By: Diana Skelton (France)
“The fact that they were illiterate was helpful, too, because they couldn’t read the newspapers. If they were not, as things moved on they might have been reading newspapers and seen what was going on.”
—Dr. Sidney Olansky, one of the directors of the Tuskegee syphilis experiment, speaking about the lies that were told to the study subjects
The illiterate people Olansky described were 600 African-American sharecroppers who, between 1932 and 1972, were studied by the U.S. Public Health Service to study the progression of untreated syphilis in men who thought they were receiving free health care. By the end of the study, 128 of them had died either of syphilis or of its related complications, 40 of their wives had been infected and 19 of their children were born with congenital syphilis. The unconscionable exploitation of these people led to new ethical rules on research.
While this kind of medical study would never be considered ethical now, social science research continues to sort people living in poverty into groups: some that receive support; and a control group that does not, but is monitored over the years. For instance, research on early childhood education like the Abecedarian Project and the Perry Preschool Study—showed that the control groups of low-income children had consistently worse outcomes than the others. Children in the control groups were more likely: to fail to complete high school; to give birth to children of their own at younger ages; to be arrested five or more times by the age of 40; and to remain in poverty as adults.
Recently a social scientist told me, “I see research being done now that might well help to demonstrate what can really help in ending poverty. But the researchers always choose a control group of people they decide to leave in poverty while studying them like lab rats! It’s unethical. How can I join in a project like that?”
This question is important. For any research to be ethical, the participants must give informed consent. Just what are the conditions for consent to be genuinely “informed” if a person is illiterate, or has little access to newspapers? If researchers have every reason to expect that those left in the control group will suffer worse outcomes than the others, isn’t asking them to commit to remaining in the study tantamount to refusing penicillin to a person suffering from syphilis?
Research can help us learn more about how to make it possible for all children to learn in school, about how to prevent homelessness and hunger, about how to shape strong communities where neighbors support one another. This is why ATD Fourth World uses only participatory action research, with people living in poverty acting as co-researchers alongside social scientists. Why can’t all social science researchers agree to raising ethical standards?