Research Study Looks at Cultural Values and Genetic Testing in African-American Women

By Tai Danielle Parks, LBBC Staff; Reviewed by Chanita Hughes Halbert, Ph.D

With Our Voices research study examines the impact of cultural values on decisions about genetic testing among African-American women

Sponsored By: University of Pennsylvania

A new research program at the University of Pennsylvania seeks to create a culturally sensitive genetic counseling program for African-American women with a personal or family history of breast cancer.

Led by Chanita Hughes-Halbert, PhD, associate professor in the department of psychiatry, the With Our Voices research program is an important first step in evaluating the impact of cultural values on decisions about genetic testing, quality of life and health-related behaviors among African-American women.

Background of the Study

A significant number of African-American women are diagnosed with breast cancer each year. Compared to women from other racial and ethnic backgrounds, African-American women experience higher rates of death and complications from breast cancer. Researchers believe screening practices and tumor characteristics may account for the disparity.

BRCA1 and BRCA2 are two genes that help maintain normal cell growth and regulation. Women who have a genetic mutation in one of these genes have a higher chance of developing breast or ovarian cancer than the average woman. Recent studies in African-American women who have a personal and family history of breast or ovarian cancer have shown that the prevalence of BRCA1 and BRCA2 mutations range between 12 percent and 21 percent.

Genetic counseling would be useful for increasing knowledge about breast cancer risk factors and providing information about options for prevention and control; however, studies have shown that African-American women are significantly less likely to participate in research programs that involve genetic testing and counseling.

Goals of the Study

The purpose of this research program is to develop and evaluate a culturally tailored genetic counseling program for African-American women who have a personal and family history that is suggestive of hereditary breast cancer. The researchers believe that the creation of this counseling program will increase the ability of genetic counselors to provide culturally sensitive genetic risk assessment to African-American women.

Study Design

This study was designed to give genetic counselors the ability to provide culturally sensitive genetic risk assessment by integrating cultural beliefs and values into the education and counseling process.

Women who are interested in participating in genetic counseling are asked to complete an interview. After the interview, the women are invited to participate in genetic counseling. Women may either accept or decline, but the researchers hope women who accept will learn more about their genetic counseling needs.

The education and counseling portion of the study involves one or two meetings with a genetic counselor to discuss family history, risk assessment and options for genetic testing. A third session is included for women who have genetic testing to receive their results.

All women receive follow-up interviews at one, six and 12-months after completion of their education and counseling sessions or after the first interview for those women who decline the education session.

Who May Participate

The researchers are in the last stages recruitment for this study. To obtain more information about participating, women should contact Aliya Collier at 215-746-7168. All women, regardless of racial or ethnic background, who have a BRCA1 or BRCA2 mutation are at increased risk for developing breast and ovarian cancer. If you are at risk, you can discuss surveillance and preventive options to greatly reduce the chances of developing breast and ovarian cancer.

If you are an African-American woman, it is important to have any questions you have regarding genetic counseling answered. It is essential to talk to your healthcare provider about your needs and concerns. Knowing your genetic status may help you think about your options for lowering your risk for cancer. Genetic counselors can be found across the country at the website of the National Society of Genetic Counselors at http://www.nsgc.org.

For more information, contact: Aliya Collier, 215.746.7168

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