By Lori Solomon, Editor, Diagnostic Testing & Emerging Technologies
A new survey shows 73 percent of Americans are aware of genetic testing for hereditary cancers—a significant increase over just a few years ago that is largely attributed to the "Angelina Jolie Effect." However, the survey also found that many lack knowledge of their own family health history and there is a strong desire for guidance when considering genetic testing. As a result, genetic testing company Invitae (San Francisco), which sponsored the survey, 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.
The Genetic Risk Awareness Study was conducted online in June 2015 and randomly sampled more than 1,000 U.S. adults. The company says the survey reflects the general population and respondents were not selected for clinical indication or referral into the health care system.
Despite 76 percent acknowledging awareness of news reports of Angelina Jolie’s decision to undergo surgery for cancer prevention, only 32 percent say they are familiar with BRCA 1/2 gene mutations (although roughly 45 percent answer that they think the mutation is tied to breast cancer or both breast and ovarian cancer).
Nearly two-thirds (64 percent) report being "somewhat familiar" with the use of genetic testing to identify a person’s increased risk of hereditary cancer and 69 percent say a test that provides information on risk of hereditary diseases (cancer or cardiovascular disease) would be "helpful."
Interestingly, more than half (55 percent) want their own personal physician to provide genetic testing and advice on results, whereas others say that a genetic counselor (25 percent), a specialist (3 percent), or direct-to-consumer (14 percent) are the more appropriate providers of genetic testing and related advice.
As far as the actionability of genetic test results, 16 percent report they would take no action based on genetic test results, but the majority say they would take some kind of action: lifestyle changes (29 percent), more careful medical monitoring (28 percent), risk-reduction procedures (15 percent), and medication to reduce risk (9 percent).
While intuitively most are aware of the importance of documenting their family history of disease, many people find it a challenge to identify familial patterns and discuss these potential risks with physicians. The survey found that 48 percent of respondents knew that both family history and genetic testing are both needed to accurately predict hereditary cancer risk. Invitae says that 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.
"By launching this campaign, we are putting into practice our core principles: patients should own and control their genetic information, health care 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, in a statement.