Sep 21 2015
A new survey released today shows 73 percent of Americans are aware of genetic testing for hereditary cancers – a significant increase over just a few years ago. Previous research found that in 2010 less than half of the Americans surveyed said they were aware of genetic testing. Dubbed the "Angelina Jolie Effect," the current data highlight the far-reaching impact of Angelina Jolie's public discussion of genetic testing for hereditary cancer.
However, despite this heightened awareness of genetic testing, there remains confusion about how cancer is inherited, a lack of knowledge of family health history, and a strong desire for clinical guidance when pursuing genetic testing. Indeed, the vast majority of those surveyed (80%) said they would want their personal physician or a genetic counselor to provide access to genetic testing and advise on the results.
The Genetic Risk Awareness Study surveyed more than 1,000 Americans and was commissioned by Invitae, a genetic information company. In response to the findings, the company is launching a new program, Your Genes. Your Voice. Your Choice., to encourage people to talk to their clinicians about their risks for hereditary cancer.
"Many think of genetic testing as a relatively new frontier in medicine, but these survey results show that Americans are now aware of its potential and see it as a useful tool for understanding their genetic risk of disease," said Ora Gordon, MD, MS, Director of the Hereditary Cancer Prevention Program at the Disney Family Cancer Center of Providence St. Joseph Medical Center and Professor of Genetics at UCLA. "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."
Stories drive awareness, spark decisions
In 2013 and 2015, American actress Angelina Jolie publicly described her experience undergoing preventive surgeries for breast and ovarian cancer after learning about her genetic predisposition to these diseases. The Genetic Risk Awareness Study found that 76% of Americans surveyed were aware of her story. Yet just 32% of those surveyed said they were familiar with the BRCA genetic mutations that influenced her decisions. The BRCA1 and BRCA2 mutations are linked to a significantly increased risk of breast and ovarian cancer, and the presence of those mutations may prompt patients to work with their clinicians to help manage their risk of developing diseases.
Invitae is encouraging people to share stories on Facebook, describing the real-world experience of navigating, understanding, and managing hereditary cancer risk, along with organizations within the hereditary cancer community, including CanCan, Chris4Life, Colon Cancer Alliance, Facing Our Risk of Cancer Empowered (FORCE), and Ovarian Cancer National Alliance (OCNA). Information is available at YourGenesYourChoice.com and at Invitae's Facebook page.
"Sadly, many women in my family have experienced breast cancer, and we all discussed the topic very openly, particularly after my mom was diagnosed," said Amanda Burris, 24, of San Antonio, Texas, who had genetic testing in response to an increased risk of breast cancer based on family history. "Knowing my risks now when I'm still in my twenties means I can carefully monitor my health and make educated and proactive decisions when they're needed."
Family history remains unclear for many
An important goal of the Your Genes. Your Voice. Your Choice. campaign is to provide access to resources and practical online tools that support people as they compile a detailed family history. For years, health experts have emphasized the importance of understanding your family history of disease, but the Genetic Risk Awareness Study shows many Americans are still struggling with the topic.
- 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.
Affordable BRCA and multi-gene panel testing now available
Invitae recently made its full menu of genetic tests available at $475 per indication, making testing accessible to patients who do not meet coverage policies for testing, have high-deductible plans, or whose tests are not covered by insurance. It is exclusively for patients whose clinicians have ordered the testing online, who register online, and pay up front for genetic services themselves.
Although genetic testing rates in the survey were somewhat low (just 15% of those surveyed indicated they've had genetic testing), awareness and openness to the relatively new tests were very high.
- 69% of respondents said they would consider a test that provides information on hereditary risk of disease to be helpful.
- 84% said they would take some kind of action based on understanding their genetic risk of disease.
"By launching this campaign, we are putting into practice our core principles: patients should own and control their genetic information, healthcare professionals are fundamental in ordering and interpreting genetic information, driving down the cost of genetic information will increase its personal and clinical utility, and genetic information is more valuable when shared," said Randy Scott, chairman and CEO of Invitae. "One of our goals is to make genetic testing more affordable and accessible to billions of people and in doing so, we're able to remove cost barriers and deliver savings for patients and the healthcare system."
SOURCE Invitae Corporation
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