MOTHERHOOD AND THE OBFUSCATION OF MEDICAL KNOWLEDGE - THE CASE OF SICKLE-CELL DISEASE

This study examines how low-income African American mothers of childre n with sickle cell disease (SCD) cope with the reproductive implicatio ns of having passed a genetic disease on to their children. Based on i n-depth interviews with 29 African American mothers, I found that most mothers knew about SCD prior to having a child with the disease; many knew they were carriers of the sickle cell trait. In explaining why t his knowledge did not lead them to alter their reproductive behaviors, mothers invoked a theme of medical mismanagement; that is, they said the genetic screening programs for SCD did not provide them with enoug h medical knowledge about the disease. The implication that adequate k nowledge about SCD would have affected their childbearing choices, how ever, is contradicted by their subsequent reproductive behaviors. I ar gue that the SCD diagnosis threatened motherhood, an important cultura l value among low-income African American women, and that they protect ed their reproductive autonomy by obfuscating SCD medical knowledge.