-- New survey shows that while celebrity stories drive awareness of
cancer and genetics, more engagement is needed among patients, their
families and their clinicians --
SAN FRANCISCO--(BUSINESS WIRE)--
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.”
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.
About Invitae
Invitae’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.
For more information, visit our website at invitae.com and follow us on
Twitter: @invitae.
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.
View source version on businesswire.com: http://www.businesswire.com/news/home/20150921005308/en/
Source: Invitae Corporation