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. 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.
For those of you who missed it, in 2013 and 2015, 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.
Genetic testing can be used in different situations. The type of testing most often used to check for cancer risk is called predictive gene testing. It’s used to look for gene mutations that might put a person at risk of getting a disease. It’s usually done in families with a history that suggests there’s a disease that may be inherited. An example is testing for changes in the BRCA1 and BRCA2 genes (known breast cancer genes) in a woman whose mother and sister had breast cancer. 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.
What are the cancer risks of someone detected with a BRCA1 or BRCA2 mutation? A woman with a BRCA mutation has a 50-85% lifetime chance of having breast cancer and a 27-44% chance of getting ovarian cancer. If she has already been diagnosed with breast cancer, she has a 40-60% chance of getting cancer in the other breast.
Genetic testing is also used for other reasons:
- Carrier testing can be used to help couples learn if they carry a gene mutation for a disorder they might pass on to a child, such as cystic fibrosis, sickle-cell anemia, or Tay-Sachs disease.
- Prenatal screening can be used to diagnose some conditions in babies before they are even born, such as Down syndrome.
- Newborn screening is the most widespread form of genetic testing. Newborns are screened for a number of inherited conditions such as phenylketonuria (PKU), cystic fibrosis, sickle cell disease, and others.
Who should have genetic testing?
According to the American Cancer Society (ACS), genetic testing is a good idea if you are concerned about your family’s pattern of disease, cancer you’ve had in the past, or other cancer risk factors.
Doctors will sometimes suggest patients have genetic testing if others in their family have had a certain disease or certain patterns of disease. If you have any of the following, you might consider genetic testing for yourself:
- Several first-degree relatives (mother, father, sisters, brothers, children) with cancer, especially if they’ve had the same type of cancer
- Cancers in your family that are sometimes linked to a single gene mutation (for instance, breast, ovarian, and pancreatic cancer).
- Family members who had cancer at a younger age than normal for that type of cancer
- Close relatives with rare cancers that are linked to inherited cancer syndromes
- A physical finding that is linked to an inherited cancer (such as having many colon polyps)
- A known genetic mutation in one or more family members who have already had genetic testing
The ACS points out that it’s important to find out how useful testing may be for you before you do it and recommends meeting with a genetic counselor before the actual test can help you know what to expect. The counselor can tell you about the pros and cons of the test, what the results might mean, and what your options would be at that point.
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.”
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.
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.
In a similar approach, MD Anderson’s Making Cancer History® for the Family initiative incorporates a genetic testing and risk-management approach. It offers high-risk surveillance and prevention strategies to family members of patients who test positive for a BRCA mutation. The Research, Education and Awareness of Cancer family History (REACH) program is part of this moon shot initiative. Genetic counselors and REACH personnel work with patients and their family members to promote genetic testing and to educate them on the types of cancers of which they are most at risk. They also help increase awareness of the steps one can take to prevent hereditary breast and ovarian cancers, such as preventive mastectomy or removal of the ovaries.
Since its launch in September 2012, this moon shot has coordinated the genetic testing of approximately 2,000 TNBC and HGSOC patients. Genetic counselors who work with specialists at MD Anderson’s main campus or at other Houston-area locations facilitate the tests.
This moon shot has also launched clinical trials for newly diagnosed patients with BRCA mutation-associated cancers and for those with cancer recurrences. The poly ADP-ribose polymerase (PARP) inhibitor clinical trial, for example, targets tumors with defects arising from changed BRCA 1/2 gene functions.
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