Genetic Counseling For People Who Do Not Have Breast Cancer
This page has information on genetic counseling and weighing the benefits and risks of genetic testing for people who do not have breast cancer.
Genetic counseling and genetic testing to learn about breast cancer risk
If you’re considering genetic testing to learn whether a family history of breast cancer is due to an inherited gene mutation, it’s strongly recommended you speak with a genetic counselor (or other health care provider trained in genetic counseling).
A genetic counselor can help you determine whether genetic testing would give you useful information about you and your family’s risk of breast and other cancers. Only people who meet certain criteria should strongly consider testing. In certain cases, people who don’t meet these criteria may also consider testing.
A genetic counselor can discuss the benefits and risks of genetic testing for you. This section discusses some of these benefits and risks.
My Family Health History Tool
My Family Health History tool is a web-based tool that makes it easy for you to record and organize your family health history. It can help you gather information that’s useful as you talk with your family members, doctor or genetic counselor.
Online tools to help you talk with your health care provider
There are online tools to help you talk with your health care provider about your risk of having a BRCA1 or BRCA2 (BRCA1/2) inherited gene mutation and your risk of breast cancer.
Keep in mind online tools can’t tell you whether or not you have a BRCA1/2 gene mutation or if you will get breast cancer. However, they may help you talk with your health care provider or a genetic counselor about these risks.
How to find a genetic counselor
Your health care provider can refer you to a genetic counselor.
The National Society of Genetic Counselors also has an online directory to help you find a genetic counselor.
Weighing the benefits and risks of genetic testing
A health care provider or genetic counselor can talk with you about the benefits, risks and issues you may face if you’re considering genetic testing.
Testing for BRCA1, BRCA2 and other inherited gene mutations only requires a blood, saliva or cheek cell sample. However, there can be physical, emotional and financial impacts of knowing whether or not you have an inherited gene mutation. That’s why it’s important to carefully consider whether you want to be tested.
Genetic testing is most helpful for people who meet certain criteria.
Even if it’s recommended, genetic testing is a personal decision. A genetic counselor can help you decide if genetic testing is right for you (and whether the findings could be helpful for other family members). If you decide to get tested, your genetic counselor can help you choose the test that meets your needs.
Benefits of genetic testing
Testing negative (the test shows no gene mutation) for BRCA1, BRCA2 (BRCA1/2) or other high-risk inherited gene mutations can bring a sense of relief.
Even if testing finds a gene mutation that increases risk (the test is positive), the results may bring a sense of relief for you and your family. You’ll know why you or your family members developed cancer.
For some people, knowing their result, even if it’s positive (the test shows a mutation), is less stressful than not knowing.
Knowing you have a high-risk inherited gene mutation allows you to personalize your breast cancer screening plan. For example, women with high-risk gene mutations may need to be screened more often and start screening at a younger age than other women.
Women with BRCA1/2 and certain other high-risk inherited gene mutations have options to lower their breast cancer risk. Risk reduction guidelines for women with other high-risk gene mutations are less clear than those for women with BRCA1/2 mutations. As more is learned about these other high-risk mutations, guidelines can be more personalized.
Learn more about risk-lowering options for women with high-risk inherited gene mutations.
Benefits for family members
You can share your test results with family members who may benefit from genetic testing. This gives your adult children and other family members the option of getting genetic testing to learn more about their own risks of cancer. A genetic counselor can help you figure out how to share this information in a way that’s comfortable for you.
Once a BRCA1/2 or other high-risk inherited gene mutation is found, genetic testing is available to family members who are age 18 or older. Remember, an inherited gene mutation may increase the risk of breast cancer in both women and men in your family. It may also increase the risk of other cancers such as ovarian cancer (in women) and prostate cancer (in men).
If you have a high-risk gene mutation, your children have a 50% (1 in 2) chance of having the same gene mutation. For example, say you have a BRCA1 gene mutation. You have two copies of the BRCA1 gene, one with a mutation and one with no mutation. Your children get one of your two BRCA1 genes from you and it’s random which copy you get. (They get their other BRCA1 gene from their other parent.) Other family members may also be at risk for having the mutation.
Remember, just because one family member has a gene mutation doesn’t mean everyone in the family does.
Psychological and emotional risks of genetic testing
If you’re thinking about having genetic testing, consider the emotional impact of the test results.
Have a high-risk inherited gene mutation (the test result is positive)
Having a BRCA1, BRCA2 (BRCA1/2) or other high-risk inherited gene mutation doesn’t mean you’ll get breast cancer. However, learning you have a mutation can cause worry and anxiety. You may feel overwhelmed by the extra screening tests (for example you may need to have a breast MRI in addition to a mammogram each year) and having to make decisions about options that may lower your risk.
People whose test results show they have a BRCA1/2 or other high-risk gene mutation are encouraged to share this information with their family members (both women and men) who may be at risk of breast cancer and other cancers. Sharing this news can be hard.
If you’re a parent, it may be harder to deal with the possibility you passed an inherited gene mutation to your child, than deal with your own risk.
No high-risk inherited gene mutation (the test result is negative)
Getting a negative genetic test result (no inherited gene mutation is found) is usually seen as good news. Sometimes, though, this news can cause awkward feelings around relatives who’ve had cancer or who’ve tested positive for a BRCA1/2 or other high-risk gene mutation.
Even if you don’t have a mutation, you’re still at risk for breast cancer. Remember, most women who get breast cancer don’t have a high-risk gene mutation or a family history of breast cancer .
Variant of uncertain significance result (an inconclusive result)
Getting a result of a variant of uncertain or unknown significance (VUS) can be confusing and frustrating.
With BRCA1/2 testing, most VUS results are later found to be normal variants (they don’t increase the risk of breast cancer). However, there’s a small chance the VUS will turn out to be a gene mutation that increases risk.
With expanded panel testing, you’re more likely to get a VUS result because more genes are being tested.
Not knowing whether the VUS helps explain your personal or family history of cancer may add to the stress of an already trying process.
If your genetic test result (or the option of genetic testing) upsets you, talk with your genetic counselor or your health care provider.
It may also be helpful to discuss these issues with a mental health provider, such as a therapist or a psychologist.
Connecting with other people who have had BRCA1/2 or expanded panel testing may also help.
FORCE offers online information and chat rooms to connect with others who have had or considered BRCA1/2 or expanded panel testing.
Sharsheret offers one-on-one calls with a genetic counselor to discuss genetic testing and related issues for you and your family.
Emotional risks for family members
Genetic testing may also have an emotional impact on family members.
Your genetic counselor may suggest you talk to your family about BRCA1/2 or expanded panel testing before you get tested or before you learn your results. That way you can find out if they want to know about your results.
For people with a BRCA1/2 or other high-risk inherited gene mutation, figuring out how to tell relatives can be hard.
Some family members may value the option of BRCA1/2 or panel testing. Others may be upset, anxious or angry about hearing the news.
If you have concerns about the best way to share the news with your family members, talk with a genetic counselor. You may prefer to write a letter to your relatives (rather than calling or talking face-to-face), especially if you have a big family. Your genetic counselor may be able to help you write this letter.
Privacy issues around genetic testing
Genetic testing results are confidential.
Protection against discrimination
State and federal laws help protect against genetic discrimination.
The Genetic Information Nondiscrimination Act (GINA) prevents health insurance companies from denying coverage when a person’s genetic profile puts them at a higher risk for certain health conditions, such as breast cancer. It also prevents them from charging higher premiums.
GINA also protects against genetic discrimination from employers.
GINA doesn’t prevent life insurance companies or disability insurance companies from denying coverage.
Learn more about insurance.
Genetic test results are treated the same as other confidential medical information.
Since BRCA1 and BRCA2 testing and expanded panel testing are clinical tests, hospitals usually require the results to be placed in your hospital medical record. These results will be kept confidential, similar to other protected health information.
If you have questions about the confidentiality of your genetic test results, talk with your genetic counselor or your health care provider.
If you use an at-home genetic test (direct-to-consumer genetic test), the test results will not be placed in your medical record unless you authorize it. However, with direct-to-consumer tests, your personal information may not be secure. It’s important to understand how the company uses your information, how it protects the information it collects and whether it shares your information with others .
Genetic testing costs
Check with your health insurance company to find out whether the costs of genetic counseling and genetic testing are covered in your plan.
Most insurance plans cover the cost of BRCA1 and BRCA2 (BRCA1/2) testing if you meet the criteria for testing. Coverage of expanded panel testing varies from plan to plan.
Genetic counseling is usually covered if you have a personal or family history of cancer or if you’ve been referred by your health care provider.
A genetic counselor can help you determine if your insurance will cover BRCA1/2 or panel testing.
Affordable Care Act coverage
The Affordable Care Act requires insurance plans that began on or after August 1, 2012 to cover genetic testing costs (when testing is recommended by a health care provider).
If you have a BRCA1/2 inherited gene mutation, the Affordable Care Act also requires coverage of counseling to help you decide if taking a medication to lower the risk of breast cancer is right for you.
If your health care provider recommends BRCA1/2 testing, but you don’t have insurance or your insurance plan doesn’t cover genetic testing costs or you can’t afford the co-payment, there may be financial assistance programs to help.
Most labs have a self-pay rate of $300 or less. You may also qualify for financial assistance through the lab or the cancer genetic testing program at your hospital if available.
FORCE offers a list of genetic testing companies with financial assistance.
Direct-to-consumer (at-home) genetic testing costs
Insurance doesn’t cover the cost of direct-to-consumer (at-home) genetic testing.
People with a BRCA1, BRCA2 (BRCA1/2) or other high-risk inherited gene mutation may have the chance to join clinical trials on new screening, risk reduction and treatments for breast cancer or ovarian cancer.
The National Comprehensive Cancer Network (NCCN) encourages people with a BRCA1/2 gene mutation to consider participating in clinical trials on cancer screening and imaging.
Susan G. Komen® Breast Care Helpline
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You can also visit the National Institutes of Health’s website to find clinical trials.
Learn more about clinical trials.
If you have a BRCA1, BRCA2 (BRCA1/2) or other high-risk inherited gene mutation, it may be helpful to join a support group.
There are support groups for people with BRCA1/2 gene mutations who have not had cancer and support groups for people with BRCA1/2-related cancers.
For example, FORCE offers online and telephone support for people at higher risk of breast, ovarian or other cancers related to family history or inherited gene mutations.
Sharsheret offers online support for Jewish women affected by hereditary breast and/or ovarian cancer. It also offers one-on-one calls with a genetic counselor to discuss genetic testing and related issues for you and your family.
Susan G. Komen® Support Resources