By Chelsea Lenora Small, Forward Times Associate Publisher and Editor-in-Chief
For generations, Black women have shown up for everyone else while our own health questions went unanswered.
We have cared for families, built communities, powered movements, and carried entire systems on our backs, often while navigating health outcomes that were worse than everyone else’s, with fewer answers as to why. Too often, when it comes to medical research, Black women have been discussed, compared, or referenced, but not meaningfully included.
That exclusion has consequences.
Despite advances in cancer prevention, screening, and treatment, Black women continue to face the highest death rates and shortest survival for most cancers compared to any racial or ethnic group in the United States. Black women under 40 have higher breast cancer rates than any other group. Black women under 50 are twice as likely to die from breast cancer as white women. Lung cancer remains the second most commonly diagnosed cancer and the second leading cause of cancer death among Black women.
These disparities are not because Black women care less about our health. They exist because the systems designed to study disease, identify risk factors, and shape prevention strategies have historically failed to center our lived experiences.
That is why a national research effort now underway matters, and why participation from Houston’s Black women is especially critical right now.
The VOICES of Black Women study, led by the American Cancer Society, is the largest long-term research study of its kind focused exclusively on understanding cancer risk and outcomes among Black women.
The goal is ambitious and necessary: to enroll 100,000 Black women across the country who have never been diagnosed with cancer and follow their health experiences over time. Researchers aim to better understand how social, environmental, behavioral, and biological factors shape cancer risk and survival in Black women.
This includes everything from access to health care and exposure to environmental toxins to stress, discrimination, neighborhood conditions, nutrition, and physical activity. These are factors Black women talk about every day, but that traditional research models have too often treated as secondary or ignored entirely.
Right now, just over 500 women in Texas are enrolled. In a state as large and diverse as ours, and in a city like Houston, that number is far too small.
Houston is home to one of the largest Black populations in the country. If Black women’s voices are missing from this study here, the data will once again fail to reflect our realities.
Why Representation in Research Matters
Health research shapes everything from screening guidelines to public health recommendations to where funding is allocated. When Black women are underrepresented in research, the resulting policies and practices are built on incomplete information.
Historically, many major health studies either excluded Black participants altogether or included too few to draw meaningful conclusions. In other cases, Black women were grouped into broader categories that masked important differences in risk and outcomes.
The result is a medical landscape where guidelines are often based on averages that do not reflect Black women’s lives. That gap shows up in late diagnoses, misdiagnoses, and treatments that do not account for the unique factors shaping our health.
The VOICES of Black Women study is intentionally designed to change that by centering Black women from the start, not adding us as an afterthought.
Addressing the Trust Question Head On
It would be irresponsible to talk about research participation in Black communities without acknowledging the very real history that has shaped our skepticism.
Many Black Americans do not trust research studies, and for good reason. From exploitation to lack of informed consent to generations of harm disguised as science, the medical system has not earned blind trust.
This study acknowledges that reality and puts protections in place.
Participation is voluntary. Women can withdraw at any time. Data are protected through secure systems, and personal identifying information is kept separate from research data. When results are published or shared, individual participants are never identified.
The study is overseen by an Institutional Review Board at Emory University, whose role is to protect the rights and welfare of participants throughout the study’s duration.
Researchers use de-identified data, meaning participants are assigned a study ID instead of being named. No one outside a small group of trained research staff has access to personal information, and that access is limited to what is necessary for study operations.
Importantly, participants can choose whether or not to provide certain information, including Social Security numbers. While these are used in long-term studies to link to cancer registries and death records if needed, enrollment can still move forward if someone is uncomfortable providing that information.
This is not a clinical trial. No medications or treatments are involved. The study is observational, meaning researchers are learning from participants’ real-world experiences over time.
Why Houston Matters Right Now
Houston is a city shaped by industry, environmental exposure, economic inequality, and deep cultural resilience. Where you live, work, and raise your family matters when it comes to health outcomes.
Environmental factors such as air quality, proximity to industrial sites, access to green space, and neighborhood infrastructure all influence cancer risk. So do stress, access to preventive care, and the cumulative effects of navigating systems not built with Black women in mind.
If Houston Black women are not adequately represented in this research, the data will once again reflect someone else’s reality.
This is not about statistics for the sake of numbers. It is about ensuring that future cancer prevention strategies, screening guidelines, and health interventions are informed by the lives Black women are actually living here.
What Participation Looks Like
Eligibility is straightforward. Participants must be Black women between the ages of 25 and 55 who have never been diagnosed with cancer.
Enrollment takes only a few minutes to determine eligibility. Participants complete periodic surveys over time, sharing information about their health, environment, and experiences. There are no in-person visits required to get started.
Privacy protections are clearly outlined, and participants are informed every step of the way about how their information is used.
Progress Without Equity Is Not Enough
Progress has been made. Cancer death rates among Black women have declined by about two percent per year since 2010. Screening rates for breast cancer among Black women over 45 are comparable to those of white women. Smoking rates among Black women are lower than among white women.
And still, disparities remain.
Black women are less likely to be diagnosed with cancer but more likely to die from it. Younger Black women face disproportionate breast cancer mortality. These contradictions point to systemic issues that require better data to address.
The VOICES of Black Women study aims to change the foundation on which future health decisions are made.
Moving FORWARD With Intention
Black women have always been leaders, caregivers, and problem solvers. We deserve health systems that reflect that same level of care and intention toward us.
Participation in this study is not about fixing everything overnight. It is about ensuring that Black women are no longer invisible in the data that shapes our lives.
If we want different outcomes, we have to be counted.
For Black women in Houston, this is a moment to make sure our voices are not missing again.
To learn more about the VOICES of Black Women study or to check eligibility, visit the American Cancer Society’s VOICES of Black Women initiative online at https://voices.cancer.org/. Participation today helps build a future where Black women’s health is understood, prioritized, and protected.
Our voices matter — especially now.