Ethics and the Ongoing Fight for Equal Treatment (1955-1980, Section 13)
In the last decades of the twentieth century, Houston and the nation’s African-Americans continued to fight for political equality, recognizing the continuing disparities in the services their community received. A 1972 newspaper article by Jean Heller about the U.S. Public Health Service (PHS) confirmed the necessity of their participation.
Heller’s story shocked the nation and undermined many African-Americans’ trust in the health care system and in their government. The PHS, Heller revealed, conducted a 40-year clinical program to determine the effects untreated syphilis in black males. Some 399 black men with syphilis participated in the study at the Tuskegee Institute in Alabama. The men were poor, many were sharecroppers, and most were illiterate. In violation of all medical ethics, the PHS withheld the true nature of the study from the men. When the study began in 1932, most treatments for syphilis were toxic and of questionable effectiveness. However, by the mid-1940s, penicillin had become the standard and successful treatment of the disease, but it was not offered to the study’s participants. Both white and black doctors oversaw the program, but only black men were patients. Without treatment, the men spread the disease to their wives and children. Many of the men experienced the devastating sequelae of the disease, which included joint pain, neurological disorders, mental illness, and death.
In reaction to this revelation, the U.S. Congress passed a law establishing ethical guidelines for future medical research funded by the government. The NAACP filed a lawsuit on behalf of the test subjects that resulted in a $9 million settlement and the provision of free health care to the men and their affected family members. The mistrust generated by the study, however, fueled many African-Americans’ distrust of white medical institutions and practitioners.
While Tuskegee was perhaps the most famous, most organized, and most despicable of such actions, it was not the only event that contributed to this distrust. The United States was the first of many nations in the late nineteenth and early twentieth century that adopted the practice of forced sterilization, a procedure that prevents men from fathering children or women from bearing children. Sterilization laws initially targeted criminals, the mentally retarded, the mentally ill, the disabled, or others who were thought to carry defective hereditary traits.
However, courts often ordered the sterilization of African-Americans and other minorities who they deemed unfit. In other cases, physicians chose to sterilize minority patients often without their consent or their knowledge. Many African-American girls and boys were sterilized, only discovering what had happened years later when they tried to have children. Some 27 states still had sterilization laws on the books as late as 1955, although few were enforced. Evolving debates about medical ethics questioned the morality of un-consented sterilization and led to laws outlining new guidelines for sterilization. Nonetheless, many African -Americans nurtured a mistrust of the medical profession as result of such historical developments.