How to Prepare for Your Child's Genetic Counseling Visit

A genetic counselor will be able to help you understand a number of things about your own and your child's health. They will discuss with you the risks implied in your family health history, any symptoms or developmental delays you are concerned about, and any genetic tests you or your child might need. But to get the most out of your session, consider taking the following steps to prepare for your visit. This post is specific to preparing for a genetic counseling visit for your child, but these steps very much apply for adults who are looking to see a genetic counselor as well.

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1.  Collect Your Family Health History
To make the most out of your child's visit, you should gather family health history information prior to the appointment and bring it with you to share with the genetic specialist. For information on what information to collect, read our blog post for tips on collecting your health history. And don’t forget to order your free copy of our Does it Run in the Family Toolkit, which provides great tips to talking to family members as well as advice for collecting and organizing the information. For more resources on collecting your family health history, see the Genes in Life blog posts from our spotlight on family health history from August through October.

2.  Collect Your Your Child's Medical Records
It’s helpful for any doctor new to your child’s case to have as much information as possible. Be sure to request that any and all relevant information be sent to the genetic counselor before your visit. Or, if you keep your own set of medical records, bring them with you to the appointment. This would include records from your pediatrician or other primary care physician as well as any other specialists your child has seen. See our blog post on Organizing Your Personal Health Records for tips on keeping this information together.

3.  Consider the Costs

Genetic Counseling
Many insurance companies will cover genetic counseling under the CPT code 96040. This number is what the genetic counselor will report to your insurance company in order to describe the services you received. This code covers genetic counseling services including obtaining a structured family genetic history, creating a pedigree, assessing your genetic risk for certain conditions, and counseling of the patient and family.

You should contact your own insurance provider before your appointment to ask if this service will be covered under your plan. The code number might be helpful in describing what services you are talking about. If your insurance does not cover genetic counseling, contact your pediatrician to discuss other options or the genetic specialist to discuss other payment options.

Genetic Testing
Genetic counseling and genetic testing are generally considered separate charges to your insurance company. If a specialist recommends genetic testing, be sure to ask him or her about costs and insurance coverage during your appointment. If your insurance will not cover a specific test, this does not mean that there are not other options! Talk this over with your genetic counselor to see what payment options are available, and be in touch with your own insurance provider to discuss what your plan will and will not cover for your child.

For more information on insurance and genetic services, visit

4. Download or request a FREE COPY of Genetic Alliance's print resource 
Making Sense of Your Genes: A Guide to Genetic Counseling.

Other Resources: