A Patient's Guide to Genetic Counseling
From WikiGenetics
Contents |
[edit] About This Guide
The original production of this guide was developed as a partnership between Genetic Alliance and the Johns Hopkins/National Human Genome Research Institute Genetic Counseling Training Program. It serves as an informational source for patients and grows in value through the contributions made by the community. Each user is encouraged to maintain and enhance this guide by editing and amending its content.
A PDF file of the original guide will be available on the Genetic Alliance website soon!
[edit] What is genetic counseling?
The goal of genetic counseling is to help people learn more about the causes of genetic conditions and how people are affected by them.
A genetic counseling visit can:
- Look at family and medical histories to help explain the chance of disease
- Explain how genetic conditions are passed down through families
- Go over different types of genetic tests
- Offer guidance to help people make informed choices or life plans
- Share resources to help manage ways to live with genetic conditions.
[edit] Why might I see a genetic counselor?
(Follow the links for more information about specific types of genetic counseling)
- You, your child or a family member has been diagnosed with a genetic condition Pediatric/General Genetic Counseling
- You are concerned that you, your child or a family member has a genetic or inherited condition and you would like more information Pediatric/General Genetic Counseling
- Your family has a history of developmental disability, birth defects and/or mental retardation Pediatric/General Genetic Counseling
- Your family has a history of cancer Cancer Genetic Counseling
- Your family has a history of mental illness Psychiatric Genetic Counseling
- You are pregnant or considering becoming pregnant and are concerned about the health of your baby Pediatric/General Genetic Counseling
- Your baby had an abnormal result from newborn screening
[edit] What can a genetic counselor do for you?
- Find and give you information about the genetic condition
- Help you understand how genetic conditions run in families
- Review your family health history
- Figure out whether you or your family members are at risk for disease
- Provide information about testing options and help you decide what is best for you and your family
- Help you find referrals to medical specialists and other resources
- Find advocacy and support networks for families in similar situations
- Advocate on your behalf for insurance coverage of recommended tests
Ways to Prepare for a Genetic Counseling Visit
[edit] For more information about specialty areas of genetic counseling, you can follow the links below:
Pediatric/General Genetic Counseling
Psychiatric Genetic Counseling
[edit] Other types of genetic counseling include:
- Assisted Reproductive Technology/Infertility Genetic Counseling
- for couples experiencing infertility or who want to have genetic testing done on an embryo
- Cardiovascular Genetic Counseling
- for people concerned about their risk for various types of heart disease
- Metabolic Genetic Counseling
- for children, adults, and their families who have genetic conditions affecting the way they break down (metabolize) certain substances in their body
- Neurogenetic Genetic Counseling
- for people and families who have inherited neurological conditions
[edit] Resources
For specific resources about these Genetic Counseling specialties, please visit:
Genetic Alliance: Genetic Counseling (Coming Soon!)
To find a genetic counselor in your area or for information about genetic counseling as a field, you can find more information at:
National Society of Genetic Counselors
[edit] Special Thanks
[edit] The Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program
Melanie Baxter (Genetic Counseling Student)
Julie S. Cohen (Genetic Counseling Student)
Gillian Hooker (Genetic Counseling Student)
Mindy Simonson (Genetic Counseling Student)
Megan Truitt (Genetic Counseling Student)
Holly Peay (Assistant Director)
[edit] Genetic Alliance
James O’Leary (Chief Operating Officer)
Amelia Chappelle, MA, MS (Associate Director of Genetics Resources and Services)
Heather Ferguson, MS CGC
Rebecca Sample
Hilary Andreff
[edit] Independent advisors and reviewers
Lisa Schoyer (Costello Syndrome Family Network)
Michele Manion (The Primary Ciliary Dyskinesia Outreach Foundation)
Deborah A. Jacobs (Lowe Syndrome Association)
Kristy Colvin (International Mosaic Down Syndrome Association)
Kimberly Crawford (National Tay Sachs & Allied Diseases Association)
Sandra Prucka, MS CGC (University of Alabama-Birmingham)
Shonee Lesh, MS CGC (Rocky Mountain Cancer Centers)
Robin Troxell, MS CGC (University of Missouri-Columbia)
Kira Apse, ScM, CGC (Autism Consortium, Harvard Medical School)
Deborah Axtell, MS CGC (Howard County General Hospital)
And to all those in the community that have contributed to the growth and value of this guide by continuing to edit and add to its content.
