Race For The Cure: Including Black Women In Breast Cancer Research

African American woman with braids“As a Black woman, I definitely advocate for other Black women to become a part cancer research, and here is why,” says Bridgette Hempstead, a Black woman with metastatic breast cancer. “Medications are developed and they are mainly developed for middle-aged White women, because the research for Black women is not there.”

Hempstead is founder of Cierra Sisters, a support organization for African-American breast cancer survivors, and knows well the barriers for African-American women to engage in breast cancer research and the consequences if they are not included.

The Metastatic Breast Cancer (MBC) Project at the Broad Institute and the Dana Farber Cancer Institute are working to break down these barriers and give black women a seat at the breast cancer research table. According to the MBC Project website, it is a nationwide movement of patients, doctors, and scientists seeking to recruit women with metastatic breast cancer and, with their permission, access their tissue samples from the hospitals that care for them. The goal is to use those samples to transform their understanding of metastatic breast cancer to aid in the development of future therapies.

“We initially knew that we would probably skew young and White just based on who we had reach to in social media,” said Dr. Corrie Painter, associate director of operations and scientific outreach for the MBC Project.

But when they realized that less than three percent of their participants were from Black women – even though Black women are estimated to account for more than 20 percent of metastatic breast cancer cases in the United States under the age of 50 –  they knew they had to actively work to engage Black women in their research. Dr. Painter knew that her team needed to learn about the barriers to participate in research and address them in their study.

Far too often, Black women are underrepresented in clinical trials and medical research, including research that has led to new treatments. This fact contributes to higher rates of death and poorer outcomes in Black women with breast cancer. In one major study showing the efficacy of using a drug called Herceptin after surgery and chemotherapy in women with HER2-positive breast cancer, of 3,387 women only 20 were Black women—that is less than one percent of the study participants.

Factors That Contribute to Blacks Not Participating In Trials

The MBC Project is determined not to contribute to this problem in breast cancer research. They aim to engage Black women in the hopes of finding new treatments. The MBC project is interested in more than just their samples, they are interested in hearing their voices. To lead this effort, they enlisted Shawn Johnson, a researcher at Dana Farber Cancer Institute and now first-year student at Harvard Medical School.

When Johnson joined the project, he was keen on diving deeper into the barriers to participation in medical research. He began by inviting five Black women that are metastatic breast cancer advocates to the Broad Institute to begin a dialogue.

He wanted to address the well-documented history of abuse of Black bodies in medical research. Whether it was the Tuskegee syphilis study or gynecologic surgeries practiced on Black women without anesthesia by the man known as the father of gynecology, James Marion Sims, the history of abuse and lack of faith in medical researchers’ motives has been passed down from generation to generation in Black families.

“If you told people the history of this abuse and exploitation, would this be liberating and build trust between the people that are asking them to participate and themselves?” Johnson asked. He found that it did just that.

A study by the Komen Tissue Bank on the perspectives of African-American women in donating healthy breast tissue also found…