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Genetic Testing for Latina Breast Cancer Risk

Grant: Part of NCI Grant No. P20 CA138021-01
2008-12

Summary
As part of a larger federal study (Feasibility Studies for Collaborative Interaction for Minority Institutions/Cancer Centers), IHPR researchers Drs. Amelie Ramirez and Patricia Chalela are conducting a study on genetic testing for breast cancer on understanding the decision-making process among Latinas. Genetic testing for breast cancer may facilitate better-informed decisions regarding cancer prevention, risk reduction, more effective early detection, and better determination of risk for family members. Despite these potential benefits, significant portions of the population—particularly Latinas—lack awareness of genetic testing for breast cancer susceptibility. Latinas comprise less than 4% of women undergoing BRCA genetic testing. To uncover reasons for Latinas’ low testing participation, this study explores the awareness, attitudes, and behavioral intentions to undergo genetic testing among average-risk Latinas along the Texas-Mexico border. This project is using qualitative techniques to assess decision-making among Latinas regarding: 1) knowledge, attitudes, and behaviors related to breast cancer genetic testing; 2) behavioral intentions to undergo genetic testing; 3) relationship between proportional (numeric) understanding of the risk and attitudes towards genetic testing; and 4) perceptions of self- and collective efficacy to face the challenges posed by having a genetic predisposition to breast cancer and its relationship with intentions to undergo testing. Participatory techniques are being used to develop and adjust research instruments, assuring appropriate community input and inclusion of all aspects that may be relevant to the community. Investigators will conduct eight focus groups to evaluate current knowledge and behavior, understanding of numeric risk proportionality, as well as attitudes and outcome and self- and collective efficacy expectations related to genetic risk and genetic testing. Key aspects of study are: 1) Latinas’ understanding of the balance between genetic, environmental, and behavioral determinants of disease and genetic risk variability; 2) relationship between their capacity to understand numerical concepts  and basic statistics (numeracy) and their comprehension of breast cancer genetic risk; 3) their expectations about the potential consequences of genetic risk and genetic testing; 4) potential action motivators for testing, counseling, risk prevention, reduction, and treatment; 5) their perceived self- and collective efficacy to use genetic information to gain control of their own health and avoid stigmatization; and 6) ethical issues about safeguarding information about their genetic risks. Using the extensive information collected, this project will develop and pre-test a survey instrument to assess factors associated with breast cancer genetic testing, and prepare and submit a proposal for larger-scale assessments and interventions in Latino cancer genetics and testing readiness. Researchers at The University of Texas Health Science Center at San Antonio, who have ample experience in qualitative research, will lead the study in collaboration with researchers at The University of Texas-Pan American, who will actively participate and become proficient in the use of qualitative techniques.

Principal Investigator:
Dr. Amelie G. Ramirez, IHPR at The UT Health Science Center

Co-Investigators:
Patricia Chalela, IHPR at The UT Health Science Center
Peter Ravdin, Cancer Therapy and Research Center (CTRC) at The UT Health Science Center
Anand Karnad, CTRC at The UT Health Science Center

Collaborators
IHPR at The UT Health Science Center
CTRC at The UT Health Science Center
Sue Naylor, IHPR at The UT Health Science Center

Publications:
In development