The risk of dying from cancer has steadily declined in the U.S. over the past few decades, but black women still have some of the lowest survival rates.
Although black women are less likely to be diagnosed with cancer than white women, they are more likely to die within five years, according to the National Cancer Institute. The disparity is particularly pronounced in the case of breast cancer, which kills black women at a rate 40% higher than white women, although their diagnosis rate is 4% lower.
Black women too 60% more likely than white women to die from cervical cancer it’s almost twice as likely to die from endometrial cancer.
To uncover what’s behind stark inequities, the American Cancer Society released a study Tuesday called VOICES of Black Women, which plans to enroll more than 100,000 Black women ages 25 to 55 in the US. This would make this the largest study of its kind ever carried out in the country.
Women must be cancer-free when they enroll in the study, which will follow them for 30 years to see how their medical histories, lifestyle factors, and experiences of racism affect the risk of developing or dying from cancer.
“With few exceptions, Black women are more likely to be diagnosed with late-stage cancer, aggressive tumor types, and have higher cancer-specific death rates than other women. It is in this context that the American Cancer Society is launching VOICES of Black Women,” Dr. Lauren McCullough, co-principal investigator and visiting scientific director at the American Cancer Society, said in a briefing.
Black women have been underrepresented in health research, in part due to a history of medical exploitation of black patients. Examples abound: in the 19th century, physician James Marion Sims performed experimental gynecological surgery on black women without anesthesia. Beginning in 1932, the 40-year Tuskegee experiment denied treatment to black men with syphilis. And in 1951, Henrietta Lacks’ cancer cells were grown without her consent and subsequently used in decades of fundamental scientific research.
“We recognize that there has been historical distrust in the black community for several reasons,” said a co-principal investigator of the VOICES study, Dr. Alpa Patel, senior vice president of population science at the American Cancer Society.
“It’s been really important for us to make sure we partner with women of color to understand how to construct this study in a way that is respectful,” she said.
The study allows participants to opt out of providing medical records and keeps their names hidden from published research. A review board will also provide ethical oversight.
To be eligible for the study, participants must reside in one of 20 states or Washington, D.C., which together represent more than 90% of the U.S. population of black women ages 25 to 55.
Registration begins with a brief registration on the study websitefollowed by a survey that asks about medical history, diet, sleep patterns, physical activity, mental health, stress levels, and experiences of racism and discrimination.
Once enrolled, participants will be asked to complete two surveys per year. If a woman develops cancer, study researchers may ask her for permission to contact her doctor to get more information about her diagnosis.
The findings could ultimately help eliminate barriers to cancer prevention, detection and treatment among black women, Patel said.
“It’s rare to use the word ‘transformative,’ but I think it’s very appropriate here,” she said.
This story originally appeared on NBCNews.com read the full story
