Intentional Inclusion: Black Women, Breast Cancer, & Clinical Trials
Intentional Inclusion: Black Women, Breast Cancer, & Clinical Trials
October 9, 2023 | Blog Post
We must begin by examining the past, to inform us of the present. Historically, clinical trials have been exclusionary. Clinical research dates back to the early 1900s when the majority of participants within trials were white men.[1] This practice continued for decades and perpetuated the idea that the standard for all medicinal therapies should be based on their bodies. It was not until the passing of the NIH Revitalization Act in 1993 that women and minorities had to be included in clinical trials by law.[2] However, long before this act was passed, the bodies of Black women were medically exploited and experimented on without their consent. For example, gynecology as a medical discipline and practice was based on the bodies of Black enslaved women. The harm and terror imparted on enslaved women left generational impact within the Black community and partly fuels some of the medical mistrust we still see today. Medical mistrust not only stems from slavery, but also includes more recent scientific mishaps like that of Henrietta Lacks, whose cancer cells were used to produce the HeLa cell line, the first ever immortalized human cell line, without her consent.[3] Since this historic scientific mishap, we still see unfortunate health outcomes for Black women despite the modern medical interventions that exist, one of which is found in breast cancer diagnoses.
Black women are 41% more likely to die of breast cancer than White women [4] and are twice as likely to be diagnosed with Triple Negative Breast Cancer than white women.[5] Despite this, Black women are one of the lowest represented minorities in clinical trials for breast cancer in the United States (4 to 6 %) despite an incidence rate of 128.3 cancer diagnoses per 100,000 individuals annually.[6] This disparity is significant because research tells us that clinical trials increase the likelihood of treating early stage breast cancer. [7]
When considering clinical research, Black women have been excluded from oncology clinical trials for decades, and this has led to limited available knowledge on how Black women are impacted by cancer or how they may experience cancer differently from their white counterparts. There are certain forms of cancer like Triple Negative Breast Cancer (TNBC) that disproportionately impact Black women as well. TNBC is a very aggressive and hard to treat form of cancer that is commonly associated with worse health outcomes, a high frequency of metastasis, increased rates of mortality, and early relapse after standard chemotherapy when compared to other forms of cancer. Black women are three times as likely to be diagnosed with TNBC and of all of the Black women diagnosed with cancer in the year 2022, 21% were diagnosed with TNBC.[8]
Clinical research is important for Black women for several crucial reasons, some of which relate to health equity, health disparities, and representation. Black women have been disproportionately impacted by breast cancer therein creating a disparity between racial groups. By prioritizing the inclusivity of Black women in clinical research, healthcare professionals will be able to enhance their understanding of the underlying factors contributing to this disparity and find interventions that can improve health. When considering representation and generalizability, by including Black women in clinical trials, the therapy or intervention under investigation would be better suited for all patients and will also reflect the unique health needs, potential side effects, and responses to treatment for Black women. It should also be mentioned that the diversification of breast cancer clinical trials creates a window of opportunity to improve trust within the healthcare system. As previously mentioned, the United States has a dark history of unethical medical experimentation and exploitation on Black people and has understandably eroded the trust of many across generations. Conducting ethically sound and transparent research will help to rebuild the trust between Black women and the healthcare system.
Currently, organizations like Touch, The Black Breast Cancer Alliance, have created campaigns like When We Tri(al) to highlight the lives of Black women impacted by breast cancer by amplifying their voices and experiences to raise awareness of the positive impacts of clinical trial participation. It is because of organizations like these that we can look forward to necessary changes coming to the clinical trial landscape. In addition to this work, the healthcare research landscape has also been slowly changing to include more Black women in the workforce which will increase representation.[9] The increased representation seen in the healthcare space will diminish levels of bias sometimes found when conducting research, empower communities, and build trust among Black women. It is essential to continue the work and research to create a more inclusive research landscape for us all.
[1] Arun Bhatt, Evolution of Clinical Research: A History Before and Beyond James Lind, 2010
[2] NIH, NIH Revitalization Act of 1993 Public Law 103-4
[3] Johns Hopkins Medicine, 2023
[4] When We Tri(al), 2022
[5] American Cancer Society, 2022
[6] Susan G. Komen, Breast Cancer Incidence in U.S. Women by Race and Ethnicity, 2016-2020
[7] Medical News Today, 2022
[8] When We Tri(al), 2022
[9] McKinsey & Company, 2021
Sources:
Authors
Courtney Thompson
Healthcare Analyst, Center for Healthcare Innovation
Joseph Gaspero is the CEO and Co-Founder of CHI. He is a healthcare executive, strategist, and researcher. He co-founded CHI in 2009 to be an independent, objective, and interdisciplinary research and education institute for healthcare. Joseph leads CHI’s research and education initiatives focusing on including patient-driven healthcare, patient engagement, clinical trials, drug pricing, and other pressing healthcare issues. He sets and executes CHI’s strategy, devises marketing tactics, leads fundraising efforts, and manages CHI’s Management team. Joseph is passionate and committed to making healthcare and our world a better place. His leadership stems from a wide array of experiences, including founding and operating several non-profit and for-profit organizations, serving in the U.S. Air Force in support of 2 foreign wars, and deriving expertise from time spent in industries such as healthcare, financial services, and marketing. Joseph’s skills include strategy, management, entrepreneurship, healthcare, clinical trials, diversity & inclusion, life sciences, research, marketing, and finance. He has lived in six countries, traveled to over 30 more, and speaks 3 languages, all which help him view business strategy through the prism of a global, interconnected 21st century. Joseph has a B.S. in Finance from the University of Illinois at Chicago. When he’s not immersed in his work at CHI, he spends his time snowboarding backcountry, skydiving, mountain biking, volunteering, engaging in MMA, and rock climbing.