Over 90% of the organs transplanted in China before 2010 were procured from prisoners. Although Chinese officials announced in December 2014 that the country would completely cease using organs harvested from prisoners, no regulatory adjustments or changes in China’s organ donation laws followed. As a result, the use of prisoner organs remains legal in China if consent is obtained. We have collected and analysed available evidence on human rights violations in the organ procurement practice in China. We demonstrate that the (...) practice not only violates international ethics standards, it is also associated with a large scale neglect of fundamental human rights. This includes organ procurement without consent from prisoners or their families as well as procurement of organs from incompletely executed, still-living prisoners. The human rights critique of these practices will also address the specific situatedness of prisoners, often conditioned and traumatized by a cascade of human rights abuses in judicial structures. To end the unethical practice and the abuse associated with it, we suggest to inextricably bind the use of human organs procured in the Chinese transplant system to enacting Chinese legislation prohibiting the use of organs from executed prisoners and making explicit rules for law enforcement. Other than that, the international community must cease to abet the continuation of the present system by demanding an authoritative ban on the use of organs from executed Chinese prisoners. (shrink)

BackgroundIn December 2014, China announced that only voluntarily donated organs from citizens would be used for transplantation after January 1, 2015. Many medical professionals worldwide believe that China has stopped using organs from death-row prisoners.DiscussionIn the present article, we briefly review the historical development of organ procurement from death-row prisoners in China and comprehensively analyze the social-political background and the legal basis of the announcement. The announcement was not accompanied by any change in organ sourcing legislations or regulations. As a (...) fact, the use of prisoner organs remains legal in China. Even after January 2015, key Chinese transplant officials have repeatedly stated that death-row prisoners have the same right as regular citizens to “voluntarily donate” organs. This perpetuates an unethical organ procurement system in ongoing violation of international standards.ConclusionsOrgan sourcing from death-row prisoners has not stopped in China. The 2014 announcement refers to the intention to stop the use of organs illegally harvested without the consent of the prisoners. Prisoner organs procured with “consent” are now simply labelled as “voluntarily donations from citizens”. The semantic switch may whitewash sourcing from both death-row prisoners and prisoners of conscience. China can gain credibility only by enacting new legislation prohibiting use of prisoner organs and by making its organ sourcing system open to international inspections. Until international ethical standards are transparently met, sanctions should remain. (shrink)

Das Ideal einer vorhersagenden Medizin in Kombination mit wirkungsvollen, kausalen Strategien der Prävention auf molekularer Ebene ist noch immer weit davon entfernt, klinische Realität zu werden. Es ist jedoch schon heute festzustellen, dass zwischen Medizin und Gesellschaft verhandelte Konzepte von Gesundheit in immer stärkerem Maße auf zukünftige Gesundheit ausgerichtet sind, mithin einen immer präventiveren Charakter aufweisen. Der vorliegende Beitrag untersucht die Frage, ob neue Konzepte einer prädiktiv-präventiven Medizin – insbesondere Public Health Genetics bzw. Public Health Genomics – das Kriterium der (...) Verbesserung der sozialen Erreichbarkeit von Gesundheit erfüllen. Diese Analyse wird vor dem Hintergrund der Rolle sozialer Grundwerte, insbesondere dem der Gerechtigkeit, für Funktionen der Medizin in unserer Gesellschaft einerseits sowie der Bedeutung des Wandels der medizinischen Schlüsselkonzepte „Gesundheit“ und „Krankheit“ andererseits vorgenommen. (shrink)

The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood and tissue samples (...) from indigenous populations. For various reasons, it has not been possible to execute this project in the planned scope and form to date. Nevertheless, genomic diversity research addresses complex issues which prove to be highly relevant from the perspective of research ethics, transcultural medical ethics, and cultural philosophy. In the article at hand, we discuss these ethical issues as illustrated by the HGDP. This investigation focuses on the confrontation of culturally diverse images of humans and their cosmologies within the framework of genome diversity research and the ethical questions it raises. We argue that in addition to complex questions pertaining to research ethics such as informed consent and autonomy of probands, genome diversity research also has a cultural–philosophical, meta-ethical, and phenomenological dimension which must be taken into account in ethical discourses. Acknowledging this fact, we attempt to show the limits of current guidelines used in international genome diversity studies, following this up by a formulation of theses designed to facilitate an appropriate inquiry and ethical evaluation of intercultural dimensions of genome research. (shrink)

Taking into account how much modern medicine is a function of—and at the same time has a function in—science and technology, it is hardly surprising that both the approach of science studies and the idea of the social and cultural construction of health, disease, and bodies overlap, generally and specifically, in the realm of the novel field of MEDICINE STUDIES. The work already done in science and technology studies as well as in social studies of medicine, together with the rich (...) tradition of medical history and philosophy of medicine, may be considered a solid base and a good vantage point for further analysis. By exploring the shifts of knowledge production in medicine we may be able to see the driving forces behind the ongoing development of medicine and the associated transformation of its social functions in a new light. Based on historiographical reconstructions we may come up with a much more broadly contextualized understanding of the ways in which science, technology, medicine and society interact and in what regard their mutual interdependencies have been undergoing profound changes for a number of decades. By tracing the channels through which key concepts defining the relationship of medicine and its social context are negotiated, we may further explore how our notions of health, disease, and humanity are continuously morphing alongside the incessant transformations of medicine. This editorial explores the aims and scope of MEDICINE STUDIES as a truly transdisciplinary endeavor. (shrink)

Bioethics, Volume 36, Issue 2, Page 111-112, February 2022.

Volume 19, Issue 7, July 2019, Page 47-48.

Health and illness are key concepts of medicine but they also have essential significance for each and every one of our lives. For this reason, social value systems are inevitably integrated into medicine through the concept of health and illness. In turn, medical knowledge and medico-scientific notions are perpetually incorporated into societal perceptions of health and illness. Generally, such integration usually occurs via an extended concept of health and illness, which is to be discussed in the following. To a certain (...) extent, medical and societal notions of health are mutually co-determined. The underlying dynamics deserve a closer look because if health and illness are societal and medical concepts alike this fundamentally impacts on the epistemological and the practical dimension of diagnosis and prognosis as discussed in this volume of Medicine Studies. (shrink)

ZusammenfassungDie bei Krebserkrankungen junger Frauen erforderliche Chemo- bzw. Strahlentherapie kann in der Folge bei den betroffenen Patientinnen zur Unfruchtbarkeit führen. Somit werden die Betroffenen oft gleichzeitig mit einer potentiell lebensbedrohlichen Erkrankung und einem potentiell kinderlosen Leben konfrontiert. Die derzeitigen Methoden zum Erhalt der Fertilität sind experimentell, mit therapeutischer Unsicherheit und gesundheitlichen Risiken belastet, dennoch werden sie zunehmend nachgefragt. Die mit dem Angebot fertilitätserhaltender Maßnahmen verbundene derzeitige Beratungspraxis wird in dem hier vorliegenden Beitrag aus ethischer Perspektive hinterfragt. Ausgehend von einer kritischen (...) Würdigung des nach wie vor häufig angewandten Autonomiekonzepts von Beauchamp und Childress wird diskutiert, auf welche Weise die normative Belastbarkeit der Entscheidungsfindung durch die Vulnerabilität der Patientin limitiert sein kann. Als Alternative zum Autonomiekonzept von Beauchamp und Childress wird anschließend eine Entscheidungsfindung auf der Grundlage biographischer Identität in Anlehnung an das Konzept der personalen Autonomie nach Quante erörtert. (shrink)

Since a number of years, popular and scientific interest in resilience is rapidly increasing. More recently, also neuroscientific research in resilience and the associated neurobiological findings is gaining more attention. Some of these neuroscientific findings might open up new measures to foster personal resilience, ranging from magnetic stimulation to pharmaceutical interventions and awareness-based techniques. Therefore, bioethics should also take a closer look at resilience and resilience research, which are today philosophically under-theorized. In this paper, we analyze different conceptualizations of resilience (...) and argue that especially one-sided understandings of resilience which dismiss social and cultural contexts of personal resilience do pose social and ethical problems. On a social level such unbalanced views on resilience could hide and thereby stabilize structural social injustices, and on an individual level it might even lead to an aggravation of stress-related mental health problems by overexerting the individual. Furthermore, some forms of fostering resilience could be a latent form of human enhancement and trigger similar criticisms. (shrink)

ZusammenfassungDie bei Krebserkrankungen junger Frauen erforderliche Chemo- bzw. Strahlentherapie kann in der Folge bei den betroffenen Patientinnen zur Unfruchtbarkeit führen. Somit werden die Betroffenen oft gleichzeitig mit einer potentiell lebensbedrohlichen Erkrankung und einem potentiell kinderlosen Leben konfrontiert. Die derzeitigen Methoden zum Erhalt der Fertilität sind experimentell, mit therapeutischer Unsicherheit und gesundheitlichen Risiken belastet, dennoch werden sie zunehmend nachgefragt. Die mit dem Angebot fertilitätserhaltender Maßnahmen verbundene derzeitige Beratungspraxis wird in dem hier vorliegenden Beitrag aus ethischer Perspektive hinterfragt. Ausgehend von einer kritischen (...) Würdigung des nach wie vor häufig angewandten Autonomiekonzepts von Beauchamp und Childress wird diskutiert, auf welche Weise die normative Belastbarkeit der Entscheidungsfindung durch die Vulnerabilität der Patientin limitiert sein kann. Als Alternative zum Autonomiekonzept von Beauchamp und Childress wird anschließend eine Entscheidungsfindung auf der Grundlage biographischer Identität in Anlehnung an das Konzept der personalen Autonomie nach Quante erörtert. (shrink)

ZusammenfassungBei extrem seltenen Erkrankungen bilden Fallbeschreibungen oft die einzige Datengrundlage für klinische Entscheidungen. Das Carmi Syndrom ist eine seltene Kombination von Epidermolysis bullosa und Pylorusatresie. Während der Betreuung einer betroffenen Patientin fielen unterschiedliche Wahrnehmungen über die publizierten Mortalitätsraten auf. Daraufhin wurde die Hypothese untersucht, ob sich die kumulativen Mortalitätsraten von Einzelfallbeschreibungen und Mehrfachfallbeschreibungen unterscheiden, um so eine mögliche Verzerrung der Prognose in ihren Auswirkungen auf klinische und ethische Einschätzungen des Falls zu überprüfen.Ein Mädchen wurde in der Schwangerschaftswoche 33 mit Carmi (...) Syndrom geboren. Zusammen mit dem klinischen Ethikkomitee wurden Behandlungsoptionen diskutiert, einschließlich einer palliativen Behandlung oder einer operativen Gastrojejunostomie. Da etwa ein Drittel der in Fallbeschreibungen publizierten Kinder nach einer Operation überlebten, entschieden wir uns auch vor dem Hintergrund unsicherer Prognosen für das chirurgische Vorgehen. Die Patientin starb 4 Wochen später nach multiplen Komplikationen.Die Datenbank PubMed wurde nach Publikationen über Carmi Syndrom durchsucht. Das Outcome von Einzelfallbeschreibungen wurde mit dem von Mehrfachfallbeschreibungen verglichen.Insgesamt wurden 102 Fälle von Carmi Syndrom identifiziert. Die Mortalität bei Einzelfallbeschreibungen belief sich auf 17 von 27 Fällen, während 62 von 74 Patienten von Mehrfachfallbeschreibungen starben.Beim Carmi Syndrom unterscheidet sich die publizierte Mortalität zwischen Einfach- und Mehrfachfallbeschreibungen, möglicherweise aufgrund einer Kombination von Selektions- und Publikationsbias. Die Unterschätzung der tatsächlichen Mortalitätsrate kann zu unangebracht intensiven Therapieansätzen führen. Kliniker und Ethiker sollten daher vorsichtig sein, ihre Entscheidungen bei seltenen oder neuartigen Erkrankungen auf kumulative Erfahrungen von Fallbeschreibungen, insbesondere von Einzelfallbeschreibungen, zu basieren, die positive Verläufe von Behandlungen zu betonen scheinen.Aim In case of extremely rare diseases, case reports are often the only experience to draw from for evidence-based management. Carmi syndrome is a rare, mostly lethal combination of junctional epidermolysis bullosa and pyloric atresia. During an ethical board, there were differences in perception of mortality rate. We tested the hypothesis that the cumulative mortality of single case reports is lower than that of multiple case series. Case A baby girl was born at 33 weeks gestation with Carmi syndrome. The treatment options discussed in an interdisciplinary ethics board were a palliative approach versus surgical gastrojejunostomy. Because about one third of operated children described in case reports survived, we opted for surgical treatment. The patient died a painful death 4 weeks later. Methods The PubMed database was systematically searched for reports of Carmi syndrome. Single case reports were compared to case series in terms of outcome. Results A total of 102 cases of Carmi syndrome were identified in the literature. Mortality of single case reports was 17 out of 27 patients, while that of case series was higher at 62 out of 74 patients. Conclusions Selection and publication bias may lead to inflation of survival rates in single case reports because successful cases are more likely to be published in the literature. These biases may lead to inappropriately aggressive treatment in futile cases. Clinicians should be cautious when discussing prognosis and making decisions based on the cumulative experience of case reports of extremely rare or novel diseases. (shrink)

Rationalities of Knowledge Production: On Transformations of Objects, Technologies and Information in Biomedicine and the Life Sciences. Since decades, scientific change has been interpreted in the light of of paradigm shifts and scientific revolutions. The Kuhnian interpretation of scientific change however is now more and more confronted with non-disciplinary thinking in both, science and studies on science. This paper explores how research in biomedicine and the life sciences can be characterized by different rationalities, sometimes converging, sometimes contradictory, all present at (...) the same time with varying ways of influence, impact, and visibility. In general, the rationality of objects is generated by fitting new objects and findings into a new experimental context. The rationality of hypotheses is a move towards the construction of novel explanatory tools and models. This is often inseparable meshing with the third, the technological rationaliy, in which a technology-driven, self-supporting and sometimes self-referential refinement of methods and technologies comes along with an extension into other fields. During the second and the third phase, the new and emerging fields tend to expand their explanatory reach not only across disciplinary boundaries but also into the social sphere, creating what has been characterized as “exceptionalism” . Finally, recent biomedicine and life-sciences reach a level in which experimental work becomes more and more data-driven because the technologically constructed experimental systems generate a plethora of findings which at some point start to blur the original hypotheses. For the rationality of information the materiality of research practices becomes secondary and research objects are more and more getting out of sight. Finally, the credibility of science as a practice becomes more and more dependent on consensus about the applicability and relevance of its results. The rationality of interest has become more and more characteristic for a research process which is no longer primarily determined by the desire for knowledge but by the desire for relevance. This paper explores in which ways object-driven and hypotheses-driven experimental life-sciences transformed into domains of experimental research evolving in a technologically constructed, data-driven environment in which they are subjected to constant morphing due to the forces of different rationalities. (shrink)