorporación de capital humano, de formas de empleo progresivamente al margen de los derechos y garantías laborales clásicas del trabajo salariado.In the last thirty years it has been gone from a conception of the human capital as an economic macro magnitude to an idea of human capital embodied in the individuals. We have been witnesses of the progressive infiltration of this ideology of the human capital also in the life of precarious youth. We focus in the university young people, for those who the human capital, already of hegemonic form, directs and marks its labour and vital routes. The analysis of the discourses of these young people will allow us to explore the imposition of the logic of labour mobility, the subjection to the forms of «entrepreneur of itself» and also the normalization of forms of work progressively excluded from the rights and classic labour guarantees as a part of the process of incorporation of human capital.

Resumen: En el marco del estudio de los discursos gerenciales, se destacan en el presente texto algunas de las aportaciones de Medina-Vicent, especialmente el análisis de los procesos de individualización y despolitización de mensajes que entroncarían con las reivindicaciones del feminismo. En este contexto, se propone la incorporación del concepto foucaultiano de dispositivo para el estudio de los elementos que contribuyen a la difusión de los discursos gerenciales. Este concepto podría ser de utilidad en la investigación empírica, proporcionando una herramienta conceptual para estudiar como un sistema homogéneo de relaciones de saber y poder los distintos elementos que conformarían el dispositivo gerencial.: Within the framework of the study of managerial discourses, this text highlights some of the contributions of Medina-Vicent, especially the analysis of the processes of individualization and depoliticization of messages that are linked to the claims of feminism. In this context, the incorporation of the Foucauldian concept of dispositif is proposed for the study of the elements that contribute to the diffusion of managerial discourses. This concept could be useful in the empirical analysis, as well as providing a conceptual tool to study the different elements that make up the managerial dispositif as a homogeneous system of knowledge and power relations. Palabras clave: gerencialismo, dispositivo, herramientas disciplinarias. Keywords: managerialism, dispositif, disciplinary instruments.

Several studies have explored differences between North American and European doctor patient relationships. They have focused primarily on differences in philosophical traditions and historic and socioeconomic factors between these two regions that might lead to differences in behaviour, as well as divergent concepts in and justifications of medical practice. However, few empirical intercultural studies have been carried out to identify in practice these cultural differences. This lack of standard comparative empirical studies led us to compare differences between France and the USA regarding end-of-life decision-making. We tested certain assertions put forward by bioethicists concerning the impact of culture on the acceptance of advance directives in such decisions. In particular, we compared North American and French intensive care professional's attitudes toward: (1) advance directives, and (2) the role of the family in decisions to withhold or withdraw life-support

In Italy, judicial and extrajudicial requests for paternity testing have increased in recent years. A retrospective analysis of such private extrajudicial requests received by the legal medicine unit of the Department of Environmental Medicine and Public Health of Padua University was conducted to identify problem areas most helpful in determining whether to accept private parties’ requests for paternity testing. Such testing is most delicate when a presumptive father may be seeking to disown paternity and when testing is wanted without the consent of a member of the mother–child–father triangle. Tests that could establish paternity where none has been recognised are less problematic, as the child will not lose out. Legal and ethical–deontological aspects of consent, of the protection of minors and of children’s and parents’ need for follow-up interviews to deal with the outcome of such testing are carefully considered by the Padua University team when deciding whether to accept a request for testing. It is argued that because such issues are not dealt with by mail-order laboratories, the use of such services is inappropriate

El libro Las generaciones que llegaron tarde presenta los resultados de un trabajo sobre los usos, las estrategias y las percepciones de las generaciones mayores en relación a las tecnologías de la información y de la comunicación. Las apropiaciones de los y las mayores en los ámbitos laboral, relacional y familiar, así como en el ocio, son objeto de análisis a partir de entrevistas en profundidad. Entre los principales resultados destaca el que, a pesar de la gran capacidad de adaptación de las personas mayores a los nuevos entornos digitales, la sociedad informacional sigue avanzando a ritmos desiguales: mientras penetra y media en buena parte de las dinámicas sociales, sigue dejando en los márgenes a una parte de la población perteneciente a las generaciones de más edad.

Uncontrolled donation after circulatory death, which occurs when an individual has experienced unexpected cardiac arrest, usually not in a hospital, generates both excitement and concern. On the one hand, uDCD programs have the capacity to significantly increase organ donation rates, with good transplant outcomes—mainly for kidneys, but also for livers and lungs. On the other hand, uDCD raises a number of ethical challenges. In this essay, we focus on an issue that is central to all uDCD protocols: When should we cease resuscitation and shift to organ preservation? Do current uDCD protocols prematurely consider as potential donors patients who could still have some chances of meaningful survival? Can the best interest of patients be fostered once they are considered and treated as potential donors?

Background: This research explores how public awareness and attitudes toward donation and transplantation policies may contribute to Spain's success in cadaveric organ donation. Materials and Methods: A representative sample of 813 people residing in Andalusia (Southern Spain) were surveyed by telephone or via Internet between October and December 2018. Results: Most participants trust Spain's donation and transplantation system (93%) and wish to donate their organs after death (76%). Among donors, a majority have expressed their consent (59%), and few nondonors have expressed their refusal (14%). Only a minority are aware of the presumed consent system in force (28%) and feel sufficiently informed regarding the requirements needed to be an organ donor (16%). Participants mainly consider that relatives should represent the deceased's preferences and be consulted when the deceased's wishes are unknown, as is the case in Spain. Conclusion: Public trust in the transplant system may contribute to Spain's high performance in organ donation. High levels of societal support toward organ donation and transplantation do not correspond with similar levels of public awareness of donation and transplantation policies in Spain.

Alireza Bagheri supports a policy on organ procurement where individuals could choose their own definition of death between two or more socially accepted alternatives. First, we claim that such a policy, without any criterion to distinguish accepted from acceptable definitions, easily leads to the slippery slope that Bagheri tries to avoid. Second, we suggest that a public discussion about the circumstances under which the dead donor rule could be violated is more productive of social trust than constantly moving the line between life and death

Background Consent policies for post-mortem organ procurement (OP) vary throughout Europe, and yet no studies have empirically evaluated the ethical implications of contrasting consent models. To fill this gap, we introduce a novel indicator of governance quality based on the ideal of informed support, and examine national differences on this measure through a quantitative survey of OP policy informedness and preferences in seven European countries. Methods Between 2017–2019, we conducted a convenience sample survey of students (n = 2006) in Austria (AT), Belgium (BE), Denmark (DK), Germany (DE), Greece (GR), Slovenia (SI) and Spain (ES), asking participants about their donation preferences, as well as their beliefs and views about the policy in place. From these measures, we computed indices of informedness, policy support, and fulfilment of unexpressed preferences, which we compared across countries and consent systems. Results Our study introduces a tool for analyzing policy governance in the context of OP. Wide variation in policy awareness was observed: Most respondents in DK, DE, AT and BE correctly identified the policy in place, while those in SI, GR and ES did not. Respondents in opt-out countries (AT, BE, ES and GR) tended to support the policy in place (with one exception, i.e., SI), whereas those in opt-in countries (DE and DK) overwhelmingly opposed it. These results reveal stark differences in governance quality across countries and consent policies: We found a preponderance of informed opposition in opt-in countries and a general tendency towards support–either informed or uninformed–in opt-out countries. We also found informed divergence in opt-in countries and a tendency for convergence–either informed or uninformed–among opt-out countries. Conclusion Our study offers a novel tool for analyzing governance quality and illustrates, in the context of OP, how the strengths and weaknesses of different policy implementations can be estimated and compared using quantitative survey data.

This paper analyses the arguments for and against what we have called automatic organ procurement model in relation to the organs of the deceased. For this purpose, this work provides empirical evidence to assess the potential impact of this model on donation rates and on public opinion. Specifically, we examine first the reasons supporting this model, with special reference to utilitarian and justice arguments. On the other hand, we analyse both the approaches based on the violation of pre mortem and post mortem interests opposing this theoretical model and the rejection the model would generate in the population. Finally, we point out the aspects that, in our opinion, should be exhaustively regulated if this model were implemented. In particular, we refer to the legal status of the human body, the treatments for end-of-life patients, the incentives for health professionals and the recognition of the right to conscientious objection

Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection were performed by two or more independent reviewers for each record. Results: Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background. Conclusions: Public views on the authority of the family in organ donation decision-making require further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation.

Organ shortage constitutes an unsolved problem for every country that offers transplantation as a therapeutic option. Besides the largely implemented donation model and the eventually implemented market model, a theorized automatic organ procurement model has raised a rich debate in the legal, medical and bioethical community, since it could show a higher potential to solve organ shortage. In this paper, we study the main arguments for and against this model. We show how, in the light of empirical data extracted from countries with a universal health care system, its implementation could lead to a positive impact on organ procurement rates. Three factors are envisioned as fundamental in the comprehension and a possible regulation of the automatic organ procurement model: the lack of recognition of the conscientious objection, the preservation of the right to choose end of life conditions, and the need to avoid incentives for families or healthcare professionals.

Most analyses of international wildlife law focus on the specifics of implementing particular policies, while there is less engagement with the fundamental philosophies underpinning international conventions. In this article, I argue that a philosophical analysis can achieve a deeper understanding of IWL by helping to identify, assess and compare worldviews reflected in these instruments. Additionally, a philosophical analysis can make visible how international wildlife conventions shape human perceptions of and attitudes towards nature. Based on these premises, I subject two international wildlife conventions that are central to wildlife management in Europe, namely, the Bern Convention on the Conservation of European Wildlife and Natural Habitats and the Convention on International Trade in Endangered Species of Wild Fauna and Flora, to philosophical scrutiny. I argue, first, that the philosophical underpinnings of these instruments are in contention, indicating that their policies might well counteract each other. Second, I postulate that the broad significance of this contention is that the resulting ambivalence when IWL instruments are involved in the same conversation and about the same territoriality results in such high discretional powers for states that they stop being bounded by the conventions’ substratum and can limit themselves to only following the formalities.

Since 1968, the irreversible loss of functioning of the whole brain, called brain death, is assimilated to individual’s death. The almost universal acceptance of this neurological criterion of death had decisive consequences for the contemporary medicine, such as the withdrawal of mechanical ventilation in these patients and organ retrieval for transplantation. The new criterion was successfully accepted in part because the assimilation of brain death state to death was presented by medicine --and acritically assumed by most of societies-- as a scientific and objective fact. Nevertheless, many people do not think that the patients suffering brain death are actually dead. We show here that those people are not necessarily wrong. It can be argued that, in fact, the justification of the neurological criterion is not scientific but moral. We outline the thesis that the problem surrounding the vital status of brain dead patients is due to a confusion between factual and normative questions. Furthermore, we claim that the donation of organs and the withdrawal of life-support could be ethically acceptable even if the patients suffering brain death are considered as alive. As an alternative to the dead donor rule, we propose a justification for organ donation of brain-dead patients based on the (moral) concepts of harm and consent : what truly justifies the procurement of organs on those patients is not that they are dead, but that they wish to donate their organs and that, since they have irreversibly lost their brain, they cannot be harmed.

Families play an essential role in deceased organ procurement. As the person cannot directly communicate his or her wishes regarding donation, the family is often the only source of information regarding consent or refusal. We provide a systematic description and analysis of the different roles the family can play, and actions the family can take, in the organ procurement process across different jurisdictions and consent systems. First, families can inform or update healthcare professionals about a person’s donation wishes. Second, families can authorize organ procurement in the absence of deceased’s preferences and the default is not to remove organs, and oppose donation where there is no evidence of preference but the default is to presume consent; in both cases, the decision could be based on their own wishes or what they think the deceased would have wanted. Finally, families can overrule the known wishes of the deceased, which can mean preventing donation, or permitting donation when the deceased refused it. We propose a schema of 4 levels on which to map these possible family roles: no role, witness, surrogate, and full decisional authority. We conclude by mapping different jurisdictions onto this schema to provide a more comprehensive understanding of the consent system for organ donation and some important nuances about the role of families. This classificatory model aims to account for the majority of the world’s consent systems. It provides conceptual and methodological guidance that can be useful to researchers, professionals, and policymakers involved in organ procurement.