Topline
The American Cancer Society on Tuesday launched the largest-of-its kind study meant to examine how racism, health history and lifestyle can impact the long-term health and cancer outcomes of black women in the United States, who have historically been excluded from medical research and are significantly more likely to die of breast, cervical and endometrial cancers than their white peers.
Key Facts
The study, “Voices of Black Women,” will follow 100,000 women between the ages of 25 to 55 for 30 years to examine how demographic-specific factors affect their risk of developing or dying from cancer.
Participants, who must be cancer-free at the start of the trial, will be surveyed twice a year about their day-to-day experiences that affect cancer risk and, if cancer develops, researchers will be in touch with a subject’s doctors to learn more about the diagnosis and study how to improve the cancer outcomes of Black women.
Participants can opt out of providing medical records and researchers will not include identifying information in published research.
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Surprising Fact
Black women tend to be diagnosed with breast cancer at a slightly lower rate than white women, but are significantly more likely to die from the disease. It is the leading cause of cancer death in Black women, who are 40% more likely to die than their white counterparts. Uterine cancer deaths are highest among black women, according to the National Cancer Institute, and Black women are 60% more likely to die of cervical cancer.
Key Background
Black men and women in the United States have a history as the victims of medical research abuse and ethical violations, which had led to their underrepresentation from many modern-day studies. Starting in the early 1900s, laws passed in 32 states allowed the government to sterilize the “insane,” “feebleminded,” “dependent” and “diseased” that saw more than 60,000 victims, most of whom were Black women. From 1932 to 1972, Black men were lied to about participating in a study to find a cure for syphilis when, in reality, they were part of a federally financed experiment into untreated syphilis. The public became aware of the Tuskegee Syphilis Study in the 1970s and the government soon after began paying reparations to its victims. In the 1940s, the cancerous cells of Henrietta Lacks were taken by doctors at the Johns Hopkins Hospital and given to researchers without her knowledge or consent, a major ethical violation. Her cells led to numerous breakthroughs in biological research but researchers continued to use them unethically—and her family never saw any money from the profits produced using her materials and no consent was ever given for the publishing of her name, medical records or cell genome, which was later redacted. The Lacks family later reached an agreement with the U.S. National Institutes of Health over further releases.
How Does Someone Volunteer For ‘voices Of Black Women’?
Participants in one of 20 states or Washington, D.C. can register for the study at voices.cancer.org.
