Assistive reproductive technologies are increasingly used to control the biology of fertility and its temporality. Combining historical, theoretical, and socio-empirical insights, this paper aims at expanding our understanding of the way temporality emerges and is negotiated in the contemporary practice of cryopreservation of reproductive materials. We first present an historical overview of the practice of cryo-fertility to indicate the co-production of technology and social constructions of temporality. We then apply a theoretical framework for analysing cryobiology and cryopreservation technologies as creating (...) a new epistemic perspective interconnecting biology and temporality. Thereafter, we focus on the case of ‘social egg freezing’ to present socio-empirical findings illustrating different reproductive temporalities and their connection to the social acceptance of and expectations towards the practice. SEF is a particularly interesting case as it aims to enable women to disconnect their reproductive potential from their biological rhythms. Based on 39 open interviews with Israeli and German SEF users, the cross-cultural comparative findings reveal three types of attitudes: postponing motherhood/reproductive decisions ; singlehood and “waiting” for a partner ; and the planning of and hope for multiple children. For theory building, this analysis uncovers temporality formations embedded in gender and reproductive moral values; including the ‘extended present’, ‘waiting’, and ‘reproductive futurism’. We conclude by discussing the contribution of our findings by advancing the theoretical framework of ‘cryopolitics’ highlighting the theoretical implications and importance of gendered and cultural imaginaries constructing medical technological innovations and related temporalities. (shrink)

To explore how cultural beliefs are reflected in different popular views of pre-implantation genetic diagnosis for human leukocyte antigen match (popularly known as “savior siblings”), we compare the reception and interpretations, in Germany and Israel, of the novel/film My Sister’s Keeper. Qualitative analysis of reviews, commentaries and posts is used to classify and compare normative assessments of PGD for HLA and how they reproduce, negotiate or oppose the national policy and its underlying cultural and ethical premises. Four major themes emanated (...) from the comparison: loss of self-determination and autonomy; loss of dignity through instrumentalization; eugenics and euthanasia; and saving life. In both countries, most commentaries represented a dominant position, with a few negotiated positions. We also highlight the decoding of a relatively less explored bioethical aspect of My Sister’s Keeper’s narrative, namely the meaning of euthanasia. We conclude by discussing how the findings relate to attempts of providing cultural explanations for the regulation of HLA-PGD. (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)

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)

ZusammenfassungKulturelle Zugehörigkeit und die Möglichkeit, diese auch in der Situation von Krankheit erleben zu können, wird als wesentliches Element kultursensibler Krankenversorgung gesehen. Hierfür scheint ein grundlegendes Verständnis kultureller Besonderheiten, wie auch die Reflexion auf die eigenen kulturellen Wurzeln besonders wichtig. Gleichzeitig besteht Konsens, dass kulturessentialistische Ansätze, die auf das Verbindende innerhalb einer Kultur in Abgrenzung zu anderen Kulturen rekurrieren, zu problematischen Vereinfachungen und stereotypen Zuschreibungen führen können. Vor diesem Hintergrund erscheinen Aussagen über Gruppen von Patienten mit ähnlichem kulturellen Hintergrund als (...) problematisch. Interkulturelle Bioethik bewegt sich in diesem Spannungsfeld, das sich auch auf theoretischer Ebene widerspiegelt: Aspekte wie Fremdheitserfahrungen und Missverständnisse werden im Kontext kultureller Verschiedenheit gedeutet. Der Beitrag geht der Frage nach, wie im Kontext von Medizin und Kultur Differenzen gesetzt und verstetigt werden und welche Rolle bioethisches Nachdenken dabei haben kann und soll. Aus der Perspektive der Ethik werden dabei zwei Aspekte besonders beleuchtet, zum einen, wie die bestehenden Differenzsetzungen strukturell verankert sind und mit Fragen von Macht und Interesse zusammenhängen. Hier wird untersucht, welche Fragen nach kultureller Identität insbesondere aus der Perspektive von Patienten hilfreich sind. Zum anderen wird in Bezug auf konkrete Handlungsfelder der Krankenversorgung untersucht, welche Ansätze einer kultursensiblen Ethik vor diesem Hintergrund gestärkt werden können, so dass im Alltag der Krankenversorgung ein Umgang mit Fragen von Kultur gefördert wird, der Raum für widersprüchliche Aspekte von kultureller Identität eröffnet. (shrink)

When considering the principle of medical confidentiality, disclosure of genetic information constitutes a special case because of the impact that this information can have on the health and the lives of relatives. The aim of this study is to explore the attitudes of Turkish physicians and patients about sharing information obtained from genetic tests.

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 the concept of GR in qualitative, socioempirical studies, to (...) identify the main interpretations and to provide conceptual clarification. The review identified 75 studies with primarily an Anglo-American setting. The studies focused on several agents: the individual, the family, the parent, the healthcare professional, and the institution and refer to the concept of GR on the basis of either a rational/principle-oriented approach or an affective/relational approach. A subtype of the rational/principle-oriented approach is the reactive approach. The review shows how the concept of GR is useful for analyzing and theorizing about socioempirical findings within qualitative socioempirical studies and also reveals conceptual deficits in terms of insufficient theoretical accuracy and heterogeneity, and in the rarity of reflection on cultural variance. The vagueness and multiplicity of meanings for GR in socioempirical studies can be avoided by more normative-theoretical explication of the underlying premises. This would provide a higher degree of differentiation of empirical findings. Thereby, the complex findings associated with the individual and social implications of genetic testing in empirical studies can be better addressed from a theoretical point of view and can subsequently have a stronger impact on normative and policy debates. (shrink)

Medical screening programs have been established based on the idea of early treatment and prevention. The selection of tests as well as the diseases tested for that are included in a screening need to be ethically justified. This article looks at criteria for screening such as severity of a disease and efficiency of a test and their applicability for newly developed preconceptional genetic carrier screening. Preconceptional genetic carrier screening can be used by couples planning a pregnancy in order to learn (...) it they are both carriers of a recessive inherited diseases und thus have an increased risk of having an affected child. It is argued that introducing fuzzy logic helps to overcome a binary logic of ethical decisions and to discuss ethical problems connected to the selection of diseases for preconceptional genetic carrier screening in a more nuanced way. With ongoing research about the relationship between genotype and phenotype as well as current development of new genetic screening methods the selection of tests and diseases will have to deal with knowledge deficits which fuzzy logic can help to handle. (shrink)