Nadia Primc

The organ donation and transplantation (ODT) system heavily relies on the willingness of individuals to donate their organs. While it is widely believed that public trust plays a crucial role in shaping donation rates, the empirical support for this assumption remains limited. In order to bridge this knowledge gap, this article takes a foundational approach by elucidating the concept of trust within the context of ODT. By examining the stakeholders involved, identifying influential factors, and mapping the intricate trust relationships among trustors, trustees, and objects of trust, we aim to provide a comprehensive understanding of trust dynamics in ODT. We employ maps and graphs to illustrate the functioning of these trust relationships, enabling a visual representation of the complex interactions within the ODT system. Through this conceptual groundwork, we pave the way for future empirical research to investigate the link between trust and organ donation rates, informed by a clarified understanding of trust in ODT. This study can also provide valuable insights to inform interventions and policies aimed at enhancing organ donation rates.

Ambient Assisted Living (AAL) refers to technologies that track daily activities of persons in need of care to enhance their autonomy and minimise their need for assistance. New technological developments show an increasing effort to integrate automated emotion recognition and regulation (ERR) into AAL systems. These technologies aim to recognise emotions via different sensors and, eventually, to regulate emotions defined as “negative” via different forms of intervention. Although these technologies are already implemented in other areas, AAL stands out by its tendency to enable an inconspicuous 24-hour surveillance in the private living space of users who rely on the technology to maintain a certain degree of independence in their daily activities. The combination of both technologies represents a new dimension of emotion recognition in a potentially vulnerable group of users. Our paper aims to provide an ethical contextualisation of the novel combination of both technologies. We discuss different concepts of emotions, namely Basic Emotion Theory (BET) and the Circumplex Model of Affect (CMA), that form the basis of ERR and provide an overview over the current technological developments in AAL. We highlight four ethical issues that specifically arise in the context of ERR in AAL systems, namely concerns regarding (1) the reductionist view of emotions, (2) solutionism as an underlying assumption of these technologies, (3) the privacy and autonomy of users and their emotions, (4) the tendency of machine learning techniques to normalise and generalise human behaviour and emotional reactions.

Zusammenfassung Behandlungsentscheidungen bei Frühgeburten an der Grenze der Lebensfähigkeit stellen eine große Herausforderung dar. In der Neonatologie hat sich das Konzept einer prognostischen Grauzone etabliert, die als ein Grenzbereich verstanden wird, in dem sich aus medizinischer Sicht die Nutzen-Risiko-Abwägung aufgrund der unsicheren Prognose sehr schwierig gestaltet und sich aus ethischer Sicht sowohl eine kurative als auch eine palliative Versorgung prinzipiell rechtfertigen lassen. Innerhalb der Grauzone wird zumeist eine gemeinsame Entscheidungsfindung mit den Eltern in Form eines „shared-decision making“ (SDM) favorisiert, die sich an dem besten Interesse des Neugeborenen orientieren soll. Allerdings findet sich kein Konsens dazu, wie diese Anforderungen umzusetzen sind. Im vorliegenden Beitrag werden unter Einbeziehung der empirischen Studienlage ethische Anforderungen an die Umsetzung des SDM formuliert. Es wird gezeigt, dass Eltern bzw. Schwangere unterschiedliche Präferenzen hinsichtlich der Art ihrer Einbindung haben. Hieraus ergibt sich aus ethischer Sicht die Anforderung, im Rahmen des SDM gemeinsam herauszuarbeiten, welche Rolle sie bei der Entscheidungsfindung einnehmen wollen und welche Präferenzen und Werte für sie bei der Therapieentscheidung von Relevanz sind. Zudem wird in unserer Untersuchung auf die Frage eingegangen, inwiefern die zu erwartende Lebensqualität der Kinder in die Bestimmung des besten Interesses der Neugeborenen einbezogen werden kann. Es wird gezeigt, dass in der prognostischen Grauzone neben den Präferenzen der Eltern bzw. Schwangeren gegenwärtig kaum Kriterien zur inhaltlichen Bestimmung des besten Interesses des Neugeborenen zur Verfügung stehen – ein wesentlicher Grund, der aus ethischer Sicht für die Implementierung des skizzierten Modells des SDM spricht.

Trust and trustworthiness are essential for good healthcare, especially in mental healthcare. New technologies, such as mobile health apps, can affect trust relationships. In mental health, some apps need the trust of their users for therapeutic efficacy and explicitly ask for it, for example, through an avatar. Suppose an artificial character in an app delivers healthcare. In that case, the following questions arise: Whom does the user direct their trust to? Whether and when can an avatar be considered trustworthy? Our study aims to analyze different dimensions of trustworthiness in the context of mobile health app use. We integrate O'Neill's account of autonomy, trust, and trustworthiness into a model of trustworthiness as a relational concept with four relata: B is trustworthy with respect to A regarding the performance of Z because of C. Together with O'Neill's criteria of trustworthiness (honesty, competence, and reliability), this four-sided model is used to analyze different dimensions of trustworthiness in an exemplary case of mobile health app use. Our example focuses on an app that uses an avatar and is intended to treat sleep difficulties. The conceptual analysis shows that interpreting trust and trustworthiness in health app use is multi-layered and involves a net of interwoven universal obligations. At the same time, O'Neill's approach to autonomy, trust, and trustworthiness offers a normative account to structure and analyze these complex relations of trust and trustworthiness using mobile health apps.

There is a long-standing debate concerning the eligibility of patients suffering from alcohol-related end-stage liver disease (ARESLD) for deceased donor liver transplantation. The question of retrospective and/or prospective responsibility has been at the center of the ethical discussion. Several authors argue that these patients should at least be regarded as partly responsible for their ARESLD. At the same time, the arguments for retrospective and/or prospective responsibility have been strongly criticized, such that no consensus has been reached. A third option was proposed as a form of compromise, namely that responsibility should only be used as a tiebreaker in liver allocation. The present study provides an ethical investigation of this third option. First, we will provide an overview of the main arguments that have been offered for and against the use of responsibility as an allocation criterion. Second, we will explore the concept of responsibility as a tiebreaker in detail and discuss several types of situations, in which responsibility could be used as a tiebreaker, as well as the main ethical challenges associated with them. As we will show, an ethical justified use of responsibility as a tiebreaker is limited to a very restricted number of cases and is associated with a number of ethical concerns. For this reason, waiting time should be preferred as a tiebreaker in liver allocation, even though the criterion of waiting time, too, raises a number of equity-related concerns.

Consumer-targeted sleep tracking applications (STA) that run on mobile devices (e.g., smartphones) promise to be useful tools for the individual user. Assisted by built-in and/or external sensors, these apps can analyze sleep data and generate assessment reports for the user on their sleep duration and quality. However, STA also raise ethical questions, for example, on the autonomy of the sleeping person, or potential effects on third parties. Nevertheless, a specific ethical analysis of the use of these technologies is still missing so far. The aim of the current analysis is to identify the characteristics of sleep tracking apps and to explore the specific ethical aspects associated with this form of self-tracking. Firstly, the field of mobile health applications was screened for STA to explore their typical functions and target user groups. Secondly, an ethical analysis was conducted focusing on the three ethical dimensions: (1) medicalization, (2) vulnerability, and (3) relationality. The analysis indicates that these three normative dimensions are decisive for assessing STA and that the ethical profile of this technology varies greatly depending on the respective user group. As the three dimensions medicalization, vulnerability, and relationality play a distinguishing role in the use of STA, they should be especially addressed in responsible development and implementation of STA. In addition, the analysis helps to evaluate the use of STA, in terms of different risks for specific user groups, the sensitive contexts of usage, and potential interference with the intimacy of third parties.

AAL encompasses smart home technologies that are installed in the personal living environment in order to support older, disabled, as well as chronically ill people with the goal of delaying or reducing their need for nursing care in a care facility. Artificial intelligence (AI) is seen as an important tool for assisting the target group in their daily lives. A literature search and qualitative content analysis of 255 articles from computer science and engineering was conducted to explore the usage of ethical concepts. From an ethical point of view, the concept of independence and self-determination on the one hand and the possible loss of privacy on the other hand are widely discussed in the context of AAL. These concepts are adopted by the technical discourse in the sense that independence, self-determination and privacy are recognized as important values. Nevertheless, our research shows that these concepts have different usages and meanings in the ethical and the technical discourses. In the paper, we aim to map the different meanings of independence, self-determination and privacy as they can be found in the context of technological research on AI-based AAL systems. It investigates the interpretation of these ethical and social concepts which technicians try to build into AAL systems. In a second step, these interpretations are contextualized with concepts from the ethical discourse on AI-based assistive technologies.

Background In nursing homes, residents’ relatives represent important sources of support for nurses. However, in the heightened stress of emergency situations, interaction between nurses and relatives can raise ethical challenges. Research objectives The present analysis aimed at elaborating a typology of nurses’ experience of ethical support and challenges in their interaction with relatives in emergency situations. Research design Thirty-three semi-structured interviews and six focus groups were conducted with nurses from different nursing homes in Germany. Data were analysed according to Mayring’s method of qualitative content analysis. Participants and research context Participants were licensed nurses working in nursing homes. Ethical considerations Ethical approval was granted by Ostfalia University of Applied Sciences (02.07.2020) and the Ethics Committee of Hannover Medical School (Nr. 8866_BO_K_2020; 27.01.2020). Interviewees were anonymised and focus group were pseudonymised during transcription. All participants provided written consent. Findings/results In emergency situations, relatives can represent important sources of support for nurses. However, they may also give rise to different challenges, relating to four ethical conflicts: (1) the challenge of meeting the information needs of relatives while providing appropriate care to all residents; (2) the challenge of managing relatives’ demands for hospitalisation when hospitalisation is not deemed necessary by nurses; (3) the challenge of managing relatives’ demands for lifesaving treatment when such treatment contradicts the will of the resident; and (4) the challenge of attempting to initiate hospitalisation when relatives oppose this course of action. Several external factors make these conflicts especially challenging for nurses: fear of legal consequences, a low staffing ratio, and a lack of qualified nursing staff. Conclusions Conflict between nurses and relatives typically revolves around hospitalisation and the initiation of lifesaving treatment. Whether nurses perceive interaction with relatives as supportive or conflictual essentially depends on the quality of the relationship, which may be negatively influenced by a number of external factors.

Manipulation of the human germline is sometimes criticised as a severe intervention into human nature. In order to assess the tenability of this claim, different uses of the term “human nature” and distinct scientific and clinical contexts must be differentiated. The first live birth of an edited human child will probably take the form of an unproven intervention and not a clinical trial. As an unproven intervention, germline manipulation must be regarded as a severe intervention into the nature of a prospective newborn. Nevertheless, once the technique of germline manipulation can be regarded as a safe therapeutic option, and if its use is restricted to the prevention of severe genetic diseases, it can no longer be regarded as a particularly severe intervention into human nature. However, such a use would make human nature the object of technoscience and the edited human beings would have to be regarded as biofacts, i. e., a form of incarnated and living technological design. This introduces a new quality into the notion of “human nature”, which can be regarded as ethically acceptable, as long as the intervention is restricted to the prevention of severe genetic diseases.

BackgroundThe German guidelines for liver transplantation stipulate that every patient with alcohol-related liver disease needs to prove evidence of a 6-month abstinence period before they can be admitted to the waiting list for liver transplantation. This internationally widespread abstinence rule has been criticised as it prevents patients at least temporarily from receiving an effective and potentially life-saving therapy. This poses the question of how this abstinence rule is depicted and justified by transplantation professionals.ArgumentsIn case of the 6‑month abstinence rule, guidelines are used as a tool for rationing health care. Four frames of interpretation can be reconstructed from the ethical and medical literature. Each linguistically mediated frame offers a different representation of the 6‑month abstinence rule. According to these different framings, the 6‑month waiting period is depicted (1) as a diagnostic tool to determine the regenerative capacity of the liver, (2) as a prognostic tool to determine the prospects of success of a transplantation, and (3) to determine the drinking behaviour after transplantation. In a further context, the abstinence rule (4) is interpreted as an expression of an obligation to avoid behaviour harmful to health.ConclusionThese four frames provide linguistically mediated patterns of interpretation that are used by different actors to limit the indication for liver transplantation. They give rise to different ethical questions that allow a systematic ethical assessment of the 6‑month abstinence rule.

Die deutschen Richtlinien zur Lebertransplantation sehen vor, dass Patient*innen mit alkoholbedingten Lebererkrankungen in der Regel eine sechsmonatige Karenz nachweisen müssen, bevor sie auf die Warteliste für eine Lebertransplantation aufgenommen werden können. Die international weit verbreitete Karenzregel wurde von Beginn an sehr kritisch diskutiert, da hiermit Patient*innen eine wirksame und potentiell lebensrettende Therapie zumindest vorübergehend vorenthalten wird. Sie kommt in der Praxis einer Eingrenzung der Indikation zur Lebertransplantation gleich. Aus der medizinischen Fachliteratur lassen sich vier Interpretationsrahmen rekonstruieren, die mittels Herausstellung bestimmter Aspekte eine jeweils unterschiedliche Wahrnehmung und Konzeptualisierung der sechsmonatigen Karenzregel begründen. Diese sprachlich vermittelten Deutungsmuster werden von Akteur*innen zur Eingrenzung der Indikation zur Lebertransplantation genutzt. Innerhalb dieser Interpretationsrahmen wird die sechsmonatige Karenzzeit jeweils 1) als diagnostisches Werkzeug zur Bestimmung der Regenerationsfähigkeit der Leber, 2) als prognostisches Werkzeug zur Bestimmung der Erfolgsaussichten einer Transplantation, bzw. 3) zur Bestimmung des Trinkverhaltens nach Transplantation dargestellt. In einem weiteren Rahmen wird die Karenzregel 4) als Ausdruck einer Verpflichtung zur Vermeidung von gesundheitsschädlichem Verhalten interpretiert. Aus diesen vier Interpretationsrahmen ergeben sich unterschiedliche ethische Fragestellungen, die eine systematische ethische Beurteilung der Karenzregel ermöglichen. In den ersten drei Interpretationsrahmen wird wiederum selbst die Frage nach der medizinischen Indiziertheit der Karenzregel aufgeworfen.

The human genome is commonly regarded as a ‘natural’ connection between all human beings, as it has been handed down to us by our predecessors. As such, it is believed to represent common heritage of humanity, e.g. a resource of outstanding value that should be the object of special protection and international concern. Some critics argue that germline manipulation would disrupt this natural heritage and that we have a duty to preserve the integrity of the human germline. However, a closer look reveals that the concept of common heritage of humanity does not necessarily imply the impermissibility of germline manipulation. If it is restricted to the prevention of severe diseases, germline manipulation does not represent a threat to the unity and identity of the human species, even though this would create a new form of relationship between human beings, namely that between a designer and a genetically designed person.

Die vorliegende Untersuchung bemüht sich um eine Klärung des Verhältnisses von Lebenswelt und Wissenschaft. Zum einen treten die Wissenschaften bereits ihrem Begriffe nach mit dem Anspruch auf eine besondere Qualität des von ihnen zur Verfügung gestellten Wissens auf. Soll es sich hierbei nicht um ein leeres Versprechen handeln, muss sich zeigen lassen, inwiefern sich die Wissenschaften von anderen Wissensformen wie eben dem Alltagswissen abheben. Die Klärung dieses Verhältnisses stellt also implizit eine Bestimmung der besonderen Qualität der Wissenschaften dar - eine der Hauptaufgaben der Wissenschaftsphilosophie. Zum anderen muss auch der Verlässlichkeit unseres Alltagswissens Genüge getan werden. Das lebensweltliche Wissen ermöglicht uns eine mehr als hinreichende Orientierung im Alltag, so dass eine Degradierung desselben zu einer Ansammlung von bloßen Scheingebilden nur eine unzureichende Analyse darstellt. Da sich prinzipiell drei unterschiedliche Gewichtungen des genannten Verhältnisses denken lassen - die erste optiert zu Gunsten der Wissenschaften, die zweite favorisiert die lebensweltlichen Erfahrungsformen, die dritte will beiden Erkenntnisformen zu ihrem jeweiligen Recht verhelfen -, werden diese nacheinander diskutiert und gegeneinander abgewogen