Resources

This section contains handouts and links covering many different topics in genetics. Click on the links below or scroll down to find the topic in which you are interested.

• GENERAL GENETICS
  DNA Banking (pdf) - Brochure from the National Society of Genetic Counselors about saving DNA for future use.
  
  Genetic Discrimination (pdf) - Handout provides an overview of the laws protecting your genetic information.
  
  Genetic Information Nondiscrimination Act (GINA) - An online resource that provides an introduction to GINA and its protections in health insurance and employment.
  
  Making Sense of Your Genes: A Guide to Genetic Counseling (pdf) - Booklet from the Genetic Alliance covering general information about genetic counseling.
  
  Medical Records Release Form (pdf) [Spanish version] [Chinese version]- Blank form for requesting your medical records from another medical facility.
  
  What to Expect at Your Child's Genetics Visit for HEARING LOSS (pdf) [Spanish version]- Handout provides information on what a genetics visit can offer for your child with hearing loss and what happens during the visit.
  
  Genetics Education Fact Sheets -  Link to a series of 64 Genetics Fact Sheets produced by The Centre For Genetics Education (CGE) based at Royal North Shore Hospital in Sydney.
  
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  Genetic Testing
  Array Comparative Genomic Hybridization (Array CGH) (pdf) - Describes array CGH testing. 
  
  Array CGH: Detection of a deletion or a duplication (pdf) - General review of a positive finding by array CGH testing.
  
  Celiac diseae (pdf) - Describes the role of genetic testing for celiac disease.
  
  Fragile X testing (pdf) - Describes fragile X syndrome and genetic testing for this condition.
  
  Hereditary Hemochromatosis (pdf) - Describes the inherited form of hemochromatosis (iron overload) and information about testing for common genetic mutations.
  
  Hypertrophic Cardiomyopathy (pdf) - Describes hypertrophic cardiomyopathy (HCM) and provides information about testing for genetic mutations in genes related to this heart condition.   
  
  Inherited Thrombophilia (pdf) - Describes inherited causes of thrombophilia (clotting disorders) and information about testing for common genetic causes.
  
  Long QT syndrome (pdf) - Described long QT syndrome and provides information about testing for genetic mutations in genes related to this heart condition. 
  
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• PRENATAL GENETICS
  Folic Acid and Pregnancy (pdf) [Spanish version]- Describes the benefit of folic acid during pregnancy, how much is needed, and how to ensure you get the amount you need.
  
  Prenatal Testing: Understanding Your Options - Link to a 12 minute Kaiser Permanente program that provides an overview of your testing options during pregnancy.
  
  Prenatal Testing for Birth Defects (pdf) [Spanish version] - Information about prenatal screening tests and diagnostic procedures.
  
  Prenatal Testing for Birth Defects:Testing Options for Twin Pregnancies (pdf) - Information about prenatal screening tests and diagnostic procedures specifically written for twin pregnancies.
  
  Prenatal Testing Decision Tree (pdf) - Uses a question and answer format to help guide you in your decisions about prenatal testing for birth defects. If you are 14 weeks or later in pregnancy, use the second trimester decision tree.
  
  Miscarriage (pdf) - Information about the range of physical and emotional experiences following a miscarriage.
  
  Beyond Choice (pdf) - Flyer about the Beyond Choice Support Group for women and their partners who have ended a wanted pregnancy due to a genetic birth defect.
  
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  Screening Tests
  California Prenatal Screening Program - Link to the California Department of Public Health web site. Site covers detailed information on Quad Marker Screening, Serum Integrated Screening, and Sequential Integrated Screening.
  
  Screen Positive Results - Link to handouts about first trimester and second trimester screen positive results. Includes versions in Spanish, Chinese, Korean, and Vietnamese. 
  
  Screen positive: Large Nuchal Translucency (pdf) - Handout from the California Department of Public Health. For links to other languages including Spanish, Chinese, Korean, and Vietnamese, click here. 
  
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  Diagnostic Tests
  Facts About Amniocentesis & CVS (pdf) [Spanish version] [Chinese version] - Booklet with detailed information about amniocentesis, CVS, and the specific birth defects these tests can find.
  
  Amniocentesis (pdf) [Spanish version]- Provides a detailed description of the procedure, including how it is done, the risks, and the type of results.
  
  Amniocentesis consent form (pdf) - Copy of the form you sign on the day of your amniocentesis procedure.
  
  Chorionic Villus Sampling (CVS) (pdf) [Spanish version]- Provides a detailed description of the procedure, including how it is done, the risks, and the type of results.
  
  CVS consent form (pdf) - Copy of the form you sign on the day of your CVS procedure.
  
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  Ultrasound
  Ultrasound Exam in Pregnancy (pdf) [Spanish version]
  
  Cystic Hygroma (pdf) [Spanish version] 
  
  Choroid Plexus Cysts (pdf) [Spanish version]
  
  Dilated Renal Pelvis (pdf) [Spanish version]
  
  Echogenic bowel (pdf) [Spanish version]
  
  Echogenic Intracardiac Focus (pdf) [Spanish version] 
  
  Gastroschisis (pdf) [Spanish version] 
  
  Mild Ventriculomegaly (pdf) [Spanish version]
  
  Single Umbilical Artery (pdf) [Spanish version]
  
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• CANCER GENETICS
  
  Breast Cancer
  
  Breast Cancer Screening (pdf) [Spanish version] [Chinese version] - Information about routine screening for breast cancer.
  
  Breast and Ovarian Cancer Susceptibility Genes: Should you be tested? (pdf) - Information about BRCA1 and BRCA2 genes and when testing is indicated.
  
  Breast MRI (pdf) - Describes the use of breast MRI for cancer screening.
  
  Fibrocystic Breast Changes (pdf) - Describes typical fibrocystic breast changes, how to address the related discomfort, and what concerning signs to watch for.
  
  FORCE (pdf) - Pamphlet from the Facing Our Risk of Cancer Empowered, Inc. support group. This is non-profit group was created for women whose family history or genetic testing puts them at risk for getting ovarian and/or breast cancer. They also have a web site at: www.facingourrisk.org.
  
  Breast Cancer Connections - Link to an online resource dedicated to providing personalized information and support to people touched by breast cancer.
  
  Breast Cancer Network of Strength - Link to an online resource that provides information, empowerment, and peer support for anyone affected by breast cancer.
  
  What Are GYN Cancers (pdf) - Handout reviewing general information about cancers affecting the female reproductive system (cervix, uterus, ovaries, etc.).
  
  The Genetics of Breast and Ovarian Cancer: An Introduction - An online education program by the Kaiser Permanente Genetics Department covering genetic aspects of breast and ovarian cancer.  Total running time: 1 hour 20 minutes
  
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  Colon Cancer
  
  Hereditary Colon Cancer: Should you have genetic testing? (pdf) - Information about inherited cancer susceptibility genes and when testing is indicated.
  
  Colorectal Cancer: Immunohistochemistry (IHC) testing (pdf) -  Information about a type of tumor testing that helps identity individuals who may have hereditary colon cancer.
  
  Lynch syndrome (pdf) - Information about the most common type of hereditary colon cancer.
  
  Familial Adenomatous Polyposis (FAP) syndrome (pdf)- Information about a type of hereditary colon cancer
  
  Why Should I Be Tested For Colorectal Cancer (pdf) [Spanish version] - Information about routine screening for colon and rectal cancer.
  
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• GENETIC SCREENING PROGRAMS
  
  Ethnicity Based Screening 
  Genetic Carrier Tests (pdf)
  
  Canavan Disease: Everything you need to know about being a carrier (pdf)
  
  Cystic Fibrosis: Everything you need to know about being a carrier (pdf)
  
  Familial Dysautonomia: Everything you need to know about being a carrier (pdf)
  
  Tay-Sachs Disease: Everything you need to know about being a carrier (pdf)
  
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  Hemoglobinopathy Screening
  
  Alpha Thalassemia (pdf) [Chinese version] [Vietnamese version]
  
  Beta Thalassemia (pdf) [Chinese version] [Spanish version]
  
  Hemoglobin E (pdf)
  
  Sickle Cell (pdf)
  
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  Newborn Screening
  California Newborn Screening Program - Link to the California Department of Public Health web site. Site includes detailed information about the newborn screening program and the diseases included in the screening test.
  
  Important Information for Parents - Education material from the California Newborn Screening Program. Available in English, Spanish, Armenian, Cambodian, Chinese, Farsi, Hmong, Korean, Laotian, Russian, Tagalog, and Vietnamese.
  
  Infectious Disease Screening
  Hepatitis B Fact Sheet (pdf)
  
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• SPECIALTY CLINIC HANDOUTS
  
  Lipid Clinic
  Five-day Diet Record (pdf) - Form used to record all foods consumed over a five day period.
  
  Fiber Facts: Why fiber is important (pdf) [Spanish version] - General information about fiber in your diet.
  
  High Cholesterol? Here is What You Can Do (pdf) [Spanish version] - Information sheet about cholesterol and food choices that can help lower cholesterol levels.
  
  High Triglycerides? Here's What You Can Do (pdf) [Spanish version]- Information sheet about triglycerides and dietary changes that can help lower triglyceride levels.
  
  How Fats Compare (pdf) [Spanish version]- Information sheet about the different types of dietary fats and how to make healthy choices about fat intake.
  
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  Metabolic Clinic
  Three-day Food Diary (pdf) - Form used by the clinic to record your daily intake.
  
  Skeletal Dysplasia Clinic
  Dwarfism and anesthesia (pdf) - Medical article reviewing the physical differences in syndromes with dwarfism and the implications for anesthesiology.
  
  Spina Bifida Clinic
  Latex in the Hospital Environment and Home and Community (pdf) - Guide to some common objects containing latex in the medical setting as well as at home and in the community.
  
  Non-verbal Learning Disorders and Spina Bifida (pdf) - Reviews types of learning disorders that may be seen in children with spina bifida. Provides strategies for addressing learning disorders.
  
  Skin Care for Individuals with Spina Bifida (pdf) - Handout provides specific instructions on how to take care of your skin and keep it healthy.
  
  Smart Choice for an Active Lifestyle (pdf) - Booklet developed by the Spina Bifida Clinic; covers general nutritional information.
  
  

•  OTHER RESOURCES
  Bonding with Your Special Needs Child (pdf)
  
  Sibling of Your Special Needs Child (pdf)
  
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• RESOURCES IN SPANISH
  General Genetics
  Autorizacion para el uso o divulgacion de informacion medica (pdf)
  
  ¿Qué debe esperar de la consulta genética de su hijo por pérdida de audición? (pdf)
  
  Prenatales
  Pruebas prenatales para detectar defectos de nacimiento: información para ayudarle a decidir (pdf)
  
  Datos sobre la amniocentesis y CVS (pdf)
  
  Amniocentesis (pdf) 
  
  El muestreo de vellosidades coriónicas (CVS) (pdf)
  
  Ecografía durante el embarazo (pdf)
  
  Quistes de plexo coroideo (pdf)
  
  Pelvis renal dilatada (pdf)
  
  Foco ecogénico intracardíaco (pdf) 
  
  Arteria umbilical única (pdf)
  
  Ventriculomegalia leve (pdf)
  
  El ácido fólico en el embarazo (pdf)
  
  Cancer
  Exámenes de detección del cáncer del seno (pdf)
  
  ¿Por qué debo hacerme una prueba de detección del cáncer colorrectal? (pdf) 
  
  Lipid Clinic
  Información acerca de la fibra: por qué es importante (pdf)
  
  ¿Colesterol alto? Esto es lo que puede hacer (pdf)
  
  ¿Tiene un nivel alto de triglicéridos? Aquí le informamos qué es lo que puede hacer (pdf)
  
  Cómo se comparan los diferentes tipos de grasas (pdf)
  
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