By: Samantha Vergano, MD, FACMG, FAAP
Has your pediatrician ever asked about diseases that you and your blood relatives had? Since some health risks run in families, questions like these help your child's doctor understand the full picture behind your child's health.
Here's why your family's health history matters—and a step-by-step guide to bringing all the facts together your child's health team needs.
What is a family health history? Why should we have one?
A
family health history is a detailed record of diseases and health conditions family members have experienced. It's important because you and your family members share genes that have been passed on to your child.
Relatives might also have shared behaviors that affect health—think food preferences and exercise habits. These details can help your pediatrician explore the roots of inherited conditions and family practices that either help or hurt lifelong health.
Keep in mind that health risks aren't only a matter of family genes or patterns. Still, inherited risks are very valuable in making health decisions. In fact, this information can help children even before they're born! For example, newborns at risk for some congenital heart defects can be examined and, in some cases, treated soon after birth.
How can I create a family health history?
The task of gathering health information might feel overwhelming at first. Consider using free online tools to help you get started. This
digital history from the American Medical Association lets you enter and store information securely. This
printable health history from the March of Dimes is easy to use and share with others.
First, fill in your own health history.
Give details on illnesses, injuries or surgeries you have had and when they happened. Information about how you were treated will be helpful, too. Be sure to include both birth parents. (See below for tips on collecting health histories for adopted children.)
Reach out to relatives.
Gather health details from people related to your child by blood. This might include your parents, your siblings and half-siblings, your grandparents, aunts, uncles, nieces, nephews and first cousins.
Aim to create a clear picture of your family's experiences, but don't worry if you can't capture every detail. Your child's health care team will benefit from everything you can find and share. Keep in mind that genetic testing for many conditions may not have been available for many generations prior to the turn of the century.
Take advantage of family gatherings.
Many families get together for holidays, birthdays, annual reunions and more. Ask your relatives ahead of time if they would mind spending a few minutes talking about their health with you. Let them know why you're asking and how much you appreciate their support.
Try to go back at least 3 generations.
The more you and your pediatrician know about inherited risks, the better. You may not have access to information on relatives who have died, but you can consider asking living spouses and other family members for help.
What if family members don't want to talk about their health?
Health issues can dredge up difficult feelings. Be prepared for some family members to feel uncomfortable when you ask about their medical histories. It may help to reassure them that you're coming from a non-judgmental place. Your goal is to protect your child's future health by knowing as much as you can about past health concerns.
It may also help to confirm that all information will be kept confidential. The health history you share with your pediatrician (and other health providers) is protected by federal laws that guarantee privacy and confidentiality.
What if adoption is part of my family's story?
If you adopted your child—or were adopted yourself—there may be major gaps in your family health history. Adoption records might not include facts about illnesses your child's birth parents and other relatives experienced. If you are an adopted child, you may face even more hurdles in looking for the medical histories of your blood relatives.
Enter the information you have, and consider how you can
expand what you know. For example, you can contact the agency that handled the adoption or request anonymized medical records for blood relatives. Here are
more helpful tips on collecting health data when a child or parent is adopted.
Will I need to update our family health history?
Keeping your family history current will give your child's health team the best possible information to work with. For example, if a relative has a heart attack or develops cancer after you've done your first round of research, it's a good idea to add this to your family history. The information will help your pediatrician understand your child's overall risks for those conditions.
Should my child get genetic testing?
This isn't a "yes" or "no" question, since health concerns often depend on more than genetics. For example, testing might reveal a risk that never leads to illness, because other causes besides family history must be present.
Still, there might be reasons to consider inquiring about genetic testing. Some parents feel they need to know their child's health risks to prepare for the possibility of serious illness.
However, it's important to know that we don't yet have tests for every major health condition. You'll also want to consider how you might feel if tests show your child does have elevated risks for a specific disease. Knowing this could trigger
unhealthy anxiety for you and your child.
Also, some genetic tests for adult-onset conditions are not recommended for children, particularly some cancers. Ask your pediatrician if a referral to a genetic counselor is reasonable to discuss these questions.
Considering risks & benefits
Talk with your child's doctor about the risks and benefits of genetic testing. Learn about genetic counseling, a service that offers information and support to families at risk of developing inherited conditions.
As always, keep in mind that your pediatrician isn't there to judge you or tell you what to do. You can depend on your child's doctor for guidance and support as you make important choices about family health and well-being.
More information
About Dr. Vergano
Samantha Vergano, MD, FACMG, FAAP, is Chair of the American Academy of Pediatrics Council on Genetics. She served as division director of genetics and metabolism at the Children's Hospital of The King's Daughters in Norfolk, Va., before joining Seattle Children Hospital as associate medical director for outpatient services in genetic medicine in 2024. Dr. Vergano created a natural history registry for
Coffin-Siris syndrome and related disorders, which has enrolled hundreds of individuals. She enjoys teaching medical students and playing an active role in patient advocacy.
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