Genetic Transparency? Ethical and Social Implications of Next Generation Human Genomics and Genetic Medicine


Genetic Transparency? tackles the question of who has, or should have access to personal genomic information. Genomic science is revolutionary in how it changes the way we live, individually and together, and how it changes the shape of society. If this is so, then – the authors of this volume claim – the rules that regulate genetic transparency should be debated carefully, openly and critically.

It is important to see that the social and cultural meanings of DNA and genetic sequences are much richer than can be accounted for by purely biomedical knowledge. In this book, an international group of leading genomics experts and scholars from the humanities and social sciences discuss how the new accessibility of genomic information affects interpersonal relationships, our self-understandings, ethics, law, and healthcare systems.

Contributors are: Kirsten Brukamp, Gabrielle Christenhusz, Lorraine Cowley, Malte Dreyer, Jeanette Erdmann, Andrei Famenka, Teresa Finlay, Caroline Fündling, Shannon Gibson, Cathy Herbrand, Angeliki Kerasidou, Lene Koch, Fruzsina Molnár-Gábor, Tim Ohnhäuser, Christoph Rehmann-Sutter, Benedikt Reiz, Vasilja Rolfes, Sara Tocchetti

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Malte Dreyer is associated at the Institute of Philosophy at the University of Marburg. 2012-2013 he was Scientific Officer of the project “Genetic Transparency” at the Institute for History of Medicine and Science Studies at the Universität of Lübeck. Current research interests include especially philosophy of science.

Jeanette Erdmann, Dr. rer. nat. (1996), University of Cologne,, Germany, is director of the Institute for Integrative and Experimental Genomics at the University of Lübeck (since 2013). Her research interest is the complex genetics of cardiovascular diseases.

Christoph Rehmann-Sutter, Dr. phil. (1995), Technical University of Darmstadt, is Professor of Theory and Ethics in the Biosciences at the University of Lübeck, Germany. He has published monographs and many articles in philosophy, mainly ethics of of genetics, medicine and the life sciences, including Zwischen den Molekülen. Beiträge zur Philosophie der Genetik (Francke, 2005).

"Well worth reading!" – in: Making Science Public (University of Nottingham Blogs)
Introduction: Christoph Rehmann-Sutter, Malte Dreyer and Jeanette Erdmann

1. Christoph Rehmann-Sutter and Malte Dreyer: The Idea of ‘Genes’ and Their ‘Transparency’

2. Benedikt Reiz, Jeanette Erdmann and Christoph Rehmann-Sutter: Making Genomes Visible

3. Angeliki Kerasiou, Cathy Herbrand and Malte Dreyer: Who is the Subject of Genetic Responsibility?

4. Teresa Finlay, Shannon Gibson, Lene Koch and Sara Toccheti: Personal Genomics: Transparent to Whom?

5. Kirsten Brukamp, Gabrielle M. Christenhusz and Caroline Fündling: Genetic Transparency versus Genetic Privacy – The Complex Ethics of Genetic Testing in Humans

6. Andrei Famenka, Shannon Gibson and Fruzsina Molnár-Gábor: Understanding the Complexity of Regulation in an Evolving Health Technology Landscape

7. Gabrielle M. Christenhusz, Lorraine Cowley, Tim Ohnhäuser and Vasilija Rolfes: Genetic Transparency – Transparency of Communication

About the Authors

All interested in the social, ethical and legal implications of genetic medicine in western societies.
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