In March 1996, the General Accounting Office (GAO) issued the reportScientific Research: Continued Vigilance Critical to Protecting Human Subjects.It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always cleartoclinicians. Controversy (...) exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health (NIH) Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

In March 1996, the General Accounting Office (GAO) issued the reportScientific Research: Continued Vigilance Critical to Protecting Human Subjects.It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always cleartoclinicians. Controversy (...) exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health (NIH) Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

In March 1996, the General Accounting Office issued the report Scientific Research: Continued Vigilance Critical to Protecting Human Subjects. It stated that “an inherent conflict of interest exists when physician-researchers include their patients in research protocols. If the physicians do not clearly distinguish between research and treatment in their attempt to inform subjects, the possible benefits of a study can be overemphasized and the risks minimized.” The report also acknowledged that “the line between research and treatment is not always clear (...) to clinicians. Controversy exists regarding whether certain medical procedures should be categorized as research.”This problem currently plagues gene transfer research. A few months prior to the GAO report, an ad hoc committee appointed by National Institutes of Health Director Harold Varmus expressed similar concerns in its assessment of NIH investment in research on gene therapy. (shrink)

The historiography of pandemics and inequality can be characterized by two distinct but often overlapping traditions. One centers structural and political analysis, the other a race-critical approach to the production of human difference. This bibliographic essay reviews historical scholarship in these traditions spanning the past hundred years, with a focus on Anglophone literature in the history of medicine in the United States over the past half century. Early writing on the history of epidemics celebrated the conquest of disease through the (...) application of laboratory research. Insights from social history and environmental history came to inform new analyses of epidemic inequalities, drawing questions of race, class, and empire into the frame during the 1960s and 1970s. The AIDS pandemic of the 1980s further oriented scholarship toward reckoning with stigma, identity, and human experiences of inequality while also troubling the relationship between medicine and the state. In more recent decades, the scholarship on race, social inequality, and pandemics has become deep and broad, remedying longstanding biases toward elite scientific actors and the metropolitan centers of Europe and the East Coast of the United States. In expanding their vision, historians also have engaged in more nuanced analyses of racialization as a social, environmental, and ideological process of embodying difference. Further, where earlier scholarship often relied on mortality data, there has been growing awareness of how numbers shape narratives and are shaped by them in turn. In its conclusion, the essay highlights emerging themes in race and inequality with particular attention to themes that have become prominent amid the global devastation wrought by the COVID-19 pandemic. (shrink)

This paper focuses on sickle cell anemia and thalassemia as case studies of genetic disease in America. Before the 1950s, these two diseases were perceived by many physicians as closely related (indeed, by some, as indistinguishable). Sickle cell anemia was defined by most American physicians as a Mendelian dominant disorder specific to African-Americans. As such, it could be 'spread' by any individual parent 'carrier' through reproduction. This view of the disease fed into (and was supported by) prevalent social concerns about (...) miscegenation and, more generally, the dangers inherent in 'negro blood'. A particularly thorny problem for American physicians was how to explain cases of 'sickle cell anemia in white patients'. The paper examines how views about race, blood, and Mendelian genetics informed broader debates about the nature of hereditary disease and social relations in America from 1910 to 1950. (shrink)

While researching my 2001 book on sickle cell disease, I became aware of the politics of pain. In that malady—a painful disorder associated with African Americans and characterized by frequent infections and recurring painful “crises”—the politics of pain recognition and adequate relief intersect not only with drug concerns, but also with American racial politics. One cannot understand fully the history of sickle cell patients without understanding politics on two levels: the macropolitics of race in America and the micropolitics of medicinal (...) encounters. How these two kinds of politics collided in clinical decision-making about diagnosis, treatment, and pain management has long been a focus of my scholarship—not... (shrink)