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.

Background In nursing homes, emergencies often result in unnecessary hospital transfers, which may negatively affect residents’ health. Emergency management in nursing homes is complicated by structural conditions, uncertainties and difficulties communicating with the treating healthcare professionals. The present study investigated the role played by relatives in this emergency management, as perceived by nursing staff. Methods Within the context of a larger multi-method, interdisciplinary research project, we conducted six focus group discussions and 33 semi-structured interviews with nurses at nursing homes in northern Germany between September 2020 and April 2021. Discussions and interviews focused on emergency management in nursing homes, and were recorded, transcribed and analysed using qualitative content analysis, according to Mayring. Results Nurses reported that relatives were actively involved in emergency management in the nursing homes. Relatives were informed when there was an emergency situation, and they participated in decision making around the resident’s care. Nurses sometimes perceived the involvement of relatives as challenging, due to a lack of time or staff, the opposing views of relatives and/or uncertain communication structures; however, they were willing to involve relatives according to the relatives’ preferences. The role played by relatives was seen to range from that of an active supporter to that of a troublemaker. On the one hand, relatives were reported to support nurses in emergency management (i.e. by identifying residents’ preferences and advocating for residents’ interests). On the other hand, relatives were often perceived by the nurses as overstrained and unprepared in emergency situations, leading them to override residents’ wishes, question the emergency plan and put pressure on the nurses’ decision making. Conclusions Nurses perceive the roles played by relatives in emergency situations in nursing homes as relatively supportive or, alternatively, demanding and troublesome. The timely involvement of relatives in emergency planning, the establishment of clear agreements with general practitioners and the development of trusting relationships between nursing staff and relatives may improve emergency management for nurses.

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.

ZusammenfassungDie 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 (vorübergehenden) 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.

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