Breaking Down Language Barriers to Genetic Counseling and Testing

By Kim Polacek, APR, CPRC - October 23, 2020

Did you know that Hispanic/Latina women are 30% less likely to be diagnosed with breast cancer compared to non-Hispanic white women? Unfortunately, they are more likely to be diagnosed at a younger age and with a more aggressive disease.

What is genetic testing?

Genetic testing looks for changes, or mutations, in your genes that can increase your risk for cancer. Inherited mutations account for 5% to 10% of all cancers.

Genetic factors, such as BRCA1 and BRCA2 mutations, may play a role in the disparities among this population. However, genetic counseling and testing are not widely used among breast cancer survivors. In fact, roughly 15% of eligible breast cancer survivors have undergone genetic testing. And for Spanish-speaking Hispanic/Latina women, there are additional barriers. Approximately 6% of genetic counselors in the United States provide genetic counseling in Spanish.

“Language can be an important barrier for Hispanic/Latina patients in the U.S. It includes everything from speaking with a physician or health care worker to sharing important information about risk with family members,” said Dr. Susan Vadaparampil, a health disparities researcher and associate center director of Community Outreach, Engagement and Equity at Moffitt Cancer Center. “While many health care institutions, like Moffitt, have qualified interpreters available, that is not the case in smaller communities.”

portrait of blockquote author

"Language can be an important barrier for Hispanic/Latina patients in the U.S. It includes everything from speaking with a physician or health care worker to sharing important information about risk with family members."

- Dr. Susan Vadaparampil, Associate Center Director, Community Outreach, Engagement & Equity

To help address this issue, Vadaparampil and a group of researchers at Moffitt and Ponce Health Sciences University in Puerto Rico created an educational booklet to inform Spanish-speaking breast cancer survivors about hereditary cancer risk, genetic counseling and genetic testing.

“We wanted to create something that was informative, but more importantly have cultural and linguistical relevance,” said Vadaparampil.

The booklet highlights the importance of genetic counseling and testing for Spanish-speaking breast cancer survivors and their families, hereditary breast and ovarian cancer risk factors, and available genetic counseling and testing services.

image from Latina genetic counseling booklet
Excerpt from genetic counseling booklet

To determine if the booklet helped encourage Spanish-speaking breast cancer survivors to seek out genetic counseling and testing, the research team launched a small study. Fifty-two Hispanic/Latina women — 26 at Moffitt and 26 at Ponce — participated. Some women received the booklet, while others received a one-page fact sheet in Spanish that had nine questions to ask a health care professional regarding breast cancer survivorship, such as how often should I have follow-up appointments and should I continue to receive annual mammograms.

The results showed that 65% of women who received the booklet completed genetic counseling, but not all those women chose to receive genetic testing. For those receiving the fact sheet, only 15% completed both genetic counseling and testing.

“While our study did show that the booklet encouraged more breast cancer survivors to learn about their genetic risk factors, it is important to note that access could still be a barrier to patients seeking genetic counseling and testing,” said Vadaparampil.

Study participants received access to free genetic counseling in Spanish and testing. The service may not be available in all communities and, in some cases, is not covered by insurance. This study highlights that developing a test to identify risk is the first step. To have the greatest benefit for the most people, the cultural and social context of patients need to be considered.

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Kim Polacek, APR, CPRC Senior PR Account Coordinator More Articles

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