The growing use of genetic tests in medical practice has a strong influence on some widespread notions of health and unhealth. Two consequences of this phenomenon are: (i) important changes in the meaning of these current notions and, therefore, (ii) the arrival of a new taxonomy or rearrangement for the so-called “health-concepts”. This paper attempts to demonstrate that both facts fuel a theoretical change that might be considered a model of scientific Kuhnean change in a fundamental aspect. On the other (...) hand, this theoretical shift process offers the basis for approaching a present-day controversy, i.e. whether Western society is going through a period of geneticization or not, from a new perspective. (shrink)

Das Ideal einer vorhersagenden Medizin in Kombination mit wirkungsvollen, kausalen Strategien der Prävention auf molekularer Ebene ist noch immer weit davon entfernt, klinische Realität zu werden. Es ist jedoch schon heute festzustellen, dass zwischen Medizin und Gesellschaft verhandelte Konzepte von Gesundheit in immer stärkerem Maße auf zukünftige Gesundheit ausgerichtet sind, mithin einen immer präventiveren Charakter aufweisen. Der vorliegende Beitrag untersucht die Frage, ob neue Konzepte einer prädiktiv-präventiven Medizin – insbesondere Public Health Genetics bzw. Public Health Genomics – das Kriterium der (...) Verbesserung der sozialen Erreichbarkeit von Gesundheit erfüllen. Diese Analyse wird vor dem Hintergrund der Rolle sozialer Grundwerte, insbesondere dem der Gerechtigkeit, für Funktionen der Medizin in unserer Gesellschaft einerseits sowie der Bedeutung des Wandels der medizinischen Schlüsselkonzepte „Gesundheit“ und „Krankheit“ andererseits vorgenommen. (shrink)

“Geneticization” is a term used to describe the ways in which the science of genetics is influencing society at large and medicine in particular; it has important implications for the process of diagnostics. Because genetic diagnostics produces knowledge about genetic disease and predisposition to disease, it is essentially influenced by these innovations in the disease concept. In this paper, I argue that genetic diagnostics presents new ethical challenges not because the diagnostic process or method in genetic diagnostics is ethically different (...) in kind from traditional medical diagnostics, but because it relies on a neo-ontological concept of disease in a context of genetic reductionism. Geneticization has not produced a radically new concept of disease, however, but has introduced innovations into the classical ontological concept of disease. When this new concept of disease is held in tandem with genetic reductionism, we are led to the absurd conclusion that disease is the very essence of the human being. I argue that neither the neo-ontological concept of disease nor genetic reductionism is necessary for a proper understanding of genetic diagnostics. (shrink)

Das Ideal einer vorhersagenden Medizin in Kombination mit wirkungsvollen, kausalen Strategien der Prävention auf molekularer Ebene ist noch immer weit davon entfernt, klinische Realität zu werden. Es ist jedoch schon heute festzustellen, dass zwischen Medizin und Gesellschaft verhandelte Konzepte von Gesundheit in immer stärkerem Maße auf zukünftige Gesundheit ausgerichtet sind, mithin einen immer präventiveren Charakter aufweisen. Der vorliegende Beitrag untersucht die Frage, ob neue Konzepte einer prädiktiv-präventiven Medizin – insbesondere Public Health Genetics bzw. Public Health Genomics – das Kriterium der (...) Verbesserung der sozialen Erreichbarkeit von Gesundheit erfüllen. Diese Analyse wird vor dem Hintergrund der Rolle sozialer Grundwerte, insbesondere dem der Gerechtigkeit, für Funktionen der Medizin in unserer Gesellschaft einerseits sowie der Bedeutung des Wandels der medizinischen Schlüsselkonzepte „Gesundheit“ und „Krankheit“ andererseits vorgenommen. (shrink)

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 and (...) chronic or acute diseases in the discourse, as partly realized in the German National Ethics Council or the Federal Joint Committee. Nevertheless, not only on the political level, the resistance against the participation of affected people is still strong; the academic debate seems to be cross-grained, too. Against this background, we explore the meaning and argumentative role of the concept of being affected as it is used by affected and lay people themselves. Our analysis is based on four focus group discussions in which lay people, patients and relatives of patients discuss their attitudes towards biomedical interventions such as organ transplantation and genetic testing. This setting allows for a comparison of how affected and non-affected people are concerned and deliberate about medical opportunities, but also of how they position themselves as being affected or non-affected with respect to (scientific) knowledge and morality. On this basis, we discuss the normative relevance of being affected for the justification of political participation. (shrink)

In the present paper, we focus on the role that the concept of geneticization has played in the discussion about health care, bioethics and society. The concept is discussed and examples from the evolving discourse about geneticization are critically analyzed. The relationship between geneticization, medicalization and biomedicalization is described, emphasizing how debates about the latter concepts can inspire future research on geneticization. It is shown how recurrent themes from the media coverage of genetics portray typical traits of geneticization and thus (...) contribute to the process. We look at examples of small-scale studies from the literature where geneticization of medical practice has been demonstrated. Methodological disputes about the relevance of empirical evidence for the geneticization thesis and the normative status of the concept are discussed. We consider arguments to the effect that ideas from mainstream bioethics have facilitated geneticization by emphasizing individualistic notions of autonomy and responsibility while ignoring the role of genetics in the wider social context. It is shown how a concept like geneticization, which can be used to draw the attention of philosophers, social scientists and others to challenges that tend to be neglected by mainstream bioethics, also has the potential to move people’s attention away from other pertinent issues. This may happen if researchers become preoccupied with the transformative effects of genetics, and we argue that a wider reading of geneticization should inspire critical analysis of the sociocultural preconditions under which genetics is currently evolving. (shrink)

Genomic data is generated, processed and analysed at an increasingly rapid pace. This data is not limited to the medical context, but plays an important role in other contexts in society, such as commercial DNA testing, the forensic setting, archaeological research, and genetic surveillance. Genomic information also crosses the borders of these domains, e.g. forensic use of medical genetic information, insurance use of medical genomic information, or research use of commercial genomic data. This paper (1) argues that an informed consent (...) approach for genomic information has limitations in many societal contexts, and (2) seeks to broaden the bioethical debate on genomic information by suggesting an approach that is applicable across multiple societal contexts. I argue that the contextual integrity framework, a theory rooted in information technology and big data ethics, is an effective tool to explore ethical challenges that arise from genomic information within a variety of different contexts. Rather than focusing on individual control over information, the contextual integrity approach holds that information should be shared and protected according to the norms that govern certain distinct social contexts. Several advantages of this contextual integrity approach will be discussed. The paper concludes that the contextual integrity framework helps to articulate and address a broad spectrum of ethical, social, and political factors in a variety of different societal contexts, while giving consideration to the interests of individuals, groups, and society at large. (shrink)

ABSTRACT Pharmacogenetics is a rapidly expanding area of research exploring the relationship between inter‐individual genetic variation and drug response, with the goal of developing genetically optimised therapies. Slippery slope arguments claim that a particular action should be rejected (or supported) because it might be the first step onto a slippery slope leading to undesirable (or desirable) consequences. In this article, several slippery slope arguments relevant to the context of pharmacogenetics are evaluated under consideration of underlying reasons for their popularity. The (...) author concludes that although the examined arguments are unconvincing as slippery slope arguments, they do matter in this context. While positive slippery slope arguments serve as a driving force to fuel the development of pharmacogenetics, their negative counterparts play an important role to sensitise policy makers and the public to potential problems. (shrink)