Second of two parts. This story is constructed entirely from Tweets in a chat organized by National Science & Technology News Service. See the original transcript here.
To understand the Tuskegee study, you have to understand it within the context of racism. The US apologized for the Tuskegee Syphilis Experiment, led by the US Public Health Service on rural African American men, 65 years after it occurred. President Clinton apologized for the government’s involvement. But was that enough?
Tuskegee plays a role in minimal participation of blacks in clinical trials. The impact of the syphilis study can be seen today in huge health disparity gaps. Lingering mistrust of clinical research is real and valid even for those of us in the industry.
It matters because it still impacts why so few clinical trials include African-Americans and other people of color. Mistrust of medicine leads to many people not asking questions of doctors about their care and to low medicine adherence.
Tuskegee should make us wary about all invocations of research for “the greater good” — great and good for whom? Who decides?
Consider that many people are still afraid to ask their own doctors demanding or insisting questions. Minorities and vulnerable people need to ask more questions. Easier said than done with underlying fear and mistrust.
Fear is a byproduct of powerlessness. So you don’t treat “black mistrust” simply with more information, but with empowerment. Trust-building is not a function of giving people facts. I wish public health researchers understood this. We need more minorities and people of color in the feeder disciplines that lead to folks going into bioethics.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.