Norbert Paul

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.

Novel immune therapies are increasingly based on the molecular differentiation of disease patterns. The related clinical studies are thus more often characterized by the so-called adaptive study designs (umbrella or basket studies including platform studies), which are continuously adjusted based on novel results. This paper analyses new study designs beyond the often-postulated need for regulation in order to identify ethical problems based on typical structural features and to—whenever possible—suggest solutions. To do so, it addresses the following topics: the relationship between social and scientific values of a study as well as aspects of the scientific validity of new forms of evidence; the inclusion of study subjects under the condition of relative uncertainty; specific challenges in the process of ethical approval, and ethical and practical challenges in the process of informing patients and receiving informed consent. Additionally, the topic of a potential risk–benefit assessment of such therapies is addressed.

Organ donation after brain death has been practiced in China since 2003 in the absence of brain death legislation. Similar to international standards, China’s brain death diagnostic criteria include coma, absence of brainstem reflexes, and the lack of spontaneous respiration. The Chinese criteria require that the lack of spontaneous respiration must be verified with an apnea test by disconnecting the ventilator for 8 min to provoke spontaneous respiration. However, we have found publications in Chinese medical journals, in which the donors were declared to be brain dead, yet without an apnea test. The organ procurement procedures started with initiating “intratracheal intubation for mechanical ventilation after brain death,” indicating that a brain death diagnosis was not performed. The purpose of the intubation was not to resuscitate the patient but rather was directly related to facilitating the explantation of organs. Moreover, it was unmistakably stated in two of these publications that the cardiac arrest was induced in these patients without brain death determination by cold St. Thomas cardioplegic solution or other cold myocardial protection solutions. This means that the condition of these donors neither met the criteria of brain death nor that of cardiac death. In other words, the “donor organs” may well have been procured in these cases from living human beings. Thus, brain death definition is abused in China by some individuals for organ harvesting, and a systematic investigation is needed to clarify the situation of organ donation after brain death in China.

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.

AimIn 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.CaseA 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.MethodsThe PubMed database was systematically searched for reports of Carmi syndrome. Single case reports were compared to case series in terms of outcome.ResultsA total of 102 cases of Carmi syndrome were identified in the literature. Mortality of single case reports was 17 out of 27 patients (63%), while that of case series was higher at 62 out of 74 patients (84%,p = 0.036).ConclusionsSelection 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.

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.