by Mary F.E. Ebeling
University of California Press
What our health data tell American capitalism about our value--and how that controls our lives.
Afterlives of Data follows the curious and multiple lives that our data live once they escape our control. Mary F. E. Ebeling's ethnographic investigation shows how information about our health and the debt that we carry becomes biopolitical assets owned by healthcare providers, insurers, commercial data brokers, credit reporting companies, and platforms. By delving into the oceans of data built from everyday medical and debt traumas, Ebeling reveals how data about our lives come to affect our bodies and our life chances and to wholly define us.
Investigations into secretive data collection and breaches of privacy by the likes of Cambridge Analytica have piqued concerns among many Americans about exactly what is being done with their data. From credit bureaus and consumer data brokers like Equifax and Experian to the secretive military contractor Palantir, this massive industry has little regulatory oversight for health data and works to actively obscure how it profits from our data. In this book, Ebeling traces the health data--medical information extracted from patients' bodies--that are digitized and repackaged into new data commodities that have afterlives in database lakes and oceans, algorithms, and statistical models used to score patients on their creditworthiness and riskiness. Critical and disturbing, Afterlives of Data examines how Americans' data about their health and their debt are used in the service of marketing and capitalist surveillance.
"Afterlives of Data tells a disturbing story of citizenship in today's datafied societies. To get healthcare or housing, most of us are submitting to a new kind of leviathan that does not see people and relationships, but scores and ratings. This book is a strong call for democratic awakening."--Barbara Prainsack, University of Vienna
"Data extracted from our everyday lives shape our social standing and access to essential services. Combining rigorous research with a terrific ability to voice human experience, Mary Ebeling investigates the relations of power, trust, and interest that determine who gets to use our data--and how. This book illuminates the staggering risks and injustice permeating data-intensive services in the United States, thereby offering crucial insight on what needs to change."--Sabina Leonelli, University of Exeter
"Afterlives of Data is a powerful indictment of data practices that stigmatize and disadvantage so many Americans. Ebeling's highly original book ties obscure aspects of digitization to immediate and visceral crises of discrimination, inequality, and material deprivation. Rarely is such important and technical content presented in such a well-written and accessible narrative form. A truly impressive achievement."--Frank Pasquale, Brooklyn Law School
About the Author:
Mary F. E. Ebeling is Associate Professor of Sociology and affiliate faculty at the Center for Science, Technology and Society, Drexel University. She is author of Healthcare and Big Data: Digital Specters and Phantom Objects.