As a historian of medicine, my published research has largely focused on the history of diseases and their management.
I am author, most recently, of The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress (Johns Hopkins University Press, 2011). This book interprets both the successes and problems that hemophilia management entailed in the last century, focusing especially on the optimism about technological progress that not only fueled hemophilia’s transformation, but also generated hope for the “normalization” of people of hemophilia. The latter goal, I argue, was consistently cast in gendered terms because the evolving medical characterization of hemophilia as a sex-linked hereditary disorder meant that the disease was seen predominately as a male affliction throughout the twentieth century. The book also details how the quest for “normalization” played an ironic and unforeseen role in the iatrogenic catastrophe that witnessed HIV and hepatitis C transmission to nearly ninety-percent of Americans with severe hemophilia in the 1980s. Additionally, this work addresses the medical, social, and cultural contexts that characterized relations between hemophilia advocacy groups, the medical community, private enterprise, and government agencies; and suggests how these relationships are relevant for understanding long-standing debates in the U.S. regarding the rights and the responsibilities of various actors in the medical marketplace. In short, The Bleeding Disease utilizes hemophilia’s history to address diverse issues of importance to contemporary medicine and society.
I am also co-author (with Keith Wailoo) of The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis and Sickle Cell Disease (Johns Hopkins University Press, 2006). That book situates the therapeutic histories of three well-known hereditary diseases as an explanatory backdrop for understanding how racial ideologies, cultural politics, and conflicting beliefs about the power of genetics have shaped disparate health care expectations and experiences in American medicine and society.
I am currently working on several research projects. One explores how genetics was understood, appropriated, and advanced by twentieth-century physicians engaged in preclinical and clinical research involving blood and diseases of the blood; from the use of biochemistry and animal models to the incorporation of the techniques of molecular biology into blood work, hematologists played a significant role in the formation of genetic medicine in the twentieth century. This work builds on my prior books, but is most directly an outgrowth of my article: “Canine Technologies, Model Patients: The Historical Production of Hemophiliac Dogs in American Biomedicine,” which appeared in Industrializing Organisms: Introducing Evolutionary History (New York: Routledge, 2004). Another project I am developing is a cultural and social history of blood’s status as commodity and its implications for human health. And finally, I continue to research problems associated with the historical management of chronic diseases (and am actively drawing on disability studies as well as socio-cultural analyses of medicine here).
Ph.D. in History/History of Science, University of North Carolina at Chapel HillM.A. in History, University of North Carolina at Chapel HillM.A. in Philosophy, University of Memphis
Honors, Awards, and Professional Service
Winner of the 2006 Association of American Publishers/Professional and Scholarly Publishing Division book award in the History of Science category for Keith Wailoo and Stephen Pemberton, The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease (Johns Hopkins University Press).
Visiting Scholar, Institute for Medical Humanities, University of Texas Medical Branch, Galveston TX, January-March 2004.
Faculty Fellow, Rutgers Center for Historical Analysis, New Brunswick NJ 2002- 2003.
Postdoctoral Associate, Institute for Health, Health Care Policy, and Aging Research and Department of History, Rutgers University, New Brunswick NJ, 2001- 2003.
John J. Pisano Grant, Historical Office, National Institutes of Health, Bethesda MD, 1998-1999
Sickle Cell Disease and Link to Race Focus of NJIT Researcher at NIH Event
NEWARK, Nov 10 2010
The history of sickle cell disease in the 20th century and its link to race is the focus of a Nov. 16, 2010 talk at a national symposium by NJIT Associate Professor Stephen Pemberton, PhD, an expert on the history of diseases. Pemberton will speak and join a panel discussion at the National Institutes of Health (NIH), Bethesda, 100th anniversary symposium commemorating the discovery of sickle cell disease by Chicago physician James B. Herrick. The event will be webcast. For more information, see http://www.nhlbi.nih.gov/meetings/James-Herrick-Sicklecell/index.htm
“Herrick’s discovery of sickle cell disease was a pivotal moment in medical history,” Pemberton said. “It stands as a crucial innovation in Western medicine as well as hematology, one that symbolized the power of microscopic analysis and the laboratory to give evidence to a distinctive form of anemia that physicians had previously failed to see among their African-American patients.”
Pemberton, a historian, wrote The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis and Sickle Cell Disease (Johns Hopkins University Press, 2006). The book received the science award that same year from the Association of American Publishers. Next year, Johns Hopkins University Press will publish his forthcoming book: The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress.
Pemberton will participate in the symposium’s opening panel discussion on historical and cultural perspectives. John Ruffin, director of the National Center on Minority Health and Health Disparities, will moderate. Pemberton’s talk, "Sickle Cell Anemia and the Vexed Crossroads of Race and Disease in America,” will examine health disparities of African Americans over the last century. “African Americans have been at a disadvantage in our healthcare system,” he said. “What historians have done is use sickle cell as a lens into the disparities in the treatment of the disease.”
Physicians and others believe today that the sickle cell trait is prevalent among people of African descent because the trait developed over time as protection against malaria. The trait is not the disease; it’s related to a specific gene. Individuals who inherit it from both parents have a 25 percent chance of developing the disease, a hereditary disorder leading to anemia and treatable by blood transfusions. Affected red blood cells are sickle-shaped, hence the name, and don’t carry oxygen efficiently so that patients experience painful crises as their tissues are starved.
Highlights from Pemberton’s talk include:
As the disease rose to prominence from 1950-1980, it came to embody the pervasive pain and suffering of the African-American community. Many politicians marked investments in research and treatment of sickle cell as a sign of sensitivity to issues of race and cultural difference in America, even where they sought to reduce overall investments in medicine and public health.
Despite the attention, the ways that the history of sickle cell disease has been told in the last century have (until recently) largely neglected the patient’s changing experience of their illness. Ironically, despite the growing social visibility of the disease in the U.S. over the last century, people with the disease remain a poorly understood, if not neglected, population.
"Canine Technologies, Model Patients: The Historical Production of Hemophiliac Dogs in American Biomedicine," in Susan Schrepfer and Philip Scranton, eds., Industrializing Organisms: Introducing Evolutionary History (New York: Routledge, 2004), 191-213.