High-Risk Hispanics Interested in Genetic Testing for Breast Cancer

WASHINGTON—A survey of 110 Hispanic women at elevated risk for breast and/or ovarian cancer revealed a high degree of interest in genetic testing but a low level of knowledge about their own objective risk of getting these cancers, Martha P. Martinez, PsyD, said at the American Psychological Association Conference on Enhancing Outcomes in Women’s Health. Dr. Martinez is a voluntary instructor of medicine at the University of Miami School of Medicine.

Almost all of the subjects (93%) said they were interested in being tested, and 62% wanted to be tested right away, preferably within the next month. The subjects believed that knowing whether they carried the BRCA1 or BRCA2 mutation would reduce their sense of uncertainty about their future, increase their sense of personal control, and help them make important life decisions.

They saw more advantages than disadvantages to testing, Dr. Martinez said. The majority endorsed only 2 of the 11 survey items about perceived disadvantages, ie, that knowing that they carried any of these genes would cause them to worry more about female relatives who might also be carriers and increase their concerns about developing breast/ovarian cancer.

The majority of the women surveyed believed that "knowledge of BRCA1/2 carrier status would motivate them to take a more proactive health stance," she said. For example, most respondents reported that knowing that they carried BRCA1/2 mutations would motivate them to perform breast self-examination more frequently and help them decide whether to go for mammograms more frequently or undergo preventive surgery.

Thus, knowledge of BRCA1/2 carrier status might lead to important changes in health-related behaviors and adherence to screening practices in high-risk Hispanic women.

"This is extremely important in the case of Hispanics in the United States, since this group has been found to have poor cancer screening practices and to present with breast and cervical cancers at more advanced stages of diagnosis (and at younger ages) than individuals in the majority culture," Dr. Martinez said.

Based on family information that the women provided, the researchers calculated their objective or statistical risk of developing breast and/or ovarian cancer. Asked for their own estimates of their lifetime cancer risk, 77% overestimated it as compared to the calculation.

The high interest in getting tested among these women may be accounted for by "an exaggerated sense of vulnerability to breast/ovarian cancer, limited knowledge about the predictive value of BRCA1/2 genetic tests, and unrealistic expectations regarding preventive measures and therapeutic options," Dr. Martinez commented.

Inaccurate Information

The majority of the women were Cuban-Americans with mostly low incomes and low levels of education; 41% had less than a high school diploma. Offered a choice of languages in which to take the survey, 80% chose Spanish. "Most services are not offered in language women can understand or relate to," she said. Nonetheless, all had heard about genetic testing on TV, she noted, although what they had learned was often not accurate.

Recruited through a clinic, the majority of the women lacked health insurance that would cover genetic testing. The question, therefore, was theoretical because no opportunity for genetic testing was offered as part of the study. Were testing available, Dr. Martinez suspects that the numbers of those actually wanting to do it would drop once the women underwent genetic counseling.