Real Stories

The Power of Personal Stories for Communicating Genomic Information

Have you wondered if you should talk to your doctor about your family health history? Are you concerned about developing a disease, given your family health history? Have you considered taking a genetic test or having a medical procedure based on a genetic test? Have you wondered if you should share your health history or test results with family members? Are you living with a rare genetic condition or have a child with a genetic disease? Do you have cancer that has been treated with medications that are tailored to your tumor genetic profile? Answering “yes” to any of these questions might create stress and confusion. But there’s power in hearing personal stories from others dealing with similar issues.

Read Sarah’s story. Sarah is BRCA1 positive and a breast cancer survivor.

Public health genomics seeks to ensure that genomic/genetic technology and science can benefit everyone. In many cases, family health history, genomic tests, and precision medicine can save lives. This often involves talking about these issues with a health care provider and family members. Genomic information can seem overwhelming since the field is relatively new, involves complicated information from many sources, and pertains to serious health issues and decisions.

Sharing stories about people and their health issues can be one of the most effective ways to communicate the importance of genomic information. People can easily understand and relate to actual experiences. The following stories, collected from CDC and other sources, are powerful examples.

Hereditary Breast and Ovarian Cancer

CDC Bring Your Brave Campaign
Sarah and Elissa: two stories of breast and ovarian cancer

Hereditary Colorectal Cancer

Amy, Dave, Georgia and Zach: living with Lynch syndrome and colorectal cancer
Personal stories: screening colorectal cancer

Birth Defects and Developmental Disabilities

Real family stories: living with birth defects

Learn from Dave's experience. He and his son Zach have Lynch Syndrome.

Geno and the Green family: two stories of living with Sickle Cell disease
Rahul and Aaron: two stories of living with Thalassemias
Jane and Sonji: two stories of living with Hemophilia

Health Impact

To read studies on how stories involving genetic issues impact the health-related behaviors of others (most of these have focused on the experiences shared by celebrities) search the CDC Public Health Genomics Knowledgebase using terms such as “Angelina Jolie.”