Given the African-American experience with the infamous Tuskegee experiment, it’s worrisome that the risks associated with consent-free experiments are not fairly spread out by race.
A study released on Monday found that African Americans are enrolled in clinical trials that don’t require patient consent at a disproportionately high rate, Stat News reported.
This involves administering experimental emergency medical procedures and drugs on patients who often can’t give consent because they’re unable to respond to questions. The Food and Drug Administration permits researchers to conduct these treatments under certain guidelines.
The study, published in Health Affairs, found that 29 percent of the patients involved in these experiments are Black, although African Americans represent about 13 percent of the population.
This stands in contrast to multiple studies that found African-Americans are underrepresented in consensual medical research. One study published in June, found that doctors have long used inaccurate guidelines to determine cardiovascular risks, which was particularly the case with at-risk African-Americans patients. A significant part of the problem with the guidelines was that Blacks were underrepresented in the patient sample used to create the guidelines.
News about consent-free experiments comes against the backdrop of government experiments, from 1932 to 1972, on African-American sharecroppers in Tuskegee, Alabama. Researchers deceived Black men about receiving treatment for syphilis, which actually went untreated. The experiments have contributed to widespread distrust in the African-American community of medical experiments—especially without consent.
The new study also revealed that many researchers who conduct consent-free experiments use a loophole to avoid publishing certain demographic data about the people they test. Government reporting regulations don’t specify which data they must reveal. This only adds to the lack of transparency and distrust.