Black Women Needed for Breast Cancer Study

Washington Afro American, News Feature, Alafaka Opuiyo, Posted: Aug 16, 2007

Editor's note: Lack of trust in the American medical system still negatively affects the number of African-American women participants in medical studies.

Millions of women are diagnosed with breast cancer annually, especially black women. The National Institute of Environmental Health Sciences (NIEHS) is conducting the country's largest study that looks at genetics and environment to assess the risk of breast cancer called the Sister Study. Women who have sisters with breast cancer are used for the study.

Since the study started in October 2004, it has recruited over 38,000 women, but only 5 percent of them are black women. In Washington, D.C., only 35 black women have signed up to participate in the study.

"Recruitment of African-American women has been slow but steady," Carrissa Dixon, Sister Study's recruitment coordinator said. "I think fear and a lack of trust [prevent] black women from participating."

Dixon is responsible for disseminating information about the study to black women. She said that most breast cancer research is conducted with white women, and that it is important for black women to participate in these studies so they are represented in the findings.

Churches, black hair salons and black hair shows are some of the venues Dixon has used to sign women up for the study.

"There is a need for black women to participate in the Sister Study — the nation's largest study that examines genetics and environment to assess the risk of breast cancer. Currently, only five percent of the participants are black women."

"I would like to see the 'gatekeepers of the black community' take a leadership role in helping black women understand the importance of this issue," Dixon said. "We need to let researchers know we care about our health."

She said that minorities groups are often called "hard to reach populations." "Sometimes it is the message and the messenger that creates the barrier," Dixon added.

According to Paula Juras, MD, NIEHS specialist and the project officer for the Sister Study, it is too early to determine any patterns among the black women who are participating in the study. There is strong evidence to support that black women under the age of 45 are being diagnosed with breast cancer more then their white counterparts, Juras said

NIEHS hopes to enroll 50,000 women by the end of the year. Women in the United States and Puerto Rico ages 35-74 who have not been diagnosed with breast cancer are eligible to participate in the study.

The study consists of participants answering questions about their jobs, hobbies, diet and things they have been exposed to that might influence their risk of getting breast cancer. Then, a health technician collects samples of urine, blood, toenail clippings and house dust. This will give researchers a better image of the woman's environment and genes.

Col. (Ret.) Doris Brown, MD, MPH, program director at the National Cancer Institute and a participant in the study, said each participant's information is kept confidential and will not be shared with an external agency.

The study will last for 10 years. According to Juras, once the data is compiled and analyzed, it will be shared with various health organizations and government agencies.

For more information about the study, visit www.sisterstudy.org.