How to Share your Family Health History

How to Share your Family Health History

Nowadays families have so many ways to communicate: photos through text, videos on social media, chatting online, etc. But even with so much connectedness, families can forget to communicate about an important topic: their health histories. For many of us, this might be uncomfortable.  Where do we start?  What do we ask? As a genetic counselor who specializes in helping people collect their family health history, I’ll provide you with the information you need.

Why do I need my family health history?

People often wonder if family history is still important in the age of “genomic medicine.”  In fact, family history is more important than ever.  Genetic markers can help with risk assessment for some diseases, but how those genetics interact with the environment is what we can learn from taking a family history.  In addition, genetic testing is still very expensive for most individuals.  A family history may point to a certain genetic test that is relevant or identify a risk that should be monitored with additional screening.

Where do I start?

The first step to collecting family history is to write down all the family members you know.  Ask your parents or grandparents if there are family members who you are missing.  From there, you will want to begin to seek out information that will be useful to you and the rest of your family members.  Let’s break it up into sections:

  • Find your relatives:
    • You will want at least three generations: grandparents, parents, aunts, uncles, cousins and siblings
    • Ages of death
    • Do we know what they died from?
  • Collect reproductive history:
    • Did anyone have multiple miscarriages, stillborns or did not have children?
  • Note any common diseases:
    • Heart disease, diabetes, mental health concerns, autoimmune conditions
    • Blood conditions (examples: bleeding too much or had a blood clot)
    • Ages of onset can often be useful, too
  • Include cognitive information:
    • Intellectual disabilities, autism, learning difficulties, early loss of memory
  • Ask about genetic diseases:
    • Birth defects, early or unexplained death
    • Unusual features-much taller or shorter, large head size, unusual skin findings
    • Vision or hearing loss
    • Were the problems from birth or acquired?
    • Known genetic diseases may include Cystic Fibrosis, Sickle Cell Anemia or Huntington’s disease
  • Is there a family history of cancer?
    • What kind and ages of onset?
  • What is your family’s social history?
    • Smoking, were they around chemicals, alcoholism, etc.
  • What’s your heritage?
    • Ethnic background: What do you know about your ancestry?

At first glance, this list may seem quite daunting.  In most cases, you won’t be able to find all this information about all your family members.  The most important part is to spark a conversation. 

Is there someone who can help me?

When considering your family history, a genetic counselor is often the best resource you have to assess your history and make future recommendations.  We often will identify patterns or risks in your family history which could lead to additional questions to explore with your family members.  A genetic counselor is trained to be sensitive to the concerns that are noted and will take the time to answer questions related to those concerns.

There are great resources you can find online to help with collection of your family history.  A good place to start is www.aboutgeneticcounselors.com.  While these online tools may also seem intimidating, they can make the information more useful to you and your healthcare provider.  Once you have collected your family history, a genetic counselor can draw out your pedigree and discuss next steps.  From there, the genetic counselor will work with your primary care provider to develop a plan for future care. 

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