In discourses on digitization and the data economy, it is often claimed that data subjects shall be owners of their data. In this paper, we provide a problem diagnosis for such calls for data ownership: a large variety of demands are discussed under this heading. It thus becomes challenging to specify what—if anything—unites them. We identify four conceptual dimensions of calls for data ownership and argue that these help to systematize and to compare different positions. In view of this pluralism (...) of data ownership claims, we introduce, spell out and defend a constructive interpretative proposal: claims for data ownership are charitably understood as attempts to call for the redistribution of material resources and the socio-cultural recognition of data subjects. We argue that as one consequence of this reading, it misses the point to reject claims for data ownership on the grounds that property in data does not exist. Instead, data ownership brings to attention a claim to renegotiate such aspects of the status quo. (shrink)
Making good decisions in extremely complex and difficult processes and situations has always been both a key task as well as a challenge in the clinic and has led to a large amount of clinical, legal and ethical routines, protocols and reflections in order to guarantee fair, participatory and up-to-date pathways for clinical decision-making. Nevertheless, the complexity of processes and physical phenomena, time as well as economic constraints and not least further endeavours as well as achievements in medicine and healthcare (...) continuously raise the need to evaluate and to improve clinical decision-making. This article scrutinises if and how clinical decision-making processes are challenged by the rise of so-called artificial intelligence-driven decision support systems. In a first step, this article analyses how the rise of AI-DSS will affect and transform the modes of interaction between different agents in the clinic. In a second step, we point out how these changing modes of interaction also imply shifts in the conditions of trustworthiness, epistemic challenges regarding transparency, the underlying normative concepts of agency and its embedding into concrete contexts of deployment and, finally, the consequences for ascriptions of responsibility. Third, we draw first conclusions for further steps regarding a ‘meaningful human control’ of clinical AI-DSS. (shrink)
Simulations are used in very different contexts and for very different purposes. An emerging development is the possibility of using simulations to obtain a more or less representative reproduction of organs or even entire persons. Such simulations are framed and discussed using the term ‘digital twin’. This paper unpacks and scrutinises the current use of such digital twins in medicine and the ideas embedded in this practice. First, the paper maps the different types of digital twins. A special focus is (...) put on the concrete challenges inherent in the interactions between persons and their digital twin. Second, the paper addresses the questions of how far a digital twin can represent a person and what the consequences of this may be. Against the background of these two analytical steps, the paper defines first conditions for digital twins to take on an ethically justifiable form of representation. (shrink)
New data-driven technologies yield benefits and potentials, but also confront different agents and stakeholders with challenges in retaining control over their data. Our goal in this study is to arrive at a clear picture of what is meant by data sovereignty in such problem settings. To this end, we review 341 publications and analyze the frequency of different notions such as data sovereignty, digital sovereignty, and cyber sovereignty. We go on to map agents they concern, in which context they appear, (...) and which values they allude to. While our sample reveals a considerable degree of divergence and an occasional lack of clarity about intended meanings of data sovereignty, we propose a conceptual grid to systematize different dimensions and connotations. Each of them relates in some way to meaningful control, ownership, and other claims to data articulated by a variety of agents ranging from individuals to countries. Data sovereignty alludes to a nuanced mixture of normative concepts such as inclusive deliberation and recognition of the fundamental rights of data subjects. (shrink)
It is very timely and highly important to think the relationship between theological and philosophical ethics. In this issue, Michael McCarthy et al. make a plea for a stronger dialogue...
This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could—especially considering current developments in big data and artificial intelligence—compromise the right by leading to injustices and (...) affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy. (shrink)
Genome Editing Techniques are seen to be at the frontier of current research in the field of emerging biotechnologies. The latest revolutionary development, the so-called CRISPR technology, represents a paradigmatic example of the ambiguity of such techniques and has resulted in an international interdisciplinary debate on whether or not it is necessary to ban the application of this technique by means of a moratorium on its use for human germline modifications, particularly in human embryos in the reproduction process. However, given (...) that other germline engineering techniques like mitochondrial DNA transfer techniques are already permitted and applied, the question arises what lies at the root of the apparent social unease about the modification of the human germline by Genome Editing Techniques like CRISPR. Against this background, the book seeks to make a substantial contribution to the current debate about a responsible and participatory framework for research on emerging biotechnologies by analysing underlying perceptions, attitudes, arguments and the reasoning on Genome Editing Techniques. (shrink)
Die vorliegende Studie empfiehlt, Leistungsansprüche für Personen mit interventionsfordernden Risiken anhand einer neuen Rechtskategorie, der ‚risikoadaptieren Prävention‘, abzubilden. Spätestens seit dem bioinformatischen Innovationsschub kann eine risikoadaptierte Anwendung von prophylaktischen Maßnahmen umfassend gewährleistet werden. Jedoch können die gegebenen Rechtskategorien das medizinische Anwendungsfeld nicht adäquat steuern. Die Autoren Friedhelm Meier, Anke Harney, Kerstin Rhiem, Anja Neumann, Silke Neusser, Matthias Braun, Jürgen Wasem, Rita Schmutzler, Stefan Huster und Peter Dabrock haben zusammen im BMBF geförderten Projekt SYSKON. Re-Konfiguration von Gesundheit und Krankheit. Ethische, psychosoziale, (...) rechtliche und gesundheitsökonomische Herausforderungen der Systemmedizin die vorliegende Governance Perspective erarbeitet. This book is published open access under a CC BY 4.0 license. (shrink)
According to the judgement of the European Court of Justice in 2014, human parthenogenetic stem cells are excluded from the patenting prohibition of procedures based on hESC by the European Biopatent Directive, because human parthenotes are not human embryos. This article is based on the thesis that in light of the technological advances in the field of stem cell research, the attribution of the term ‘human embryo’ to certain entities on a descriptive level as well as the attribution of a (...) normative protection status to certain entities based on the criterion of totipotency, are becoming increasingly unclear. The example of human parthenotes in particular demonstrates that totipotency is not at all a necessary condition for the attribution of the term ‘human embryo’. Furthermore, the example of hiPSC and somatic cells particularly shows that totipotency is also not a sufficient condition for the attribution of a normative protection status to certain entities. Therefore, it is not a suitable criterion for distinguishing between human embryos worthy of protection and human non-embryos not worthy of protection. Consequently, this conclusion has repercussions for the patenting question. The strict delineation between an ethically problematic commercial use of human embryos and the concomitant patenting prohibition of hESC-based procedures and an ethically unproblematic commercial use of human non-embryos and the therefore either unrestrictedly permitted or even unregulated patenting of procedures based on these alleged alternatives becomes increasingly blurred. (shrink)
ZusammenfassungNeben grundsätzlichen konzeptionellen Fragen der sog. Individualisierten Medizin, prägen ethische Bedenken und Fragen die aktuellen Debatten um die IM. Allerdings ist bislang noch nicht geklärt, in welchem methodischen Rahmen diese Fragen verortet werden können. Für die Entwicklung eines solchen Rahmens wird das Modell der First- und Second-Wave-Bioethics diskutiert und an zwei konkreten Herausforderungen – 1) dem Verhältnis der IM zur evidenz-basierten Medizin und 2) am Konzept der genetischen Risikoperson – aufgezeigt. Eine solche Kontextualisierung der IM-Debatte legt den Grundstein für eine (...) adäquate Erfassung und Bearbeitung sozialethischer Fragen. (shrink)
Neben grundsätzlichen konzeptionellen Fragen der sog. Individualisierten Medizin (IM), prägen ethische Bedenken und Fragen die aktuellen Debatten um die IM. Allerdings ist bislang noch nicht geklärt, in welchem methodischen Rahmen diese Fragen verortet werden können. Für die Entwicklung eines solchen Rahmens wird das Modell der First- und Second-Wave-Bioethics diskutiert und an zwei konkreten Herausforderungen – 1) dem Verhältnis der IM zur evidenz-basierten Medizin und 2) am Konzept der genetischen Risikoperson – aufgezeigt. Eine solche Kontextualisierung der IM-Debatte legt den Grundstein für (...) eine adäquate Erfassung und Bearbeitung sozialethischer Fragen (z. B. im Hinblick auf das Problem der Eigenverantwortung). (shrink)
ZusammenfassungNeben grundsätzlichen konzeptionellen Fragen der sog. Individualisierten Medizin, prägen ethische Bedenken und Fragen die aktuellen Debatten um die IM. Allerdings ist bislang noch nicht geklärt, in welchem methodischen Rahmen diese Fragen verortet werden können. Für die Entwicklung eines solchen Rahmens wird das Modell der First- und Second-Wave-Bioethics diskutiert und an zwei konkreten Herausforderungen – 1) dem Verhältnis der IM zur evidenz-basierten Medizin und 2) am Konzept der genetischen Risikoperson – aufgezeigt. Eine solche Kontextualisierung der IM-Debatte legt den Grundstein für eine (...) adäquate Erfassung und Bearbeitung sozialethischer Fragen. (shrink)
Genome editing techniques are seen to be at the frontier of current research in the field of emerging biotechnologies. However, such biotechnological research is tensioned at the interface of science, technology and society. On the one hand, this means that it offers a tremendous potential to provide new concepts, methods and – in the long run – novel applications for urgent challenges and needs within society.
