Black History Month in Clinical Research Isn’t About the Past. It’s About Power.
- Tamara Allen
- 5 days ago
- 4 min read
Every February, conversations about Black communities and clinical research often start in the same place — history, harm, and mistrust. Those stories matter. They shaped experiences, perceptions, and outcomes that still influence healthcare today.
But they are not the whole story anymore.
History Matters — But So Does What Comes Next
For many Black families, the relationship with medical research did not begin with invitation, it began with exclusion, exploitation, or deception. The most widely cited example is the Tuskegee Syphilis Study, a U.S. Public Health Service study in which Black men with syphilis were observed for decades without being offered available treatment.
That study did not just harm individuals. It shaped generational memory and helped
define how research institutions were perceived. Terms like distant, unaccountable, and an unwillingness to prioritize people over knowledge probably comes to mind for many when they think about clinical research. These perceptions although several decades ago, have not fully disappeared. They still influence how research efforts are viewed today, even as the field and companies like ours work to evolve the industry.
But here is what often gets left out of the Black History Month conversation:
The field of clinical research today is not supposed to operate the way it did then, and communities are actively ensuring that it does not.
Modern clinical research now includes:
Institutional Review Boards (IRBs) that oversee ethics
Informed consent standards
Patient protections and regulatory oversight
Community advisory boards
Greater transparency expectations
Increasing calls for participant feedback and return of results
Are systems perfect? Not at all. But the shift from "subjects" without a voice to participants with rights, protections, and growing influence is one of the most important transformations in research history.
And now, communities are pushing that evolution even further in ways that go beyond compliance and toward collaboration.
What’s often missing from Black History Month discussions in research are that Black communities are no longer subjects of research conversations — we are shaping the future of research itself.
The narrative is shifting. And that shift is about power.
The Old Narrative: Why People Don’t Trust Research
For years, the industry conversation centered around one question: “Why don’t Black communities trust clinical research?”
While rooted in real historical and lived experiences like Tuskegee, this framing positioned communities as the problem to solve rather than partners in solutions. It focused on reluctance, not leadership. Barriers, not brilliance.
The result? Efforts that often emphasized persuasion over partnership and recruitment over relationship.
The New Narrative: Communities as Co-Designers
Today, a different story is emerging.
Black community members are not just being invited into research at the point of enrollment. They are increasingly involved in:
Serving as community ambassadors and navigators
Advising on study design and participant experience
Helping shape how research is communicated
Identifying real-world barriers to participation
Influencing policies around inclusion, access, and equity
Building bridges between researchers and neighborhoods
This is more than participation. It is co-creation.
It reflects a deeper understanding that effective clinical research doesn’t just happen in labs and sites but in communities, in trusted spaces, through relationships and lived experience.
Engagement Is the New Foundation
We are witnessing a shift from enrollment-focused thinking to engagement-centered strategy.
Enrollment asks:
How do we get people into a study?
Engagement asks:
How do we build relationships that make research relevant, respectful, and responsive?
That difference matters. Because engagement starts long before consent forms and continues long after a study ends. It recognizes that people are not “participants” for a moment, they are community members whose voices shape the entire ecosystem of health and research.
This Is Black History in the Making
Black History Month is not only a time to reflect on what communities have endured. It is also a time to recognize what communities are building.
Right now, across the country:
Faith leaders are partnering with researchers to improve health education
Community advocates are sitting on advisory boards
Local networks are helping families understand research opportunities
Patients are demanding transparency, feedback, and respect
Digital platforms are creating new pathways between communities and research
This is not a story of absence. It is a story of agency.
Black communities are moving from the margins of research conversations to the center of how research is designed, delivered, and discussed.
That shift is historic and one that we know well. As a Black-led organization working at the intersection of community engagement and clinical research, we know firsthand that communities are stepping into roles as advisors, ambassadors, and co-creators in the research process. We don't just talk about community engagement, we help to create spaces where community voice, lived experience, and cultural knowledge shape how research is approached.
We see this transformation every day. Engagement is not an afterthought but rather it is the infrastructure that makes research more inclusive, more effective, and more responsive to the people it is meant to serve.
We believe Black History Month in clinical research should not only honor resilience. It should highlight leadership, innovation, and the community-driven movement shaping the next era of healthcare.
Because the future of research is not just about who is enrolled.
It’s about who has a voice, who has influence, and who helps define what research looks like from the start.
And that future is already being built.
Sources & Context:
This article references documented history and current frameworks shaping ethical and community-engaged clinical research, including: The Tuskegee Syphilis Study, as documented by the Centers for Disease Control and Prevention (CDC) and the U.S. National Library of Medicine and separately, Community-engaged research models supported by organizations such as the National Institutes of Health (NIH), PCORI (Patient-Centered Outcomes Research Institute), and FDA patient-focused initiatives.
Photo Credit: Community engagement and healthcare collaboration imagery used for illustrative purposes. If using stock imagery, credit according to platform licensing (i.e., Adobe Stock Images).