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 science research, informatics and humanities (...) of digitalisation. The aim of the study was to explore expert opinions regarding current challenges and opportunities related to data-driven medicine and medical research and to provide a methodological framework for empirically grounded, continuous normative reflection. To this end, we developed a heuristic tool to map and structure empirical findings for normative analysis. Using this tool, our interview material points to a polarisation between individualistic and collectivistic orientated argumentations among experts. The study shows that a multilevel analysis is required to deal with complex normative implications of data-driven approaches in medical research and healthcare. (shrink)

A growing number of technologies are currently being developed to improve and distribute thinking and decision-making. Rapid progress in brain-to-brain interfacing and swarming technologies promises to transform how we think about collective and collaborative cognitive tasks across domains, ranging from research to entertainment, and from therapeutics to military applications. As these tools continue to improve, we are prompted to monitor how they may affect our society on a broader level, but also how they may reshape our fundamental understanding of agency, (...) responsibility, and other key concepts of our moral landscape.In this paper we take a closer look at this class of technologies – Technologies for Collective Minds – to see not only how their implementation may react with commonly held moral values, but also how they challenge our underlying concepts of what constitutes collective or individual agency. We argue that prominent contemporary frameworks for understanding collective agency and responsibility are insufficient in terms of accurately describing the relationships enabled by Technologies for Collective Minds, and that they therefore risk obstructing ethical analysis of the implementation of these technologies in society. We propose a more multidimensional approach to better understand this set of technologies, and to facilitate future research on the ethics of Technologies for Collective Minds. (shrink)

This commentary offers a coherent reading of the papers presented in the special issue ‘Exclusion, Engagement, and Empathy: Reflections on Public Participation in Medicine and Technology’. Focusing on intellectual self-trust it adds a further perspective on the harmful epistemic consequences of social exclusion for individual agents in healthcare contexts. In addition to some clarifications regarding the concepts of ‘intellectual self-trust’ and ‘social exclusion’ the commentary also examines in what ways empathy, engagement and participatory sense-making could help to avoid threats to (...) intellectual self-trust that arise form being excluded from participation in communicative practices in the context of healthcare. (shrink)

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 representation, has only rarely been addressed in bioethics. This symposium, entitled: “Collective Representation in Healthcare Policy” of the Journal of Bioethical Inquiry draws attention (...) to this understudied topic from a variety of disciplines, within a variety of socio-cultural contexts. We draw attention to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy. (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)

Volume 20, Issue 4, May 2020, Page 35-37.

ZusammenfassungIn der ethischen Debatte um die Forschung mit Biobanken wird selten zwischen verschiedenen Biomaterialien differenziert. Vor diesem Hintergrund widmet sich die vorliegende qualitative Interviewstudie erstmals den praktischen Herausforderungen, die sich bei der Sammlung von postmortal gewonnenem menschlichem Gehirngewebe zu Forschungszwecken aus Sicht von in diese Praxis involvierten Experten in Deutschland stellen. Im Zentrum der ethischen Analyse stehen Herausforderungen der Spenderrekrutierung, der Kommunikation über eine Gehirnspende sowie der informierten Zustimmung. Unsere Ergebnisse relativieren zum einen die Annahme eines sogenannten Spendermangels, insofern insbesondere (...) Kliniker eine Gatekeeper-Rolle bei der Spendergewinnung innehaben. Deren Einstellungen sollten daher als ein die Praxis unmittelbar beeinflussender Faktor stärker berücksichtigt werden; zudem sollten im Wissen um bestehende moralische Vorbehalte Ansätze zur Verbesserung der professionellen Kommunikation entwickelt werden. Bezüglich der Regelung der Einwilligung in postmortale Forschungsspenden wurde in unserem Sample das Bemühen deutlich, den ethischen Vorrang der Organspende nicht zu gefährden und die Postmortalspende vor Assoziationen mit der Organspende zu bewahren. Zur Sicherung des Vertrauens in die Forschung sowie der Autonomie von Spendern befürworteten die Experten nicht nur die Anwendung einer Zustimmungsregelung, sondern auch ein den Familienangehörigen explizit eingeräumtes Recht, einer Gehirnspende selbst dann zu widersprechen, wenn der Verstorbene seine Zustimmung erteilt hat. Die Erfahrung zeigt, dass eine offene Kommunikation über das Erfordernis eines familiären Konsenses zu einer hohen Akzeptanz des Spenderwillens in der Praxis führt. Daher könnte ein solcher, auf den Dialog von Spender und Angehörigen zu Lebzeiten bauender Ansatz auch instruktiv für die Realisierung von Spenden im Kontext der Organspende sein. (shrink)

This paper draws on nearly two decades of research on health consumer and patients’ organizations in the United Kingdom. In particular, it addresses questions of representation and legitimacy in the health policy process. HCPOs claim to represent the collective interests of patients and others such as relatives and carers. At times they also make claims to represent the wider public interest. Employing Pitkin’s classic typology of formalistic, descriptive, symbolic, and substantive representation, the paper explores how and in what sense HCPOs (...) represent their constituencies. We found that policymakers themselves are less concerned with formal mechanisms adopted by groups and are more concerned with credibility, in particular whether HCPOs carry the confidence of their constituents. While some concerns about legitimacy remain, particularly in relation to funding from commercial interests, we argue that HCPOs bring a unique perspective to the policy process and to focus purely on formalistic representation provides only a partial understanding of their representative role and a constrained view of their collective moral claims. (shrink)

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)

Several European countries are approving legislative reforms moving to a presumed consent system in order to increase organ donation rates. Nevertheless, irrespective of the consent system in force, family's decisional capacity probably causes a greater impact on such rates. In this contribution we have developed a systematic methodology in order to analyse and compare European organ procurement laws, and we clarify the weight given by each European law to relatives' decisional capacity over individual's preferences (expressed or not while alive) regarding (...) the destination of his or her organs after death. In this sense, the results constitute the first comprehensive and comparative legislative mapping on European transplantation laws. (shrink)

Slightly modified excerpt from the section 13.4 Zusammenfassung und Ausblick (translated into englisch): This chapter is based on an analysis of ethical debates on epigenetics and genome editing, debates, in which ethical arguments relating to future generations and justice play a central role. The analysis aims to contextualize new developments in genetic engineering, such as genome and epigenome editing, ethically. At the beginning, the assumptions of "genetic determinism," on which "genetic essentialism" is based, of "epigenetic determinism" as well as "genetic" (...) and "epigenetic exceptionalism" are analyzed and critically discussed. The remarks on the ethical discourse on epigenetics show that the notion of "epigenetic determinism" can sometimes be discerned not only in popular scientific discourse but also in ethical discourse. Ethical debates on epigenetics, however, have distanced themselves from this deterministic understanding. As a result, the focus in the ethical discourse on epigenetics shifts from responsibility for one's own health and that of subsequent generations to justice. What is meant here is justice, for example, in terms of access to healthy environmental conditions, regardless of whether these contribute to health with or without epigenetic agency. An analysis of the discourse on genome editing reveals that it is primarily germline interventions that are being ethically examined, with a concentration on the aspect of inheritance. The question is whether this is accompanied by an implicit "genetic determinism" or even a "genetic essentialism": the determinism could lie in the centrality of the aspect of heritability, since only genetic information is inherited. Does the aspect of heritability and genome modification play a more decisive role in debates on genome editing than the safety issue? Is the problem of embryos and their potential offspring not being able to consent to germline intervention given such a high priority because it is a genetic intervention? Under such a premise of "strong genetic determinism" supplemented by "epigenetic determinism," not only genome editing but also epigenome editing would be ethically relevant precisely because it too would have an influence on the genome. How this influence of genome editing and epigenome editing is ethically evaluated in each case therefore depends initially on whether the assumptions of "genetic" and "epigenetic determinism" are advocated. These assumptions are increasingly viewed critically in ethical discourse because they cannot be confirmed from a scientific perspective. In popular scientific debates in particular, however, they seem to persist, which ultimately also influences the public discussion. Since a broad public discussion is required especially on genome editing, a reflective approach to the various "-isms" analyzed in this chapter is central. DOI: 10.5771/9783748927242. (shrink)