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.
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
Hereditary Blood Disorders
- 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
- Personal stories: living with familial hypercholesterolemia
- Familial Hypercholesterolemia: Shining Light on a Serious Genetic Condition. K. Wilemon, August 2018
Newborn Screening Conditions
General: Family Health History
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.”
To find more personal stories, search the CDC Public Health Genomics Knowledgebase using words such as “story” or “stories.”
We will update this page on a regular basis. Please provide your feedback by emailing us at firstname.lastname@example.org.