Many tools exist to help health providers collect, record, interpret, and communicate about family history information. This page contains a few of those tools. We provide this list for information only; El Camino, Genetic Alliance, and NCHPEG do not endorse any of these tools.
General Readings
Value of Family History
- The Value of Family History in the Prenatal Care Setting. A Grand Rounds webinar presentation by Siobhan Dolan developed by NCHPEG and partners for a project developing a risk assessment tool for the prenatal setting. Theslides are available on the NCHPEG website.
- Hudson KL. 2011. Genomics, health care, and society. N Engl J Med. 365:1033-41.
- Canavan N. Primary Care: You DO Need to Know About Genomics -- Here's Why. Medscape Today. 10/4/11.
Research on importance of family history and evaluation of tools
- Centers for Disease Control and Prevention. Family history public health initiative.
- NIH State-of-the-Science: Family History and Improving Health
Personalized Medicine
- El Camino Hospital. Frequently Asked Questions about Genomic Medicine.
- El Camino Hospital. The Power of Personalized Medicine.
- American Society of Human Genetics (ASHG). Six things everyone should know about genetics.
- National Human Genome Research Institute (NHGRI) FAQs about Genetic and Genomic Science
Family History Tools
Collection Tools
Electronic collection tools
These tools collect family history information systematically with patient-friendly interface on freely accessible websites. The tools can be completed by the patient at home or the provider in the office. The programs provide a final pedigree for printing that can be shared with the provider and incorporated into a patient’s chart.
Paper collection tools
These tools are designed to be filled out by the patient or provider during, or sometimes before, the visit. These provide information to the provider in a text based rather than graphical (pedigree) form.
- Genetic Alliance has developed a modifiable booklet for patients and community groups to collect and understand the importance of family history information.
- The American Medical Association has developed collection tools for different populations:
- American Heart Association. The Heart of Diabetes Family History Tool.
Tips and guidance for family history collection and pedigree drawing
A number of organizations have guides and aids to help providers draw pedigrees.
- NCHPEG Core Principles in Family History
- NCHPEG Family History Educational Aids
- National Society of Genetic Counselors Patient Aid
- Genetic Alliance. A guide to family health history
- American Medical Association. Family Medical History in Disease Prevention.
Interpretation and Risk Assessment
These are tools to help providers identify important risks within the family history. Some organizations have also developed schema to assign appropriate risk levels based on family history of specific conditions, such as breast cancer.
Global Risk Interpretation and Assessment
- NCHPEG Red Flags
- NCHEPG Interpreting Your Family History
- NCHPEG Assigning Risk Categories and Modifying Management
Condition-specific interpretation and assessment
- National Comprehensive Cancer Network. This group develops guidelines for many cancer-related subjects, including risk assessment for breast and colorectal cancer.
Communication
- NCHPEG Communicating About Risk
- NCHPEG Important Communication Skills
Risk Assessment Practice
- NCHPEG. Genetics for the Physician Assistant. Although originally developed for physician assistants, this case-based program covers the concepts of risk assessment and genetic testing in a patient-centered way, appropriate for providers of all types.