What to Expect When Meeting with a Genetic Counselor (2024)

Cancer genetic counseling involves having a certified genetic counselor help you and your family understand your inherited cancer risk. About 5-10% of cancers are caused by a mutation (alteration) in a gene.These gene mutations can be passed down from a mother or father to their children.A genetic counselor explains the benefits and limitation of genetic testing. He or she can also offer information about cancer screening and risk- reduction options and provide support.

Preparing for an appointment with a genetic counselor

You can get more out of your genetic counseling appointment if you have more information about your family’s cancer history. Helpful information that may be requested by the genetic counselor includes:

  • Your medical records. This includes doctor notes and pathology reports. Pathology reports are your laboratory test results from any biopsies, surgeries, or screening examinations, such as colonoscopies.
  • A list of family members that includes each person’s current age or age at the time of death and cause of death. This list should include parents, siblings, children, aunts, uncles, nieces, nephews, grandparents, and cousins on both sides of your family.
  • Information on specific types of cancer that have been diagnosed in the family. This includes the age at which family members were diagnosed with cancer and where in the body the cancer started. Pathology reports are often helpful.

When going to the appointment, consider taking someone with you. This could be a family member or friend, depending on your preference. The genetic counselor will discuss a lot of information. Another person can help you listen and think of questions. If you choose to bring a family member, that person may also be able to provide information about your family history.

What to expect during the appointment

The following topics will be covered during your appointment with a genetic counselor:

  • Discussion regarding insurance coverage and cost of testing
  • Your personal medical history and cancer screening history.
  • Your family history: The counselor will document your family tree and include at least 3 generations. The family tree will include information such as which family members have had cancer, what type of cancer they had, and their age at diagnosis.
  • The possibility of an inherited cancer risk. Depending on your family history, your counselor may be able to use computerized risk assessment tools to help estimate your risk.
  • Cancer screening and risk reduction options
  • The benefits and limitations of genetic testing for you and your family.
  • A strategy for genetic testing that best meets your needs.
  • Current laws regarding the privacy of genetic information.
  • Take a DNA sample for genetic testing and send it to the lab

What is genetic testing?

Genetic testing is a laboratory test which looks for mutations (alterations) in genes which have been linked with an increased risk for cancer and is performed on a blood or saliva sample. Results typically take 2-3 weeks, but can be completed in 10-14 days for those patients needing results for treatment decisions.

Insurance companies provide coverage for genetic testing for patients who have a certain personal and/or family history of cancer. If you do not meet your insurance company’s criteria for testing, the self- pay rate for genetic testing is about $250. Several labs also have financial assistance programs for those with limited coverage or who do not have insurance.

Contact Information:

Cancer Genetic Counseling Services through Rutgers Cancer Institute

Hereditary Oncology Prevention and Evaluation (HOPE) Program at the LIFE Center

732-235-7110

Appointments available at: Rutgers Cancer Institute in New Brunswick, The Steeplechase Cancer Center in Somerville, The Cancer Center at RWJ University Hospital Hamilton, University Medical Center at Princeton Breast Health Center

www.cinj.org/patient-care/adult/GeneticCounseling

What to Expect When Meeting with a Genetic Counselor (2024)

FAQs

What to Expect When Meeting with a Genetic Counselor? ›

That may involve learning about how they are inherited or who in the family may be at risk of developing a particular condition. Genetic counsellors also provide emotional and practical support to help people adjust to living with, or being at risk for, a genetic condition.

What questions will a genetic counselor ask me? ›

Common topics include:
  • Talking about your family health history and ethnic heritage.
  • Helping you understand the causes of genetic conditions.
  • Helping you understand testing options, diagnosis, or, in some cases, the reason why no diagnosis has been made.

What to expect from genetic Counselling? ›

That may involve learning about how they are inherited or who in the family may be at risk of developing a particular condition. Genetic counsellors also provide emotional and practical support to help people adjust to living with, or being at risk for, a genetic condition.

What is discussed in genetic counseling? ›

In general, a genetic counseling session aims to: Increase the family's understanding about a genetic disease(s), the risks and benefits of genetic testing and disease management, and available options. Identify with the individual and family the psychosocial tools required to adjust to potential outcomes.

What questions should I ask my genetic counselor about Down syndrome? ›

What is the genetic cause of Down syndrome? Can it run in the family? What is the chance that my child has Down syndrome based on my family history, prenatal testing or physical features noted in my baby?

What to expect at a genetic counseling meeting? ›

The genetic counselor will discuss a lot of information. Another person can help you listen and think of questions. If you choose to bring a family member, that person may also be able to provide information about your family history.

What are 5 things a genetic counselor does for a family? ›

After the counselor has the medical information they need, they will:
  • recommend genetic tests.
  • look at the results of tests.
  • explain how gene changes can cause genetic illnesses.
  • talk about how likely it is that a genetic illness will be passed to a child.
  • talk about options on what to do next.
  • provide support and resources.

What are the cons of genetic counseling? ›

Some disadvantages, or risks, that come from genetic testing can include: Testing may increase your stress and anxiety. Results in some cases may return inconclusive or uncertain. Negative impact on family and personal relationships.

Is it worth it to go to genetic counseling? ›

A genetic counselor can help couples determine what tests are most appropriate for your pregnancy. It can be especially important if any standard prenatal screening test yields an abnormal result.

What does genetic counseling typically involve? ›

In general, a genetic counseling session aims to: Increase the family's understanding of a genetic condition • Discuss options regarding disease management and the risks and benefits of further testing and other options.

Why would you be referred to a genetic counselor? ›

The Centers for Disease Control and Prevention (CDC) has a list of reasons for genetic counseling. The National Society of Genetic Counselors details the reasons to see a genetic counselor, including pregnancy and family planning, cancer, childhood conditions, and at-home genetic testing.

What to expect during genetic testing? ›

A member of your health care team takes the sample by inserting a needle into a vein in your arm. For newborn screening tests, a blood sample is taken by pricking your baby's heel. Cheek swab. For some tests, a swab sample from the inside of your cheek is collected for genetic testing.

What are the 3 primary aspects of genetic counseling? ›

Q-Chat
  • Interpretation of family and medical histories to assess the chance of disease occurence/recurrence.
  • Education about inheritance, testing, management, prevention, resources and research.
  • Counseling to promote informed choices and adaptions to the risk or condition.

What kind of questions do genetic counselors ask? ›

Your genetic counselor will likely ask you questions about your medical history and your family history. It can be helpful to talk with your relatives about your family history before your appointment. You may also benefit from writing down a list of any questions you may have for your genetic counselor.

Can Down syndrome be detected by genetic counseling? ›

Any testing for a genetic disease, including Down syndrome, should begin with genetic counseling. The process of reaching a diagnosis can be a long and difficult one, genetic counselors are able to help patients and their families navigate the system, and ensure a more accurate diagnosis as a result.

What is the most common genetic condition of Down syndrome? ›

How common is Down syndrome? According to the Centers for Disease Control and Prevention, approximately one in every 775 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 5,000 babies with Down syndrome are born in the United States each year.

What questions do they ask for genetic testing? ›

Your genetic counselor will ask you about your children, siblings, parents, grandparents, aunts, uncles, and cousins on both sides of your family. Finally, if any family members have already had genetic testing, it is important to bring a copy of the test results with you to your appointment.

What are the questions of gene therapy? ›

Gene Therapy – Frequently Asked Questions
  • What is gene therapy? ...
  • Why is gene therapy getting so much attention? ...
  • Is gene therapy a cure? ...
  • Can gene therapy be passed on to future generations? ...
  • Why is gene therapy so expensive? ...
  • Will insurance pay for gene therapy? ...
  • Who is eligible to receive gene therapy?

How do I prepare for genetic testing? ›

Before you have genetic testing, gather as much information as you can about your family's medical history. Then, talk with your doctor or a genetic counselor about your personal and family medical history to better understand your risk. Ask questions and discuss any concerns about genetic testing at that meeting.

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