The relationship of race and ethnicity to treatments in the U.S. of genetic disorders is the focus of a new book co-authored by Stephen Pemberton, PhD, assistant professor in the federated department of history at New Jersey Institute of Technology (NJIT). The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis and Sickle Cell Disease, to be released May 15, 2006 from Johns Hopkins University Press, investigates critical issues arising from efforts to utilize genetics in American health care.
The Human Genome Research Institute at the National Institutes of Health provided initial funding for the text. Keith Wailoo, PhD, professor of history at Rutgers University--New Brunswick, is co-author.
“As we move into the age of genetic medicine,” says Pemberton, “we face a mixture of new challenges and old problems. This book tackles the fact that the future that Americans face is as troubled by racial ideology and cultural politics as is our past, and that the ethnic diversity that characterizes American society is also reflected in how Americans have greeted innovation in biomedicine.”
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,” said Pemberton. “Tay-Sachs is identified with Jewish Americans, cystic fibrosis is labeled a ‘Caucasian’ disease and sickle cell disease is associated with African Americans.”
Troubled Dream reveals how these three genetic 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, the book tells 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.
“The book uses the histories of Tay-Sachs, cystic fibrosis, and sickle cell disease as a lens for understanding how innovative medicine and cultural diversity intersect in America,” said Pemberton. “Ultimately, Troubled Dream is a history that examines how Americans have deployed the power of genetics and shaped disparate health care expectations and experiences for different sectors of our population. Americans have always found race and ethnicity to be troubling issues. That remains true as we head into the age of genetic medicine. ”
Pemberton received his doctorate in history from the University of North Carolina, Chapel Hill.