VOICES of Black Women Study

In 2024, ACS launched the VOICES of Black Women study, the largest behavioral- and environmental-focused population study of cancer risk and outcomes in Black women in the United States. The goal is to understand better the many drivers of cancer diagnosis, mortality and resilience within this population.

“Our interest is really in understanding who gets cancer and who survives cancer based off your day-to-day activities, exposures and experiences,” says Dr. Lauren McCullough, co-principal investigator.

One year in, the study has recruited about 4,200 participants across the United States. “The goal is to get to 100,000, which is a lofty goal, but that is the number that’s needed to be able to look at certain exposures and certain groups with the amount of specificity that’s required,” Dr. McCullough says. “When you have larger numbers, we’re able to look at more risk factors. We’re able to identify additional protective factors. We’re able to look at things not just by race, but by race and age, or race and geography.”

VOICES of Black Women study continues to recruit Black women between the ages of 25 and 55 who reside in all states and Washington D.C. and have never been diagnosed with cancer themselves (except certain types of skin cancer). Participants are asked to fill out two surveys a year and will be followed for 30 years. If they are diagnosed with cancer during that time, it will be tracked. The first survey takes about an hour; subsequent surveys take about 30 minutes.

ACS has been conducting large-scale population-based studies for around 70 years and recruited 2.5 million participants in that time. These vital studies have identified cancer risk factors like tobacco, smoking and excess body weight. However, the studies haven’t always been representative of the U.S. population, Dr. McCullough explains.

“One of those populations is black women,” she says. “Our most recent study The Cancer Prevention Study 3 includes about 4 percent of individuals who identify as black male or female. Studies that are specific to certain races or ethnic groups are important because we have not adequately spoken to risk factors that may disproportionately affect this group or uniquely affect this group. This study is very timely in thinking about this population and some of the emerging things that we know may be drivers of differential cancer risk.”

Dr. McCullough says they hope to attain more granular insights into cancer risks for Black women thanks to the study. “For example, we know that an excess body weight is a risk factor, but how people carry weight in combination with their physical activity or sedentary time or other exposures is also important,” she says. “Across the board, we want to be able to better tailor our public health prevention messages for this group and we also want to inform policy when thinking about some of the risk factors that disproportionately impact the black community, such as exposure to environmental toxicants.”

Additionally, over 80 percent of the VOICES of Black Women study research team are black women, from leadership (myself being a co-principal investigator) to the people receiving data. “We have been a part of this process from the beginning,” she says. “I know for this community it’s important for them to know that there are black women behind the scenes working on this study on behalf of black women.”

Dr. McCullough urges Black women who fit the study requirement to get involved. “Too often Black women have been left behind, and this is an opportunity for us to see and take care of ourselves,” she says. “This study represents black women, their strengths, and the opportunity to improve healthcare not just for us, but for future generations of black women. It does take an investment, and it is easy to say, those 4000 women, great for them. I’m glad they’re doing this. But we need you. We need your voice, we need your experience. It’s a collective that is going to make this initiative successful.”

To sign up for the VOICES of Black Women Study, visit voices.cancer.org.