Whenever you see a new healthcare provider, you will probably be asked to fill out paperwork about your family’s medical history. Questions like, “Does mental illness run in your family?” and “Is there a history of cancer in your family?” are not meant to be nosy, but instead to inform both the testing for a potential diagnosis and treatment options.
Getting your family medical history information together can sometimes take time and skill due to the stigma around certain mental and physical conditions and difficulty locating old records.
Here, we arm you with information and resources to get you started.
What Your Family Medical History Can Show
Various health conditions have genetic components or at least are more likely to run in families. Different ethnic groups may also have a higher risk of developing certain health conditions than others.
Examples of Conditions with a Genetic Component:
- Breast Cancer. If you know breast cancer runs in your family, you can get tested for the BRCA gene, which is a mutation in one of the breast cancer genes. If you test positive, this may influence early and/or more frequent testing for breast cancer. According to the National Cancer Institute, 55%–72% of women who have the BRCA1 variant will develop breast cancer; 45%–69% of women who have the BRCA2 variant will develop breast cancer.
- Type 2 Diabetes. If you know Type 2 Diabetes runs in your family, talk with your healthcare provider about steps to reduce your risk of developing this chronic health condition. One of these steps could involve working with a nutritionist to evaluate your diet. A helpful strategy, per the American Heart Association, may be keeping track of what you eat in a log.
- Heart Disease While there may be some heredity components to heart disease, the Centers for Disease Control and Prevention (CDC) notes there are many ways to reduce your risk such as not smoking and taking care of high blood pressure and your overall health.
- Autism Spectrum Disorders (ASDs). Genetic factors contribute between a 40 to 80 percent chance that someone has autism. SPARK—a landmark autism research project—has shown that likely hundreds of genes play a role in autism. (View the SPARK gene list with detailed gene guides or the SPARK gene list.) The sooner children with autism are diagnosed, the sooner they can receive the support to help them thrive.
- Attention-Deficit/Hyperactivity Disorder (ADHD). Like autism, the earlier a child is diagnosed with ADHD, the sooner they can receive support and accommodations to help them succeed. ADHD can run in families, and the possibility of someone having this condition is nine times greater for people who have first-degree relatives who live with ADHD.
Talking with Your Family
While having various physical and/or mental health conditions is nothing to be ashamed of, it can be difficult for some members of your family to talk about their health due to stigma. However, knowing family health histories help everyone in your family.
Questions to Ask Your Family About Their Health:
The CDC recommends asking the following questions:
- Do you have any chronic diseases, such as heart disease or diabetes, or health conditions, such as high blood pressure or high cholesterol?
- Have you had any other serious diseases, such as cancer or stroke? What type of cancer?
- How old were you when each of these diseases or health conditions was diagnosed? (If your relative doesn’t remember the exact age, knowing the range is still useful.)
- What is your family’s ancestry? From what countries or regions did your ancestors come to the United States?
- What were the causes and ages of death for relatives who have died?
Based on your conversations, the next step would be to create a family history template for use at future appointments.
What to Do If You’re Adopted
If you’re adopted, knowing your family’s medical history can be complicated, especially if you were adopted through a closed adoption. People adopted from other countries may face even more barriers. While no route is perfect, here are some avenues that you could pursue to learn more about genetic risk factors that you may have.
- State Agencies. Depending on which U.S. state you were adopted from, there may be an agency where you can gather your birth parents’ medical history. For example, Indiana has a Medical History Registry where adoptees, who were adopted after 1986, can request records.
- Genetic Testing. Genetic testing looks for changes in your DNA that can inform your medical care. No matter where you were adopted from, genetic testing could help you piece together some of your family’s health history. The CDC reports clinical genetic tests are different from direct-to-consumer (DTC) genetic tests, which can give some information about medical and non-medical traits. DTC test results can be used to make decisions about lifestyle choices or provide issues to discuss with your doctor.
How to Create a Family History Template
When it comes to submitting your family history to your healthcare provider, you will likely be filling out a physical or electronic form. Often, this is a standard operating procedure if you’re a new patient anywhere.
The free website, My Family Health Portrait, can get you started. You can update it over time as you learn more about your family’s health history.
Effective Family History Information:
The American Medical Association recommends the following:
- First, second and third-degree relatives
- Ages for all relatives who are alive
- Ages of when deceased relatives died
- Ethnicity, as some genetic conditions are more common in some ethnic groups
- Presence of chronic diseases
Knowing your family health history and sharing it with your healthcare provider allows for a more comprehensive approach to treatment and care.
- Family Health History: The Basics (Centers for Disease Control and Prevention)
- Does the HIPAA Privacy Rule limit what a doctor can do with a family medical history? (U.S. Department of Health & Human Services)
- Frequently Asked Questions About Genetic Disorders (The National Human Genome Research Institute)
- Genetics Home Reference (US National Library of Medicine) - Provides consumer-friendly summaries of genetic conditions.
- The Genetic Science Learning Center (University of Utah) - Offers interactive tools about disorders that run in families.
Tracing the illnesses suffered by your parents, grandparents and other blood relatives can help your doctor predict the disorders to which you may be at risk, and help you take action to keep you and your family healthy.
When people know how likely they are to get a disease, they may take steps to prevent it or find it earlier, when it’s easier to treat, finds Suckiel and colleagues (2022). Notably, the majority of participants in their study said they’d prefer to receive results in person and in plain language.