# Your participation in clinical trials matters—here’s why | Leigh Johnson | TEDxNYU Langone Health

Source: https://www.youtube.com/watch?v=qH9vFmUPNzs
Recap page: https://rapidrecap.app/video/qH9vFmUPNzs
Generated: 2026-02-22T19:02:47.147+00:00

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## Quick Overview

Leigh Johnson advocates for diversifying clinical trials by including more Black and underrepresented participants, drawing from her personal history of family members dying from preventable diseases like breast cancer and the documented historical mistreatment of Black communities in medical research, exemplified by the Tuskegee Syphilis Study, to argue that inclusive research, informed by genetic testing, is crucial for creating equitable healthcare solutions for everyone.

**Key Points:**
- Leigh Johnson's aunt, Sadie, died of breast cancer 30 years after her initial remission, highlighting the need for better, personalized treatment.
- Historical medical abuses, such as the 40-year untreated syphilis study on Black men (Tuskegee Study, 1932-1972), created generational mistrust in the US healthcare and research systems.
- In 2022, the FDA reported that only 15-20% of clinical trial participants were Black or African American, despite Black women having the highest death rates from breast cancer compared to other demographics.
- Johnson herself suffered from anxiety and panic attacks, finding relief through holistic treatments like talk therapy, prayer, meditation, and journaling, which she suggests should be better integrated into care.
- Genetic testing, which analyzes ancestral and health information, can help tailor health solutions, contrasting with the one-size-fits-all approach that fails many patients.
- Johnson urges scientists and the public to demand more inclusive clinical trials so that modern medicine benefits all populations, not just the demographic majority.
- The presentation occurred at TEDxNYU Langone Health on June 3, 2024, focusing on innovating for a healthier tomorrow.

![Screenshot at 00:20: Leigh Johnson displays a collage of old family photographs, including one of her Aunt Sadie, to establish the personal context of family history with serious illness, specifically breast cancer.](https://ss.rapidrecap.app/screens/qH9vFmUPNzs/00-00-20.jpg)

**Context:** Leigh Johnson delivers a personal and research-driven talk at TEDxNYU Langone Health, focusing on the critical need to address systemic biases and lack of diversity in clinical trials. She grounds her argument in her family's history with cancer, specifically the loss of her Aunt Sadie, and the broader historical context of medical mistreatment of Black communities, such as the Tuskegee Syphilis Study, to argue that medical advancements, including genetic testing, must be inclusive to effectively treat diseases across all populations.

## Detailed Analysis

Leigh Johnson’s talk at TEDxNYU Langone Health emphasizes that personal history, environment, and genetics all play vital roles in health outcomes, yet clinical trials often overlook diverse populations, leading to ineffective, one-size-fits-all treatments. She shares the story of her Aunt Sadie, who was made to feel whole by someone in life but ultimately succumbed to breast cancer after a remission period, and her sisters, who also died from the disease, illustrating the impact of familial disease history. Johnson connects this personal tragedy to systemic failures, citing the Tuskegee Syphilis Study (1932-1972) as a prime example of historical mistreatment leading to generational mistrust among Black communities toward healthcare and research. She notes that in 2022, only 15-20% of clinical trial participants in the US were Black or African American, despite Black women facing the highest death rates from breast cancer. Johnson advocates for holistic approaches alongside traditional medicine, mentioning that practices like talk therapy, prayer, and journaling helped her manage her own anxiety and panic attacks, which began in 2018. She concludes by calling for more diverse participation in clinical trials and the use of personalized genetic testing—which analyzes both ancestral and health information—to create equitable health solutions that benefit everyone, not just the demographic majority.

### Personal Connection to Health Disparities

- Speaker introduces the theme by asking about people who made one feel 'whole' and contrasts this with her Aunt Sadie, who battled breast cancer and passed away, and her two sisters who also died from the disease
- The lasting impact of these experiences informs her concern over healthcare inequities.

### Historical Context of Mistrust

- Johnson cites the Tuskegee Syphilis Study (1932-1972), where hundreds of Black families were monitored without treatment, as a key reason for the current lack of diversity in trials
- This history contributes to the distrust felt by communities of color toward the US healthcare system.

### The Clinical Trial Diversity Gap

- Citing a 2022 FDA report, Johnson reveals that only 15-20% of clinical trial participants are Black/African American, while Black women face the highest rates of death from breast cancer compared to other demographics
- This disparity leads to treatments not working effectively across all populations.

### The Power of Holistic Care and Genetics

- Johnson shares her personal experience managing anxiety and panic attacks through holistic methods like talk therapy and meditation, suggesting these are effective treatments that should be considered
- She points to the Human Genome Project and modern genetic testing as tools that allow for personalized, tailored health solutions, moving beyond generic approaches.

### Call to Action

- Johnson challenges the audience to consider what they know about clinical trials and to actively ask their doctors about participating in trials tailored to diverse genetic profiles, framing participation as the 'greatest act of community service' for future generations.

![Screenshot at 00:04: Leigh Johnson begins her talk on stage at the TEDxNYU Langone Health event, dressed in all black attire.](https://ss.rapidrecap.app/screens/qH9vFmUPNzs/00-00-04.jpg)
![Screenshot at 00:19: A montage of historical family photos is displayed, illustrating the personal connection Johnson has to diseases like cancer within her family.](https://ss.rapidrecap.app/screens/qH9vFmUPNzs/00-00-19.jpg)
![Screenshot at 03:15: A graphic slide details 'How Do Clinical Trials Work?' across four phases \(Phase 1 to Phase 4\), noting the systematic nature of medical investigation.](https://ss.rapidrecap.app/screens/qH9vFmUPNzs/00-03-15.jpg)
![Screenshot at 05:46: A black-and-white newspaper clipping from The New York Times is displayed, with the headline 'Syphilis Victims in U.S. Study Went Untreated for 40 Years,' serving as evidence of historical medical malpractice.](https://ss.rapidrecap.app/screens/qH9vFmUPNzs/00-05-46.jpg)
![Screenshot at 08:01: Covers of Nature and Science magazines featuring 'The Human Genome' are displayed, illustrating the advancement in genetic research that informs personalized medicine.](https://ss.rapidrecap.app/screens/qH9vFmUPNzs/00-08-01.jpg)