Sebastian Schleidgen

In recent years, personalized medicine (PM) has become a highly regarded line of development in medicine. Yet, it is still a relatively new field. As a consequence, the discussion of its future developments, in particular of its ethical implications, in most cases can only be anticipative. Such anticipative discussions, however, pose several challenges. Nevertheless, they play a crucial role for shaping PM’s further developments. Therefore, it is vital to understand how the ethical discourse on PM is conducted, i.e. on what – empirical and normative – assumptions ethical arguments are based regarding PM’s current and future developments

During the 1980s, empirical social sciences and normative theory seemingly converged within ethical debates. This tendency kindled new debates about the limits and possibilities of empirical-normative collaboration. The article asks for adequate ways of collaboration by taking a closer look at the philosophy of science of empirical social sciences as well as normative theory development and its logical groundings. As a result, three possible modes of cooperation are characterized: first, the empirical assessment of conditions that actually necessitate the translation of normatively derived basic principles into practice rules; second, the empirical assessment of conditions for application of a moral norm which are formulated by bridging principles; third, the empirical assessment of social practice which allows to measure whether adopted norms actually are implemented in practice or not and to encounter new moral problems which are in need of ethical guidance. Finally, the article defends a symbiotic position in Weaver ’s and Trevino's triad of possible approaches to empirical-normative collaboration in ethics

Recently, individualized or personalized medicine (PM) has become a buzz word in the academic as well as public debate surrounding health care. However, PM lacks a clear definition and is open to interpretation. This conceptual vagueness complicates public discourse on chances, risks and limits of PM. Furthermore, stakeholders might use it to further their respective interests and preferences. For these reasons it is important to have a shared understanding of PM. In this paper, we present a sufficiently precise as well as adequate definition of PM with the potential of wide acceptance

Researchers in applied ethics, and some areas of bioethics particularly, aim to develop concrete and appropriate recommendations for action in morally relevant real-world situations. When proceeding from more abstract levels of ethical reasoning to such concrete recommendations, however, even with regard to the very same normative principle or norm, it seems possible to develop divergent or even contradictory recommendations for action regarding a certain situation. This may give the impression that such recommendations would be arbitrary and, hence, not well justified. Against this background, we, first, aim at showing that ethical recommendations for action, although being contingent in some sense, are not arbitrary if developed appropriately. For this purpose, we examine two types of contingencies arising in applied ethics reasoning based on recent examples of recommendations for action in the context of the COVID-19 pandemic. In doing so, we refer to a three-step model of ethical reasoning towards recommendations for actions. This, however, leaves open the question of how applied ethics may cope with contingent recommendations for action. Therefore, in a second step, we analyze the role of bridge principles for developing ethically appropriate recommendations for action, i.e., principles which connect normative claims with relevant empirical information to justify certain recommendations for action in a given morally relevant situation. Finally, we discuss some implications for reasoning and reporting in empirically informed ethics.

The so-called Brundtland-Report defines Sustainable Development as a conception of intra- and intergenerational justice, which is to be realized by a globally just distribution of possibilities for satisfying human basic needs as well as assuring such possibilities for future generations. Hence, any political and/or societal decision is addressed by the ethical demands of Sustainable Development insofar it affects possibilities for satisfying human basic needs. In particular, this concerns – contrary to the widespread opinion that Sustainable Development only has to deal with problems of environmental ethics – the legitimization of biomedical applications. After all, especially such decisions often face the problem of measuring and trading-off potential advantages and disadvantages regarding possibilities for satisfying human basic needs. Based on the example of decisions about establishing biobanks, my talk firstly will show that Sustainable Development actually demands much more from political and societal decisions than just being concerned about environmental ethics. Secondly, it will clarify these demands in detail. Thirdly, it will address the issues of how these demands can be implemented adequately. My talk therefore will show which conditions political and/or societal decision processes have to meet in order to comply with Sustainable Development.

BackgroundClustered Regularly Interspaced Short Palindromic Repeats-associated technology may allow for efficient and highly targeted gene editing in single-cell embryos. This possibility brings human germline editing into the focus of ethical and legal debates again.Main bodyAgainst this background, we explore essential ethical and legal questions of interventions into the human germline by means of CRISPR-Cas: How should issues of risk and uncertainty be handled? What responsibilities arise regarding future generations? Under which conditions can germline editing measures be therapeutically legitimized? For this purpose, we refer to a scenario anticipating potential further development in CRISPR-Cas technology implying improved accuracy and exclusion of germline transmission to future generations. We show that, if certain concepts regarding germline editing are clarified, under such conditions a categorical prohibition of one-generation germline editing of single-cell embryos appears not to be ethically or legally justifiable.ConclusionThese findings are important prerequisites for the international debate on the ethical and legal justification of germline interventions in the human embryo as well as for the harmonization of international legal standards.

Die sogenannte individualisierte Medizin (IM) ist in den letzten Jahren zu einem Schlagwort in Wissenschaft, Politik und Öffentlichkeit geworden. Wie jede technologische Neuentwicklung hat sie jedoch (potentielle) ethische Implikationen, die es zu berücksichtigen gilt, um eine angemessene Entwicklung und Anwendung individualisierter Präventions- und Therapiemaßnahmen zu ermöglichen. Allerdings steht eine ethische Bewertung der IM vor verschiedenen methodischen Herausforderungen, die sich insbesondere aus der Heterogenität des Problembereichs, begrifflicher Unklarheit sowie dem Frühstadium ihrer Entwicklung ergeben. Der vorliegende Beitrag spezifiziert zunächst den Begriff der IM, um den Kontext der weiteren Überlegungen einzugrenzen. Anschließend wird eine heuristisch zu verstehende Typologie (möglicher) individual- und sozialethischer Implikationen der IM entwickelt. Sie verdeutlicht, dass die IM vorwiegend ethische Probleme aufwirft, die aus anderen biomedizinischen Bereichen bekannt sind. Welche dieser Probleme tatsächlich relevant sind, ist allerdings abhängig von der jeweils spezifischen IM-Maßnahme. Eine adäquate ethische Bewertung kann daher nur durch die Evaluation jedes einzelnen individualisierten Ansatzes erfolgen

In der ethischen und rechtlichen Debatte um den möglichen Einsatz neuer Techniken zur Genomeditierung spielt der Begriff der genetischen Veränderung eine zentrale Rolle. Während im Bereich der grünen Gentechnik intensive Debatten um seine Bedeutung geführt werden, wird dieser Umstand im Kontext gentechnischer Interventionen am Menschen weitgehend ausgeblendet. Der Aufsatz expliziert drei mögliche Bedeutungen genetischer Veränderung, namentlich: ein prozessuales, ein diachrones sowie ein klassenbezogenes Verständnis. Anhand zweier Szenarien zukünftig erwartbarer Keimbahninterventionen wird anschließend exemplarisch gezeigt, welche Konsequenzen die Begriffe für die Kennzeichnung humaner Embryonen als genetisch veränderte Entitäten haben und was dies jeweils für eine ethische und rechtliche Bewertung von Keimbahninterventionen bedeuten würde. Dabei ergeben sich jedoch für jeden der Begriffe logische, konzeptionelle sowie Anwendungsprobleme, die es problematisch erscheinen lassen, Maßnahmen der Genomeditierung überhaupt unter Verweis auf einen Begriff der genetischen Veränderung rechtlich oder ethisch zu bewerten. Soll dieser Bezugspunkt dennoch aufrechterhalten werden, ist unter pragmatischen Gesichtspunkten letztlich nur ein prozessuales Verständnis genetischer Veränderung plausibel.

Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative focus group study at the National Center for Tumor Diseases. Patients and oncologists assessed the informational risks either as minimal or as greater than minimal, depending on the context factors of occupational status, age, and patients’ prognosis. Interestingly, even patients who assumed a greater risk did not refrain from participating in genomic research, provided that certain informational and institutional safeguards are implemented. Moreover, they expected comprehensive disclosure of the risks resulting from genomic data sharing. These results suggest comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, establishing independent governance entities in order to minimize the informational risks of genomic research, and implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research.

The so-called Brundtland-Report defines Sustainable Development as a conception of intra- and intergenerational justice, which is to be realized by a globally just distribution of possibilities for satisfying human basic needs as well as assuring such possibilities for future generations. Hence, any political and/or societal decision is addressed by the ethical demands of Sustainable Development insofar it affects possibilities for satisfying human basic needs. In particular, this concerns – contrary to the widespread opinion that Sustainable Development only has to deal with problems of environmental ethics – the legitimization of biomedical applications. After all, especially such decisions often face the problem of measuring and trading-off potential advantages and disadvantages regarding possibilities for satisfying human basic needs. Based on the example of decisions about establishing biobanks, my talk firstly will show that Sustainable Development actually demands much more from political and societal decisions than just being concerned about environmental ethics. Secondly, it will clarify these demands in detail. Thirdly, it will address the issues of how these demands can be implemented adequately. My talk therefore will show which conditions political and/or societal decision processes have to meet in order to comply with Sustainable Development.

Data-sharing among genomic researchers is promoted for its potential to accelerate our understanding of the molecular basis of cancer. However, with genomic data sharing the risks of re-identifying study participants, revealing personal genomic information and data misuse might increase. This study aims at exploring perceptions of patients and physicians in Oncology regarding their assessment of the informational risks resulting from participating in whole genomic research studies in order to improve the informed consent process. For this purpose, we conducted a qualitative focus group study at the National Center for Tumor Diseases (NCT). Patients and oncologists assessed the informational risks either as minimal or as greater than minimal, depending on the context factors of occupational status, age, and patients’ prognosis. Interestingly, even patients who assumed a greater risk did not refrain from participating in genomic research, provided that certain informational and institutional safeguards are implemented. Moreover, they expected comprehensive disclosure of the risks resulting from genomic data sharing. These results suggest (1) comprehensive disclosure of the risks of genomic research to potential study participants in genomic research to facilitate risk assessment and sound decision making, (2) establishing independent governance entities in order to minimize the informational risks of genomic research, and (3) implementing data sharing policies which offer guidance for physicians and researchers involved in genomic research.

For almost two decades, the concept of epistemic injustice has been a point of reference to discuss the extent to which persons can be disadvantaged in their role as knowers and what morally relevant consequences might follow from such violations. This volume brings together contributions that have significantly shaped debates about the concept of epistemic injustice and its meaning, as well as recent contributions on its implications and possible consequences of situations of epistemic injustice. With contributions by David Coady | Katharina Eisenhut | Miranda Fricker | Orsolya Friedrich | Agomoni Ganguli-Mitra | Axel Gelfert | Hilkje C. Hänel | Julia A. Harzheim | Lars Leeten | José Medina | Ruben Sakowsky | Ela Sauerborn | Sebastian Schleidgen | Katharina Trettenbach | Verina Wild | Andreas Wolkenstein.

ZusammenfassungSystemmedizinische Ansätze zeichnen sich durch die Integration großer Datenmengen aus vielfältigen Datenquellen aus und führen systembiologische und medizinische Forschungsansätze mit informationswissenschaftlichen Methoden und prädiktiven Verfahren mathematischer Modellierung zusammen. Hieraus resultiert eine enge Kooperation von Ärzten und Naturwissenschaftlern, wobei insbesondere die Expertise nicht-ärztlicher Forscher zunehmend an Bedeutung für die Datenaufbereitung und -interpretation gewinnt. Aus ethischer Perspektive wirft diese Entwicklung Fragen nach der konkreten Gestaltung einer systemmedizinischen Zusammenarbeit sowie möglichen Rollenveränderungen und neuen Verantwortungszuschreibungen an Ärzte und nicht-ärztliche Forscher auf. Um diese Fragen mit Blick auf die Erfahrungen und Perspektiven der beteiligten Akteursgruppen zu beleuchten, führten wir eine qualitative Interviewstudie mit Ärzten und nicht-ärztlichen Forschern aus unterschiedlichen systemmedizinischen Kontexten durch. Aus dem Interviewmaterial ließen sich zwei Konzeptionen von Systemmedizin rekonstruieren. Die erste ist durch eine eindeutige arbeitsteilige Rollentrennung zwischen Ärzten und Forschern charakterisiert: Der Forscher fungiert als Dienstleister, der Arzt als translationaler, interdisziplinär ausgerichteter Mediziner. Die zweite zeichnet sich durch eine weitreichende Aufhebung der Rollentrennung von Ärzten und Forschern aus: Die Berufsgruppen agieren als interdisziplinäres Team mit einer engen wechselseitigen inhaltlichen und methodischen Zusammenarbeit der Akteure. In beiden Konzeptionen werden Rollenkonflikte von Ärzten und Forschern deutlich, die insbesondere auf die Diskrepanz zwischen dem Arzt- und Forscherethos und die mit ihnen je verknüpften spezifischen Handlungsnormen und Ziele zurückzuführen sind. Ferner besteht mit Blick auf die dem Arzt und Forscher jeweils zukommende Verantwortung gegenüber Patienten vielfältiger normativer Klärungsbedarf, insbesondere hinsichtlich der Frage, welche Verantwortung den Akteursgruppen gerechtfertigter Weise zugeschrieben werden kann. Diesbezüglich erscheint eine Differenzierung von versorgungsnäheren und grundlagenforschungsorientierten Arbeitsfeldern angeraten.

In the present article we examine the anthropological implications of “intelligent” neurotechnologies (INTs). For this purpose, we first give an introduction to current developments of INTs by specifying their central characteristics. We then present and discuss traditional anthropological concepts such as the “homo faber,” the concept of humans as “deficient beings,” and the concept of the “cyborg,” questioning their descriptive relevance regarding current neurotechnological applications. To this end, we relate these anthropological concepts to the characteristics of INTs elaborated before. As we show, the explanatory validity of the anthropological concepts analyzed in this article vary significantly. While the concept of the homo faber, for instance, is not capable of adequately describing the anthropological implications of new INTs, the cyborg proves to be capable of grasping several aspects of today’s neurotechnologies. Nevertheless, alternative explanatory models are needed in order to capture the new characteristics of INTs in their full complexity.

Social robots are designed to perform intelligent, emotional, and autonomous behavior in order to establish intimate relationships with humans, for instance, in the context of elderly care. However, the imitation of qualities usually assumed to be necessary for human reciprocal interaction may impact our understanding of social interaction. Against this background, we compare the technical operations based on which social robots imitate human-like behavior with the concepts of emotionality, intelligence, and autonomy as usually attached to humans. In doing so, we aim at making a conceptual contribution to the intuition that the technical imitation of emotional, intelligent, and autonomous behavior differs qualitatively from human forms of emotionality, intelligence, and autonomy. We conclude that the increasing tendency of social robots to imitate human characteristics and the thus increased human tendency of anthropomorphizing technical systems put forth new forms of human–machine interactions (HMI) that call for a critical examination. Thus, the emerging forms of interaction may lead, for instance, to false, reinforced, and perplexing assumptions regarding reciprocity. Therefore, studies are needed that critically examine the potential consequences and psychological effects that may be associated with the use of social robots, especially with regard to vulnerable groups such as children or the elderly.

Academic publications of empirical public health research often entail recommendations for moral action that address practitioners and policy makers. These recommendations are regularly based on implicit moral judgments with the underlying reasons not explicitly stated. In this paper, we elaborate on the moral relevance of such judgments and the need to explain them in order to account for academic argumentation. We argue for an explicit reporting of bridge principles to increase the transparency of the reporting of public health research. The reporting of bridge principles can inform readers, support them in understanding the relationship between empirical and normative claims in a specific paper, and may pave new ways for the rigorous reporting of empirical research that has moral implications. Furthermore, it can be used to classify studies to systematically address the justification for their argumentation.

Social robotics aims at designing robots capable of joint interaction with humans. On a conceptual level, sufficient mutual understanding is usually said to be a necessary condition for joint interaction. Against this background, the following questions remain open: in which sense is it legitimate to speak of human–robot joint interaction? What exactly does it mean to speak of humans and robots sufficiently understanding each other to account for human–robot joint interaction? Is such joint interaction effectively possible by reference, e.g., to the mere ascription or simulation of understanding? To answer these questions, we first discuss technical approaches which aim at the implementation of certain aspects of human–human communication and interaction in social robots in order to make robots accessible and understandable to humans and, hence, human–robot joint interaction possible. Second, we examine the human tendency to anthropomorphize in this context, with a view to human understanding of and joint interaction with social robots. Third, we analyze the most prominent concepts of mutual understanding and their implications for human–robot joint interaction. We conclude that it is—at least for the time being—not legitimate to speak of human–robot joint interaction, which has relevant implications both morally and ethically.

The so-called Brundtland-Report defines Sustainable Development as a conception of intra- and intergenerational justice, which is to be realized by a globally just distribution of possibilities for satisfying human basic needs as well as assuring such possibilities for future generations. Hence, any political and/or societal decision is addressed by the ethical demands of Sustainable Development insofar it affects possibilities for satisfying human basic needs. In particular, this concerns – contrary to the widespread opinion that Sustainable Development only has to deal with problems of environmental ethics – the legitimization of biomedical applications. After all, especially such decisions often face the problem of measuring and trading-off potential advantages and disadvantages regarding possibilities for satisfying human basic needs. Based on the example of decisions about establishing biobanks, my talk firstly will show that Sustainable Development actually demands much more from political and societal decisions than just being concerned about environmental ethics. Secondly, it will clarify these demands in detail. Thirdly, it will address the issues of how these demands can be implemented adequately. My talk therefore will show which conditions political and/or societal decision processes have to meet in order to comply with Sustainable Development.

ZusammenfassungDie sogenannte individualisierte Medizin (IM) ist in den letzten Jahren zu einem Schlagwort in Wissenschaft, Politik und Öffentlichkeit geworden. Wie jede technologische Neuentwicklung hat sie jedoch (potentielle) ethische Implikationen, die es zu berücksichtigen gilt, um eine angemessene Entwicklung und Anwendung individualisierter Präventions- und Therapiemaßnahmen zu ermöglichen. Allerdings steht eine ethische Bewertung der IM vor verschiedenen methodischen Herausforderungen, die sich insbesondere aus der Heterogenität des Problembereichs, begrifflicher Unklarheit sowie dem Frühstadium ihrer Entwicklung ergeben. Der vorliegende Beitrag spezifiziert zunächst den Begriff der IM, um den Kontext der weiteren Überlegungen einzugrenzen. Anschließend wird eine heuristisch zu verstehende Typologie (möglicher) individual- und sozialethischer Implikationen der IM entwickelt. Sie verdeutlicht, dass die IM vorwiegend ethische Probleme aufwirft, die aus anderen biomedizinischen Bereichen bekannt sind. Welche dieser Probleme tatsächlich relevant sind, ist allerdings abhängig von der jeweils spezifischen IM-Maßnahme. Eine adäquate ethische Bewertung kann daher nur durch die Evaluation jedes einzelnen individualisierten Ansatzes erfolgen.

The so-called Brundtland-Report defines Sustainable Development as a conception of intra- and intergenerational justice, which is to be realized by a globally just distribution of possibilities for satisfying human basic needs as well as assuring such possibilities for future generations. Hence, any political and/orsocietal decision is addressed by the ethical demands of Sustainable Development insofar it affects possibilities for satisfying human basic needs. In particular, this concerns – contrary to the widespread opinion that Sustainable Development only has to deal with problems of environmental ethics – the legitimization of biomedical applications. After all, especially such decisions often face the problem of measuring and trading‐off potential advantages and disadvantages regarding possibilities for satisfying human basic needs. Based on the example of decisions about establishing biobanks, my talk firstly will show that Sustainable Development actually demands much more from political and societal decisions than just being concerned about environmental ethics. Secondly, it will clarify these demands in detail. Thirdly, it will address the issues of how these demands can be implemented adequately. My talk therefore will show which conditions political and/or societal decision processes have to meet in order to comply with Sustainable Development.

The so-called Brundtland-Report defines Sustainable Development as a conception of intra- and intergenerational justice, which is to be realized by a globally just distribution of possibilities for satisfying basic human needs as well as by assuring such possibilities for future generations. Hence, any political and/orsocietal decision is addressed by the ethical demands of Sustainable Development insofar it affects possibilities for satisfying basic human needs. In particular, this concerns – contrary to the widespread opinion that Sustainable Development only has to deal with problems of environmental ethics – the legitimization ofbiomedical applications. After all, especially such decisions often face the problem of measuring and trading-off potential advantages and disadvantages regarding possibilities for satisfying human basic needs. Based on the example of decisions about establishing biobanks, the paper firstly will show that Sustainable Development actually demands much more from political and societal decisions than just being concerned with environmental ethics. Secondly, itwill clarify these demands in detail. Thirdly, it will address the issues of how these demands can be implemented adequately. The paper therefore will show which conditions political and/or societal decision processes have to meet in order to comply with Sustainable Development.