Black History Month 2026: Leadership in STEM

For 2026, the Association for the Study of African American Life and History (ASALH) has set the theme “A Century of Black History Commemorations,” marking 100 years of organized efforts to document and teach Black history and achievement. 

In the life sciences, this milestone aligns with a shift in how biomedical research is conducted, with increasing attention to how participation by patients, scientists and engineers influences the relevance and generalizability of the evidence base.

As research moves toward more individualized approaches through precision medicine, questions of participation have become increasingly central: who is enrolled in clinical trials, who is conducting these trials, whose data inform regulatory decisions and whose perspectives shape research priorities.

In our blog, we draw a spotlight on a few areas, from patient-focused regulatory science and long-term follow-up in sickle cell disease to recent recognitions and policy initiatives shaping a more representative research ecosystem.

Patient Experience as Regulatory Input: The Role of the FDA’s PFDD

One example of this shift is the FDA’s Patient-Focused Drug Development (PFDD) program, which incorporates patient experience data into regulatory evaluation. For diseases that disproportionately affect Black communities, including sickle cell disease, lupus, chronic kidney disease and maternal health conditions, patient organizations and advocacy groups have provided input on symptoms, functional limitations and treatment trade-offs that affect daily life.

According to the FDA, such input is used to inform the development of clinical outcome assessments and can influence how trial endpoints and benefit-risk considerations are evaluated. 

From a regulatory science perspective, PFDD supports efforts to ensure that efficacy and safety measures capture aspects of disease burden that are meaningful to patients, in addition to traditional clinical or laboratory parameters.

Sickle Cell Disease: Progress and Recent Challenges

The National Heart, Lung and Blood Institute (NHLBI) has led the Cure Sickle Cell Initiative since 2018, a collaborative program aimed at advancing gene-based therapies and building long-term evidence for a disease that affects about 100,000 people in the US, most of whom are Black. 

This effort helped lay the groundwork for the FDA’s 2023 approvals of the first gene therapies for sickle cell disease, which now require extended follow-up to assess durability, safety and quality-of-life outcomes.

In mid-2025, however, researchers reported that the NIH cancelled a roughly $750,000 grant for a sickle cell disease study, citing diversity, equity and inclusion considerations among the factors involved. The development highlighted concerns about continuity of support for long-term research in conditions that disproportionately affect Black patients.

Notable Research and Leadership Highlights from 2025

In September 2025, Chemical & Engineering News featured Amie Fornah Sankoh, a senior research specialist in R&D at Dow, as part of its annual Trailblazers series, highlighting her work on developing plant-based polymer coatings as alternatives to traditional fossil fuel-derived materials.

Institutional recognition of Black scientific leadership also continued in 2025 through the 39th Annual BEYA STEM Awards, which honored researchers and engineers across academia, industry, government and national laboratories. One name of note was Maj. Gen. (Ret.) Ronald L. Johnson, senior vice president of strategic initiatives and chief of staff at Georgia Tech, who was honored as Black Engineer of the Year. The BEYA awards highlighted contributions spanning biomedical research, data science, aerospace, materials engineering and defense R&D.

Broader discussions around equity in emerging technologies also gained visibility in 2025. The NAACP, in partnership with Sanofi, released a white paper calling for an “equity-first” approach to AI in healthcare, outlining a governance framework centered on transparency, inclusive data practices, community engagement and human-centered design. The paper noted that without intentional oversight, AI systems used in areas such as diagnostics and clinical decision support could reinforce existing disparities rather than reduce them.

Looking Ahead: Participation Across the Research Continuum

A 2025 analysis of pivotal Phase III trials supporting 341 FDA approvals between 2017 and 2023 found that only 6% of studies enrolled participants in proportions that matched the racial and ethnic makeup of the US population. The authors also reported that enrollment of Black and Hispanic participants declined over time, while representation of Asian and White participants increased or remained stable. 

Trials conducted in the US and those reviewed under the FDA’s Breakthrough Therapy pathway showed more balanced participation, suggesting that trial location and regulatory pathways are associated with differences in who is represented in the evidence base for precision medicine.

Similar participation gaps are seen in transplantation. In 2025, NHS Blood and Transplant reported that stem cell donations from Black, Asian and mixed-ethnicity donors in the UK had doubled over the past decade, yet ethnic minority donors still made up only 11% of the national registry, contributing to ongoing difficulties in finding matched donors for patients of similar heritage.

Representation is also visible across other frontiers of science and engineering. In 2025, aerospace engineer and former NASA scientist Aisha Bowe was reported to have a role in Blue Origin’s spaceflight program, pointing to the growing presence of Black technical leaders in commercial space exploration and advanced systems engineering.

As Black History Month 2026 reflects on a century of commemoration, these findings connect historical recognition with ongoing shifts in how research is designed and conducted.

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