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Family Health History

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Family health history is often called the first genetic test. Among other things, it is an accessible tool that does the following:

  • Captures information on heredity, diet, and environment in one resource

  • Identifies trends and patterns of disease that may lead to treatment or prevention

  • Increases health and genetics knowledge for the individual as well as the whole family

Family health history tells more than just what diseases run in a family. It includes information about where the family has lived and what kind of work and activities they do. This tool can help families and physicians alike see potential health risks and plan a course of action. Healthcare providers play an essential role in helping individuals and families understand these risks, develop plans for prevention, and make healthy choices.

Family Health History Programs: Past and Present

For more than 15 years, Genetic Alliance has spearheaded an effort to promote family health history awareness and discussion both in communities and the healthcare setting. Genetic Alliance partners with diverse communities—including disease-specific organizations, federally-funded health centers, universities, advocacy organizations, community-based groups, and others—to create tailored family health history tools. Our work shows that accessible tools produced by the community, for the community, can promote conversations about health within the family and with healthcare providers; translate knowledge of family health history into healthy choices; and increase community involvement in health education.

Does It Run in the Family?

The Does It Run in the Family? toolkit includes two complementary booklets, “A Guide to Family Health History” and “A Guide to Genetics and Health.” The first booklet describes the importance of family health history and the ways your genes affect your health. It details the information that individuals should collect when compiling a health history and offers tips for asking family members about their health. It also explains how to organize the information to share with family members and healthcare providers. The second booklet goes more in-depth into the role genetics plays in your health, explaining why some diseases run in families and why it is so important for a physician to be aware of a patient's family health history. The online version of the toolkit allows users to customize the booklets for their family, organization, or community to help start conversations about health. Visit www.familyhealthhistory.org or email info@geneticalliance.org to customize your own Does It Run in the Family? toolkit. 

Dozens of organizations customized the toolkit as part of the Community Centered Family Health History and Family Health History Integration into Federally-Funded Health Centers projects described below. In the community setting, partners worked with local churches, gyms, schools, and other groups to facilitate multigenerational conversations about health and emphasize the value of different types of caregivers, such as families, community-based organizations, and support groups. In the clinical setting, community health centers used various models – including projects led by nurses, case managers, and health educators – to increase collection and use of family health history information by providers and staff. Visit www.familyhealthistory.org for more information on the Does It Run in the Family? toolkit. Click the following links to download the Spanish versions of "A Guide to Family Health History" and "A Guide to Genetics and Health."

Family Health History Across the Lifespan

The Pregnancy & Health Profile is a tablet PC-based tool that collects family health history plus pregnancy risk factor information and generates personalized risk assessment messages and point-of-care educational material for prenatal providers and their patients. The tool is the product of a collaboration with the National Coalition for Health Professional Education in Genetics (NCHPEG), March of Dimes, Harvard Partners, and HRSA. Visit NCHPEG to download the Pregnancy & Health Profile for free.

A similar tool is currently being developed through a collaboration with the Genetics in Primary Care Institute to improve pediatric care, especially related to genetic testing and family history screening. Genetic Alliance’s contributions to both tools focus on patient education and the user experience.

Community Centered Family Health History Program Awards

In 2008, Genetic Alliance released an RFP for organizations to use an online tool to customize the Does It Run In the Family? toolkit (described above), including “A Guide to Family Health History” and “A Guide to Genetics and Health.” Awardees used the toolkit within existing programs and initiatives to integrate conversations about family health history seamlessly into diverse communities across the country. The project officially ended in 2009, but many partners continue to use the family health history materials in their programs today. A list of winners can be found in our History and Archives section.

Family Health History in Health Centers

In 2010, Genetic Alliance distributed six Family Health History Patient Education Toolkit: Health Center Program Awards to provide the foundation for an innovative, customizable strategy for integration of family health history into diverse health centers nationwide. Clinics carried out their projects from May 2011 to July 2012, and many continue their family health history work today. 

More Family Health History Resources

Genetic Alliance developed a collection of resources to guide you through the steps of collecting your family health history and sharing the information with your family and healthcare provider. Visit www.genesinlife.org for more information on the importance of family health history and more great tips and resources for collecting and sharing your health history.

It can be hard to know what questions to ask when collecting a family health history. Genetic Alliance developed a Family Health History Questionnaire to guide you through conversations with your family. This tool can also be a good resource for family members that might not be comfortable discussing their health information in person or over the phone. 

Your family health history information can help your healthcare provider make important decisions about your care so that s/he can help reduce your risk for disease and manage any health conditions you have. Once you collect your family health history, filling out the Healthcare Provider Card is an easy way to share this vital information with your provider. One side of the card focuses on concerns you have about your family health history. The other side has resources for your provider on how to best use your family history information to determine your risk of getting a disease.

Sharing a diagnosis with your family and loved ones can be difficult. Genetic Alliance, in partnership with Genzyme, created a series of booklets to help you share your own health information with your family. These booklets focus on specific genetic disorders - Pompe, Gaucher, and Fabry diseases - but the basic approaches and strategies described can be used when you talk about your health with your family, regardless of what condition(s) you have. For more information, see our Sharing Diagnosis section.

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