Race & Spirometry (Part I)
When I started working at VitalFlo, I noticed in the universally used algorithms developed from clinical research that exist for predicting lung health, race or ethnicity is a necessary factor for the equation. As a healthcare company, we have an ethical responsibility for understanding the nuance of how our product is used, its effects on the health of our patients, and the implications of the readings of our product puts forth.
Race/ethnicity is a common and well-founded predictor in lung health, with a long history in the field for its practicality. Given the history of race in medicine, this is something worth questioning and investigating further. In this two-part series, we dive into those findings, and how the historical context of race in medicine rears its ugly head in spirometry as well. I wanted to begin with a broader introduction into the role of race in the field of medicine.
A Sordid History
The U.S. has a storied past when it comes to identity and medicine, which has rightfully led to mistrust of the medical community particularly amongst marginalized racial groups.¹ ² This is particularly true for the Black and African American community, whose abuse in medicine has persisted throughout American history. ³ While certainly not an exhaustive list, more famous examples include:
- The case of Henrietta Lacks, whose cells during a cancer examination were taken without permission and continue to benefit the world without compensation to her family. ⁴ ⁵ ⁶
- The Tuskegee Syphilis Experiment, a study ultimately abusing Black and African American participants without their permission, consent, or knowledge in a clinical study on a treatment for syphilis. The participants were deceived into participating, left untreated, and ultimately killed or left with the effects of late stage syphilis. ⁷ ⁸ ⁹ ¹⁰ ¹¹
- According to the CDC,¹² Black and African American mothers are 3–4 times more likely to die in childbirth than other racial groups, and American Indian/Alaska Native.
- Scientists and private organizations in the U.S. began the clinical trials of birth control contraceptive pills in Puerto Rico on the basis of low-income status,¹³ ¹⁴ ¹⁵ aligned with birth population control campaigns throughout the Caribbean.¹⁶ These campaigns reached a Senate hearing in which it was stated that efforts to reduce unemployment were in contrast to a growing population.¹⁶ This same Senate hearing addressed an urgent need for birth control for the low-income Black population as a way to reduce its size.¹⁷
- Coerced sterilizations of women in ICE detention centers at the border, brought to the attention by immigration detention center nurse and whistleblower.¹⁸ ¹⁹
When concerns about the Tuskegee Experiment finally made front-page news, the study ended 40 years into its diabolical makings.¹¹ This led to Congress passing the National Research Act of 1974 that informs ethics for human research participants in studies, and the subsequent commission publishing the Belmont Report in 1979. ²⁰ ²¹ It wasn’t until the 1990s when the government officially apologized for its wrongdoing in this study. ²² ²³
As for maternal death racial disparities, citizens are actively petitioning congress with often personal, tragic stories.²⁴ ²⁵ Congress representatives launched the Black Maternal Caucus in April 2019 to investigate legislative solutions.²⁶ ²⁷
Medicine has often been used to justify racial differences. ³ ⁹ ¹⁰ ¹³ Eugenics in the United States gained its popular and ignoble foothold in the late 1800s and in the early to mid-1900s, propagating the maintenance and advancement of power in classism, racism, and homophobia ²⁹ and going as far as involuntary sterilization. ²⁹ These efforts were popular and widely accepted.³⁰
While we often attribute eugenics to this isolated time period, its history stretches as far back as the ancient Greek philosopher ³¹ and as far forward as our current U.S. President when Trump appeared to endorse the Race Horse Theory first documented in a 2017 FRONTLINE documentary ³² and again on the campaign trail in September of 2020. ³³ ³⁴ ³⁵ White supremacy has gained more public strength in the last four years. The FBI warned about the threat of White supremacy nearly 15 years ago and coming to the public forefront in recent years with the rise in documented and violent hate crimes. ³⁶ ³⁷
The events of racism that exist in history, do not exist in a vacuum, and continue to repeat themselves until they become solidified as a foundational and accepted practice. The chants of “I can’t breathe” have become well-known and echoed in protest of police brutality and White supremacy, stemming from the murder of George Floyd who repeated this phrase 30 times during his fatal asphyxiation. ³⁸ ³⁹
As a lung health company, these words hit home pretty hard. We strive to ensure everyone can breathe well, and this means tackling social determinants of health including racism and classism that present specific obstacles to healthcare and create barriers to everyday living for marginalized groups. We must keep our eyes open, and our ears to the ground in paving the way for accessibility for individuals to determine their own health.
We began investigating as a company, and in part with our clinical partners on why this might be, and we dove into a literature review as part of the data science practice. When we began digging into the research that justifies its use, we found a long history stemming from slavery on race and ethnicity in spirometry to the intricacy of software in spirometers used today.
I’ll elaborate on this in Part 2: Predictive Equations.
- Jacobs, Elizabeth A et al. “Understanding African Americans’ views of the trustworthiness of physicians.” Journal of general internal medicinevol. 21,6 (2006): 642–7. doi:10.1111/j.1525–1497.2006.00485.x
- Armstrong K, Ravenell KL, McMurphy S, Putt M. Racial/ethnic differences in physician distrust in the United States. Am J Public Health. 2007;97(7):1283–1289. doi:10.2105/AJPH.2005.080762
- Washington, H.A., 2006. Medical apartheid: The dark history of medical experimentation on Black Americans from colonial times to the present. Doubleday Books.
- NPR.org. “‘Henrietta Lacks’: A Donor’s Immortal Legacy.” Accessed October 19, 2020. https://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy.
- Bloom, Stacie. “The Immortal Life of Henrietta Lacks.” The Journal of Clinical Investigation 120, no. 7 (July 1, 2010): 2252. https://doi.org/10.1172/JCI43410.
- Skloot, Rebecca. The Immortal Life Of Henrietta Lacks. New York : Crown Publishers, 2010. Print.
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- Tuskegee Study — Timeline — CDC — NCHHSTP. Published July 16, 2020. Accessed October 19, 2020. https://www.cdc.gov/tuskegee/timeline.htm
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- Racial and Ethnic Disparities Continue in Pregnancy-Related Deaths | CDC Online Newsroom | CDC. Published September 6, 2019. Accessed October 19, 2020. https://www.cdc.gov/media/releases/2019/p0905-racial-ethnic-disparities-pregnancy-deaths.html
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- Vargas T. Guinea pigs or pioneers? How Puerto Rican women were used to test the birth control pill. Washington Post. Published May 09, 2020. https://www.washingtonpost.com/news/retropolis/wp/2017/05/09/guinea-pigs-or-pioneers-how-puerto-rican-women-were-used-to-test-the-birth-control-pill/. Accessed October 20, 2020.
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- Manian M. ACLU News & Commentary. https://www.aclu.org/news/immigrants-rights/immigration-detention-and-coerced-sterilization-history-tragically-repeats-itself/.Published September 29, 2020. Accessed October 27, 2020.
- ICE, A Whistleblower And Forced Sterilization. [Radio series episode]. (2020, September 22). In 1A|WAMU. Washington D.C.: National Public Radio. Retrieved October 27, 2020, from https://www.npr.org/2020/09/18/914465793/ice-a-whistleblower-and-forced-sterilization
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