How to Collect and Record Your Family Health History
Download our Family Health History Tool Kit or call 1-888-881-8852 for a paper copy
Where do I start?
The thought of taking your family history may seem overwhelming. There are many tools, discussed below, available to help. Start with talking to your parents and grandparents, if possible. Older relatives are often a great source of information. Respect the feelings of relatives who may not feel comfortable sharing their medical information with you. The holiday season, traditionally beginning with Thanksgiving, is a great time to start gathering information. Vacations, other holidays and family reunions can also be opportune times to discuss these issues with family members that you may not see on a regular basis. As each generation ages, opportunities and information will be lost. If you are adopted, you may be able to learn some of your family history through the family that adopted you or from adoption agency records.
For the beginnings of a written family history, lists of family members and their birth dates may be found in baby books, wedding albums, or sometimes a family Bible. It is helpful to collect medical records in order to confirm certain medical problems. Collecting documentation such as birth and death certificates can be done by contacting the County Clerk or Recorder of Deeds in the county where the event occurred. To obtain marriage and divorce records, contact the Recorder of Deeds or Circuit Clerk respectively in the county of the event. Obtaining the most accurate information is very important in order to make your family health history work for you.
Who and what?
You can start with writing down your own health history – be sure to check with your parents for things you might not know or remember from childhood. Next, move on to your siblings and children, as well as your parents. Going back one generation at a time, gather information on aunts and uncles, nieces and nephews, cousins and grandparents. Ask questions about their ages, dates of birth and death, and causes of death. Note medical problems like cancer (including what type), diabetes, heart disease, and stroke. Find out whether birth defects such as spina bifida or heart defects occurred alone, or were accompanied by other birth defects, learning problems, or mental retardation. Mental illness and alcoholism have a genetic component too, and are important to record. Include vision and hearing loss, especially those that occur at younger ages. Include the age, if possible, of each person when their medical condition began or was diagnosed.
Family History Tools
Recording your information
One way to record a family history is by drawing a family tree called a “pedigree.” This can be done by hand or by using various computer programs. There are many tools available to help you. The Surgeon General’s website includes an online tool, My Family Health Portrait, which allows you to save information on multiple family members, as well as drawing a family tree. It is available as a web-based program or can be downloaded and printed. It is available in both English and Spanish. The web-based tool can be completed online with data stored on the individual’s computer. A printable report includes a table of family health history and a drawing of a family tree. A print version can be downloaded from the website or mailed to you. The website has family history resources and materials for the general public and health professionals.
- My Family Health Portrait US Surgeon General, Department of Health and Human Services, Surgeon General’s Family Health History Initiative website: http://www.hhs.gov/familyhistory/
Other Family History Tools
- Does It Run in the Family? A Guide to Family Health History
This printable guide from the Genetic Alliance is a paper based tool that helps you gather, record and understand your family health history.
- NSGC Family History Tool
The National Society of Genetic Counselors has a family history page with instructions and guidelines you can read and print out.
- The Cancer History Guide
Myraid Genetic Laboratories, Inc. has on online tool to organize personal and family history of cancer. Data is not saved. Results should be printed at the end of the session.
- Family History Tools – Prenatal Genetic Screening Questionnaire, Pediatric Clinical Genetics Questionnaire, Adult Family History Form
Can be completed online and printed. Data is not saved. American Medical Association.
- Health Family Tree, University of Utah, Utah Department of Health: Paper-based tool to collect family health history. Conversion to an electronic tool is underway. Obtain copies by calling the Health Resource Line at 1-888-222-2542. Online resources for family history available from the Utah Department of Health at: http://health.utah.gov/genomics/familyhistory/toolkit.html
- Health Tree
Norwich Union – An interactive web-based tool that helps the user record family history information and learn about common hereditary conditions. Data is not saved. Can print report of family health history. No pedigree is generated. Includes information about each disease and links to other sites.
- The Heart of Diabetes Family History Tree – The American Heart Association (AHA) has an online tool that draws a family tree and allows you to make a record of heart disease and stroke risk factors, including diabetes, for your blood relatives. Requires free registration. Data is encrypted and not accessible to the AHA. If you have questions for your family members about their health conditions, you can send them an e-card from this site to get the answers.
- JamesLink: Personalized Cancer Risk Assessment
The Ohio State University Comprehensive Cancer Center and Multi Media Design, Center for Knowledge Development, College of Medicine Public Health. This is an interactive web-based tool that asks a series of questions regarding personal and family history of cancer. Data is not saved. Report can be printed. Algorithms estimate cancer risk based on patterns of cancer in the family. User classified as being at high, moderate or average risk. Family History-Based Interventions: A printable summary includes risk assessment and cancer screening and prevention recommendations. Counseling and assessment by genetics professional recommended for “high risk.” Call The James Line at 1-800-293-5066 with any questions or concerns.
- Medical Family Tree
The Munroe-Meyer Institute for Genetics and Rehabilitation and the Eppley Cancer Center of the University of Nebraska Medical Center have an online program to build a three-generation family tree. Can print out family history in table form and as a family tree (Macromedia Authorware Web Player needs to be installed to draw the tree). Algorithms assess family history and determine if there are features suggestive of hereditary cancer.
An interactive web-based tool that collects personal and family history of cancer, draws an annotated family tree, executes a cancer risk assessment, and provides personalized risk-based screening, behavioral, and referral information.
- Family Healthware™ Centers for Disease Control and Prevention have Aan interactive web-based tool that collects information on personal health behaviors and screening and family health history. Data is saved and stored in a database. Information can be updated as needed. Printable report includes drawing of family tree, familial risk assessment, and personalized prevention recommendations. Currently being evaluated in a clinical trial. Also available for licensure and research studies. Contact firstname.lastname@example.org.
Family Health History Toolkit
Download our Family Health History Toolkit or call 1-888-881-8852 for a paper copy
Family Health History Online Resources
CDC Family History: Resources and Tools
This comprehensive Family History web page, from the Center for Disease Control and the National Office of Public Health Genomics, has sections on Frequently Asked Questions, Fact Sheets, The Surgeon General’s Family History Initiative, Case studies, In the News, Presentations, Resources and Disease-Specific Links, Health Professionals, Teachers, Tools and Guidelines and State Activities.
US Dept HHS Family Health History
Visit the US Department of Health and Human Services’ Family History Home Page for information on the US Surgeon General’s Family History Initiative, My Family Health Portrait, a list of resources, frequently asked questions, and a guide for health professionals.
Visit the Genetic Alliance for Family Health History information and resources, including community centered Family Health History, the “Does It Run in the Family?” tool, as well as Disease InfoSearch, and a Guide to Understanding Genetics.
CDC Podcast: Family History: An Early Warning for Your Child
This 10-minute podcast, featuring Dr. Paula Yoon and Dr. Tracy Trotter discusses why a Family Health History is important for your child’s health, how it may be used by your doctor, and how to obtain a family health history.
Find a Genetics Professional
This comprehensive site lets you search for genetics clinics by geographical area.
National Society of Genetic Counselors
Resource Link allows you to search for a genetic counselor using your zip code.
CDC Disease-Specific Links
The Center for Disease Control, National Office of Public Health Genomics, lists links and resources for specific diseases and health conditions on this page.
Genetic Alliance Disease InfoSearch
This site provides an alphabetical list of specific genetic diseases, with links to support groups and public databases that have information on that disorder.