Tools & Resources for Families
The American Society of Human Genetics (ASHG)
ASHG & Genetic Alliance:
"Guide to Understanding Genetics" - This guide for patients/families and health care practitioners covers basic information about genetics concepts and provides in-depth explanations about genetic conditions, newborn screening, family health history, genetic counseling, and the different types of genetic tests and their applications.
"Does It Run
in the Family?" Customizable Toolkit - This toolkit is a set of two booklets ("A
Guide to Family Health History" and "A Guide for
Understanding Genetics and Health") that
explain the importance of family health history, how to collect family
health history information, and common health conditions that can run in
families. The brochures provide simple step-by-step instructions for
collecting and compiling a family health history. The booklets have been
customized by more than 20 organizations and communities so far, and are
available in English and Spanish.
"Does It Run
In the Family?" Customizable Toolkit (Web version) - The online version of this toolkit allows users (including individuals, organizations and communities) to customize the booklets for their families, communities, groups and organizations by adding personal health stories, photos, quotes, and information and resources on specific health conditions.
Healthcare Provider Card - Fill out this card and bring it to your health care provider as an easy way for you to present your family health history information to your doctor. One side of the card concentrates on concerns you have about your family health history. On the other side, there is information for your doctor on how to interpret and use your family history to determine your risk of getting a disease. Fill it out and bring it with you to your next visit.
U.S. Surgeon General's Family History Initiative
Family Health Portrait" Tool - This online tool helps you create a personalized family health history report. The tool generates a drawing of your family tree and a health history chart based on the information you enter. The drawing and chart can be printed and shared with family members and health care providers. This resource is available in both English and Spanish. The Surgeon General also offers a paper-based version of this tool.
- Disease-Specific Health Risk Information Fact Sheets - The Surgeon General's Office also created a series of disease-specific health risk fact sheets that can be used as a tool to help facilitate conversations between health care professionals and their patients about common health conditions that run in families:
This site offers a free, interactive web-based tool that helps users collect and organize their family health history information. Users enter their information into the online tool to create a drawing of their ‘family tree' that can be shared with health care professionals to help determine disease risk. The site also features a series of
"How To" Videos, FAQ's, and a Family Health History Blog that features a post titled,
"Family History vs. Genetic Testing" – all of which provide a wealth of information on the topic of family health history and how it can impact your health and disease risk.
CDC National Office of Public Health Genomics (NOPHG)
National Library of Medicine (NLM): Genetics Home Reference
An online guide to understanding genetic conditions that provides consumer-friendly information about the effects of genetic variations on human health and disease risk.
Genetic and Rare Diseases Information Center (GARD)
GARD is a collaborative effort of two agencies of the National Institutes of Health (NIH), the Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) to help patients, families, and health care providers find useful information about genetic conditions and rare diseases. [To contact GARD experts by phone: Call 888-205-2311; M-F, 12pm-6 EST.]
National Human Genome Research Institute (NHGRI/NIH)
The NHGRI Web site features a number of great resources, including a slide presentation titled,
"Your Family Health History" that provides information about family health history, and how to document it in the type of chart used by doctors to keep track of their patients' family medical histories (also known as a
"pedigree"). This presentation will also help consumers get a better understanding of what a pedigree is, how it is used, and how to create your own.
- Video Clip:
"Family History: A Window on Your Health" - In this video, former NHGRI Director (and current Director of the NIH), Dr. Francis Collins, discusses the importance of family history in an interview with Dr. Greg Feero.
American College of Medical Genetics (ACMG)
The ACMG Web site features family health history information and resources for the general public and for health care practitioners on their public education Web page.
National Society of Genetic Counselors (NSGC)
The NSGC offers information for consumers about family health history and genetic disease on the
"Your Family History – Your Future" section of their Web site. The NSGC Web site includes a searchable online database called ResourceLink that was developed to help people locate genetic counseling services in their local area. Genetic counselors can be searched by city, state, counselor's name, institution, and areas of practice or specialization. The NSGC Web site also features the following resources for consumers:
This Web site provides consumers and health care providers with educational information and software tools to help them understand and assess genetic risk of common diseases, such as cancer and heart disease. The site also features a wealth of information about genetic counseling, and other topics related to genetics and health:
Connecticut Department of Health: Office on Public Health Genomics
The Connecticut Department of Health produced a Family Health History Workbook, Pocket Guide, Poster, and other free educational materials for the general public. To order print copies of the family health history pocket guide, poster, or workbook, please send an e-mail with your request to firstname.lastname@example.org, or call 860-509-8000. You can also download PDF files of these materials by accessing the links below:
University of Utah Genetic Science Learning Center:
"Using Family History to Improve Your Health"
The Web site for the University of Utah's public education program on
"Using Family History to Improve your Health" features information and resources that help people understand how genetics affects their lives, and its implications for society.
Utah Department of Health: Chronic Disease Genomics Program
The Utah Department of Health Genomics Program offers a free Family Health History Toolkit for the general public. You can download a PDF of the entire Family Health History Toolkit (PDF), and you can also find other materials and resources to help you collect your family health history information on their site:
Washington University School of Medicine: Your Disease Risk Tool
Developed over the past ten years by medical experts, Your Disease Risk is a free informational resource that collects the latest scientific evidence on disease risk factors and compiles it into an easy-to-use online tool for consumers. This Web site will allow you to find out your risk of developing five of the most common diseases in the U.S. and get personalized tips for preventing them. The five diseases featured in the tool include the following:
University of Cincinnati Genetic Counseling Program
The Web site for the University of Cincinnati's Genetic Counseling Program features a number of useful disease-specific resources, including two Family Health History fact sheets:
Disease-specific Fact Sheets:
This Web site contains a wealth of disease-specific resources related to family health history, including the following fact sheets and brochures:
The Center for Medical Genetics:
MyGenerations is an interactive web-based tool that helps consumers collect personal and family health history and draw an interactive family tree to determine your risk of developing cancer. You can print and share the report with your health care provider to develop an individualized plan for early cancer detection and prevention.
Heartland Regional Genetics Collaborative Family Health History Project
The Web site for this community outreach initiative features a number of helpful tools and resources for families, including a
"Family Health History Toolkit" (PDF) that offers a step-by-step guide to collecting and compiling a family health history. The
"Family History Tools" page of the site provides details about the type of information to collect, and how to obtain it.
National Human Genome Center at Howard University
The Consumer Genetics Education Network program at Howard University offers an interactive handbook on family health history titled,
"Family Health Matters: The Importance of Family Health History," which contains valuable information for individuals of African American descent. The Center's Web site also features materials that help explain how the interplay between genetics, race/ethnicity, and the environment may affect your health, along with the following resources of interest:
University of Kansas Medical Center: Genetics Education Center
This site features a comprehensive set of links to helpful online
"Pedigree Analysis/Genetic Family History" resources that will help users draw a family history chart (pedigree), which is a shorthand method of documenting and identifying patterns of disease inheritance in families, and identifying those at risk for developing genetic health conditions.
"How to Compile Your Medical Family Tree"
This resource provides consumers with information about the importance of knowing your family's medical history, as well as a simple step-by-step guide to compiling a family health history tree to share with doctors.