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National Society of Genetic Counselors; Genetic Alliance. Making Sense of Your Genes: A Guide to Genetic Counselling. Washington (DC): Genetic Alliance; 2008.

Cover of Making Sense of Your Genes

Making Sense of Your Genes: A Guide to Genetic Counselling.

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General and pediatric genetic counseling

Why see a genetic counselor at a general genetics clinic?

General genetics clinics serve children, adults, and families with known or suspected genetic conditions and birth defects. Some clinics serve both children and adults; whereas, others serve primarily children (pediatric genetics clinics) or adults (adult genetics clinics). A team of physicians and genetic counselors are available to diagnose and provide support and help for those with any genetic condition. Some families start out in a general genetics clinic and, if a diagnosis can be made, they may then be referred to a specialty clinic.

Some general genetics clinics provide outreach services to rural areas. If you are far from a major medical center, contact your nearest center and ask about outreach programs. Some outreach programs also specialize in prenatal services, in addition to the genetic consultation services provided in a general clinic.

What can I do to prepare for my appointment?

It is best to start preparing a few weeks in advance, if possible, so you have enough time to gather all of the information needed.

1.

Contact your insurance company to find out if the genetic counseling consultation will be covered or if you may need to pay for some or all of the appointment.

2.

Find out as much as you can about your family’s health history. Talk to your family members and try to find medical information about your siblings, parents, aunts, uncles, cousins, grandparents, children, and grandchildren. To find out if a condition runs in the family, the genetic counselor will ask questions that relate to the problems for which the person was referred.

3.

Gather all of your medical records and, if possible, for any family members who may also be affected by the particular genetic condition.

4.

Think about bringing someone, either a friend or family member, with you for support and to help you remember all of the information that will be provided to you.

5.

Write down your questions and concerns in advance. You may want to bring a notepad and pen to take notes during the meeting.

If you do not live near a major medical center, contact your nearest center and ask about outreach programs.

What will happen during my appointment?

The genetic counseling session can last an hour or longer, and the information covered will vary depending on the genetic condition. (More complex cases could take longer.) Depending on the reason for the visit, some key things may happen during the counseling session:

  • If the patient, couple, or family was referred to the genetics clinic, the genetic counselor will review the reason for referral.
  • The team will take a family health history of at least three generations, documenting all genetic conditions or health problems in each family member.
  • A physician may provide a full physical examination and decide on laboratory tests to rule out or diagnose a genetic condition or refer you to other medical specialists.
  • The genetic counselor can provide supportive counseling and information about resources or support networks.
  • The genetic counselor will explain the diagnosis and any issues about the condition, including how the condition is expected to progress, the management of the condition, treatment options, whether genetic testing is available, and the chances of the condition being present in future pregnancies.

This may be done all in one counseling session or over the course of numerous sessions. The healthcare team may ask you to come back for follow-up appointments.

Copyright © 2008, Genetic Alliance.

All Genetic Alliance content, except where otherwise noted, is licensed under a Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Bookshelf ID: NBK115510

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