National Society of Genetic Counselors : Blogs : How to Share your Family Health History

National Society of Genetic Counselors : Blogs


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.....