The American Cancer Society has launched an ambitious, wide-ranging study focused on a population that has long been overlooked despite its higher rates of cancer and cancer-related mortality: black women.
The effort, called “Voices of Black Women,” is believed to be the first longitudinal population-based study of its size focused specifically on drivers of cancer incidence and mortality among black women.
Researchers plan to enroll 100,000 cancer-free black women between the ages of 25 and 55 in Washington, D.C., and 20 states where the majority of black American women live. Participants will be surveyed twice a year about their behaviors, environmental exposures, and life experiences, and will be followed for 30 years if they develop cancer.
Previous similar studies by the American Cancer Society have taught important lessons about what causes cancer, such as that smoking causes lung cancer and that eating red and processed meat increases the risk of colon cancer.
Previous studies have included large numbers of black women, but the studies “could not zero in on the specific drivers of cancer in that population,” said Alpa Patel, PhD, senior vice president of population sciences at the society and co-principal investigator of the VOICES study with Lauren McCullough, PhD.
“General population studies tend to ask questions that apply to the majority of the population,” she said, “so digging deeper into the lived experiences of discrimination, stigma, systemic issues, environmental influences, cultural aspects of health-related behaviors, and how the narratives around those are shaped in different populations — those unique aspects to understanding the causes of cancer in populations — haven't been asked.”
The women will be surveyed, for example, about their use of personal care products, such as chemical hair straighteners, which have been linked to some cancers. Researchers will track factors such as stressors related to the physical environment, neighborhood walkability, crime, air pollution, availability of healthy foods, and proximity to liquor and tobacco stores.
Black women have the highest mortality rates and poorest survival rates for many cancers of any racial or ethnic group. For example, black men and women have a higher incidence of colorectal cancer than white Americans.
Black women die from uterine cancer at twice the rate of white women, are twice as likely to be diagnosed with and more than twice as likely to die from stomach cancer, and are 40 percent more likely to die from breast cancer.
The persistently high mortality rate for black women with breast cancer is one of the reasons the U.S. Preventive Services Task Force recently lowered the starting age for mammography screening again, from 50 to 40.
Racial disparities in breast cancer survival are a relatively new issue: Until the 1970s, there were no racial differences in breast cancer outcomes between black and white women, Dr. Patel said.
“We know that tumors are more aggressive in black women compared to white women, especially at a younger age, but we don't fully understand why,” she said.
The study began recruiting participants late last year with a pilot launch in Atlanta and Hampton Roads, Virginia, and was expanded to other states and Washington state in May.
Eligibility to participate required being black, assigned female at birth or of female gender, no history of cancer (except for common basal cell or squamous cell carcinoma), and between 25 and 55 years of age.
This study does not require any medications, clinical trials, treatments, or lifestyle changes.
Breanna Berry, 30, who works in public health near Atlanta, signed up as soon as she could, as did her mother, Jacqueline Berry, 53. Jacqueline is a caregiver for a friend with breast cancer and lost her husband to pancreatic cancer three years ago, at age 53.
“My husband had been complaining of stomach problems for two years but was repeatedly misdiagnosed,” she said, adding that he died shortly after being correctly diagnosed with advanced pancreatic cancer.
“I'm interested in the reasons why,” she said. “Why are there such large differences? This is not an overnight study; it involves following people over a long period of time. It's a big undertaking, but I'm in it. I'm confident that our voices will make a difference for my great-grandchildren.”