Your Genetic Counseling Appointment: How to Prepare for It, and What to Expect

Genetic counseling is a conversation and an opportunity to learn more. Your appointment will be most helpful if you collect as much information as possible about your family's medical history beforehand. Helpful information includes:

  • Your medical records: doctors' notes and reports from any procedures or tests. If you are seeing a genetic counselor at the same hospital where you are/were treated, the genetic counselor often has access to this information.
  • Your family members: each person's current age or age at the time of death, and cause of death. This list should include blood relatives only (parents, brothers/sisters, children, aunts, uncles, nieces, nephews, grandparents, and cousins) on both sides of your family.
  • Heart disease in your family members: the age at which family members were first diagnosed with their disease and the specific diagnosis. Some diseases to note include: fainting, birth defects involving the heart, cardiomyopathy, arrhythmias, high cholesterol, aneurysms, heart attacks, and sudden cardiac arrest or death. If you aren't aware of the details of your family history, it could be helpful for you to ask your family members questions and complete a family history questionnaire before your visit, to make sure the genetic counselor's review and assessment of the information you provide is accurate.

There are a number of “red flags” for inherited heart diseases that you can look for in your family history and discuss with your genetic counselor or doctor at your appointment:

  • A history of sudden cardiac arrest or sudden death in any family member, including:
    • Drowning unexpectedly
    • Single-car accident that didn’t involve alcohol or weather
    • Sudden infant death syndrome (SIDS)
  • Heart disease or congestive heart failure before 50 years of age
  • Two or more close relatives (on the same side of your family) with the same heart condition
  • A personal or family history of unexplained fainting or passing out
  • Family members with a pacemaker or implantable cardioverter defibrillator (ICD) device
  • Multiple family members with high cholesterol

Although having these details before your appointment is helpful, it is not necessary. You should not avoid genetic counseling or be worried about having a useful appointment just because you do not know a lot about your family history.

When going to the appointment, consider taking someone with you. This may or may not be a family member, depending on your preference. The genetic counselor will discuss a lot of information, and it can help to have someone else listening with you. A genetic counseling appointment can take as little as 30 minutes, to more than an hour and a half. If you choose to bring a family member, that person may also be able to provide information about your family history.

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

  • Your personal medical history
  • Your family history of heart disease
  • The possibility that this heart disease is running in your family, and how this affects you/your family members
  • The risks, benefits, and limitations of genetic testing for you and/or your family
  • A strategy for genetic testing to consider that best meets your needs
  • Thoughts on medical screening that may be helpful for you/your family (to review with your healthcare provider)
  • Current laws in your area regarding the privacy of genetic information
  • Helpful resources for you to find support or learn more

How do I find a genetic counselor in my area?

Use the NSGC's "Find a Genetic Counselor" feature to locate a genetic counselor near you.

National Society of Genetic Counselors

The National Society of Genetic Counselors (NSGC) is the leading voice for genetic counselors. It promotes the professional interests of genetic counselors and provides a network for professional communication.

Canadian Association of Genetic Counsellors

CAGC can provide information about the benefits of genetic counseling and help you find a local genetics clinic to access a genetic counselor in Canada.