Breast Cancer Genetics Study in Special Populations Funded

March 26, 2002

Thanks to a grant from the Susan G. Komen Breast Cancer Foundation, Redes En Acción will take the lead on a ground-breaking new project aimed at researching, designing and disseminating customized breast cancer genetic educational materials to five special populations in the United States.

The Breast Cancer Genetics Education Materials and Programs Development Project will involve the National Cancer Institute's Special Populations Networks (SPNs) and the NCI's Cancer Genetics Network (CGN). Baylor College of Medicine is coordinating Phase 1 under the direction of Amelie G. Ramirez, DrPH, Principal Investigator, and Kipling Gallion, Co-PI.

The primary objective of Phase 1, which is funded by the Komen Foundation, will be development of a culturally sensitive survey instrument to assess knowledge, attitudes and behaviors regarding breast cancer genetics among African Americans, Appalachians, Asian Americans and Pacific Islanders, Latinos and Native Americans.

"This is truly a unique opportunity," said Dr. Ramirez. "Unfortunately, the scientific literature on issues regarding breast cancer genetics and any of the five special populations involved is extremely sparse. So for the first time, these diverse populations will collaborate to study cancer genetic issues that researchers know very little about."

By initiating a cooperative research effort among the five SPNs and with the CGN and Komen Foundation, this project will break new ground. Collaboration among such ethnically and racially diverse populations on the development of a comparable, standardized survey instrument is unique to this study. In addition, the organizations all share a common interest in reaching underserved populations, so the relationships forged through this study will provide valuable links for current and future minority research efforts.

As a prominent and widely recognized breast cancer resource, the Komen Foundation has a particular interest in the progress of this study, said Dena L. Jackson, PhD, CHES, Grants Specialist for the Foundation.

"The Susan G. Komen Breast Cancer Foundation is a trusted source of breast health and breast cancer information for people all over the world and is instrumental in connecting people with the resources they need in the fight against breast cancer," she noted.

"Research has shown us that using targeted educational materials increases their impact on individuals, making them more likely to enact life-saving behaviors. The Komen Foundation is proud to be a part of extending culturally sensitive information on breast cancer genetics to these special populations."

Working together in Phase 1 to design and develop the survey instrument will be representatives from the national SPN initiatives, genetic education experts, genetic counselors, an epidemiologist and a representative from the NCI office for the CGN. This collaboration will ensure that the result is a research tool that is culturally appropriate to each of the special populations and that accurately reflects the most relevant issues related to breast cancer genetics in these populations.

"This study hopes to fill the gap that currently exists in breast cancer genetics research," said Dr. Ramirez. "Since most studies to date have involved Caucasian women with education levels beyond high school, existing data may not be applicable to more ethnically and socioeconomically diverse samples.

"This study hopes to bring to the forefront the issues regarding breast cancer genetics that are relevant and important to each of these five special groups, and to use this knowledge to develop badly needed culturally sensitive breast cancer genetics education materials and programs."

Phase 2 of the project will see the administration of the survey by each of the five SPNs within their populations, and the data collected will be analyzed and reported. During Phase 3, information gathered from the survey will be used to develop culturally appropriate education and intervention materials and programs tailored to each of the populations. Upon completion of Phase 1, investigators will pursue funding for Phases 2 and 3.

What Is Redes En Acción? Redes En Acción is a major NCI-supported initiative to combat cancer among Latinos through a nationwide network of community-based organizations, research institutions, government health agencies and the public. Core activities include promoting cancer training and research opportunities for Latino students and researchers, generating research projects on key Latino cancer issues, and supporting cancer awareness activities within the Latino community.

The initiative is coordinated by the Baylor College of Medicine in Houston and San Antonio, with regional network centers in San Antonio, New York, Miami, Chicago, San Francisco and San Diego.