“The hesitancy is there, but the refusal is not. And that’s an important difference,” said Warren, who later joined Katz in editing a book about the research. “Hesitant, yes. But not refusal.”
Tuskegee was not the deal breaker everyone thought it was.
These results did not go over well within academic and government research circles, Warren said, as they “indicted and contradicted” the common belief that low minority enrollment in research was the result of Tuskegee.
“That was the excuse that they used,” Warren said. “If I don’t want to go to the extra energy, resources to include the population, I can simply say they were not interested. They refused.”
Now researchers had to confront the shortcomings of their own recruitment methods. Many of them never invited Black people to participate in their studies in the first place. When they did, they often did not try very hard. For example, two studies of cardiovascular disease offered enrollment to more than 2,000 white people, compared with no more than 30 people from minority groups.
“We have a tendency to use Tuskegee as a scapegoat, for us, as researchers, not doing what we need to do to ensure that people are well educated about the benefits of participating in a clinical trial,” said B. Lee Green, vice president of diversity at Moffitt Cancer Center in Florida, who worked on the early research debunking the assumptions about Tuskegee’s legacy.
“There may be individuals in the community who absolutely remember Tuskegee, and we should not discount that,” he said. But hesitancy “is more related to individuals’ lived experiences, what people live each and every day.”
Some of the same presumptions that were made about clinical research are resurfacing today around the coronavirus vaccine. A lot of hesitancy is being confused as refusal, Warren said. And so many of the entrenched structural barriers that limit access to the vaccine in Black communities are not sufficiently addressed.
Tuskegee is once again being used as a scapegoat, said Lincoln, the USC sociologist.