When it comes to genetics, it’s not all about you; your entire family’s health history is important. There are many health conditions where someone’s risk to also develop that condition is determined by their family history. Because of this, it is important to try to gather as much information about your family health history as possible.

Who do you need to know about?

In general, it’s good to have information about your kids, grandkids, brothers and sisters, nieces and nephews, parents, aunts and uncles, cousins, and grandparents. Any information for relatives beyond that may also be helpful to have, particularly if they have any known health issues. It may be helpful to write this information down to have record of it and to share with other family members.

What do you need to know?

Any health condition is good to note, but pay extra attention to anyone with:

• A genetic condition (like cystic fibrosis, Tay Sachs, or sickle cell anemia)
• A chromosome condition (like Down syndrome, trisomy 18, or Turner syndrome)
• Intellectual disability/delay
• Birth defects (cleft lip and/or cleft palate, club feet, heart defect, etc.)
• Loss of sight and/or hearing from birth
• Babies that passed away at birth or during infancy
• Unexplained childhood illnesses or deaths
• Multiple miscarriages (three or more)
• Infertility, or unable to have children
• Cancer
  • Important to note the type of cancer (breast, colon, uterine, etc), and age of diagnosis
• Heart attack at an early age (before age 55 in men and before 65 in women)
• Ethnic backgrounds
  • Some genetic conditions are more common in certain ethnic backgrounds, so it is important to try to find out what country your family comes from originally
• Other health conditions that seem to run in your family that you are curious or concerned about

What is a pedigree?

In genetics, family history information is recorded in a diagram called a pedigree:

In this diagram, circles represent women and squares represent men. Drawing out your family in this way can help identify patterns and provide a clearer picture of any health issues running in your family.

What if I don’t know anything about my family history?

There are many reasons that someone may not have a lot of information about their family history: adoption, family dynamics, people move to different parts of the country and fall out of touch, etc. To get a full picture of someone’s risk for various health problems, it is important to have as much information as possible. When practical, it may be helpful to reach out to family members, or in cases of adoption, contact the adopting agency to see if there is any health information on file.

How do I go about this?

Having these conversations with relatives can be challenging at first. It may be helpful to begin by talking with a family member that you feel comfortable with to start gathering information. Talking to other relatives can help to fill in any gaps in information. It is important to feel as comfortable as possible having these conversations. One way to engage family members may be to point out that once all of this information is gathered in one place, it will be beneficial to everyone in the long run.

The March of Dimes has a general family history form that may be helpful to use to start gathering all of this information.

I finally got all of this information together! Now what?

• Keep a copy in a safe place
• Share it with your doctor
  • If you are concerned about anything that you’ve learned in your family history, you can reach out to a genetic counselor. Find one here.

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