Are you your genes? De-Sequencing: Identity Work with Genes explores this perplexing question, showing how different forms of knowledge must be contextualized to become meaningful. It is generally assumed that the genomic sequence adds up to the identity-forming material life is made of. Yet identity cannot itself adopt the form of a sequence. As the authors in this volume show, the genome must be 'de-sequenced' by human language to render it interpretable and meaningful in a social context. The book unpacks this type of 'sequence-speech' in engaging detail, adopting a personal, social, cultural, and bio-political approach to examine the transformation of human identity and reflexivity in the era of genetic citizenship.

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Mahr, Dana; von Arx, Martina

Dana Mahr, Martina von Arx

Springer Nature Singapore Pte Ltd Fka Springer Science + Business Media Singapore Pte Ltd

Health, Technology and Society, 1st ed. 2020, Singapore, Singapore, 2020

Health, Technology and Society, 1st edition 2020, Singapore, 2020

Health, technology, and society, Basingstoke, 2020

Springer Nature, Basingstoke, 2020

lg2878258

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Series Editors’ Preface
Contents
Notes on Contributors
List of Figures
1 Introduction
References
Part I Science and Medicine
2 Personalised Medicine: Problems of Translation into the Human Domain
2.1 Introduction
2.2 The Current Status of Personalised Medicine
2.3 A Vision of Prevention and Participation
2.4 What Is Translation?
2.4.1 Evidence-Based Medicine in Flux
2.4.2 Problems of Prediction
2.4.3 Clinical Utility: Problems of Waste and Harm
2.4.4 Findings of Unknown Significance
2.4.5 False Positives
2.4.6 Overdiagnosis
2.4.7 Vested Interests
2.4.8 Social Level Damage
2.4.9 Social and Cultural Iatrogenesis
References
3 Contemporary Future Parents: From Tentative Pregnancy and Moral Pioneers to Educated Moral Gamblers
References
Part II Philosophy of Biology
4 Developmental Narratives: How We Think that Organisms Use Genetic and Epigenetic Information
4.1 Climbing the DNA
4.2 Responsive Minds in Responsive Bodies
4.3 The Concept of Epigenetics
4.4 Organic Responsivity
4.5 Corporeal Presence
References
5 Epigenetics, Responsiveness and Embodiment
5.1 Epigenetics?
5.2 Responsiveness as Agency or Causal Process?
5.3 Epigenetics as Reason for Responsiveness at All Levels?
5.4 Embodiment Already in Nature–Nurture Interaction
5.5 Summary
References
6 Space and Time of Developmental Narratives
References
Part III Societal Contexts
7 Data Mining in Systems Medicine and the Project of Solidarity: The Interface of Genomics and Society Revisited
7.1 Introduction: From Genomic Medicine to Precision Medicine
7.2 Citizens as Health Altruists: Is There a Societal Duty to Collect More Data?
7.3 Can Genomic and Other Data Easily Be Integrated and Rendered Meaningful?
7.4 Does Personalised Medicine Necessarily Lead to Narcissistic, Individualistic Medicine?
References
8 Experimenting with Solidarity in Biomedicine: From Practice to Principle?
8.1 Moral Economies Are Unstable Systems
8.2 The Epistemic Work Towards Interoperability and Solidarity
8.3 Conclusions
References
9 The Moral Making of Data-Rich Personalised Medicine
9.1 Personalising Medicine for the ‘Common Good’?
9.2 Individual Responsibility for Our Collective Medical Future
References
Part IV Families
10 An Ordering of Letters: My Own Personal Genome
10.1 100,000 Personal Genomes
10.2 Life Stories
10.3 Testing Times: CAG Repeats
10.4 Another Ordering of Letters
10.5 Life and Death Stories
10.6 Inheriting Mistakes
References
11 Illness in the World of the Genome
References
12 How Personal Is the Genome? The Shadow of Genetic Predictions
12.1 Futures
12.2 How Personal Is the Genome?
References
Part V Individual Experiences
13 Lived Genome Phenomenology: Exploring the Genetics of Chronic Inflammatory Bowel Diseases
13.1 Introduction
13.2 A Phenomenological Approach to Genomic Knowledge
13.3 Genetics as a Relief
13.4 Genetics and Agency
13.5 Sense-Making as a Form of De-sequencing
References
14 Existential Storytelling in a Genomic World
14.1 Existential Storytelling
14.2 Two Types of Change in Storytelling
References
15 Sudden Evolutionary Changes in Palearctic Warblers

1. Introduction -- Part I Science and Medicine -- 2. Personalised Medicine: Problems of translation into the human domain -- 3. Contemporary Future Parents: From tentative pregnancy and moral pioneers to educated moral gamblers -- Part II Philosophy of Biology -- 4. Developmental narratives -- 5. Epigenetics, responsiveness and embodiment -- 6. Space and time of developmental narratives -- Part III Societal Contexts -- 7. Data mining in systems medicine and the project of solidarity - the interface of genomics and society revisited -- 8. Experimenting with solidarity in biomedicine: from practice to prin-ciple? -- 9. The moral making of data rich personalised medicine -- Part IV Families -- 10. An ordering of letters: my own personal genome -- 11. Illness in the world of the genome -- 12. How personal is the genome? The shadow of genetic predictions -- Part V Individual Experiences -- 13. Lived genome phenomenology. Exploring the genetics of chronic inflammatory bowel diseases -- 14. Existential storytelling in a genomic world

Health, Technology and Society
Erscheinungsdatum: 08.12.2020

2020-12-07