•  521
    Public knowledge and attitudes towards consent policies for organ donation in Europe. A systematic review
    with Alberto Molina-Pérez, David Rodríguez-Arias, Janet Delgado-Rodríguez, Myfanwy Morgan, Mihaela Frunza, Gurch Randhawa, Jeantine Reiger-Van de Wijdeven, Eline Schiks, and Sabine Wöhlke
    Transplantation 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
  •  230
    Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-m…Read more
  •  211
    Möglichkeiten und Grenzen von Ethikberatung im Rahmen der COVID-19-Pandemie
    with Georg Marckmann, Gerald Neitzke, Annette Riedel, Jan Schildmann, Alfred Simon, Ralf Stoecker, Jochen Vollmann, Eva Winkler, and Christin Zang
    Ethik in der Medizin 32 (2): 195-199. 2020.
    Das deutsche Gesundheitswesen steht durch die schnell steigende Anzahl an CO- VID-19-Erkrankten vor erheblichen Herausforderungen. In dieser Krisensituation sind alle Beteiligten mit ethischen Fragen konfrontiert, beispielsweise nach gerech- ten Verteilungskriterien bei begrenzten Ressourcen und dem gesundheitlichen Schutz des Personals angesichts einer bisher nicht therapierbaren Erkrankung. Daher werden schon jetzt klinische und ambulante Ethikberatungsangebote verstärkt mit Anfragen nach Unte…Read more
  •  158
    BackgroundThe increasing debate on financial incentives for organ donation raises concerns about a "commodification of the human body". Philosophical-ethical stances on this development depend on assumptions concerning the body and how people think about it. In our qualitative empirical study we analyze public attitudes towards organ donation in their specific relation to conceptions of the human body in four European countries (Cyprus, Germany, the Netherlands and Sweden). This approach aims at…Read more
  •  102
    Ethical considerations of the human–animal-relationship under conditions of asymmetry and ambivalence
    Journal of Agricultural and Environmental Ethics 19 (1): 7-16. 2005.
    Ethical reflection deals not only with the moral standing and handling of animals, it should also include a critical analysis of the underlying relationship. Anthropological, psychological, and sociological aspects of the human–animal-relationship should be taken into account. Two conditions, asymmetry and ambivalence, are taken as the historical and empirical basis for reflections on the human–animal-relationship in late modern societies. These conditions explain the variety of moral practice, …Read more
  •  97
    The Cultural Context of End-of-Life Ethics: A Comparison of Germany and Israel
    with Aviad Raz and Carmel Shalev
    Cambridge 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
  •  95
    Healthcare provision, like many other sectors of society, is undergoing major changes due to the increased use of data-driven methods and technologies. This increased reliance on big data in medicine can lead to shifts in the norms that guide healthcare providers and patients. Continuous critical normative reflection is called for to track such potential changes. This article presents the results of an interview-based study with 20 German and Swiss experts from the fields of medicine, life scien…Read more
  •  83
    ‘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
  •  73
    “Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding of ethics,” …Read more
  •  73
    Purpose Although the term “responsibility” plays a central role in bioethics and public health, its meaning and implications are often unclear. This paper defends the importance of a more systematic conception of responsibility to improve moral philosophical as well as descriptive analysis. Methods We start with a formal analysis of the relational conception of responsibility and its meta-ethical presuppositions. In a brief historical overview, we compare global-collective, professional, persona…Read more
  •  72
    Medizinethik und Empirie – Standortbestimmungen eines spannungsreichen Verhältnisses
    with Jan Schildmann
    Ethik in der Medizin 21 (3): 183-186. 2009.
  •  65
    Public Moralities Concerning Donation and Disposition of Organs: Results from a Cross-European Study
    Cambridge Quarterly of Healthcare Ethics 17 (3): 308-317. 2008.
    There are not many international consensuses in the governance of biomedicine. One that exists concerns a general reluctance toward a commercialization of organ procurement. However, with reference to the problem of there is an increasingly louder call in ethical and legal discourse to and to establish a debate on financial incentives Other ethicists and jurists criticize this development, and warn of injustice, exploitation of the poor, and a commodification of the human body
  •  59
    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
  •  56
    Research across the disciplines: a road map for quality criteria in empirical ethics research
    with Marcel Mertz, Julia Inthorn, Günter Renz, Lillian Geza Rothenberger, Sabine Salloch, Jan Schildmann, and Sabine Wöhlke
    BMC 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
  •  56
    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
  •  53
    Epistemic injustice in dementia and autism patient organizations: An empirical analysis
    with Karin Jongsma and Elisabeth Spaeth
    AJOB Empirical Bioethics 8 (4): 221-233. 2017.
  •  51
    Exploring the Positions of German and Israeli Patient Organizations in the Bioethical Context of End-of-Life Policies
    with Aviad Raz and Isabella Jordan
    Health 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
  •  50
    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
  •  44
    Diversity and uniformity in genetic responsibility: moral attitudes of patients, relatives and lay people in Germany and Israel (review)
    with Aviad E. Raz
    Medicine, Health Care and Philosophy 12 (4): 433-442. 2009.
    The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, whic…Read more
  •  43
    The debate over financial incentives and market models for organ procurement represents a key trend in recent bioethics. In this paper, we wish to reassess one of its central premises—the idea of organ shortage. While the problem is often presented as an objective statistical fact that can be taken for granted, we will take a closer look at the underlying framework expressed in the common rhetoric of “scarcity”, “shortage” or “unfulfilled demand”. On the basis of theoretical considerations as we…Read more
  •  43
    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
  •  39
    Responsibility Revisited
    with Aviad Raz
    Medicine Studies 3 (3): 129-130. 2012.
    Recent developments in medicine open up new possibilities for planning and shaping life. At the same time, this scope of new options and interventions also involves new forms and spheres of responsibilities. Elderly persons can be viewed as having a responsibility toward their families and partners to plan, via advance health care directives, the final stages of their life; individuals can be seen as responsible for late onset diseases when ignoring public incitements for a healthy life style; a…Read more
  •  39
    The cultural context of patient’s autonomy and doctor’s duty: passive euthanasia and advance directives in Germany and Israel (review)
    with Aviad Raz and Carmel Shalev
    Medicine, Health Care and Philosophy 13 (4): 363-369. 2010.
    The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient’s autonomy and doctor’s duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal ou…Read more
  •  39
    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
  •  38
    Understanding collective agency in bioethics
    with Katharina Beier, Isabella Jordan, and Claudia Wiesemann
    Medicine, Health Care and Philosophy 19 (3): 411-422. 2016.
    Bioethicists tend to focus on the individual as the relevant moral subject. Yet, in highly complex and socially differentiated healthcare systems a number of social groups, each committed to a common cause, are involved in medical decisions and sometimes even try to influence bioethical discourses according to their own agenda. We argue that the significance of these collective actors is unjustifiably neglected in bioethics. The growing influence of collective actors in the fields of biopolitics…Read more
  •  38
    “Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding of ethics,” …Read more
  •  37
    ‘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
  •  35
    Background Despite the great benefits of intelligent assistive technology (IAT) for dementia care – for example, the enhanced safety and increased independence of people with dementia and their caregivers – its practical adoption is still limited. The social and ethical issues pertaining to IAT in dementia care, shaped by factors such as culture, may explain these limitations. However, most studies have focused on understanding these issues within one cultural setting only. Therefore, the aim of…Read more
  •  35
    In this paper, we explore and discuss the use of the concept of being affected in biomedical decision making processes in Germany. The corresponding German term ‘Betroffenheit’ characterizes on the one hand a relation between a state of affairs and a person and on the other an emotional reaction that involves feelings like concern and empathy with the suffering of others. An example for the increasing relevance of being affected is the postulation of the participation of people with disabilities…Read more
  •  34
    ZusammenfassungIm Spielfilm Never Let Me Go werden Klone als vulnerable und heteronome Individuen dargestellt, die zur anonymen Organspende gezwungen werden. In diesem Beitrag wird die Darstellung dieser Figuren in ihrer individuellen Entwicklung und gesellschaftlichen Sozialisation unter der Frage untersucht, welche Bezüge sich zu bioethischen Aspekten ergeben. Die Klone befinden sich in einer Situation der „privilegierten Deprivation“: Aus Sicht der Zuschauer sind sie sozial benachteiligt und …Read more