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Most Latinas Want Relatives to be Informed of Genetic Cancer Risk

July 23, 2009

Written By Mary Alice Hartsock
Reviewed By Beth Souders, MS, CGC

Most Latinas believe their relatives should be informed of genetic cancer risk but prefer a healthcare professional deliver the information, results of a recent study indicate.

The study, which appeared in the Journal of Health Communication, compared attitudes about sharing genetic information among non-Latina white women and Latinas who had a personal or family history of breast cancer. The researchers found that while most women want their families to be aware of their risk, Latina ethnicity, primary language and education level impact the way the women want to communicate the results.

Study Background

About five to ten percent of all breast and ovarian cancers come from having changes (or mutations) in two specific genes, BRCA1 and BRCA2. Women who carry a mutation in BRCA1 or BRCA2 have a 60 percent to 80 percent lifetime risk of developing breast cancer.

Among Latinas, 30 percent of diagnosed cancers are breast cancers, making it the most common cancer diagnosis. Latinas also are more likely to be diagnosed with ovarian cancer than non-Latina whites. Many Latinas who have a personal or family history of these cancers are referred to genetic counselors.

Genetic counselors help people understand known risk factors for cancer. They assess a person’s risk based on family history, medical history and lifestyle factors. Throughout the evaluation, genetic counselors provide education and support so that people can make informed decisions about genetic testing. They help outline a plan for testing for early detection and risk reduction.

If you have questions about your risk for cancer based on your personal or family history, a genetic counselor can help interpret your family and personal health histories and discuss the risks, benefits, and limitations of undergoing genetic testing. Your genetic counselor may ask if someone in your family has had a breast cancer diagnosis at age 45 or younger; if you have multiple family members affected by breast cancer on the same side of the family; if any family members have been diagnosed with ovarian, pancreatic or male breast cancer; and if members of your family are of Ashkenazi (Eastern European) descent. The genetic counselor also discusses how the test results could impact your follow-up care, including surveillance, prevention options or health and lifestyle alterations.

If you test positive for an inherited genetic mutation, there is a 50 percent chance that your siblings and children also carry the mutation and could be at risk for developing breast, ovarian or other types of cancer. Sharing the news with your family members can help and encourage them to take positive steps to reduce their risk. The researchers in this study wanted to learn more about how Latinas felt about informing relatives of genetic cancer risk.

Study Design and Results

Researchers gathered data from 183 Latinas and 292 non-Latina white women with a personal or family history of breast cancer. The data had been gathered in a previous study. They found that 92 percent of all women in the study believed their relatives should be informed of genetic cancer risk. Among these women, 88 percent believed that informing relatives was their personal duty, and 60 percent believed that the news should only be shared in person.

The researchers found that women of Latina ethnicity, women who spoke Spanish as a primary language and women with less education tended to prefer that clinicians share the news with their family members.

What Does This Study Mean for Me?

The decision to undergo genetic testing for a personal or family history of cancer is an individual choice, and even if you undergo a cancer risk evaluation with a genetic counselor, you do not have to take the test. If you make an informed decision to pursue genetic testing, genetic counselors can help communicate the results to family members.

Your counselor may be willing to meet together with you and your family or can help you think about ways you can talk about testing with your loved ones.

DJ MacDonald, et al. Comparison of Latina and non-Latina white women’s beliefs about communicating genetic cancer risk to relatives. J Health Commun. 2008 Jul-Aug; 13(5): 465-79.

For more information, read our article on genetic counseling and testing in the summer 2009 issue of Insight.

Read more about Latina’s beliefs about communicating genetic cancer risk to family members.