1949

Linus Pauling and colleagues discover that abnormal hemoglobin molecules play major role in formation of sickled red blood cells  reductionist belief that discrete molecular-level anomalies caused disease, spurring growth of molecular biology and search for desickling agents for sickle cell anemia (Wailoo I, 123). “Pauling’s discovery immediately made sickle cell disease into a researcher’s cash crop . . . sickle cell disease became a researcher’s commodity for doing science as well as a social commodity for building awareness of the African American condition. At the same time, it continued to be a commodity of increasing value in medical education, highlighting the links between molecular biology and clinical medicine . . . sickle cell disease was the quintessential stock example of how molecular-level mechanisms could lead to clinical disease. The malady’s unique molecular characteristics drew sickle cell patients into a new economy – one in which the drive to publish new findings, get grants, and build research programs increased the value of the patients themselves” (Wailoo II, 115, 116). In mid-80s, bone marrow transplantation as “a perverse therapeutic lottery,” on account of high-risk of death during procedure (as high as 25%) and likelihood of graft-versus-host disease (GVHD) among survivors (Wailoo I, 147-149). In 1995, hydroxyurea (HU), used to treat leukemia and believed to be a genetic switch, shown to reduce number of crises and produce a milder form of SCA, albeit with heightened risk for leukemia (Wailoo III, 142-147). The ethical dilemma: “Should medicine be offering these kinds of odds and choices at all? Should such dangerous life-sustaining techniques be part of the American medical marketplace?” (155). “Unlike the CF [cystic fibrosis] ‘gene doctors’ who came out of the subculture of research entrepreneurism, most sickle cell researchers weighing the evidence on BMT had no financial stake in the outcome. On weighing all the evidence, most agreed that BMT [bone marrow transplantation] remained too risky and that ‘the search for other therapies not based on marrow transplantation should be continued’” (157). “For sickle cell researchers and physicians, the racial experiences of patients have been considerably more than a convenient and vague allusion. For practitioners and patients, pain and infection management, the unfulfilled dream of desickling agents, and the gamble inherent in BMT were routinely racialized – and made to resonate with social and political meanings” (159).