This open access book presents an ethical approach to utilizing personal medical data. It features essays that combine academic argument with practical application of ethical principles. The contributors are experts in ethics and law. They address the challenges in the re-use of medical data of the deceased on a voluntary basis. This pioneering study looks at the many factors involved when individuals and organizations wish to share information for research, policy-making, and humanitarian purposes. Today, it is easy to donate blood (...) or even organs, but it is virtually impossible to donate one’s own medical data. This is seen as ethically unacceptable. Yet, data donation can greatly benefit the welfare of our societies. This collection provides timely interdisciplinary research on biomedical big data. Topics include the ethics of data donation, the legal and regulatory challenges, and the current and future collaborations. Readers will learn about the ethical and regulatory challenges associated with medical data donations. They will also better understand the special nature of using deceased data for research purposes with regard to ethical principles of autonomy, beneficence, and justice. In addition, the contributors identify the key governance issues of such a scheme. The essays also look at what we can learn in terms of best practice from existing medical data schemes. (shrink)

Historically, scientific and engineering expertise has been key in shaping research and innovation policies, with benefits presumed to accrue to society more broadly over time. But there is persistent and growing concern about whether and how ethical and societal values are integrated into R&I policies and governance, as we confront public disbelief in science and political suspicion toward evidence-based policy-making. Erosion of such a social contract with science limits the ability of democratic societies to deal with challenges presented by new, (...) disruptive technologies, such as synthetic biology, nanotechnology, genetic engineering, automation and robotics, and artificial intelligence. Many policy efforts have emerged in response to such concerns, one prominent example being Europe's Eighth Framework Programme, Horizon 2020, whose focus on “Responsible Research and Innovation” provides a case study for the translation of such normative perspectives into concrete policy action and implementation. Our analysis of this H2020 RRI approach suggests a lack of consistent integration of elements such as ethics, open access, open innovation, and public engagement. On the basis of our evaluation, we suggest possible pathways for strengthening efforts to deliver R&I policies that deepen mutually beneficial science and society relationships. (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)

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 (AI-DSS). 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 (possible) ascriptions of responsibility. Third, we draw first conclusions for further steps regarding a ‘meaningful human control’ of clinical AI-DSS. (shrink)

In discourses on digitization and the data economy, it is often claimed that data subjects shall beownersof their data. In this paper, we provide a problem diagnosis for such calls fordata 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 theredistributionof material resources and the socio-culturalrecognitionof 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 thestatus quo. (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)

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.

The book considers the relationship between governance and participation, and the ways participation has been understood, framed and applied in the context of synthetic biology (SB) governance approaches. Based on fundamental questions about the scope, purpose, and responsibilities assigned to public participation activities, the authors conducted an literature review of policy reports and articles on SB governance. The authors identify key characteristics of synthetic biology, such as the complex interplay of research, engineering and IT expertise in the field, as well (...) as the challenges these characteristics pose in designing governance frameworks. Drawing on insights from a literature review, the authors contest calls for “earlier” and “more” participation on the basis that such calls fail to consider the necessary structural adjustments and resources needed for such endeavors. The brief addresses ethical questions arising in synthetic biology that could be used for developing frameworks of governance in the ongoing COVID-19 crisis and the consequent innovations in vaccine research. (shrink)

The spectral fluctuations of quantum (or wave) systems with a chaotic classical (or ray) limit are mostly universal and faithful to random-matrix theory. Taking up ideas of Pechukas and Yukawa we show that equilibrium statistical mechanics for the fictitious gas of particles associated with the parametric motion of levels yields spectral fluctuations of the random-matrix type. Previously known clues to that goal are an appropriate equilibrium ensemble and a certain ergodicity of level dynamics. We here complete the reasoning by establishing (...) a power law for the ħ dependence of the mean parametric separation of avoided level crossings. Due to that law universal spectral fluctuations emerge as average behavior of a family of quantum dynamics drawn from a control parameter interval which becomes vanishingly small in the classical limit; the family thus corresponds to a single classical system. We also argue that classically integrable dynamics cannot produce universal spectral fluctuations since their level dynamics resembles a nearly ideal Pechukas–Yukawa gas. (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 (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)

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)

Background Big data and AI applications now play a major role in many health contexts. Much research has already been conducted on ethical and social challenges associated with these technologies. Likewise, there are already some studies that investigate empirically which values and attitudes play a role in connection with their design and implementation. What is still in its infancy, however, is the comparative investigation of the perspectives of different stakeholders. Methods To explore this issue in a multi-faceted manner, we conducted (...) semi-structured interviews as well as focus group discussions with patients and clinicians. These empirical methods were used to gather interviewee’s views on the opportunities and challenges of medical AI and other data-intensive applications. Results Different clinician and patient groups are exposed to medical AI to differing degrees. Interviewees expect and demand that the purposes of data processing accord with patient preferences, and that data are put to effective use to generate social value. One central result is the shared tendency of clinicians and patients to maintain individualistic ascriptions of responsibility for clinical outcomes. Conclusions Medical AI and the proliferation of data with import for health-related inferences shape and partially reconfigure stakeholder expectations of how these technologies relate to the decision-making of human agents. Intuitions about individual responsibility for clinical outcomes could eventually be disrupted by the increasing sophistication of data-intensive and AI-driven clinical tools. Besides individual responsibility, systemic governance will be key to promote alignment with stakeholder expectations in AI-driven and data-intensive health settings. (shrink)

The precarious rights of senior citizens, especially those who are highly educated and who are expected to counsel and guide the younger generations, has stimulated the creation internationally of advocacy associations and opinion leader groups. The strength of these groups, however, varies from country to country. In some countries, they are supported and are the focus of intense interest; in others, they are practically ignored. For this is reason we believe that the creation of a network of all these associations (...) is essential. The proposed network would act as a support for the already-existing policies of the United Nations’ High Commission for Human Rights, of independent experts, and of the Global Alliance for the Rights of Older People. All three have long ago recommended the creation of a recognized instrument for uniting presently scattered efforts. The proposed network, therefore, will seek to promote the international exchange of relevant expertise, and it will reinforce the commitments and actions that single countries are currently taking to meet these objectives. For example, informative public events can be organised to promote particular support initiatives and to provide an opportunity for new members of the network to be presented. The network will promote health for senior citizens, disease prevention, senior mobility, safe free time for seniors, alimentary education, protection against new risks and dangers, as well as equity in the services necessary for seniors to adopt new information and communication technologies. In the case of retired academic members, the network will promote equality with respect to continuing use of digital technologies (particularly email), continuing access to research libraries, and the guaranteed ability for seniors to fund their own research programs and to deliver free seminars. (shrink)

Name der Zeitschrift: Jahrbuch für Wissenschaft und Ethik Jahrgang: 18 Heft: 1 Seiten: 173-198.

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)

Among the artifacts produced by nineteenth-century Quellenforschung, few have exerted more influence or endured more censure than the lost Hellenistic epyllion which, as reconstructed by G. Knaack, told of the journey of Phaethon to the palace of the sun-god and his disastrous ride in the solar car. Relying chiefly upon the two versions of the story told by Ovid in his Metamorphoses and Nonnus in the Dionysiaca , and applying techniques comparable to the stemmatic method of textual criticism, Knaack traced (...) every shared feature of these two accounts to the inevitable lost Hellenistic ‘original’. Details from Lucian and Philostratus , who were also presumed to have read this lost poem, helped to fill in the blanks. Knaack's thesis illustrates the extremes of which source criticism was capable at a time when it was naively assumed that Roman poets were capable of little more than literal translation of their Greek models. In the early part of this century, a reaction set in against Knaack's method, when it was alleged that there was no common source for the two poets and that Nonnus derived his account of Phaethon directly from his reading of Ovid. The case was first made by J. Braune, who examined four episodes common to both works – Phaethon, Cadmus, Actaeon, and Daphne – and argued that correspondences between the two are due to imitation of Ovid by Nonnus. Braune's arguments did not win complete acceptance; it is noteworthy that even his supporters were not entirely convinced by three of his four test passages, for which abundant evidence survives of sources earlier than Ovid. (shrink)

Margaret Macdonald was at the institutional heart of analytic philosophy in Britain in the mid-twentieth century. Yet, her views on the nature of philosophical theories diverge quite considerably from those of many of her contemporaries. In this paper, I focus on her 1953 article ‘Linguistic Philosophy and Perception’, a provocative paper in which Macdonald argues that the value of philosophical theories is more akin to that of poetry or art than science or mathematics. I do so for two reasons. First, (...) because it reveals just how far Macdonald’s meta- philosophical views diverged from those of many of her contemporaries. Second, because the discussion in LPP pre-empts recent literature on the nature of philosophical inquiry and the efficacy of philosophical arguments. Indeed, Macdonald’s paper is just as likely to provoke discussion today as it was in the 1950s. (shrink)

Berkeley’s likeness principle is the claim that “an idea can be like nothing but an idea”. The likeness principle is intended to undermine representationalism: the view (that Berkeley attributes to thinkers like Descartes and Locke) that all human knowledge is mediated by ideas in the mind which represent material objects. Yet, Berkeley appears to leave the likeness principle unargued for. This has led to several attempts to explain why Berkeley accepts it. In contrast to ‘metaphysical’ and ‘epistemological’ interpretations available in (...) the literature, in this paper I defend a ‘conceptual’ interpretation. I argue that Berkeley accepts the likeness principle on the basis of (i) his commitment to the transparency of ideas, and (ii) his account of resemblance which he sets out in his works on vision. Thus, I provide an explanation for Berkeley’s reasons for accepting the likeness principle which, appropriately, focuses on his views concerning ideas and likeness. (shrink)

This paper provides a philosophical evaluation of the concept of handedness prevalent but largely unspoken in the scientific literature. This literature defines handedness as the preference or ability to use one hand rather than the other across a range of common activities. Using the philosophical discipline of phenomenology, I articulate and critique this conceptualization of handedness. Phenomenology shows defining a concept of handedness by focusing on hand use leads to a right hand biased concept. I argue further that a phenomenological (...) model based in spatial orientation rather than hand use provides a more inclusive concept of handedness. (shrink)

Many competent speakers initially judge that (i) is true and (ii) isfalse, though they know that (iii) is true. (i) Superman leaps more tallbuildings than Clark Kent. (ii) Superman leaps more tall buildings thanSuperman. (iii) Superman is identical with Clark Kent. Semanticexplanations of these intuitions say that (i) and (ii) really can differin truth-value. Pragmatic explanations deny this, and say that theintuitions are due to misleading implicatures. This paper argues thatboth explanations are incorrect. (i) and (ii) cannot differ intruth-value, yet (...) the intuitions are not due to implicatures, but ratherto mistakes in evaluating (i) and (ii). (shrink)

It is argued that causal understanding originates in experiences of acting on objects. Such experiences have consistent features that can be used as clues to causal identification and judgment. These are singular clues, meaning that they can be detected in single instances. A catalog of 14 singular clues is proposed. The clues function as heuristics for generating causal judgments under uncertainty and are a pervasive source of bias in causal judgment. More sophisticated clues such as mechanism clues and repeated interventions (...) are derived from the 14. Research on the use of empirical information and conditional probabilities to identify causes has used scenarios in which several of the clues are present, and the use of empirical association information for causal judgment depends on the presence of singular clues. It is the singular clues and their origin that are basic to causal understanding, not multiple instance clues such as empirical association, contingency, and conditional probabilities. (shrink)

In this important new book in the IPPP series, a group of leading thinkers in psychiatry, psychology, and philosophy offer alternative perspectives that address both the scientific and clinical aspects of psychiatric validation, emphasizing throughout their philosophical and historical considerations.

William Molyneux was born in Dublin, studied in Trinity College Dublin, and was a founding member of the Dublin Philosophical Society (DPS), Ireland’s counterpart to the Royal Society in London. He was a central figure in the Irish intellectual milieu during the Early Modern period and – along with George Berkeley and Edmund Burke – is one of the best-known thinkers to have come out of that context and out of Irish thought more generally. In 1688, when Molyneux wrote the (...) letter to Locke in which he posed the now famous question about a man born blind made to see, he was an active member of the DPS and was on familiar terms with several other key figures in Irish philosophy at the time. For the most part, Irish thinkers in the seventeenth and eighteenth centuries answered “no” to Molyneux’s question of whether a blind man made to see could distinguish, by sight alone, between a cube and a sphere. (shrink)

In September 2008, the European Organization for Nuclear Research (CERN) scientists successfully switched on the historic biggest physics device, the Large ...

"This book is an augmented and updated translation by the author of Theorie des Subjekts: Subjectiviteat und Identiteat zwischen Moderne und Postmoderne, Teubingen, Francke-UTB, 2010 (3rd ed.)"--Title page verso.

In my contribution to this Concise Collection on Margaret Cavendish, I focus on teaching Cavendish’s work in the context of philosophy (and, more specifically, Early Modern Philosophy). I have three aims. First, to explain why teaching women from philosophy’s history is crucially important to the discipline. Second, to outline my own reflections on teaching Cavendish’s philosophy. Third, to defend a specific claim about the benefits of teaching Cavendish to philosophy students; namely, that introducing biographical detail alongside philosophical ideas enriches the (...) learning experience. (shrink)

When reproductive and genetic technologies spurred an extended German policy debate, the issues at stake went beyond the technologies to include the very meaning of “ethics” and the respective roles of ethicists and of the public in thinking about ethical questions.

Since its original publication in 1975, this groundbreaking work has awakened millions of people to the existence of "speciesism"—our systematic disregard of nonhuman animals—inspiring a worldwide movement to transform our attitudes to animals and eliminate the cruelty we inflict on them. In Animal Liberation, author Peter Singer exposes the chilling realities of today’s "factory farms" and product-testing procedures—destroying the spurious justifications behind them, and offering alternatives to what has become a profound environmental and social as well as moral issue. (...) An important and persuasive appeal to conscience, fairness, decency, and justice, it is essential reading for the supporter and the skeptic alike. (shrink)

Alexis Anne-Braun Dans cet article, je présente quelques-uns des enjeux du débat en philosophie contemporaine sur la photographie. Ce débat, comme cela a déjà été noté dans un certain nombre de publications récentes, est en fait hanté par une question sceptique, qui fut posée à la photographie dès son invention : si l’image photographique s’excepte du régime traditionnel de la représentation et si elle est bien le résultat d’une prise de vue automatique, en quel sens pouvons-nous encore dire qu’elle (...) est artistique? Il me semble que le concept goodmanien d’exemplification permet de répondre au défi lancé par le sceptique. J’essaie de montrer pourquoi. Plus encore, je m’emploie à montrer comment le concept goodmanien d’exemplification pourrait s’accommoder assez bien de la spécificité du médium photographique. (shrink)

Prospect Theory: For Risk and Ambiguity, provides a comprehensive and accessible textbook treatment of the way decisions are made both when we have the statistical probabilities associated with uncertain future events and when we lack them. The book presents models, primarily prospect theory, that are both tractable and psychologically realistic. A method of presentation is chosen that makes the empirical meaning of each theoretical model completely transparent. Prospect theory has many applications in a wide variety of disciplines. The material in (...) the book has been carefully organized to allow readers to select pathways through the book relevant to their own interests. With numerous exercises and worked examples, the book is ideally suited to the needs of students taking courses in decision theory in economics, mathematics, finance, psychology, management science, health, computer science, Bayesian statistics, and engineering. (shrink)