New survey shows that while celebrity stories drive awareness of cancer and genetics, more engagement is needed among patients, their families and their clinicians
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.
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.
“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.”
The Genetic Risk Awareness Study was conducted in June 2015. The survey was conducted online via a random sample of more than 1,000 men and women aged 18+. The panel closely matches U.S. population demographics, and it is the first study to look at genetic testing in a random sample of the general population, and therefore not selected for clinical indication or referral into the healthcare system. The overall sampling error rate for this survey is +/-3% at the 95% rate of confidence. The full survey results are available at www.YourGenesYourChoice.com.
Invitae Corporation's (NYSE: NVTA) mission is to bring comprehensive genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. Invitae’s goal is to aggregate most of the world’s genetic tests into a single service with higher quality, faster turnaround time, and lower price than many single-gene tests today. The company currently provides a single diagnostic service comprising more than 200 genes for a variety of genetic disorders associated with oncology, cardiology, neurology, pediatrics, hematology, and other disease areas.
Safe Harbor Statements
This press release contains forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995, including statements relating to the company’s belief that driving down the cost of genetic information will increase its clinical utility; the benefits of genetic testing; that the company’s current pricing and billing policies make the company’s products and services more available to patients; that the company is or will be able to remove cost barriers and deliver savings for patients and the healthcare system; that the company can realize its goals, including making genetic testing more affordable and accessible to billions of people; as well as the benefits of the company’s business model; and the ability of comprehensive genetic information to significantly improve care and outcomes for people around the world. Forward-looking statements are subject to risks and uncertainties that could cause actual results to differ materially, and reported results should not be considered as an indication of future performance. These risks and uncertainties include, but are not limited to: the ability of clinical trial results to affect treatment decisions; the company’s history of losses; the company’s need to scale its infrastructure in advance of demand for its tests and to increase demand for its tests; the company’s ability to generate substantial demand for its tests; the company’s ability to develop and commercialize new tests and expand into new markets; the risk that the company may not obtain or maintain sufficient levels of reimbursement for its tests; risks associated with the company’s ability to use rapidly changing genetic data to interpret test results accurately and consistently; the company’s ability to compete; laws and regulations applicable to the company’s business, including potential regulation by the Food and Drug Administration; and the other risks set forth in the company’s filings with the Securities and Exchange Commission, including the risks set forth in the company’s Quarterly Report on Form 10-Q for the quarter ended June 30, 2015. These forward-looking statements speak only as of the date hereof, and Invitae Corporation disclaims any obligation to update these forward-looking statements.