Race and Medicine: The Harm That Comes From Mistrust

The study was publicized in 1972 and immediately halted. To this day, it is frequently cited as a driver of documented distrust in the health system by African-Americans. That distrust has helped compromise many public health efforts — including those to slow the spread of H.I.V., contain tuberculosis outbreaks and broaden provision of preventive care.

According to work by the economists Marcella Alsan and Marianne Wanamaker, black men are less likely than white men to seek health care and more likely to die at younger ages. Their analysis suggests that one-third of the black-white gap in male life expectancy in the immediate aftermath of the study could be attributed to the legacy of distrust connected to the Tuskegee study.

Their study relies on interpreting observational data, not a randomized trial, so there is room for skepticism about the specific findings and interpretation. Nevertheless, the findings are consistent with lots of other work that reveals African-Americans’ distrust of the health system, their receipt of less care, and their worse health outcomes.

The Tuskegee study is far from the only unjust treatment of nonwhite groups in health care. Thousands of nonwhite women have been sterilized without consent. For instance, between the 1930s and 1970s, one-third of Puerto Rican women of childbearing age were sterilized, many under coercion.

Likewise, in the 1960s and 1970s, thousands of Native American women were sterilized without consent, and a California eugenics law forced or coerced thousands of sterilizations of women (and men) of Mexican descent in the 20th century. (Thirty-two other states have had such laws, which were applied disproportionately to people of color.)

For decades, sickle cell disease, which mostly affects African-Americans, received less attention than other diseases, raising questions about the role of race in how medical research priorities are established.