Resource Links for Affected Individuals and Families

For information in plain language on genetics and genetic testing, there are many excellent websites.  The following are a few offerings from academic, non-profit, and government resources.


 

Educational

University of Utah Genetic Science Learning Center – Genetics: Tour of the Basics – If you are confused by all the talk about DNA and genes, take this interactive tour of the basics.

Genetics Home Reference – A service of the U.S. National Library of Medicine – Help Me Understand Genetics presents basic information about genetics in clear language and provides links to online resources.  It begins with “What is a Cell” and continues through an exploration of the risks, benefits and limitations of genetic testing.  

National Institutes of Health – National Human Genome Research Institute - The NHGRI provides a menu of educational selections on genetic and genomics including a talking glossary available in English and Spanish and as a free App from NHGRI and Apple for your iPhone or iPad.

Genetics and Public Policy Center – Information on the Genetic Information Nondiscrimination Act (GINA) – What GINA does and does not do  


Search for a Genetic Counselor or Genetics Clinic

National Society of Genetic Counselors – The NSGC website features a search tool for finding a genetic counselor in your area and other resources including the publication from NSGC and Genetic Alliance Making Sense of Your Genes:  A Guide to Genetic Counseling.

InformedDNA – InformedDNA is a network of genetic counselors available by telephone.  Most genetic counseling services are offered in person by you visiting their office.  InformedDNA differs in that they counsel over the phone and provide nation-wide coverage.  All counselors can help you and your healthcare provider decide which genetic testing is appropriate for you, help you through the process and explain test results.  

American College of Medical Genetics Clinic Services Search Engine – ACMG's Genetics Clinics Database is a service for individuals who wish to locate a genetics center. The database contains the locations of genetics clinics that have requested to be listed.  You can view all U.S. clinics listed or search for a specific center or genetic services.


Publications and Tools

My Family Health Portrait - The U.S. Surgeon General's My Family Health Portrait is an internet-based tool that makes it easy for you to record your family health history.  It assembles your information and makes a "pedigree" family tree that you can download.

Genetic Alliance– Publications – Understanding Genetics:  A Guide for Patients and Health Professionals is one of many downloadable publications Genetic Alliance makes available for free.