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Angelina Jolie’s experience undergoing preventive surgeries for breast and ovarian cancer after learning about her genetic predisposition may have spiked American’s awareness of cancer and genetics, but a new survey finds that additional engagement is sorely needed among patients, their families, and their clinicians.

The Genetic Risk Awareness Survey, conducted by Invitae in June 2015 among 1,000 Americans found that 73% of Americans are aware of genetic testing for hereditary cancers, a dramatic increase from less than 50% in 2010.

Although the “Angelina Jolie Effect,” has increased awareness of genetic testing, the study found that there is still confusion when it comes to how cancer is inherited. Americans also lack knowledge of their family healthy history and they have a strong desire for clinical guidance when pursuing genetic testing, according to the survey.

In fact, 80% of survey respondents said they would want their personal physician or a genetic counselor to provide access to genetic testing and advice on the results.

When queried if they are aware of news reports regarding Angelina Jolie’s decision to undergo surgery for cancer prevention, 76% of Americans surveyed said they were aware of her story and 47% respondents knew that her surgery was for breast cancer. Only 5% were aware that her surgery was for ovarian cancer.

Knowledge of BRCA1 and BRCA2 Genetic Mutations?

On the topic of familiarity with the BRCA1 and BRCA2 genetic mutations, which are linked to an increased risk of breast and ovarian cancer, only 32% of those surveyed said they were familiar with the BRCA genetic mutations that influenced Jolie’s decisions.

What’s more, some 47% of respondents are aware that these genetic mutations increase the risk of breast cancer, while only 3% said it indicates increased risk for ovarian cancer.

The majority of respondents, 64% are somewhat familiar with the use of genetic testing to identify a person’s increased risk of hereditary cancer, while only 9% are familiar, and 27% are not aware of genetic testing to identify risk at all.

Some 69% of respondents believe that a test that provides information on the risk of hereditary diseases would be helpful, 26% aren’t sure if a test would help them, and 5% said a test wouldn’t be helpful.

What steps have respondents taken based on their understanding of their risk of cancer or another disease? Lifestyle modifications were mentioned by 61% of respondents, 58% said they discussed the risk with healthcare providers, 56% reported they had medical testing and monitoring, 8% said they had an elective medical procedure, and 5% indicated they took other steps. 

The study also found the following:

• 43% of those surveyed said they did not know which hereditary diseases run in their family.
• Just 21% said they had a very accurate understanding of their family history.
• Almost half (48%) of those surveyed said they thought the combination of family history and genetic testing would be the most useful way to gauge hereditary cancer risk.

Ora Gordon, M.D., director of the Hereditary Cancer Prevention Program at the Disney Family Cancer Center of Providence St. Joseph Medical Center said, “We all know the importance of understanding and documenting our family history of disease, but for many people it’s a challenge. Tracking your family history and talking with your clinician about whether genetic testing is appropriate for you are important steps in assessing your risk of hereditary cancer.”

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