Creating and Understanding a Family Health History

Your guide to putting the family pieces of your own health puzzle together
Creating family health history
Family Health History

By providing a personalized assessment of your potential risks for various diseases, a family health history can help you and your doctor develop personalized disease prevention plans. This article provides a guide to putting together the family pieces of your own health puzzle.

To start, defining “family health history” is important. A family health history is a record of health information about a person and close relatives. Who is a "close relative?" A complete record typically provides health information from three generations of relatives: children, grandchild, siblings (including half-siblings), parents, aunts and uncles, nieces and nephews, grandparents, and cousins.

Families often have a historian — that one relative who can tell you the middle names of every relative or who pulls out the family anthology at family get-togethers. This person is also likely to have the health details on various family members, be it Aunt Betty’s chronic bunions or Uncle Andy’s gout. Admittedly, while bunions and gout may be of little to no importance to your personal health, many other conditions certainly can be.

What Conditions Do I Ask About?

The National Society of Genetic Counselors offers a list of information worth gathering. This includes:

Age or date of birth; cause of death for those who have died

Medical problems and approximate age of onset for conditions such as:

  • Cancers occurring under age 50
  • “Rare” or “aggressive” types of cancer
  • Ten or more colon polyps
  • Sudden, unexplained death under the age of 50
  • Cardiac interventions (e.g., pacemaker, implantable defibrillator, cardiac bypass surgery, heart transplant) under the age of 50
  • High “bad” cholesterol (LDL), heart attack or stroke under the age of 50
  • Fainting or seizures with exercise, excitement or startle that had no identified cause
  • Autism or intellectual disabilities
  • Physical defects (spina bifida, cleft palate, heart defects, etc.)
  • Cancer conditions
  • Cardiac issues
  • Neurological, muscular or skeletal anomalies
  • Diabetes
  • Kidney or liver disease
  • Vision or hearing loss at a young age
  • Abnormal sexual maturation, delayed puberty or fertility issues, including tests for infertility, multiple pregnancy losses or babies who died in infancy
  • Mental health issues
  • Unexplained medical conditions
  • Early deaths due to known or unknown medical conditions

For those who have medical concerns, collecting circumstantial information is helpful, such as whether they smoke, exercise, are overweight, etc.

Is it likely you will obtain all of this information on every one of your relatives? No. Are you expected to do this in a single session? No. But it may give you a reason for multiple get-togethers with your Aunt Sue over a slice of her killer apple strudel.

A pedigree is a genetic representation of a family tree that diagrams the inheritance of a trait or disease though several generations. The pedigree shows the relationships between family members and indicates which individuals express or silently carry the trait in question.

The above list is meant as a guide to give you a sense of the type of information medical professionals find helpful to know about. It is not meant as a to-do list.

How Will My HealthCare Provider Use This Information?

Certain factors in one’s family history — early age of onset and multiple family members with the same condition, for instance — can suggest a higher likelihood of developing certain conditions. Early identification of risk factors allows you and a health professional the opportunity to take steps to reduce your risk. Sometimes this means making lifestyle changes, and sometimes it means increased monitoring and testing. 

Other conditions are strictly genetic and have a more significant impact on your risk of recurrence. Knowing this may influence what you do with this information, be it in terms of educating yourself, obtaining life or disability insurance, or deciding if and how to pursue a pregnancy.

What If I Don't Have Access to My Family Health History?

Sometimes you may just never have access to family health information. Sometimes a person is estranged from their family. A person may be adopted and not know the birth family’s history. Medical conditions may not be openly discussed among relatives. 

While knowing your family health history can empower you to take better control of your own health, there is still a lot of preventive care you can pursue without this information. 

The U.S. Department of Health and Human Services has health screening recommendations for men and women of all ages. In addition, multiple companies offer the option of proactive genetic health screening.

Shanon Wieloch, MS, LCGC, is a reproductive health genetic counselor at Genome Medical.

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