Family History Collection Tips and Tools

Family History Collection Tips

Use the attached forms to capture family cancer history. First determine who is in the family. Include at least parents, children, siblings, grandparents, aunts/uncles and first cousins. Expand to more distant relatives when it will help clarify patterns, or when there is an exceptional cancer history, such as very early age of onset or rare cancers. In addition to asking about cancer history, consider including other notable family history, such as birth defects, distinctive physical features, and intellectual disability or autism. 

As you ask about various relatives, keep in mind:

Family structure: 

  • Verify relationships, including half and step siblings, adopted individuals, and assisted reproduction with donor gamete.
  • Ask about both paternal and maternal sides of the family 
  • Include unaffected and deceased relatives which can modify risk calculations by a genetic professional
  • Don’t forget to ask about ancestry

Disease expression: 

  • When possible, clarify the location and type of cancer
  • Ask about the presence of bilateral disease or multiple primary tumors 
  • Indicate approximate ages of diagnosis and death 
  • Indicate whether significant environmental risk factors are present. 
  • Assess the family’s level of certainty about the diagnosis (ie. are they sure it was ovarian cancer and not cervical or another gynecologic cancer?)

Family History Collection Resources

There are different approaches to collecting family history information. Recording information in a pedigree can help you visualize patterns of disease more easily, which is one reason genetic experts prefer them. There are also online tools available that allow patients to input their family history information at home and print it out for you to review. Find a tool that helps you collect sufficient information and allows for updating, as family history information changes over time.

Collection Tools for Healthcare Providers

Pedigree Tool. A template to record a pedigree with standard pedigree nomenclature.

Family History Questionnaire. A collection form for medical family history data that can be printed and used in clinical practice.

Progeny Pedigree Tool. A free, online pedigree drawing program.

Targeted Colorectal and Polyp Family History Tool. Lists key questions and guidance for collecting a family history targeted toward colorectal cancer.

American Medical Association (AMA) Collecting a Family History. Provides downloadable prenatal and pediatric family history forms from the AMA, as well as other family history resources. 

Collection Tools for Patients and Families

U.S. Surgeon General's My Family Health Portrait. An online tool that patients can use to build and share a medical family history.

Genetic Alliance Does It Run in the Family? A Family History Tool. Customizable booklets about family history for a patient or community. 

Centers for Disease Control Gather and Share Your Family Health History. Contains information about the benefits of family history and what to collect.

National Society of Genetic Counselors: Understanding and Collecting your Family History.Provides information about how to collect a family health history. 

Family History Tool Features for PCPs Table (developed for The Jackson Laboratory, National Colorectal Cancer Roundtable, and American Cancer Society’s The Risk Assessment and Screening Toolkit to Detect Familial, Hereditary, and Early Onset Colorectal Cancer). A worksheet to review select family history collection and risk assessment tools by features of interest for primary care practice.

Global Alliance for Genomics and Health Family History Tools Inventory. A catalogue of family history tools available for documenting family health history information.

More Tips and Guidance for Family History Collection and Pedigree Drawing

Risk Assessment and Screening Toolkit. Provides guidance on setting up a system in your practice to help identify individuals at increased or high risk of colorectal cancer, and may be used for more general family history collection and risk assessment processes.

Core Principles in Family History. Identifies core principles in the collection and interpretation of a medical family history for all healthcare providers, developed by the National Coalition for Health Professional Education in Genetics (NCHPEG).

Family History Core Principles Slide Set. Teaches about inheritance patterns, genetic red flags, and risk assessment using didactic presentation and case studies to demonstrate concepts.

Updated November 2021