Sorensen asks: “Have historical abuses discouraged too many from participating?”
Edwards answers: Public trust is huge, whether working with a historically disadvantaged or abused population or just the general question of public trust in institutions.
We don’t have health care for everyone in America. In places like Canada and England, there tends to be more enthusiasm in signing up for a population based study because people feel they benefit from the research. Public health and a more comprehensive system ensures greater protection for and benefits for participants.
That’s a problem in America both generally and especially in populations like African Americans who have suffered particularly infamous abuses like in the Tuskegee syphilis experiment. Some Native American tribes keep control of data, sharing with only the projects they are interested in.
Edwards closes by observing that there is a breakdown in communication, both with specific populations after research is completed and with the public in general. People aren’t getting the feedback they expect from scientists.