Books by Stephen G Pemberton
The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress
By the 1970s, a therapeutic revolution, decades in the making, had transformed hemophilia from an... more By the 1970s, a therapeutic revolution, decades in the making, had transformed hemophilia from an obscure hereditary malady into a manageable bleeding disorder. Yet the glory of this achievement was short lived. The same treatments that delivered some normalcy to the lives of persons with hemophilia brought unexpectedly fatal results in the 1980s when people with the disease contracted HIV-AIDS and Hepatitis C in staggering numbers. The Bleeding Disease recounts the promising and perilous history of American medical and social efforts to manage hemophilia in the twentieth century.
This is both a success story and a cautionary tale, one built on the emergence in the 1950s and 1960s of an advocacy movement that sought normalcy—rather than social isolation and hyper-protectiveness—for the boys and men who suffered from the severest form of the disease.
Stephen Pemberton evokes the allure of normalcy as well as the human costs of medical and technological progress in efforts to manage hemophilia. He explains how physicians, advocacy groups, the blood industry, and the government joined patients and families in their unrelenting pursuit of normalcy—and the devastating, unintended consequences that pursuit entailed. Ironically, transforming the hope of a normal life into a purchasable commodity for people with bleeding disorders made it all too easy to ignore the potential dangers of delivering greater health and autonomy to hemophilic boys and men."
The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease
Why do racial and ethnic controversies become attached, as they often do, to discussions of moder... more Why do racial and ethnic controversies become attached, as they often do, to discussions of modern genetics? How do theories about genetic difference become entangled with political debates about cultural and group differences in America? Such issues are a conspicuous part of the histories of three hereditary diseases: Tay-Sachs, commonly identified with Jewish Americans; cystic fibrosis, often labeled a "Caucasian" disease; and sickle cell disease, widely associated with African Americans.
In this captivating account, historians Keith Wailoo and Stephen Pemberton reveal how these diseases—fraught with ethnic and racial meanings for many Americans—became objects of biological fascination and crucibles of social debate. Peering behind the headlines of breakthrough treatments and coming cures, they tell a complex story: about different kinds of suffering and faith, about unequal access to the promises and perils of modern medicine, and about how Americans consume innovation and how they come to believe in, or resist, the notion of imminent medical breakthroughs.
With Tay-Sachs, cystic fibrosis, and sickle cell disease as a powerful backdrop, the authors provide a glimpse into a diverse America where racial ideologies, cultural politics, and conflicting beliefs about the power of genetics shape disparate health care expectations and experiences.
Journal Articles by Stephen G Pemberton
Perspectives in Biology and Medicine, 2019
Eric Weinberg and Donna Shaw's Blood on Their Hands: How Greedy Companies, Inept Bureaucracy, and... more Eric Weinberg and Donna Shaw's Blood on Their Hands: How Greedy Companies, Inept Bureaucracy, and Bad Science Killed Thousands of Hemophiliacs (2017) belongs to a genre of underappreciated works that examine one of the greatest medical tragedies of the 20th century: the iatrogenic epidemics of HIV-AIDS among hemophilia patients. The book's focus on the legal fallout in the United States following this medical catastrophe typifies how and why good decision-making, effective healing, and social justice have been so elusive in our emergent age of global biocapitalism.
Historical Perspective on Gene Therapy for Haemophilia. Part of Nature Outlook special issue on H... more Historical Perspective on Gene Therapy for Haemophilia. Part of Nature Outlook special issue on Haemophilia
Book Chapters by Stephen G Pemberton
in Susan Burch and Michael Rembis, ed. Disability Histories (Urbana, IL: University of Illinois Press, 2014), 237-57., Dec 2014
in Bernd Gausemeier, Staffan Müller-Wille, and Edmund Ramsden, ed. Human Heredity in the Twentieth Century (London: Pickering & Chatto Publishers, 2013), 165-178., Oct 2013
in Susan Schrepfer and Philip Scranton, ed. Industrializing Organisms: Introducing Evolutionary History (New York: Routledge, 2004), 191-213., 2004
Book Reviews by Stephen G Pemberton
Bulletin of the History of Medicine, 2022
Bulletin of the History of Medicine, 2021
Bulletin of the History of Medicine, 2018
Social History of Medicine, 2018
Centaurus: The International Journal of the History of Science and Its Cultural Aspects, 2015
Canadian Journal of History, 2014
Isis: The Journal of the History of Science Society, 2013
Bulletin of the History of Medicine, 2013
Metascience: An International Review Journal for the History, Philosophy, and Social Studies of Science, May 15, 2013
Bulletin of the History of Medicine, Oct 2011
Bulletin of the History of Medicine, Jul 2009
History and Philosophy of the Life Sciences, Oct 2007
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Books by Stephen G Pemberton
This is both a success story and a cautionary tale, one built on the emergence in the 1950s and 1960s of an advocacy movement that sought normalcy—rather than social isolation and hyper-protectiveness—for the boys and men who suffered from the severest form of the disease.
Stephen Pemberton evokes the allure of normalcy as well as the human costs of medical and technological progress in efforts to manage hemophilia. He explains how physicians, advocacy groups, the blood industry, and the government joined patients and families in their unrelenting pursuit of normalcy—and the devastating, unintended consequences that pursuit entailed. Ironically, transforming the hope of a normal life into a purchasable commodity for people with bleeding disorders made it all too easy to ignore the potential dangers of delivering greater health and autonomy to hemophilic boys and men."
In this captivating account, historians Keith Wailoo and Stephen Pemberton reveal how these diseases—fraught with ethnic and racial meanings for many Americans—became objects of biological fascination and crucibles of social debate. Peering behind the headlines of breakthrough treatments and coming cures, they tell a complex story: about different kinds of suffering and faith, about unequal access to the promises and perils of modern medicine, and about how Americans consume innovation and how they come to believe in, or resist, the notion of imminent medical breakthroughs.
With Tay-Sachs, cystic fibrosis, and sickle cell disease as a powerful backdrop, the authors provide a glimpse into a diverse America where racial ideologies, cultural politics, and conflicting beliefs about the power of genetics shape disparate health care expectations and experiences.
Journal Articles by Stephen G Pemberton
Book Chapters by Stephen G Pemberton
Book Reviews by Stephen G Pemberton