W artykule w trojaki sposób dowodzę odrębności profesjonalnej etyki lekarskiej, mianowicie: 1. ukazując różnice pozycji normatywnej obowiązków w etyce profesjonalnej i ogólnej, 2. uzasadniając przynależność lekarskiej etyki profesjonalnej do modelu zapożyczenia jako typu etyki aplikacyjnej, 3. podając racje za profesjonalizmem historycznym jako etyką właściwą dla stanu lekarskiego. Odrębność profesjonalnej etyki lekarskiej stanowi ważny argument za jej umieszczeniem w planie edukacji etycznej studentów medycyny i lekarzy. W końcowej części pracy rekonstruuję rzeczywiste i postulowane relacje między etyką profesjonalną a profesjonalizmem, bioetyką akademicką (...) i bioetyką publiczną. Celem rekonstrukcji jest wskazanie optymalnego dla edukacji etycznej miejsca etyki profesjonalnej w systemie kształcenia etycznego profesjonalistów. (shrink)

‘DU bist Radio’ (DBR) is an award winning [DBR has been awarded with the “Catholic Media Award of the German Bishops Conference, Prädikat WERTvoll” (2011), the Suisse “Media Prize Aargau/Solothurn” (2010), the German “Alternative Media Award” (2009) and was nominated for the “Prix Europa” (2009)] monthly radio format that goes on air on three Swiss radio stations. The purpose of this program which was first broadcast in 2009 is the development of a new media format which—without applying any journalistic (or (...) other) filter and influence—conveys authenticity of expression amongst society’s most vulnerable fellow citizens such as patients, clients and the socially deprived. So-called marginal groups are encouraged to speak for themselves, as a possible paradigm case for encouraging the inclusion of patients’ and relatives’ “unfiltered” voices in general and in clinical ethics as well. Before handing over the microphone to the groups in focus, a team of journalists, educated in medical ethics, over a period of 4 days, teaches them on-site radio skills and craft. Once this task is completed and the actual production of the broadcast begins, the media crew does not exert any influence whatsoever on the content of the 1-h program. Thus, the final product is solely created and accounted for by the media-inexperienced participants, leading to unforeseen and often surprising results. It is discussed that the DBR approach of fostering authenticity of expression can serve as an enhancement to today’s respect and autonomy oriented field of medical ethics. (shrink)

The ongoing bioethical debate about organ markets rests not only on theoretical premises, but also on assumptions regarding public views of and attitudes toward organ donation that need closer socioempirical examination. Summarizing results from our previous qualitative social research in this field, this paper illustrates the ethical significance of such public moralities in two respects: On one hand, it analyzes the implicit bias of the common rhetoric of “organ scarcity” which motivates much of the commercialization debate. On the other hand, (...) it explores the blind spots of the paradigm of “altruistic donation” which informs many arguments against commercialization. We conclude that the ethical discourse has to appreciate the social nature of organ donation as a reciprocal interaction between different parties with irreducibly different but equally relevant viewpoints. We criticize the neglect of such well-founded public considerations in certain philosophical-ethical approaches and stress the need for further systematic and comparative socioempirical studies about peoples’ actual perspectives in bioethics. (shrink)

Der Perspektive der Betroffenen kommt im medizinethischen Fachdiskurs der Gegenwart eine grundlegende Bedeutung zu. Im Fall der Demenz wird der Zugang zu ihr allerdings durch krankheitsbedingte Abbauprozesse zunehmend erschwert. Neben anderen künstlerisch-ästhetischen Annäherungen ist in den letzten 15 Jahren auch eine Fülle an Spielfilmen zu verzeichnen, die sich mit der Erfahrung der Demenz beschäftigen. Der Beitrag geht der Frage nach, inwieweit solche filmischen Gestaltungen neue Zugänge zum Demenzerleben eröffnen und was Film als Medium und Kunstform somit für die ethische Auseinandersetzung (...) mit Demenz zu leisten vermag. Dabei werden drei prominente filmästhetische Zugangswege eingehender untersucht, an ausgewählten Beispielen erläutert und unter ethischen Gesichtspunkten erörtert. Es zeigt sich, dass die ethischen Potenziale eines reflektierten Umgangs mit filmischen Annäherungen an die Demenz längst nicht ausgeschöpft sind. (shrink)

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 confronts the bioethical expert discourse with public moral attitudes. The paper is based on (...) a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel. Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion. Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system. As the group discussions indicate, there are no clear-cut positions anchored in “nationality,” “culture,” or “religion.” Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed. (shrink)

ZusammenfassungEine wichtige Aufgabe empirischer Sozialforschung in der Medizinethik besteht darin, bisher unbekannte ethische Probleme zu identifizieren und zu beschreiben. Die Frage, welche Sachverhalte in den Gegenstandsbereich der Medizinethik fallen, ist jedoch sowohl aus wissenschaftlicher Sicht voraussetzungsreich als auch in der Praxis umstritten. Im Beitrag werden theoretische, methodologische und forschungspraktische Aspekte der Identifikation und Auswahl ethischer Probleme diskutiert und das Vorgehen am Beispiel einer konkreten empirisch-ethischen Studie illustriert. Der Schwerpunkt des Artikels liegt hierbei auf den Vorbedingungen sowie dem konkreten Vorgehen bei (...) der Integration von Laien- und Expertenperspektive. Im ersten Teil wird zunächst vorbereitend die Frage nach der Abgrenzung zwischen ethischen Problemen und anderen praktischen Herausforderungen adressiert. Dies geschieht unter Rückgriff auf die philosophisch-ethische Systematik sowie unter Berücksichtigung des stark praxisorientierten Charakters von Medizinethik. Anschließend wird ein Vorschlag zur Unterscheidung zweier Typen ethischer Probleme gemacht und die Frage nach der Definitionsmacht zur Auszeichnung ethischer Probleme auf den spezifischen Kontext empirisch-ethischer Forschung übertragen. Aufbauend auf diesen theoretischen Überlegungen wird im dritten Abschnitt des Beitrags schließlich ein Vorgehen zur Identifikation ethischer Probleme am Beispiel des ETHICO-Projektes als einer empirisch-ethischen Interventionsstudie im Bereich der Onkologie vorgestellt. Zusammenfassend vertritt der Beitrag die These, dass die Identifikation ethischer Probleme in der Medizin ein theoretisch komplexes und methodisch anspruchsvolles Unterfangen ist, bei dem nicht allein die Perspektive philosophischer Theorie eingenommen werden sollte, sondern vielmehr Formen der Integration von Laien- und Expertenperspektive entwickelt werden müssen. (shrink)

Central to this essay is the understanding that varied communities may have an inherent and unrecognised culture of their own and this culture may be detrimental to their core. Bioethics constitutes one such community and is embedded in norms and values comprising its own culture. I use exclusion of religion or simply ‘irreligion’ as an example of a cultural element that may be established and so shape the culture of bioethics. Irreligious bioethics includes both overt religious preclusion and the more (...) pervasive form of religious marginalisation. This norm is narrated into the culture of bioethics with justifications sustaining it. Irreligious bioethics is inadmissible as it claims illegitimate neutrality, is a misuse of expertise and results in a variety of harms. As bioethics is influential in society, those engaged should be critically reflective and aware of harmful cultural elements whilst also possessing the honesty, courage and capacity to change them. (shrink)

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 one German PO and one Israeli PO that (...) were matched on the basis of organizational category. Bioethical positions that emanated from the interviews concerned advance directives—general views, recent legal framework, and formalization; as well as active and passive euthanasia, withholding and withdrawing of treatment, and physician-assisted suicide. In addition to the unifying, within-country impact of cultural factors, we found that constituency-based organizations and partner organizations in both countries often share common views, whereas disease-based support organizations have very heterogeneous positions. We conclude by discussing how organizational contexts provide a source of uniformity as well as diversity in the positions of POs. (shrink)

This paper raises questions about bioethical knowledge and the bioethical ‘expert’ in the context of contestation over methods. Illustrating that from the perspective of the development of bioethics, the lack of unity over methods is highly desirable for the field in bringing together a wealth of perspectives to bear on bioethical problems, that same lack of unity also raises questions as to the expert capacity of the ‘bioethicist’ to speak to contemporary bioethics and represent the field. Focusing in particular on (...) public bioethics, the author argues that we need to rethink the concept of bioethicist, if not reject it. The concept of the bioethicist connotes a disciplinary or theoretical unity that is simply not present and from the perspective of public policy, it is incredibly misleading. Instead, bioethical expertise would be a capacity of a broader community, and not an individual. Such a conception of bioethics as an expert community rather than as an individual capacity, focuses our attention on the more functional question of what knowledge and skill set any individual possesses. (shrink)

Dignity is a fundamental concept, but its meaning is not clear. This paper attempts to clarify the term by analysing and reconnecting two meanings of dignity: humanitas and dignitas. Humanitas refers to citizen values that protect individuals as equal to one another. Dignitas refers to aesthetic values embedded in genres of sociality that relate to differences between people. The paper explores these values by way of an empirical ethical analysis of practices of washing psychiatric patients in nursing care. Nurses legitimate (...) the washing of reluctant patients with reference to dignity. The analysis shows the intertwinement of humanitas and dignitas that gives dignity its fundamental meaning. (shrink)

This paper describes the approach of empirical ethics, a form of ethics that integrates non-positivist ethnographic empirical research and philosophy. Empirical ethics as it is discussed here builds on the ‘empirical turn’ in epistemology. It radicalizes the relational approach that care ethics introduced to think about care between people by drawing in relations between people and technologies as things people relate to. Empirical ethics studies care practices by analysing their intra-normativity, or the ways of living together the actors within these (...) practices strive for or bring about as good practices. Different from care ethics, what care is and if it is good is not defined beforehand. A care practice may be contested by comparing it to alternative practices with different notions of good care. By contrasting practices as different ways of living together that are normatively oriented, suggestions for the best possible care may be argued for. Whether these suggestions will actually be put to practice is, however, again a relational question; new actors need to re-localize suggestions, to make them work in new practices and fit them in with local intra-normativities with their particular routines, material infrastructures, know-how and strivings. (shrink)

This critical essay evaluates the potential integration of distinct kinds of expertise in policymaking, especially during situations of critical emergencies, such as the COVID-19 pandemic. This article relies on two case studies: herd immunity and restricted access to ventilators for disabled people. These case studies are discussed as examples of experts’ recommendations that have not been widely accepted, though they were made within the boundaries of expert epistemic authority. While the fundamental contribution of biomedical experts in devising public health policies (...) during the COVID-19 pandemic is fully recognized, this paper intends to discuss potential issues and limitations that may arise when adopting a strict expert-based approach. By drawing attention to the interests of minorities, the paper also claims a broader notion of “relevant expertise.” This critical essay thus calls for the necessity of wider inclusiveness and representativeness in the process underlying public health policymaking. (shrink)

BackgroundIn the pandemic time, many low- and middle-income countries are experiencing restricted access to COVID-19 vaccines. Access to imported vaccines or ways to produce them locally became the principal source of hope for these countries. But developing a strategy for success in obtaining and allocating vaccines was not easy task. The governments in those countries have faced the difficult decision whether to accept or reject offers of vaccine diplomacy, weighing the price and availability of COVID-19 vaccines against the concerns over (...) their efficacy and safety. We aimed to analyze public opinion regarding the governmental strategies to obtain COVID-19 vaccines in three Central Asian countries, focusing particularly on possible ethical issues.MethodsWe searched for opinions expressed either in Russian or in the respective national languages. We provided data on the debate within three countries, drawn from social media postings and other sources. The opinion data was not restricted by source and time. This allowed collecting a wide range of possible opinions that could be expressed regarding COVID-19 vaccine supply and human participation in the vaccine trial. We recognized ethical issues and possible questions concerning different ethical frameworks. We also considered scientific data and other information, in the process of reasoning.ResultsAs a result, public views on their respective government policies on COVID-19 vaccine supply ranged from strongly negative to slightly positive. We extracted the most important issues from public debates, for our analysis. The first issue involved trade-offs between quantity, speed, price, freedom, efficacy, and safety in the vaccines. The second set of issues arose in connection with the request to site a randomized trial in one of the countries (Uzbekistan). After considering additional evidence, we weighed individual and public risks against the benefits to make specific judgements concerning every issue.ConclusionsWe believe that our analysis would be a helpful example of solving ethical issues that can arise concerning COVID-19 vaccine supply around the world. The public view can be highly critical, helping to spot such issues. An ignoring this view can lead to major problems, which in turn, can become a serious obstacle for the vaccine coverage and epidemics’ control in the countries and regions. (shrink)

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 conducting interdisciplinary empirical ethics. Furthermore, poor methodology in an EE (...) study results in misleading ethical analyses, evaluations or recommendations. This not only deprives the study of scientific and social value, but also risks ethical misjudgement. (shrink)

Empirical bioethics is commonly understood as integrating empirical research with normative-ethical research in order to address an ethical issue. Methodological analyses in empirical bioethics mainly focus on the integration of socio-empirical sciences and normative ethics. But while there are numerous multidisciplinary research projects combining life sciences and normative ethics, there is few explicit methodological reflection on how to integrate both fields, or about the goals and rationales of such interdisciplinary cooperation. In this paper we will review some drivers for the (...) tendency of empirical bioethics methodologies to focus on the collaboration of normative ethics with particularly social sciences. Subsequently, we argue that the ends of empirical bioethics, not the empirical methods, are decisive for the question of which empirical disciplines can contribute to empirical bioethics in a meaningful way. Using already existing types of research integration as a springboard, five possible types of research which encompass life sciences and normative analysis will illustrate how such cooperation can be conceptualized from a methodological perspective within empirical bioethics. We will conclude with a reflection on the limitations and challenges of empirical bioethics research that integrates life sciences. (shrink)

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 or withdrawing of treatment, physician-assisted suicide, and euthanasia. In both (...) countries, respect for patient autonomy and patients’ wishes to die with dignity found broad consent. Laypeople argued in favor of accepting such wishes when they were put down in an advance directive. Laypeople in non-religious groups in both countries argued on the basis of a respect for autonomy for the possibility of euthanasia in severe cases but, at the same time, cautioned against its possible misuse. National contrast was apparent in the moral reasoning of lay respondents concerning the distinction between withholding and withdrawing treatment. The modern religious laypeople in Israel, especially, argued strongly, on the basis of the halakhic tradition, against allowing the withdrawal of treatment in accord with a patient’s wish. We conclude by discussing the emergent notion of shared responsibility and views of professional responsibility, which we connect through relevant cultural themes such as religion and national culture. (shrink)

With regard to organ donation, Germany is an ‘opt-in’ country, which requires explicit consent from donors. The relatives are either asked to decide on behalf of the donors’ preferences, if these are unknown or if the potential donor has explicitly transferred the decision to them. At the core of this policy lies the sociocultural and moral premise of a rational, autonomous individual, whose rights require legal protection in order to guarantee a voluntary decision. In concrete transplantation practices, the family plays (...) an even more important role. Potential donors and their families decide while being embedded in relations, a point which does still not gain full recognition. This particular discrepancy between policy and practice creates conflicts, which remain taboos of academic inquiry and public discourse. Our analysis shows a plurality of the family’s role in the transplantation process, which reveals an inner tension of the organ donation system. This tension provokes epistemic opacity on the one hand and different collective strategies as responses to discursive exclusion on the other. In future deliberations about organ donation, it is important to create spaces for open discussion, but also practices of communicative engagement, which take care of the needs and emotions attached to taboos. (shrink)

ZusammenfassungDer vorliegende Beitrag untersucht, wie angesichts eines Interessenpluralismus ethische Diskurse über innovative und hochriskante Forschungsvorhaben angemessen geführt werden können. Dazu rekonstruieren wir erstens den Begriff des Stakeholders im Kontext seiner Entstehung in der Unternehmensethik und Anwendung in der Medizinethik und legen dessen implizite normative Prämissen frei. Wir entwickeln zweitens eine Klassifizierung von Stakeholdern und illustrieren diese am Beispiel der klinischen Forschung. Besonderes Augenmerk wird dabei auf das Kriterium der Betroffenheit gelegt. Drittens werden für unterschiedliche Formen der Betroffenheit von Stakeholdern angemessene (...) Beteiligungsverfahren vorgestellt, die von Information bis Empowerment reichen können. Wir zeigen, warum es für ethische Diskurse in der Medizin- und Bioethik wichtig ist, Betroffenheit und Beteiligungsverfahren auf transparente und nachvollziehbare Weise in ein reflektiertes Verhältnis zu setzen und wie das praktisch zu bewerkstelligen ist. (shrink)

BackgroundPublic involvement activities are promoted as measures for ensuring good governance in challenging fields, such as biomedical research and innovation. Proponents of public involvement activities include individual researchers as well as non-governmental and governmental organizations. However, the concept of ‘public’ in public involvement deserves more attention by researchers because it is not purely theoretical: it has important practical functions in the guidance, evaluation and translation of public involvement activities.DiscussionThis article focuses on collective agency as one property a public as a (...) small group of participants in a public involvement activity could exhibit. It introduces a prominent theoretical approach to collective agents as one specific kind of social entities and demonstrates how this approach can be applied to current practice in public involvement activities. A brief discussion of different types of representation as they are used in the existing literature on this topic is also included because representation and collective agency can be closely related to each other. Suggestions and ideas that are derived from this reasoning include the proposal to use a ‘validity check’ for the generation of collective agents as a regular element of certain types of public involvement activities, the consequences of combining collective agency and representativeness as a further property a public could exhibit, and standards for reporting the content of public involvement activities in scientific publications.SummaryThis article discusses the importance of the concept of ‘public’ in public involvement activities, with a focus on biomedical research and innovation. It introduces various practically relevant ideas that are based on a theoretical analysis of collective agency as an important property a public can possess. (shrink)

Vigorous debate over the moral propriety of cognitive enhancement exists, but the views of the public have been largely absent from the discussion. To address this gap in our knowledge, four experiments were carried out with contrastive vignettes in order to obtain quantitative data on public attitudes towards cognitive enhancement. The data collected suggest that the public is sensitive to and capable of understanding the four cardinal concerns identified by neuroethicists, and tend to cautiously accept cognitive enhancement even as they (...) recognize its potential perils. The public is biopolitically moderate, endorses both meritocratic principles and the intrinsic value of hard work, and appears to be sensitive to the salient moral issues raised in the debate. Taken together, these data suggest that public attitudes toward enhancement are sufficiently sophisticated to merit inclusion in policy deliberations, especially if we seek to align public sentiment and policy. (shrink)

This essay comments on the British Medical Association's recent suggestion that protocols for Elective Ventilation (EV) might be revived in order to increase the number of viable organs available for transplant. I suggest that the proposed revival results, at least in part, from developments in the contemporary political landscape, notably the decreasing likelihood of an opt-out system for the UK's Organ Donor Register. I go on to suggest that EV is unavoidably situated within complex debates surrounding the epistemology and ontology (...) of death. Such questions cannot be settled a priori by medical science, bioethics or philosophical reflection. As Radcliffe-Richards suggests, the determination of death has become a moral question, and therefore, now extends into the political arena. I argue for the conclusion that EV, and wider debates about organ donation and the constitution of the organ donation register, are matters of ‘biocitizenship’ and must, therefore, be addressed as ‘biopolitical’ questions. (shrink)

The role of nursing faculty members in charge of ethics education is important. Although all nursing students receive the same bioethics education, their experiences differ, related to ethical qualification, which depends on the personal socialization process. This Korean study aimed to provide nursing faculty members with the basic data to help them develop as bioethics experts and provide nursing students with knowledge to improve their ethical decision-making abilities. We used a survey design to assess recognition of bioethical issues and ethical (...) qualification in nursing students and faculty members. A total of 1225 undergraduate students and 140 faculty members participated in this study. The results revealed that nursing students and nursing faculty members generally understood the seriousness of various bioethical issues and both considered the most serious issue to concern abortion. Ethical behavior can be improved by education, and accordingly, nursing ethics should be a mandatory subject, rather than an elective one. (shrink)

The ambiguity regarding whether a given intervention is perceived as enhancement or as therapy might contribute to the angst that the public expresses with respect to endorsement of enhancement. We set out to develop empirical data that explored this. We used Amazon Mechanical Turk to recruit participants from Canada and the United States. Each individual was randomly assigned to read one vignette describing the use of a pill to enhance one of 12 cognitive, affective or social domains. The vignettes described (...) a situation in which an individual was using a pill to enhance the relevant domain under one of two possible enhancement conditions, one perceived as enhancing above the norm, what most people recognize as a clear case of enhancement, whereas the other perceived as enhancing towards the norm, with the individual using the enhancement having a modest, but subclinical deficit. Participants were asked how comfortable they were with the individual using the enhancement and about the impact the enhancement might have had in the individuals’ success in life. We found that irrespective of the domain to be enhanced, participants felt significantly more comfortable with ETN than with EAN, and they regarded the enhancement intervention as contributing to greater success in life with ETN rather than EAN. These data demonstrate that the therapy enhancement distinction is morally salient to the public, and that this distinction contributes to the angst that people feel when considering the propriety of CAS enhancement. (shrink)

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 and bioethics leads us to pursue (...) the question as to how collective moral claims can be characterized and justified. We pay particular attention to elaborating the circumstances under which collective actors can claim ‘collective agency.’ Specifically, we develop four normative-practical criteria for collective agency in order to determine the conditions that must be given to reasonably speak of ‘collective autonomy’. For this purpose, we analyze patient organizations and families, which represent two quite different kinds of groups and can both be conceived as collective actors of high relevance for bioethical practice. Finally, we discuss some practical implications and explain why the existence of a shared practice of trust is of immediate normative relevance in this respect. (shrink)

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer’s disease at a presymptomatic stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups (...) of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel. Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results. All data relevant to the study are included in the article or uploaded as supplementary information. (shrink)