1st Edition
Debating Human Genetics Contemporary Issues in Public Policy and Ethics
Debating Human Genetics is based on ethnographic research focusing primarily on the UK publics who are debating and engaging with human genetics, and related bio and techno-science. Drawing on recent interviews and data, collated in a range of public settings, it provides a unique overview of multiple publics as they ‘frame’ the stake of the debates in this emerging, complex and controversial arena.
The book outlines key sites and applications of human genetics that have sparked public interest, such as biobanks, stem cells, genetic screening and genomics. It also addresses the ‘scientific contoversies’ that have made considerable impact in the public sphere – the UK police DNA database, gene patenting, ‘saviour siblings’, and human cloning. By grounding the concepts and issues of human genetics in the real life narratives and actions of patient groups, genetic watchdogs, scientists, policy makers, and many other public groups, the book exemplifies how human genetics is a site where public knowledge and value claims converge and collide, and identifies the emergence of ‘hybrid publics’ who are engaging with this hybrid science.
Introduction 1. Methodology and Publics Overview 2. Stem Cells and Cloning 3. Biobanks and Databases 4. 'PharmacoG' as Product and Process 5. Genetic Screening and Testing 6. Genetic Exceptionalism, Health, Identity and Citizenship 7. Informed Consent, Individual Choice 8. Futures Talk Conclusion Scientific Glossary
Biography
Dr Alexandra Plows is a Research Fellow with The Wales Institute of Social and Economic Research, Data and Methods (WISERD), Bangor University. Her research has focused on different types of public engagement in controversial arenas including the environment, globalisation, and technoscience; an overview is provided in a recent paper in Sociology Compass.
'This book on human genetics and its multiple publics is a timely reminder that there are many different publics who engage with policy issues in different ways. It is an important contribution to our understanding of the complexities of "engaging publics" and public engagement. Its coverage of a broad terrain, from human embryonic stem cell research to biobanks and national DNA forensic databases affords a rich assortment of narratives on how competing visions of the good life are framed differently in the different arenas of genetics. It is a useful contribution to our broader understanding of biosocietal life.'
-Edna Einsiedel, Professor of Communication Studies at the University of Calgary, Canada'An interesting book that examines the public (and political) debates (and debaters) of the rapidly evolving science of genomics and genetics. Based around Plows' interview discussions with scientists, spokespeople and activists, it reveals the underlying analogical and metaphorical frames that configure the public discussion of issues by various institutionalised bodies and contribute directly to the wider understanding of genetic science and its medical potential.'
-Nathan Emmerich, Queen's University Belfast, in Times Higher Education online, 7 Oct 2010'Public consultation remains central to public policy. Reconsidering how publics engage in human genetics provides valuable food for thought....This book makes some interesting observations and, while academic, it is accessible to a wider audience thanks to the generous inclusion of qualitative data.'
-Rosie Beauchamp, John Murray Consulting Partners, in BioNews iss 579, 11 Oct '10'...[Alexandra Plows] takes the reader carefully through the social contexts of stem cells and cloning, biobanks and databases, pharmacogenetics, genetic testing and screening, and then, pointedly, the social issues arising from the geneticisation of society, namely individual responsibility, informed consent and individual choice.'
'This will be a useful book for those teachers wanting to strengthen their own understanding of the societal dimension of their genetics teaching. It will also help them to understand why many without their own genetics knowledge are so alarmed by the science.'
-Stephen P. Tomkins, Homerton College, University of Cambridge, in Journal of Biological Education, online 8 Dec '11'...provocative and interesting. I particularly appreciated the consideration of imagined future publics and claims....As a provocation to imagine new STS interventions, this is a book worth reading.'
-Michael Evans, Department of Sociology, University of California, San Diego, in Science as Culture, vol 21 no 3
