The history of medicine, like so much of the history of everything human, is replete with examples of abuses of power (both physical and philosophical)—acts born of ignorance, stolen credit, and false credentials. One has only to recall the surgical methods developed by Dr. Marion Sims, an American physician, as he operated without anesthesia on enslaved Black women and the experiments conducted on the Tuskegee Airmen, Black military pilots who fought in World War II, from whom diagnoses were hidden and treatments were withheld all while considerable data were collected. So-called “studies” of many kinds conducted on specific ethnic, religious, or medically defined groups fill the annals of intra- and international affairs.
Since the Declaration of Helsinki, a statement of ethical principles for medical research involving human subjects adopted in 1964, we have truly come a long way. The ultimate aim and benchmarks of success were changes in international culture, the collective definition of common human decency, and proper conduct in regard to research on human subjects. You will note, however, that the practical road to that ideal began with regulations and policy; grassroots and committee-led enforcement of practice and reporting; and institutional and governmental oversight and enforcement of consequences for deficient practices.
But changing culture takes much longer. And rebuilding trust and establishing the kind of comfort level that allows people to speak out about important issues and to participate in a clinical trial or a research study takes even longer and requires human interaction on a personal level.
So, what has NINDS done to try to move the needle? How is NINDS making clear to people of color, and specifically Black people, that not only do their lives matter to us, their health, well-being, and voices as part of our NINDS family matter as well? Dr. Koroshetz, the NINDS director, has also published his thoughts in a new Director’s Message.Continue reading “We May Have Come So Far, But We Have Yet So Far To Go”