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This book is a comprehensive, empirically-grounded exploration of the relationship between bioethics, culture, and the perspective of being affected. It provides a new outlook on how complex "bioethical" issues become questions of everyday life. The authors focus on two contexts, genetic testing and end-of-life care, to locate and demonstrate emerging themes of responsibility, such as self-responsibility, responsibility for kin, and the responsibility of society. Within these themes, the duty to know versus the right not to know one's genetic fate (in the context of genetic testing), or the sanctity of life versus self-determination (in the context of end of life care) are identified as culturally embedded dilemmas that are very much relevant for lay persons. Furthermore, cultural factors such as religion, history, utopian and dystopian views of biomedical technologies, outlooks on the body and on health/illness, and citizenship are examined. Health issues are increasingly becoming a question of assessing risk and responsibility: How can we better prepare ourselves for the future? We all make such assessments in a way that combines personal inclinations, professional recommendations, and cultural framings. There is still much to be learned about the interplay between these three dimensions.
Sommario
1 Introduction: Engaging in Comparative Bioethics.- 2 Setting the Methodological Scene: The Value of Explication and Pluralization of Moral Grammars.- 3 Applying the Theoretical Tools: Being Affected, Responsibility, and Risk.- 4 Contextualizing the Cultural and Medico-Legal Debate on Adult Genetic Testing.- 5 Making Responsible Life Plans: Cultural Differences in Lay Attitudes in Germany and Israel towards Predictive Genetic Testing for Late-Onset Diseases.- 6 Planning One's End of Life in an Expert Biomedical Culture.- 7 Lay Attitudes towards End-of-Life Decision-Making in Germany and Israel.- 8 Risks and Responsibilities: Making Plans for Life and Death.- 9 Final Conclusion: Disentangling the Micro and the Macro in Bioethics.
Riassunto
This book is a comprehensive, empirically-grounded exploration of the relationship between bioethics, culture, and the perspective of being affected. It provides a new outlook on how complex “bioethical” issues become questions of everyday life. The authors focus on two contexts, genetic testing and end-of-life care, to locate and demonstrate emerging themes of responsibility, such as self-responsibility, responsibility for kin, and the responsibility of society. Within these themes, the duty to know versus the right not to know one's genetic fate (in the context of genetic testing), or the sanctity of life versus self-determination (in the context of end of life care) are identified as culturally embedded dilemmas that are very much relevant for lay persons. Furthermore, cultural factors such as religion, history, utopian and dystopian views of biomedical technologies, outlooks on the body and on health/illness, and citizenship are examined. Health issues are increasingly becoming a question of assessing risk and responsibility: How can we better prepare ourselves for the future? We all make such assessments in a way that combines personal inclinations, professional recommendations, and cultural framings. There is still much to be learned about the interplay between these three dimensions.
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