My Thanksgiving Appeal: The Importance of Family Health History
This coming Thanksgiving (2012) will be the 9th annual National Family History Day, a day on which families typically gather together and are encouraged to openly discuss their family health history, so this important information can guide family members and their physicians in making appropriate screening and management decisions.
Why is family health history important, you ask?
Whenever you meet with a genetics professional, they will take a family history, or pedigree.
For a genetic counselor or a medical geneticist, the family history is a crucial evaluation. In some cases it is your baseline health screening. In other cases, it helps to identify whether or not there is a concerning pattern in the family of individuals being affected with similar or related conditions. Family history risk assessment is a critical tool in my arsenal, and is much quicker and extremely less expensive than genetic testing. It often indicates to us which gene or genes should be tested, who in the family should be tested, and when genetic testing is unavailable, our reliable family history still provides us with guidance regarding possible genetic and health risks in the family and helps us determine if a condition in question is isolated or identify who else in the family is at risk.
The downside of using family history as a unique and vital screening tool is that most individuals are terrible historians. There are many reasons for this. Families rarely sit down together and talk about their medical problems. “Cousin Sarah is quite ill. She was diagnosed with something. Maybe it was cervical cancer. Maybe it was ovarian cancer. Maybe it was an infection, I’m not quite sure.” “My sister had a baby who passed away, but I’m not sure why. They never explained if the baby was sick or what happened exactly.” This is often for the benefit of the individual who is ill, so that he or she retains some privacy.
Many families are secretive about their medical issues. It is not uncommon to not know medical information about parts of the family that one is not in contact with anymore. “I have 4 brothers and sisters, but I only talk to my brother Jeff. I don’t know if my other siblings are healthy.” “My mom has 3 sisters, but we don’t talk to Aunt Susie or Uncle Ben’s families. I’m not even sure how many kids they have.” Sometimes the affected family member is far away, in another state or country perhaps, and it is difficult to find out what exactly happened. It is not uncommon to have limited information about their family health histories, even though this information is valuable and could have far reaching implications for individuals and their families.
Use the following steps to ensure that your family health history is accurate and up to date.
1) Start by creating a family tree. List all of your relatives starting with your children, your siblings, and your parents. Then list your grandparents, each of your parents siblings (your aunts and uncles), and their children (your first cousins). Add on new family members as they are born.
2) Record the medical history for each individual. Indicate the medical issues for each individual, including the specifics of the diagnoses as well as the age of diagnosis. For those family members who have passed away, indicate the age at which they passed away as well as the cause of their deaths.
3) Update your family history at a set time each year. It’s possible for a variety of reasons that you will not be notified when something has changed in your family’s health history. Set a time once a year when the family is gathered together to discuss and record the family health history.
The CDC’s Office of Public Health Genomics collaborated with the U.S. Surgeon General and other federal agencies to develop a Web-based tool called “My Family Health Portrait” https://familyhistory.hhs.gov/fhh-web/home.action. This online resource is designed to help individuals record their family health history.
Your “family history day” doesn’t need to be Thanksgiving, but be sure to set a day each year to openly discuss your family health history and record it so that this vital information can be available to help direct you and your family’s healthcare and management.