If you are considering a genetics consultation, or if you are already scheduled and planning your upcoming visit, you may benefit from creating a list of questions to ask your genetic counselor. The information below can help provide ideas for questions to ask and explain what to expect during your visit. You can also visit our genetic counseling page to learn more.
What Questions Should I Ask My Genetic Counselor?
In order to get the most benefit from your genetic counseling session, you should be prepared to ask questions. However, it may be hard to think of the right questions to ask. Here are some examples that may help guide your conversation with your genetic counselor:
- Questions about the genetic counseling appointment
- What if I don’t have detailed information about part of my family history?
- Can all of my concerns be addressed in a single visit, or might I need to be seen by another genetic counselor in a different specialty?
- Are there other health care providers I should see as well?
- Are there any support resources available for me?
- How will testing for genetic conditions impact my life insurance, disability insurance or other insurances?
- Questions about risk assessment
- Does the condition I am concerned about have a genetic cause? If so, how is it inherited, and what is my risk to have it or the risk for other family members to have it?
- Is there a test that will tell me, with certainty, my risk of developing the condition?
- Questions about testing
- How accurate is the genetic test?
- What are the possible results from the genetic tests and how will they impact my medical care?
- What are the advantages and disadvantages of having this test done? What are the limitations of this genetic testing?
- Is this test covered by my insurance? If not, are there low-cost cash pay options or financial assistance available?
- What is the testing process like? How long do test results take?
- If I have testing now, will it need to be repeated in the future?
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How Do I Prepare for a Genetic Counseling Appointment?
Genetic counselors are specially trained health care professionals who provide information and support to people with a family history of genetic conditions, or people who want to learn more about their personal or reproductive risks based on genetic information. If you have never seen a genetic counselor, you may be unsure of what to expect.
Your genetic counseling appointment will take approximately 30 – 60 minutes. The genetic counselor will check in with you regarding what information you hope to discuss. You will be asked about your personal medical history and, if relevant, your family history as well. The genetic counselor will then discuss any conditions for which you are at an increased risk based on the information you provided. Finally, any applicable testing recommendations will be reviewed.
To make the most of your genetic counseling appointment, it is helpful for you to have the following prepared:
- Your medical records.
- A list of any genetic conditions that have been diagnosed in family members, as well as the age of your relatives at the time of their diagnosis.
- Reports from any previous genetic testing done for you or other family members.
- A list of concerns that you want to discuss. Preparing a list of questions to ask during genetic counseling can ensure you don’t forget anything important.
Watch this video to learn more about what to expect from the genetic counseling appointment.
If you are meeting with a genetic counselor to discuss a personal or family history of cancer, you may consider asking some of the following questions:
- How likely am I to carry a mutation in a cancer-related gene?
- What are the possible results I could receive from a genetic test, and what do the different results mean for my cancer risk?
- How will the results of a cancer genetic test change my medical care and cancer screening recommendations?
- Should I test a few genes, or have a larger testing panel performed?
- What is the testing process like? How long does it take to get results? Will insurance cover testing?
Due to celebrities, such as Angelia Jolie, speaking publicly about the genetic link to their breast cancer, many people are aware that breast cancer can be due to genetic causes. It is important to note that breast cancer is not the only type of cancer that can be due to a genetic cause. Learn more about cancer genetics.
Questions to Ask a Genetic Counselor About Down Syndrome
If you are meeting with a genetic counselor to discuss a family history of Down syndrome, or the chance that your pregnancy may be affected with Down syndrome, you may consider asking some of the following questions:
- 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 are common features of Down syndrome and what medical treatments or therapies are recommended for children with Down syndrome?
- Are there any support resources available to me?
These questions can also apply to additional genetic conditions, other than Down syndrome, that you may be concerned about. More information about genetic counseling for children with possible genetic conditions can be found on our pediatric genetics page.
Questions to Ask a Genetic Counselor About Pregnancy
If you are meeting with a genetic counselor to discuss a family history of a genetic condition , or the chance that your pregnancy may be affected with a genetic condition, you may consider asking some of the following questions:
- What types of prenatal genetic testing are available to me based on my personal history, pregnancy history and family history?
- What conditions are detected by these tests? What conditions are not detected by these tests?
- How accurate are the prenatal testing options?
- Should I do prenatal genetic counseling and testing?
More information about prenatal testing options can be found on our genetic testing in pregnancy page.