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26Addressing ethical challenges of disclosure in dementia prediction: limitations of current guidelines and suggestions to proceedBMC Medical Ethics 21 (1): 1-11. 2020.Background Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected. Main text This paper aims to identify the challenges of disclosure in the context of…Read more
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15Patient Representation: Mind the Gap Between Individual and Collective ClaimsAmerican Journal of Bioethics 20 (4): 28-30. 2020.With the increasing attention paid to patient participation in both health care policy-making and health care research, McCoy and colleagues (2020) point to a key ethical issue, namely the quest fo...
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22Cross-Cultural Comparisons on Surrogacy and Egg Donation: Interdisciplinary Perspectives From India, Germany and Israel (edited book)Springer Verlag. 2018.This book is the first to bring together an interdisciplinary collection of essays on surrogacy and egg donation from three socially, legally and culturally distinct countries - India, Israel and Germany. It presents contributions from experts in the field of social and cultural sciences, bioethics, law as well as psychology and provides critical-reflective comparative analysis of the socio-ethical factors shaping surrogacy and egg donation practices across these three countries. This book highl…Read more
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585Public knowledge and attitudes towards consent policies for organ donation in Europe. A systematic reviewTransplantation Reviews 33 (1): 1-8. 2019.Background: Several countries have recently changed their model of consent for organ donation from opt-in to opt-out. We undertook a systematic review to determine public knowledge and attitudes towards these models in Europe. Methods: Six databases were explored between 1 January 2008 and 15 December 2017. We selected empirical studies addressing either knowledge or attitudes towards the systems of consent for deceased organ donation by lay people in Europe, including students. Study selection,…Read more
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34Exploring the Positions of German and Israeli Patient Organizations in the Bioethical Context of End-of-Life PoliciesHealth Care Analysis 22 (2): 143-159. 2014.Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of …Read more
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14When it gets personal in “personalised medicine”: clinical researchers’ and patients’ perspectives on counseling and communication in an empirical–ethical comparisonEthik in der Medizin 25 (3): 215-222. 2013.ZusammenfassungDas Paradigma einer „personalisierten Medizin“ in der klinischen Forschung und Praxis wirft verschiedene Fragen nach Notwendigkeit, Erwartung, Chancen und Risiken auf. In einer laufenden empirisch-ethischen Studie untersuchen wir klinische Forscher- und Patientenperspektiven hinsichtlich des zukünftigen Einsatzes „personalisierter Medizin“ beim Rektumkarzinom. Ziel der Studie ist es, mittels Interviews mit Ärzten/forschern und Patienten und teilnehmender Beobachtung bei Arzt-Patie…Read more
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16Convincing for the good cause? Techniques of public health communication and their ethical implicationsEthik in der Medizin 31 (1): 23-44. 2019.Der Beitrag analysiert Techniken öffentlicher Gesundheitskommunikation und skizziert im Ausblick Minimalbedingungen für ihre ethische Vertretbarkeit. Dazu wird erstens an einem aktuellen Beispiel veranschaulicht, wie mittels Text und Bild die Öffentlichkeit überzeugt werden soll, ein bestimmtes Gesundheitsverhalten an den Tag zu legen. Zweitens werden anhand der internationalen Ethik-Debatte fünf Grundtypen von Techniken in der Gesundheitskommunikation (Information, Argumentation, Persuasion, Ma…Read more
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19Patient Representation and Advocacy for Alzheimer Disease in Germany and IsraelJournal of Bioethical Inquiry 15 (3): 369-380. 2018.This paper analyses self-declared aims and representation of dementia patient organizations and advocacy groups in relation to two recent upheavals: the critique of social stigmatization and biomedical research focusing on prediction. Based on twenty-six semi-structured interviews conducted in 2016–2017 with members, service recipients, and board representatives of POs in Germany and Israel, a comparative analysis was conducted, based on a grounded theory approach, to detect emerging topics with…Read more
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26One For All, All For One? Collective Representation in Healthcare PolicyJournal of Bioethical Inquiry 15 (3): 337-340. 2018.Healthcare collectives, such as patient organizations, advocacy groups, disability organizations, professional associations, industry advocates, social movements, and health consumer organizations have been increasingly involved in healthcare policymaking. Such collectives are based on the idea that individual interests can be aggregated into collective interests by participation, deliberation, and representation. The topic of collectivity in healthcare, more specifically collective representati…Read more
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44The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology LiteratureFrontiers in Sociology 18 (1): 1-22. 2017.The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of t…Read more
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18Physicians’ communication patterns for motivating rectal cancer patients to biomarker research: Empirical insights and ethical issuesClinical Ethics 13 (4): 175-188. 2018.In clinical research – whether pharmaceutical, genetic or biomarker research – it is important to protect research participants’ autonomy and to ensure or strengthen their control over health-related decisions. Empirical–ethical studies have argued that both the ethical concept and the current legalistic practice of informed consent should be adapted to the complexity of the clinical environment. For this, a better understanding of recruitment, for which also the physician–patient relationship p…Read more
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23Medicine, market and communication: ethical considerations in regard to persuasive communication in direct-to-consumer genetic testing servicesBMC Medical Ethics 19 (1): 1-11. 2018.Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs…Read more
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30“I would rather have it done by a doctor”—laypeople’s perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implicationsMedicine, Health Care and Philosophy 22 (1): 31-40. 2019.Direct-to-consumer genetic testing has been available for several years now, with varying degrees of regulation across different countries. Despite a restrictive legal framework it is possible for consumers to order genetic tests from companies located in other countries. However, German laypeople’s awareness and perceptions of DTC GT services is still unexplored. We conducted seven focus groups with German laypeople to explore their perceptions of and attitudes towards commercial genetic testin…Read more
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24The Vulnerability of Study Participants in the Context of Transnational Biomedical Research: From Conceptual Considerations to Practical ImplicationsDeveloping World Bioethics 17 (2): 121-133. 2016.Outsourcing clinical trials sponsored by pharmaceutical companies from industrialized countries to low- -income countries – summarized as transnational biomedical research – has lead to many concerns about ethical standards. Whether study participants are particularly vulnerable is one of those concerns. However, the concept of vulnerability is still vague and varies in its definition. Despite the fact that important international ethical guidelines such as the Declaration of Helsinki by the Wor…Read more
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60Epistemic injustice in dementia and autism patient organizations: An empirical analysisAJOB Empirical Bioethics 8 (4): 221-233. 2017.
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28Epistemische Gerechtigkeit. Sozialempirie und Perspektivenpluralismus in der Angewandten EthikDeutsche Zeitschrift für Philosophie 60 (2): 269-283. 2012.
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30“What the patient wants…”: Lay attitudes towards end-of-life decisions in Germany and IsraelMedicine, Health Care and Philosophy 18 (3): 329-340. 2015.National legislation, as well as arguments of experts, in Germany and Israel represent opposite regulatory approaches and positions in bioethical debates concerning end-of-life care. This study analyzes how these positions are mirrored in the attitudes of laypeople and influenced by the religious views and personal experiences of those affected. We qualitatively analyzed eight focus groups in Germany and Israel in which laypeople were asked to discuss similar scenarios involving the withholding …Read more
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51Zum Stellenwert von Betroffenheit, Öffentlichkeit und Deliberation im empirical turn der MedizinethikEthik in der Medizin 21 (3): 223-234. 2009.Für die Medizinethik liegt ein großes Potential sozialempirischer Forschung in der Erhöhung der Kontextsensitivität, dem Sichtbarmachen von sozialen und institutionellen Rollen und dem Einbringen von Stimmen, die bislang zu wenig gehört worden sind. Diese Möglichkeiten bergen jedoch auch das Risiko, dass Deliberation und Argumentation durch Umfragen und Meinungserhebungen ersetzt werden. Der in den Sozialwissenschaften einsetzende participatory turn gibt Anlass, Anliegen und Methoden klassischer…Read more
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2Medizinethische Probleme der XenotransplantationEthik in der Medizin 14 (4): 234-251. 2002.Zusammenfassung. Die Verpflanzung tierischer Organe (Xenotransplantation) wird als neue Zukunftsoption der Transplantationsmedizin gehandelt. Bei dieser Technik stellen sich zahlreiche ungelöste biomedizinische und ethische Probleme. Der Beitrag diskutiert vorrangig die medizinethischen Probleme für Patienten, Ärzte und Dritte, die sich bei klinischen Versuchen zur Verfügung stellen, und problematisiert die Abwägung der Chancen und Risiken. Zudem zeigen inhaltliche Parallelen zwischen den xenoge…Read more
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29Beyond cultural stereotyping: views on end-of-life decision making among religious and secular persons in the USA, Germany, and IsraelBMC Medical Ethics 18 (1): 13. 2017.End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confr…Read more
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89What German experts expect from individualized medicine: problems of uncertainty and future complication in physician–patient interactionClinical Ethics 7 (2): 86-93. 2012.‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight i…Read more
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104The Cultural Context of End-of-Life Ethics: A Comparison of Germany and IsraelCambridge Quarterly of Healthcare Ethics 19 (3): 381-394. 2010.End-of-life decisions concerning euthanasia, stopping life-support machines, or handling advance directives are very complex and highly disputed in industrialized, democratic countries. A main controversy is how to balance the patient’s autonomy and right to self-determination with the doctor’s duty to save life and the value of life as such. These EoL dilemmas are closely linked to legal, medical, religious, and bioethical discourses. In this paper, we examine and deconstruct these linkages in …Read more
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59Interpreting Advance Directives: Ethical Considerations of the Interplay Between Personal and Cultural Identity (review)Health Care Analysis 17 (2): 158-171. 2009.In many industrialized countries ethicists and lawyers favour advance directives as a tool to guarantee patient autonomy in end-of-life-decisions. However, most citizens seem reluctant to adopt the practice; the number of patients who have an advance directive is low across most countries. The article discusses the key argument for seeing such documents as an instrument of self-interpretation and life-planning, which ultimately have to be interpreted by third parties as well. Interpretation by t…Read more
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61Research across the disciplines: a road map for quality criteria in empirical ethics researchBMC Medical Ethics 15 (1): 17. 2014.Research in the field of Empirical Ethics (EE) uses a broad variety of empirical methodologies, such as surveys, interviews and observation, developed in disciplines such as sociology, anthropology, and psychology. Whereas these empirical disciplines see themselves as purely descriptive, EE also aims at normative reflection. Currently there is literature about the quality of empirical research in ethics, but little or no reflection on specific methodological aspects that must be considered when …Read more
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69Why the way we consider the body matters – Reflections on four bioethical perspectives on the human bodyPhilosophy, Ethics, and Humanities in Medicine 2 30. 2007.Within the context of applied bioethical reasoning, various conceptions of the human body are focused upon by the author in relation to normative notions of autonomy
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73Medizinethik und Empirie – Standortbestimmungen eines spannungsreichen VerhältnissesEthik in der Medizin 21 (3): 183-186. 2009.
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11Zwischen Selbst-Deutung und Interpretation durch Dritte:: Zum Wechselverhältnis von soziokulturellen und ethischen Aspekten von PatientenverfügungenEthik in der Medizin 20 (3): 181-190. 2008.ZusammenfassungDie enorme Bedeutung, die Patientenverfügungen in der aktuellen ethisch-rechtlichen Diskussion zukommt, steht in gewissem Widerspruch zur geringen öffentlichen Bereitschaft, eine solche abzufassen. Dies wirft die ethische Frage auf, welche Argumente für das Abfassen von Patientenverfügungen sprechen. Zentral sind hierbei strebensethische Aspekte, die auf das Wünschenswerte und Lebenskluge einer solchen Entscheidung abheben. Mit einem um die soziokulturelle Perspektive erweiterten …Read more
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40What German experts expect from individualized medicine: problems of uncertainty and future complication in physician-patient interactionClinical Ethics 7 (2): 86-93. 2012.‘Individualized medicine’ is an emerging paradigm in clinical life science research. We conducted a socio-empirical interview study in a leading German clinical research group, aiming at implementing ‘individualized medicine’ of colorectal cancer. The goal was to investigate moral and social issues related to physician–patient interaction and clinical care, and to identify the points raised, supported and rejected by the physicians and researchers. Up to now there has been only limited insight i…Read more
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21Zum Stellenwert von Betroffenheit, Öffentlichkeit und Deliberation im empirical turn der MedizinethikEthik in der Medizin 21 (3): 223-234. 2009.ZusammenfassungFür die Medizinethik liegt ein großes Potential sozialempirischer Forschung in der Erhöhung der Kontextsensitivität, dem Sichtbarmachen von sozialen und institutionellen Rollen und dem Einbringen von Stimmen, die bislang zu wenig gehört worden sind. Diese Möglichkeiten bergen jedoch auch das Risiko, dass Deliberation und Argumentation durch Umfragen und Meinungserhebungen ersetzt werden. Der in den Sozialwissenschaften einsetzende participatory turn gibt Anlass, Anliegen und Metho…Read more