We May Have Come So Far, But We Have Yet So Far To Go

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.

NINDS-supported research programs

In our extramural component—the part of NINDS that gives grants to research institutions—we have established our Program in Global Health and Health Disparities, headed by Dr. Richard Benson. This program is dedicated to fueling research that levels the playing field in healthcare and supports efforts to improve the health and healthcare of marginalized and disadvantaged people. The program is conducting a needs assessment survey and is planning a workshop in 2021 to define research priorities for the future. Our program in stroke has funded multicenter and regional studies of stroke in Black and Hispanic communities for decades and helped define preventive and rehabilitative measures that have and will continue to improve the health of these communities. All our funded investigators are required to tell us explicitly what the racial, ethnic, and gender composition of their study’s patient population is relative to the total population affected by the disease they are studying. If a research study does not consider population diversity in its application, that proposal will not receive funding unless the omission is well-justified.

Our Office of Programs to Enhance Neuroscience Workforce Diversity (OPEN-WD), headed by Dr. Michelle Jones-London, conducts workshops for emerging and aspiring researchers from underrepresented groups, creates mechanisms to support these researchers at every educational and training level in biomedical science, facilitates networking among these researchers and with established scientists, and, with the Office of the Scientific Director, conducts outreach programs for Washington, D.C. area high school students, particularly young women of color.

Our intramural component—the part of NINDS that conducts research at the National Institutes of Health—hosts American Indian and Native Alaskan high school and college students, along with local students from other under-resourced backgrounds, in a summer research internship program under the direction of Drs. Rita Devine and Angel De La Cruz. NINDS hosts and mentors many post-baccalaureate students, many from underrepresented backgrounds, in its laboratories and research clinics. We have also presented a summer virtual lecture series for students from around the United States, presented by intramural scientists, with the hope of drawing more diverse groups of young people into careers in neuroscience.

How can we do better?

What are we working on now? To create a welcoming work environment, free of microaggressions, biases, and other insensitive interactions, we have begun to have open and often uncomfortable conversations aimed at bringing these issues to the surface to appropriately address them, learn from them, and validate the feelings and experiences of those who are impacted by them.

We are diligently working to improve inclusion in the neuroscience workforce as well as in research study participation. We recognize that extramural grants are not always awarded to the cross-section of scientists that reflects the diversity and breadth of the populations we hope to help, and our clinical studies do not always enroll as many patients from under-represented and marginalized groups needed to broadly apply study results to those populations. Optimally, enrollment would be sufficient to allow scientists to discern differences in susceptibility, incidence, and response to treatment in these populations, in relation to one another, and to majority populations. Our Program in Global Health and Health Disparities is seeking to improve our track record and those of our funded investigators around the United States and the world.

We still have a lot of work to do. We are committed to conquering fear and pain, fostering opportunity for everyone, and fighting inequity and oppression wherever it occurs. We have an amazing team full of boundless energy and drive and a vision and mission that keeps us working towards a world in which all people are freed from the restriction and burden of neurological disorders.

Learn More about:

If anyone has concerns that harassment is affecting an NIH funded project at a grantee institution should submit information regarding the situation through the anonymous reporting portal.