Narrating the New Predictive Genetics: Ethics, Ethnography and Science

Description

This book explores the way changes in technology have altered the relationship between ethics and medicine. For some inherited diseases, new genetic testing technologies may provide much more accurate diagnostic and predictive information which raises important questions about consent, confidentiality and use of the information by family members and other third parties. What are the implications of this knowledge for individuals and their families? And for society more widely? How should this new information be used? How do people deal with the choices that new knowledge and technologies offer? Drawing on extensive ethnographic research with families affected by Huntington's Disease, and using perspectives from medical and cultural anthropology, the author explores the huge disparity between the experience of living with the results of genetic testing and the knowledge and expertise which are drawn on to develop policy and clinical services.

Monica Konrad is Fellow of Girton College and Research Associate at the Department of Social Anthropology, University of Cambridge. Her recent publications address the relevance of contemporary anthropology for global governance in science, international bioethics, and interdisciplinary studies.

"Narrating the New Predictive Genetics makes an original and important contribution to current scholarship on geneticisation by expanding the normative definition of bioethics beyond rules and principles to illuminate the relational ethics involved in HD decision-making. Refreshingly self-reflexive Konrad combines anthropological insight into kinship and morality with bioethics and shows how the social and natural sciences might well converge to help produce better policy rooted in how individuals and families really respond to genetic information, rather than assumptions about what their reactions will or ought to be.- Candian Journal of Sociology Online, Shelley Z. Reuter, Department of Sociology and Anthropology, Concordia University