Peter Dabrock's research while affiliated with Friedrich-Alexander-University of Erlangen-Nürnberg and other places

Publications (92)

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The chapter discusses different objectives of public participation in synthetic biology and suggests six focus areas across all governance dimensions, hard law, soft law, education, research impact, and research infrastructure, to design effective participation in synthetic biology. The authors identified three focus areas in participation—communic...
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The chapter deals with the different positions in engaging the public(s) in the field of synthetic biology and provides an overview of the most prominent avenues in research, policy, and non-governmental action. Against the notion that participation is merely “management of perceptions” or “informing the public”, the authors argue for a holistic pe...
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In the conclusion, the authors argue that public participation should not be seen as a “one fits all” solution to a “crisis of trust” in emerging biotechnologies, but rather as a tool to work on collective visions for the future. To promote a productive approach in designing participatory strategies and formats, we need to consider the structural p...
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The authors provide ten recommendations for participation in synthetic biology: from questions of distributional justice to communicative efforts via resources and training to the technical infrastructure. Looking more closely at the structural prerequisites, value systems and educational needs of the stakeholders involved in SB governance allow us...
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The chapter discusses how governance in emerging biotechnologies has been conceptualized to deal with complex technological, ethical, and social questions. The authors explore the challenges in designing governance frameworks generally and for synthetic biology particularly. An understanding of different approaches in governance, their advantages a...
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When talking about public participation and the regulatory decision-making process, it is crucial to think about the right time and purpose to involve different stakeholders. The chapter explores circumstantial prerequisites for participatory approaches on the basis of a more recent case study: synthetically produced vaccines against the coronaviru...
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The chapter discusses social and cultural implications and current areas of conflict in synthetic biology. Since there is the challenge of potentially misleading imaginaries and an overall uncertainty regarding research and application in the field, it is quintessential to consider the category of social trust as an underlying value that shapes our...
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Artificial Intelligence-based decision support systems (AI-DSS) to improve hemodialysis therapy are currently under development. However, the influence of AI-DSS on shared decision making (SDM) in hemodialysis patients has not been studied so far. We performed a Wizard of Oz experiment, using a sham AI-DSS suggesting ultrafiltration volume at the b...
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Introduction Artificial intelligence–driven decision support systems (AI–DSS) have the potential to help physicians analyze data and facilitate the search for a correct diagnosis or suitable intervention. The potential of such systems is often emphasized. However, implementation in clinical practice deserves continuous attention. This article aims...
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Patient care after kidney transplantation requires integration of complex information to make informed decisions on risk constellations. Many machine learning models have been developed for detecting patient outcomes in the past years. However, performance metrics alone do not determine practical utility. We present a newly developed clinical decis...
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The use of Artificial Intelligence and Big Data in health care opens up new opportunities for the measurement of the human. Their application aims not only at gathering more and better data points but also at doing it less invasive. With this change in health care towards its extension to almost all areas of life and its increasing invisibility and...
Preprint
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Patient care after kidney transplantation requires integration of complex information to make informed decisions on risk constellations. Many machine learning models have been developed for detecting patient outcomes in the past years. However, performance metrics alone do not determine practical utility. Often, the actual performance of medical pr...
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Scientific publications about machine learning in healthcare are often about implementing novel methods and boosting the performance - at least from a computer science perspective. However, beyond such often short-lived improvements, much more needs to be taken into consideration if we want to arrive at a sustainable progress in healthcare. What do...
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A look at the life courses of individuals helps to uncover the grounds and limitations of the justice demanded of others. In doing so we can take a diachronic or synchronic perspective. By diachronic perspective I mean a person’s life course over time. By synchronic perspective I mean the co-existence of different life courses at a certain point in...
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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...
Book
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In dieser Governance-Perspektive untersuchen wir, was Datensouveränität aus ethischer und rechtlicher Perspektive bedeuten kann und entwickeln mittels des Modells der dynamischen Einwilligung konkrete Governance-Ansätze für den Gesundheitsbereich. Im Zeitalter der Digitalisierung stellt uns der verantwortungsvolle Umgang mit Daten vor eine Herausfo...
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Zusammenfassung In den vergangenen Jahren tritt Souveränität als Leitkonzept im Kontext der Digitalisierung immer häufiger in Erscheinung. Im Folgenden werden wir einen spezifischen Fall von Datensouveränität in den Blick nehmen und entfalten: die Datensouveränität von Patientinnen im deutschen Gesundheitswesen. Wir argumentieren, dass Datensouverä...
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Zusammenfassung Die Einwilligung stellt im deutschen wie im europäischen Recht die wichtigste Voraussetzung (Erlaubnistatbestand) für den Umgang mit personenbezogenen Daten dar. Mit Blick auf die Datenqualität und Repräsentativität kann ein striktes Einwilligungserfordernis ein Hemmnis für datenintensive Forschung darstellen. Ein Versuch mit diesem...
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Zusammenfassung Wir haben argumentiert, dass Datensouveränität die Befähigung von Akteuren zu informationeller Freiheitsgestaltung durch Kontrolle der Verwendung sie betreffender Daten bezeichnet (Kap. 1 ). Im Anschluss haben wir den Dynamic Consent als Umsetzungsmechanismus von Datensouveränität vorgeschlagen (Kap. 2 ). Im Folgenden fokussieren wi...
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This article is a revised version of our proposal for the establishment of the legal concept of risk-adjusted prevention in the German healthcare system to regulate access to risk-reduction measures for persons at high and moderate genetic cancer risk (Meier et al. Risikoadaptierte Prävention'. Governance Perspective für Leistungsansprüche bei gene...
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Background: Risk-adjusted cancer screening and prevention is a promising and continuously emerging option for improving cancer prevention. It is driven by increasing knowledge of risk factors and the ability to determine them for individual risk prediction. However, there is a knowledge gap between evidence of increased risk and evidence of the ef...
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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...
Preprint
UNSTRUCTURED The Covid-19 pandemic has put new demands on the medical systems worldwide. The pressure of taking far-reaching decisions within multiply limited resources under the constraint that personal contact must be minimized has evoked the question if technical support in the form of Artificial Intelligence (AI) could help leverage these chall...
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One of the central aims of synthetic biology (SB) is to better understand the mechanisms of life by trying to develop and synthesize new forms and perhaps modes of life. While the question of what is life has occupied mankind for centuries, there is a lack of empirical research examining the basic concepts of life scientists within SB themselves re...
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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. Nevert...
Book
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Die Nationale Akademie der Wissenschaften Leopoldina und die Konrad-Adenauer-Stiftung widmeten sich in zwei gemeinsamen Veranstaltungen im Jahr 2017 der Frage nach der Beeinflussung von Fortpflanzung und den gesellschaftlichen Rahmenbedingungen, die den Wunsch danach befördern. Das Aufschieben der Fortpflanzung in ein höheres Lebensalter ist ein ze...
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This structured literature analysis aims to map the current, emerging, and predicted future of synthetic biology (SB) by putting the focus on the implied conceptual, societal, and ethical challenges. The central objective of the analysis is to provide an initial systematization of the ethical and socio‐scientific debate on SB by structuring and cat...
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We propose that the notion of individual sovereignty encompasses more than having the power to exclude others from one’s personal space. Instead, sovereignty is realized at least in part along outward-reaching, interactive and participatory dimensions. On the basis of reflections from gift theory, we argue that donations can generate social bonds,...
Book
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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 nece...
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Synthetic biology is currently one of the most frequently addressed emerging biotechnologies. Developments within this field receive a great deal of attention in media coverage, in which they are frequently illustrated by certain forms of metaphorical speech. Although it can be assumed that societal perceptions and evaluations of emerging biotechno...
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A large Max Planck‐based German research consortium ('MaxSynBio') was formed to investigate living systems from a fundamental perspective. The research program of MaxSynBio relies solely on the bottom‐up approach to Synthetic Biology. MaxSynBio focuses on the detailed analysis and understanding of essential processes of life, via their modular reco...
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A large Max Planck‐based German research consortium ('MaxSynBio') was formed to investigate living systems from a fundamental perspective. The research program of MaxSynBio relies solely on the bottom‐up approach to Synthetic Biology. MaxSynBio focuses on the detailed analysis and understanding of essential processes of life, via their modular reco...
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Debates about moral, legal and political attributions of responsibility do not, as can be seen in the past, occur in a vacuum. Against this background, the following chapter does not directly address the pending ethical questions about human germline editing, but calls attention to several stages of social and ethical discourse. The goal, not simpl...
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Genetic tests can detect the predisposition to various diseases. The demand for gene diagnostics and corresponding prophylactic measures is increasing steadily. In the German healthcare system, however, legal uncertainties exist as to whether a mere risk of disease is reason enough to bear the costs for prophylactic measures. When medically effecti...
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Zusammenfassung Aktuell fehlt es nicht nur an einem klaren Reglement, ob und - wenn ja - in welchem Maße prophylaktische Maßnahmen bei genetischen Risikopersonen eine Regelleistung der öffentlichen Gesundheitssystemen darstellen sollen, sondern auch an einem Konzept, mittels dessen diese Frage konsistent und transparent beantwortet werden könnte. D...
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Das Zusammenspiel von Zentralität und Dezentralität stellt nicht nur eine technische Herausforderung in der Umsetzung der Energiewende dar, sondern markiert auch die politische und gesellschaftliche Aufgabe, angemessene Strategien für die Governance der Energiesysteme der Zukunft zu entwickeln. Während „Partizipation“ eines der Kernkonzepte in alle...
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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 fie...
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Synthetic Biology (SB) is one of the leading branches within the current bundle of emerging biotechnologies. Following the hypothesis that the further development of SB will be negotiated at the interface of science and society, this chapter points out the current developments and challenges within SB by addressing the scientific as well as the soc...
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By proposing a moratorium on human germ line editing using CRISPR, scientists have entered an all-or-nothing wager with public opinion. A better approach would be to convene a rational and broad discussion of the fair and ethical application and regulation of gene editing and other new technologies. © 2016 The Authors. Published under the terms of...
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Was zeichnet die klassische Reparaturmedizin aus? Welche Entwicklung setzt mit Biomarker-basierter Medizin und Biobanken ein? Warum entsteht mit der sog. personalisierten Medizin ein präventiver Imperativ? Kann man Big Data als große Rehybridisierungsmaschine bezeichnen? Welche sozialen Folgen zeitigt die Biomarker-basierte und Big-Data-getriebene...
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The current developments and (postulated) products in the field of synthetic biology have given rise to numerous metaphors within the discourses on interpretation and plausibility. Apart from the metaphors seeming to be especially ‘prominent’, such as ‘playing God’ or ‘creating life’ (Ried and Dabrock 2011), another ‘player’ appears on the field of...
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Science communication is a widely debated issue, particularly in the field of biotechnology. However, the views on the interface between science and society held by scientists who work in the field of emerging biotechnologies are currently insufficiently explored. Therefore filling this gap is one of the urgent desiderata in the further development...
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Synthetic biology is currently one of the most debated emerging biotechnologies. The societal assessment of this technology is primarily based on contributions by scientists and policy makers, who focus mainly on technical challenges and possible risks. While public dialogue is given, it is yet rather limited. This study explores public debates con...
Chapter
Synthetic Biology (SB) is one of the leading branches within the current bundle of emerging biotechnologies. Following the hypothesis that the further development of SB will be negotiated at the interface of science and society, this chapter points out the current developments and challenges within SB by addressing the scientific as well as the soc...
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The article challenges some normative and evaluative prerequisites and consequences of distinct approaches put forward in the current German debate on (physician-) assisted suicide. First, two alternative types of understanding and using the concept of self-determination (Selbstbestimmung) within this debate are identified, concluding with the resu...
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abstract: The concept and determination of death by neurological or cardio-circulatory criteria play a crucial role for medical practice, society, and the law. Academic debates on death determination have regained momentum, and recent cases involving the neurological determination of death (“brain death”) in the United States have sparked sustained...
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Befürworter wie Kritiker der Synthetischen Biologie sind sich darin einig, dass das transformative Potential dieser Biotechnologie zu Verschiebungen in der Deutung kultureller Leitunterscheidungen - z.B. im Verständnis des Lebensbegriffs - führen und deshalb neue gesellschaftliche Aushandlungsprozesse im Umgang mit lebenswissenschaftlichen Innovati...
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The creation of socially and technically robust biobank privacy regimes presupposes knowledge of and compliance with legal rules, professional standards of the biomedical community, and state-of-the-art data safety and security measures. The strategies in privacy management and data protection presented in this review show a trend that goes beyond...
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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-Wa...
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Biotechnological and life science innovations do not only lead to immense progress in diverse fields of natural science and technical research and thereby drive economic development, they also fundamentally affect the relationship between nature, technology and society. Taken this seriously, the ethical and societal assessment of emerging biotechno...
Book
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Final Report of the PrivateGen research consortium (20009-2012) on privacy and information control in biobanking
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The notions ‘common good’ and ‘public good’ are mostly used as synonyms in bioethical discussion of biobanks, but have different origins. As a consequence, they should be applied differently. In this article, the respective characteristics are worked out and then subsequently examined which consent models emerge from them. Distinguishing normative...
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Die Diskussionen um die sog. individualisierte Medizin, ihre Chancen, Möglichkeiten und Visionen prägen die aktuellen Debatten um die Zukunft von Medizin und Gesundheitssystem. Neben der prinzipiellen Nachfrage, was eigentlich Gegenstand einer solchen individualisierten Medizin sei, gibt es immer wieder auch ethische Bedenken und Rückfragen, die ge...
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Biobanks will only be established successfully and run sustainably if the principles, procedures of governance, management, control and participation are built solidly on trust. Against this backdrop, this paper proposes the idea that – subject to the development of some reasonable conditions – we cannot deny a certain moral obligation to participa...
Book
Biobanks are promising instruments of biomedical research and of transnational medicine in particular. Ethical, legal and social issues associated with biobanking, however, have recently led to a more critical view on this concept. All efforts addressing these concerns have been grounded on well-established standards of biomedical ethics such as in...
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Biobanks, collecting human specimen, medical records, and lifestyle-related data, face the challenge of having contradictory missions: on the one hand serving the collective welfare through easy access for medical research, on the other hand adhering to restrictive privacy expectations of people in order to maintain their willingness to participate...
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By combining natural and engineering sciences, synthetic biology aims at constructing and creating new living structures and organisms. This rationale raises fundamental theological, philosophical and anthropological questions, which are discussed in this article. Synthetic biology is neither appropriately characterized as «(original) creation» nor...
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Neue biotechnologische Innovationen und Möglichkeiten finden, sobald sie am Horizont der fachwissenschaftlichen wie der öffentlichen Wahrnehmung erscheinen, ein geteiltes Echo. Auf die Betonung der Potenziale einer Technologie und als Gegenentwurf zu den visionär aufgeladenen Erwartungen antworten Kritiker mit dem Verweis auf Gefahren und Risiken u...
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Public discourse in continental Europe gives a uniquely prominent place to human dignity. The European Christianities have always taken this notion to be an outgrowth of their theological commitments. This sense of a conceptual continuity between Christianity and secular morality contributes to the way in which these Christianities, especially (but...
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Personal respsonsibility is a prevailing catchword in health policy. Following a predominant understanding which is oriented at the principle of causation, personal responsibility is interpreted in economic terms: Patients should be given a share in the costs of their treatment in cases when they are jointly responsible for their illnesses. Conside...
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Considering obesity as an example, the present study has developed an ethical, legal and psychological understanding of personal responsibility, which aims at enabling and activating health promoting behaviour. Enhancing individual capabilities and modifying social and political factors that have an effect on individual behaviour are highlighted as...
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Soziale Gerechtigkeit gilt vielen – vor allem in Deutschland – noch immer als ein zuhöchst attraktiver Wert politischen Zusammenlebens, der auch als gesellschaftliche Norm zu etablieren sei. Nicht nur in der politischen Rhetorik, sondern auch in der Sozialtheorie und politischen Philosophie schillert der Begriff vielfach. Er ringt vor dem anthropol...
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In the ethical debate over synthetic biology the formula "playing god" is widely used in order to attack this new branch of biotechnology. The article analyses, contextualizes and criticises this usage with respect to the theological concepts of creation, sin and humans as created in the image of God. Against the background of these theological und...
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The primary prevention of childhood obesity requires combined efforts by stakeholders at various societal levels, based on the knowledge from multiple disciplines. The goal of the present study was therefore to analyze current preventive approaches and delineate implications for future prevention research and practice by integrating knowledge from...
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The primary prevention of adult obesity requires combined efforts by stakeholders at various societal levels, based on the knowledge from multiple disciplines. The goal of the present study was, therefore, to analyze current preventive approaches and delineate implications for future prevention research and practice by integrating knowledge from ge...
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Ziel der vorliegenden Studie ist es, aktuelle Ansätze zur primären Prävention der Adipositas bei Erwachsenen in interdisziplinärer Perspektive zu analysieren, um Implikationen für die zukünftige Präventionsforschung und -praxis abzuleiten. Integriert werden Erkenntnisse aus Genetik, Rechts- und Wirtschaftswissenschaften, Psychologie und Sozialethik...
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This article deals with societal challenges of Public Health Genetics and reflects on social justice as its fundamental norm. Accordingly, the first emphasis is put on the difference between the idea of the good and the right. Then the capabilities approach is introduced as the adequate concept of justice in Public Health Genetics. Considering the...
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Thesis (doctoral)--Ruhr-Universität Bochum, 1999. Includes bibliographical references (p.379-396) and index.

Citations

... First, the reader study shows that physicians' predictions align with those of the AI-DSS. However, performance does not improve (AUC-ROC; 0.6413 vs. 0.6314 for rejection; 0.8072 vs. 0.7778 for graft failure) (21). Even though the system seems promising and outperformed physicians on the tasks, additional questions arise of whether such a system would add any value to clinical decision-making, how it should be implemented, and which chances and concerns are seen by physicians. ...
... Ergebnissen unklar sind, warum sollte gerade unter solchen Umständen hinreichend hohe Sicherheit bezüglich des gesellschaftlichen Werts und der Effektivität von Sicherungsmechanismen gegen Verletzungen der Privatsphäre bestehen? Fragen wie diese mag man daher zum Anlass nehmen, statt der Beschränkung oder Aufgabe von Einwilligungserfordernissen eher den zweiten Ansatz zu verfolgen und die Anpassung und Weiterentwicklung von Einwilligungsprozessen voranzutreiben, welche die Präferenzen der Subjekte kontinuierlich einholen, abbilden und bei Verarbeitungsanfragen umsetzen und dabei in der neuen Realität datenintensiver biomedizinischer Forschung sowohl anwendbar als auch gehaltvoll sind (Hummel et al. 2021b). ...
... iKNOW -a paradigmatic approach to support personalized counseling with digital health 1) Would you like to publish your submitted manuscript as preprint? Please make my preprint PDF available to anyone at any time (recommended). ...
... As this risk-based screening is a relatively new concept to the public, there is uncertainty both in how accurate the results are and a lack of clear understanding on how the results would impact screening behaviour and lives [49]. The concept of flagging a healthy individual in screening programs, especially using genetic data, as high-risk for developing a complex disease is not easy to grasp. ...
... Issues such as the increased platformisation and the datafication of contemporary schools over the past decade connected to "tendencies towards pervasive data extraction and surveillance" (Perrotta et al., 2020) can still be deemed a problem of data infrastructure development, an item in the political agenda or a space for activism, rather than a specific professional concern for teachers. This is well depicted by the very little use of open-source software as key to maintaining data sovereignty (Hummel et al., 2021). Though the educators might work to raise awareness, showing young people and families the problem of data trace and reuse for commercial uses, the social media platforms, as far as the educational platforms used (and maybe imposed) at institutional level, leave little space for the teacher agency. ...
... However, in synthetic biology, what is often produced is a redesign of pre-existing organisms for medical, industrial, environmental, or nutritional purposes (Garner, 2021). In addition, synthetic biology is more focused on basic research into the life process and establishing what the minimum requirements are for making a cell from its basic components (Fernau et al., 2020). Anyway, the A-life and synthetic biology are becoming increasingly interrelated, making it difficult to clearly differentiate between them. ...
... Options for users to control their data in a transparent manner can be an effective way to promote trust in PHM systems and contribute to the compliance and trustworthiness of PHM. Furthermore, in light of the ongoing ethical debate about security, privacy, data ownership [28] and data increasingly being seen as a human right [29], armed forces should closely consider who actually owns a soldiers PHM data, and who can access it and under what circumstances. ...
... At present, all dental AI is not autonomous, but only supportive, allowing to lie all responsibility for using it towards the provider or any other stakeholder (e.g. patient); the final control remains with these human users [52]. Different genders, ages, and ethnicities have dissimilar pathological disorders, anatomical landmarks in their jaws, craniofacial characteristics, growing jaws, occlusions, and tooth eruption dates, to name a few [53,54]. ...
... Decentralization and democratization were common notions in related discussions, including the oligopoly of centralized mega-companies [24] and intelligent energy management systems [25]. Designing a practical data sovereignty governance framework without encumbering the innovation energies of data economies has been an emerging issue in these years [26,27]. Ideally, data sovereignty can be promised to some extent through reciprocal data-sharing on well-designed platforms in data space systems [28]. ...
... These risks have led some organizations to argue for a moratorium of some forms of synthetic biology, for example, in a report by Friends of the Earth and some other NGOs (International Center for Technology Assessment ETC Group, 2012). In the mass media and the scientific debate and in government reports it is often argued that the expanded capabilities to design and create living organisms lead to serious ethical challenges (Braun et al., 2019). One of the more spectacular challenges that is often highlighted and which I focus on here is the risk that terrorists make use of scientific results and technologies from synthetic biology to create dangerous bacteria or viruses. ...