Modern Harvesting of Black Health Data

Wide gaps have always existed between Black and white health data, especially for chronic diseases like diabetes. Medical exploitation, non-consensual data harvesting, and unscientific experimentation on Black communities were used to obtain data from our communities to bridge the gap. Incidents that remain fresh in mind include:

The theft of Henrietta Lacks’ cells in 1951 while undergoing treatment for cervical cancer, which became known as the HeLa cell line
Dr. J. Marion Sims, known as “father of modern gynecology”, operated on at least ten unconsenting enslaved women in Alabama without anesthesia from 1846 to 1849
From the 1950s to 1970s, Dr. Albert Kligman conducted extensive and highly unethical dermatological and chemical experiments on mostly impoverished Black men who were inmates at Holmesburg Prison in Philadelphia.

We live in a different world now, and medical data is still being harvested from members of our community but in different ways. With the rise of AI-powered medical tools, electronic health records, and wearables, our community unknowingly has their health data taken and used in ways they may not have approved. But who really profits from our diabetes health data?

Why the Black Community Has Higher Digital Health Adoption

By the end of 2026, it is projected that around 20% to 30% of all medical visits in the United States will be conducted remotely. The 2026 digital health adoption statistics report shows that physician telehealth adoption has nearly tripled from 25.1% in 2018 to 71.4% in 2024.

The Black community is leading in digital healthcare adoption, notwithstanding disproportionate internet access. The increased adoption of health technologies in our community is borne out of necessity:

Bypassing systemic medical biases: Health technologies lower our reliance on traditional gatekeepers that may overlook or dismiss our concerns
Proactive management of chronic conditions: Since our community is disproportionately affected by chronic diseases like diabetes, hypertension, and cardiovascular diseases, we rely on digital health tech like AI-powered chatbots to proactively manage chronic conditions
Overcoming geographic and economic barriers to health access: Many Black communities are underfunded, creating sparse access to specialized facilities and physicians

Health Challenges the Black Community Manage Digitally

The chronic health problems members of our community manage the most using digital health technologies and wearables are hypertension and diabetes. The reason is connected to their high prevalence in our community and the quantifiable nature of tracking them.

Black adults are roughly 60% more likely to be diagnosed with type 2 diabetes than white adults. Managing diabetes requires strict, regular logging of biological metrics. This acts as a massive driver for digital health engagement.

Black adults with diabetes frequently use digital health technologies to check their blood glucose patterns, log meals, track physical activities, and automatically share real-time health data with their health providers through mobile apps or patient portals.

Hypertension also disproportionately affects the Black community. Around 43% of Black men experience high blood pressure compared to roughly 30% of their white counterparts. Connected Bluetooth blood pressure cuffs and smartwatches with built-in photoplethysmography (PPG) sensors to measure heart rate variability are frequently used in our community.

Modern Harvesting of Black Health Data

Commercial tracking apps, biometrically linked public health systems, and remote clinical monitoring tools are the new ways of harvesting Black health data. For example, millions of individuals utilize consumer apps like Fitbit and Apple Health to log heart rates, step counts, sleep cycles, and blood glucose levels.

Apps that require account registration that syncs across multiple devices sends the user’s data to the company’s cloud servers. Developers, system administrators, and automated AI engines have direct access to this data on the backend to power dashboards, analyze trends, and offer the individual personalized insights.

Depending on the company’s privacy policy—which unfortunately many people in our community don’t read—the cloud-stored data may be shared with a third party for studies and research purposes.

Global health tech corporations actively seek the genomic data of the Black population because it holds the world’s highest genetic diversity. This data is often retrieved through partnerships where proprietary, foreign-hosted software is provided to local clinics at no cost in exchange for access to backend data.

Who Profits from Black Health/Diabetes Data?

The biological data and materials stolen from Henrietta Lacks laid the foundation for multi-billion-dollar medical advancements, but her family was kept in the dark for decades and received no compensation.

Black health data is one of the most valuable resources in modern medicine and public health. It serves as a foundation for correcting historical health disparities. Health technology manufacturers and pharmaceutical companies particularly profit from Black diabetes data.

Since the current laws lack explicit framework protocols determining patient ownership of device data, the data becomes a lucrative corporate commodity. Some of the companies profiting from diabetes data of members of our community include:

Continuous Glucose Monitors (CGMs), insulin pumps, and smart health tracker manufacturers who use the real-time data to optimize their proprietary app algorithms and software systems
Data aggregators use the data for predictive analytics platforms and training AI-powered engines
Pharmaceutical manufacturers rely on clinical trial data purchased from hospital systems and biobanks to project market expansion and target insurance formulary deals

How the Black Community Can Take Control of Our Health Data

Although corporations generate substantial revenue from underrepresented demographic datasets, Black patients rarely see financial or structural reciprocity. Instead, we continue to face systemic barriers to healthcare, medication rationing due to rising costs, and lack of legal control over how our personal health data is commercialized.

Protecting our health privacy requires a mix of digital hygiene and making informed consumer choices, because health data generated outside a doctor’s office is often unregulated.

Some of the ways we can take back control over our health data include turning off data sharing, restricting unnecessary app permissions (location, contacts, and Bluetooth unless absolutely necessary), and using a secondary email address and a pseudonym to sign up for non-medical fitness or diet apps. Remember to always read the fine print on free tools, especially how they handle users’ personal data.

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