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Assessing Life

The Organisation of Genetic Testing

Bernhard Wieser, Wilhelm Berger (Herausgeber)

Buch | Softcover

240 Seiten

2010 | 1., Aufl.
Profil Mchn. (Verlag)
978-3-89019-643-5 (ISBN)

Lese- und Medienproben

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How does genetic medicine change our lives? How does it change the ways in which health and disease are understood and experienced? These questions explicate what this book is concerned with. Medicine, as we know it today, is highly organised. What happens in a medical consultation, what is done to us, but also what we are expected to do with ourselves is structured by action regimes. Consequently, these regimes are also crucially important for the ways in which individuals come across the possibility of a genetic test. They structure if and how patients can make their choices, but also what kind of tests are offered to whom, the information provided and the support that is made available. It is therefore a central claim of our approach that the ways in which responsibility is constructed, how human beings understand it and how they are stimulated to act responsibly is to a very high degree shaped by organisational conditions of medical practice. Seen from this perspective, responsibility is a result of specifically organised, socio-technical contexts of action. Accordingly, the experience of health and disease is not a quasi-natural process. Nor do experiences emanate from an inner nucleus of the subject, which is there a priori. It is the task of sociological research and philosophical reflection to show how what appears to be individual is shaped and constituted by structural socio-technical conditions.

Assessing Life: On the Organisation of Genetic Testing
How does genetic medicine change our lives?
How does it change the ways in which health and disease are understood and experienced?
These questions explicate what this book is concerned with. Medicine, as we know it today, is highly organised. What happens in a medical consultation, what is done to us, but also what we are expected to do with ourselves is structured by action regimes. Consequently, these regimes are also crucially important for the ways in which individuals come across the possibility of a genetic test. They structure if and how patients can make their choices, but also what kind of tests are offered to whom, the information provided and the support that is made available. It is therefore a central claim of our approach that the ways in which responsibility is constructed, how human beings understand it and how they are stimulated to act responsibly is to a very high degree shaped by organisational conditions of medical practice. Seen from this perspective, responsibility is a result of specifically organised, socio-technical contexts of action. Accordingly, the experience of health and disease is not a quasi-natural process. Nor do experiences emanate from an inner nucleus of the subject, which is there a priori. It is the task of sociological research and philosophical reflection to show how what appears to be individual is shaped and constituted by structural socio-technical conditions.

Mag. Bernhard Wieser, Studium Erziehungswissenschaften/Erwachsenenbildung an der Univ. Graz. Seit 1999 Mitarbeiter des Interuniversitären Forschungszentrums für Technik, Arbeit und Kultur IFZ in Graz, Lehrbeauftragter der Univ. Graz. Arbeitsschwerpunkte: Technik und Bildung; Bildungsaspekte von Gen- u. Biotechnologie. Das Interuniversitäre Forschungszentrum für Technik, Arbeit und Kultur ( I F Z ) wurde 1988 als interdisziplinäres Forschungsinstitut gegründet und beschäftigt sich mit Fragen der sozial- und umweltverträglichen Technikgestaltung. Das IFZ ist der Grazer Standort der Abt. Technik- u. Wissenschaftsforschung des I F F (Interuniversitäres Institut für interdisziplinäre Forschung u. Fortbildung der Universitäten Klagenfurt, Wien, Innsbruck und Graz).

Wilhelm Berger, ao. Univ.-Prof. Dr., arbeitet am Institut für Technik- und Wissenschaftsforschung und ist Prodekan der Fakultät für Interdisziplinäre Forschung und Fortbildung (IFF) an der Alpen-Adria Universität Klagenfurt, Österreich.

Bernhard Wieser
Introduction

Michael Arribas-Allyon
The Politics of Autonomy in Genetic Testing of Children

Wilhelm Berger
Towards an Ethics of Genetic Testing

Stefanie Mayer, Peter Biegelbauer, Erich Griessler & Sosuke Iwae
The Regulation of Genetic Testing: A Three Country Comparison

Vincezo Pavone
Genetic Testing, Geneticisation and Social Change: Insights from Genetic Experts in Spain

Angus Clarke, Bridget Hendicott, Peter MacSorley
& Ian M Frayling
'Mainstreaming' and the Impact on Clinical Taxonomy: A Clinical Perspective on the Introduction of New Genetic Tests.

Anne-Marie C. Plass
Extension of the Newborn Screening Programme in the Netherlands: Opinions of Prospective Parents, and Unintended Side Effects.

Elisa Pieri
Predictive Genetic Testing and the Promise of Personalised Medicine

Carla van El, Toine Pieters & Martina Cornel
The Changing Focus of Screening Criteria in the Age of Genomics: A Brief History from the Netherlands

Joëlle Vailly & Cécile Ensellem
Informing Populations, Governing Subjects: The Practices of Screening for a Genetic Disease in France

Daniela Freitag
Interrelated Identities: Being a Parent of a Child with Cystic Fibrosis

Susan Cox
Genetic Testing and Experiences of Identity: Some Neglected Dimensions

About the Authors

Erscheint lt. Verlag	12.7.2010
Reihe/Serie	Technik- und Wissenschaftsforschung /Science and Technology Studies ; 59
Sprache	englisch
Maße	148 x 210 mm
Gewicht	445 g
Einbandart	Paperback
Themenwelt	Medizin / Pharmazie ► Allgemeines / Lexika
Themenwelt	Technik
Schlagworte	Genetic Testing • Genetik • Genetik / Erblehre • Hardcover, Softcover / Medizin/Allgemeines • HC/Medizin/Allgemeines • newborn screening • Personalised Medicine
ISBN-10	3-89019-643-8 / 3890196438
ISBN-13	978-3-89019-643-5 / 9783890196435
Zustand	Neuware