Sharing your inherited genetic test results

Getting tested for an inherited genetic mutation often means that at some point, you will share your results with family members. This isn’t always easy. It can bring up many mixed feelings, ranging from anxiety and guilt to relief.

But sharing results is important, because:

• If you test positive for an inherited genetic mutation, first-degree relatives have a 50% chance of testing positive and second-degree relatives have a 25% chance of testing positive.
• When family members know they could be at risk, they can work with a genetic counselor and their doctors to create a risk-reducing plan

Below, we’ll provide tips for sharing results with your family. We’ll also explain legal protections around sharing results at work or with insurers.

Sharing genetic test results with family

Some families have lived with a known inherited breast cancer mutation for a long time. In other families, there may be a pattern of breast cancer, but no one has been tested until now. In both cases, sharing test results can bring up a range of emotions.

Genetic test results sometimes mean that you or your family will need to make medical decisions. It’s normal to feel fear, anger, or uncertainty about this. There are no wrong feelings, and what you feel is unique to you.

It can help to talk with your genetic counselor about how you feel. Your genetic counselor can:

• Help you make a plan for talking with your family
• Write a family letter that includes your test results, what they may mean for your family members, and next steps they can take.
• Make recommendations and referrals for support groups and other resources, such as a mental health professional, who can provide guidance

To meet others who have tested positive for an inherited genetic mutation, visit Facing Hereditary Risk Empowered (FORCE). FORCE offers support groups, message boards, events, and more for people living with inherited cancer risk.

All of these resources can be helpful as you think through sharing your results with your family.

Shared family risk

If your family has a strong history of breast cancer, you may have grown up with relatives going through diagnosis and treatment. Watching family members’ experiences can trigger anxiety about your own health and wellbeing. But there may also be times when you like you are prepared to face whatever happens.

In some families, a shared genetic mutation may have a bonding effect. Knowing you have the same mutation may bring family members together because of common concerns and challenges. You may be able to learn from and guide one another as you each navigate the impact of an inherited genetic mutation.

If you learn that you don’t carry a genetic mutation that runs in your family, it can be confusing. You may feel relieved at the news but also feel guilty. A response known as “survivor’s guilt” is extremely common and can happen when you feel you’ve escaped something your relatives could not.

If you're the first in the family to get tested

Being the first one in the family to get tested can feel isolating for some people. As the first, you are learning a lot very quickly, and telling family members about your results can be overwhelming.

Here are some ways to make the conversation more manageable.

Before you share your results:

• If you are newly diagnosed, you may feel pressure to make your treatment decisions while also educating your family about their potential risk. Take time to process your thoughts before talking with your family. Making treatment decisions should be your first priority.
• Ask your genetic counselor to write a family letter that includes your test results, what they may mean for family members, and next steps to consider.
• Ask your genetic counselor if they would be willing to meet with you and your family members together to talk about next steps.
• Make a list of family members you plan to tell.
• Decide if you want to share results in person, in a phone conversation, or in a letter or email. It’s OK to choose differently for different people depending on what feels best.
• Make some notes about what you want to say ahead of time. Consider rehearsing what you want to say with a trusted friend.
• Be prepared for the possibility that some family members may not want to know about your results. While you can tell them that knowing can help them reduce any potential cancer risk, it’s also important to respect their choices.
• You may want to tell some relatives by letter or email. In some cases, you may want to tell relatives who live far away or who you don’t know well. Talking by phone may not be an option for everyone. It could be uncomfortable. It’s OK to tell relatives about your results by letter or email. First, let them know that you have some health news and ask if they are interested in knowing more.
• Ask your genetic counselor or hospital social worker if there are support resources you can share with any family members who are having difficulty processing the news.

When sharing results:

• If sharing results in person, you may want to talk with relatives one at a time or in small numbers at a time. This can make it less overwhelming.
• If your genetic counselor writes a family letter, share a copy with each family member.
• Offer the basic facts of your results and what those results mean for you.
• Share the name of your or other nearby genetic counselors for family members who live in your area.
• Be prepared for a variety of possible reactions. Some family members may feel fear or anger about their potential risk. Others could feel guilty about passing a mutation to other family members. But they may also feel relieved to know there are steps they can take. Encourage family members to talk with their own doctors about next steps.

Many people find it empowering to be a source of information to their family. The ability to help other family members through the genetic testing process can be rewarding. If there is an ongoing pattern of cancer in your family, discovering the reason for it may provide an explanation for something that had previously been unexplainable.

Results may guide recommendations for earlier, more regular screening, and it can be comforting to know that any abnormalities will be caught as soon as possible.

Talking with a spouse or partner

If you have been diagnosed with breast cancer, an inherited genetic test result can affect your intimate relationships in different ways. The status of a current relationship, your age, treatment side effects, and the risk of a new cancer can all play a part in how you feel.

Your spouse or partner may want to see the genetic counselor and your oncologist with you to support you and to learn more about what your genetic test results may mean for you and your family. Giving your partner an active role in counseling and testing may strengthen your relationship.

If you test positive for an inherited genetic mutation, you’ll talk with your genetic counselor and your oncologist about next steps. These can be different depending on the mutation. Here are some examples:

• Increased screening
• Surgery to reduce the risk of a new cancer, including:
  • Prophylactic mastectomy to reduce the risk of a new breast cancer
  • Salpingo-oophorectomy that removes ovaries and fallopian tubes to reduce the risk of future breast and/or ovarian cancer

Not everyone who tests positive for a genetic mutation has risk-reducing surgery. You and your doctor will discuss what’s right for your individual risk level.

If you do decide to have risk-reducing surgery, there are things to consider with your doctor. Risk-reducing surgery can have a significant impact on how you feel about your body (body image) and your feelings about sexual intimacy.

It’s normal to worry about how your partner feels about your test results and what they may mean for the future. Communicating clearly about how you feel is key to how both you and your partner respond to facing this challenge together.

Be sensitive to your partner’s concerns while you share your own. Invite your partner to appointments with you to ask questions, take notes, support you, and learn along the way.

If your partner feels overwhelmed or anxious, they may wish to seek individual emotional support, such as seeing a mental health professional or joining a caregiver support group.

Talking about fertility

If you test positive for a certain inherited genetic mutation and plan to have children in the future, fertility is something to consider with your partner.

There are different reasons for this depending on the mutation. Here are some examples:

• PARP inhibitor treatment, approved for people who test positive for a BRCA mutation, is not safe to take if you are pregnant.
• If you test positive for an inherited genetic mutation that increases the risk of ovarian cancer and decide to have a risk-reducing salpingo-oophorectomy, this surgery ends the ability to get pregnant.

For some women, it can feel like sudden pressure to plan for their future family. It can be overwhelming to think about changing family plans because of something beyond your control.

It’s important to know that there are many fertility options available to help you make decisions about building your family while lowering the risk of a new cancer.

Talk with your genetic counselor, a social worker, or your oncologist about preserving your fertility. Ask if you can include your partner in these conversations. You can also visit Making decisions about protecting your fertility to learn more.

Talking with children

If you carry an inherited genetic mutation, you have a 50 percent chance of passing it on to your children. Depending on how old they are, your children may want to consider genetic testing.

National guidelines recommend that high-risk hereditary cancer screening begin at ages as young as 25, depending on individual risk. Still, some young adults may choose to test as young as age 18.

If you have adult children, your genetic counselor can schedule a time to meet with all of you to talk about their risk, or schedule individual appointments for each adult.

It’s possible your children will be uncomfortable talking about testing or unwilling to be tested. As a parent, this may distress or even anger you.

Still, everyone processes things differently. Like you, your children may need time to consider the risks and benefits of knowing if they carry a gene mutation. They may choose not to have testing done now but change their minds later. One way to be there for your children is to give them as much information about genetic risk and breast cancer as you can and leave it with them to think about.

If you have very young children, you may not need to tell them about an inherited genetic mutation until they are older.

Preteens, teenagers, and young adults who have seen you go through cancer treatment will likely have questions about your test results and how it might impact them.

If your young adult or adult children have many questions, it may be a good idea schedule an appointment for all of you to meet with your genetic counselor together. Your counselor can provide guidance about testing, and when they should start screening.

Sharing genetic test results and your legal rights

Just as sharing inherited genetic test results with family can bring up questions, there can be questions about how employers and health insurance companies handle these test results.

It’s important to know your rights. The 2008 Genetic Information Nondiscrimination Act (GINA):

• Made it illegal for health insurers and employers to discriminate against anyone with a genetic risk for a disease, whether hereditary or non-hereditary
• Made it illegal for employers to ask workers to share their own or their families’ health and genetic information

Visit FORCE to learn more.