As world populations continue to age, the incidence of very common, ultimately fatal neurodegenerative diseases (some of medicine’s most puzzling illnesses) will increase exponentially. Neurogenetic Diagnoses, the Power of Hope, and the Limits of Today’s Medicine explores the diverse impacts and intense meanings of genetic diagnoses for patients suffering from such diseases, and for their family caregivers and clinicians. Through richly-textured, often heart-wrenching longitudinal case studies, Neurogenetic Diagnoses... reveals how extremely difficult it can be for patients to obtain a definitive diagnosis for the cause of their symptoms, even with genetic testing; how, with or without definitive diagnoses, patients and family caregivers strive to come to terms with their situations; and how they are aided (or not) in these endeavors by their doctors. The analysis is framed by increasingly sharp social debate over the consequences of decoding the human genome -- and the impact of genetic technology on our lives.
Table of Contents
Introduction Part 1: Searching for Answers 1. A New Door Opening 2. Destination Unknown Part 2: Coming to Terms with Devastating Prognoses 3. Controlling Destiny 4. Dream of a New Life Part 3: Caregivers 5. Maintaining Hope and Independence in the Face of Despair 6. The Neurologists’ Conundrum Final Reflections
Carole H. Browner is Professor in the Department of Anthropology, the Department of Womens Studies, and the Center for Culture and Health, which is based at UCLA's David Geffen School of Medicine NPI-Semel Institute for Neuroscience and Human Behavior, USA. She is also editor of the collection, Reproduction, Globalization and the State: New Theoretical and Ethnographic Perspectives (Duke University Press, 2010).
H. Mabel Preloran has over 25 years experience as a cultural anthropologist in the US and in Latin America. She is a Research Anthropologist in UCLA’s David Geffen School of Medicine NPI-Semel Institute for Neuroscience and Human Behavior, USA. Her current research focuses on the use of genetic testing in neurology.
"Through the voices of persons with neurodegenerative movement disorders, their family caregivers and neurologists, Browner and Preloran bring to life the meaning of neurogenetic diagnoses and how genetic information is understood. Timely, relevant, and accessible, this book will appeal to both academic and lay audiences."
"...[a] superbly insightful work..." – Linda Furlini, McGill University, Transcultural Psychiatry
'This small book provides a very comprehensive picture of the complexities of neurogenetic disease...the authors’ use of case histories drives home the idea that disease experience is unique and family-based. Neurogenetic diagnoses: The power of hope, and the limits of today’s medicine is a valuable resource for all genetic counselors, physicians, and other health professionals who are involved with people confronting these diseases. The book would also serve as a powerful tool for ethicists and policy makers thinking about the future of genetic testing and medicine." – Jill S. Goldman, Columbia University, Journal of Genetic Counseling
"We would recommend this book as an illuminating account of patients’ caregivers’ and clinicians’ experiences. It is a particularly sensitive and rich account of an under-researched area and it is refreshing to read that the study challenged many ideas the authors previously held about what would be important to participants." – Karen Forrest Keenan and Deidre Cillers, Human Genetics
"Neurogenetic Diagnoses is a captivating book…It is impossible not to be moved by [the authors] evocative descriptions of the ‘everyday burdens of living with neurodegenerative disease’… Neurogenetic Diagnoses is a text I am certain I will be referring to again and again." – Martyn Pickersgill, University of Edinburgh, New Genetics and Society
"insightful and thorough examination of reactions to genetic testing" – Jane S. Paulson et al., Progress in Neurobiology
"Neurogenetic Diagnoses is a rare example of work that examines the intersection of genetics and the neurosciences (in this case clinical neurology)….The dual focus of Neurogenetic Diagnoses on neurology and genetics… makes it very well positioned to develop insights on the changing dynamics of what it means to be a neurological patient in the emerging era of genetic and genomic medicine…." – Fadhila Maazanderani, Edinburgh University, Science as Culture