Groundbreaking Study to Tackle Cancer Disparities among Black Women

In May of 2024, the American Cancer Society announced the launch of the VOICES of Black Women study, a first-of-its-kind initiative that aims to enroll 100,000 participants in “the largest behavioral and environmental focused population study of cancer risk and outcomes in Black women in the United States.” If the study meets its aims, it could serve as a tremendous step forward in understanding disparities in cancer detection, treatment, and survivorship that disproportionately affect Black women.

Though cancer rates are rising in many segments of the United States, Black women are among the most severely impacted. For instance, according to the Breast Cancer Research Foundation (BCRF), “While there has been an overall 42 percent decline in breast cancer deaths over the last three decades—there is a persistent mortality gap between Black women and White women.” The mortality rate for Black women is a devastating 40 percent higher than for White women even though cancer incidence rates among Black and White women are close. This is evidence, according to BCRF, that “[cancer] breakthroughs haven’t benefitted all groups equally—and this disparity has remained unchanged for more than a decade.”

Alarmingly, younger women are increasingly being diagnosed with breast cancer, and Black women diagnosed with breast cancer under the age of 50 are twice as likely to die than White women.

The study [could be] a tremendous step forward in understanding disparities in cancer detection, treatment, and survivorship that disproportionately affect Black women.

In addition to breast cancer, which is the most common and deadly form of cancer in US women, Black women have among the highest cancer mortality rates and the lowest survivorship rates for several other types of cancer. Stark racial disparities in mortality also exist for uterine cancer; the American Association for Cancer Research found that “Black women have about the same incidence rate as White women but double the likelihood of dying from it.” Cervical cancer also disproportionately kills Black women.

In addressing the importance of the VOICES of Black Women study, Dr. Alpa Patel, one of the co-principal investigators, said, “The data we’ve uncovered through previous population studies has been critical in reducing the unacceptably high burden of cancer, but that reduction has sadly not been equal. By centering Black women’s voices and experiences, we can dig deeper in uncovering the unique challenges and barriers contributing to cancer disparities and develop tailored interventions to mitigate them.”

The American Cancer Society’s study occurs alongside several studies that have linked formaldehyde, a toxic chemical found in hair relaxers that some Black women use, with cancer risk. A paper in the International Journal of Cancer, for instance, linked the use of chemical straighteners to breast cancer risk. Similarly, the National Institutes of Health also found that hair straightening chemicals increase uterine cancer risk and that Black women may be more affected due to higher use of products with these chemicals.

As a result, the US Food and Drug Administration (FDA) now discourages consumers from using hair smoothing or hair straightening products that contain formaldehyde on the basis that the chemical “can be harmful” by causing immediate reactions, chronic and long-term problems, allergic reactions, and “possibly cancer.” NBC News reported that the United States lags behind other countries, including Canada, China, and the European Union, which have issued bans or restrictions on formaldehyde products. The FDA is now considering a ban.

The VOICES of Black Women Study: What We Know So Far 

According to the study’s press release, the VOICES of Black Women study is an ambitious 30-year-long undertaking that will include “Black women between the ages of 25 and 55 from diverse backgrounds and income levels who have not been diagnosed with cancer.” The 100,000 Black women who participate in the study will be drawn from “20 states and D.C. where, according to the U.S. Census, more than 90 percent of Black women in the U.S. reside.”

Recruitment for the study began in October of 2023. Once enrollment has been completed, the American Cancer Society will begin accepting proposals from researchers seeking to collaborate.

Black women carry a long and sordid history of injustices when it comes to medical research and clinical trials.

The study is designed to follow women who are currently cancer-free and observe the incidence, detection, treatment, and survivorship of study participants over time. Participants will complete a survey to enroll and two more each year of the study. The enrollment survey asks questions about medical history, diet, sleep patterns, physical activity, mental health, stress levels, and experiences of racism and discrimination. The study will be overseen by Emory University’s institutional review board (IRB). In human subjects research, IRBs review research studies to ensure that they comply with applicable regulations, meet commonly accepted ethical standards, follow institutional policies, and adequately protect research participants.

While there is no specific mention of intent to better understand cancer in Black women on a genetic level, the study includes a substudy that will acquire blood tests from participants. According to the information available on the American Cancer Society’s website for the substudy, researchers are studying blood samples to better understand participants’ genetic information and the genetic changes that may have occurred over time. Researchers are also going to use blood samples to gather information on hormone levels, markers of immunity, environmental exposures, infections, and other metabolic factors like cholesterol levels.

More genetic research is urgently needed among historically underrecognized populations, including Black women. According to the Genome Wide Association Studies (GWAS) Diversity Monitor, approximately 95 percent of all genomic data is drawn from European (White) populations, with only a small fraction (less than 1 percent) coming from African, African American, and Afro-Caribbean populations. However, while an additional 100,000 research participants will be useful, it will not be enough to even the scales in terms of research on the genetic components of disease for minoritized populations.

Confronting Harm in Medical Research on Black Women

Black women carry a long and sordid history of injustices when it comes to medical research and clinical trials that have understandably stymied their participation in studies that could lead to scientific breakthroughs.

For instance, the history of medical experimentation on Black women by the so-called “father of American gynecology,” James Marion Sims, and his “surgical theater” has become a well-known instance of the exploitation and cruelty foisted upon Black women by the medical establishment.¹  

Another harrowing example of extractive policies that have been used against Black women for the benefit of science is the story of Henrietta Lacks, whose cells, later dubbed HeLa cells after the first two letters of her first and last name, were used for research without her knowledge and consent. Her cells, in the more than 70 years since they were taken from her body, became integral to biomedical research around the globe and were involved in scientific breakthroughs that have saved countless lives, though Lacks only survived eight months after her cancer diagnosis.

The fraught relationship between Black women and the medical industrial complex persists today. Human rights violations against Black women still abound in medicine and health policy. In May of 2024, for instance, STAT’s investigative reporting revealed that doctors were pressuring sickle cell disease patients, who are mostly Black, to undergo unwanted sterilizations. The women who were sterilized allege that they were given little to no time to make these life-altering decisions, they were not given all the information needed to make an informed decision, and they never received information about less-invasive alternatives.

We need bigger and bolder investments to positively impact Black women’s health.

These incidents not only continue to shed light on how doctors too often abuse Black women, but they also tie to America’s hidden history of eugenics whereby Black women and other women labeled “undesirable” had their reproductive autonomy stripped from them when they were forced or coerced into sterilization by hysterectomy or tubal ligation.

It took until April 2024 for the Department of Health and Human Services (HHS) to release a letter to teaching hospitals and medical schools affirming that written and informed consent is needed before sensitive and intimate examinations, such as breast, pelvic, and rectal examinations, are performed on patients. Previously, such exams were routinely conducted on anesthetized patients at teaching hospitals. Because teaching hospitals often serve vulnerable populations, the practice, according to TIME, “disproportionately impacts poor and ‘public’ patients, many of whom are uninsured or minorities.”

Due to the concerns Black women have when it comes to participating in research studies, enrollment for the VOICES of Black Women study may prove challenging. However, there are signs of hope. Dr. Shana Nitri, a family medicine physician and medical director of the University of Maryland Greenebaum Comprehensive Cancer Center’s Baltimore Cancer Program, who is also one of the study’s volunteers, told her local news station that she is excited about the study because “we’ll get more information from Black women which will help us direct education and outreach.”

While this initiative by the American Cancer Society represents an important step forward for health equity and social justice, we need bigger and bolder investments to positively impact Black women’s health. Hopefully, the American Cancer Society’s efforts will also inspire large foundations, federal agencies, and industry to support studies that offer Black women the care and consideration regarding their health and wellbeing that they have too often been denied.

Notes 

1. Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Anchor Books, 2006), 101–106.