Unearthing The Past That Could Affect Your Future:

How Family Health History Could Change Your Life

By Bailey Kamp

Blood and lineage have been of great importance for various reasons throughout history. They have been used to determine royal birthright, the line of succession, titles, and inheritance. A good pedigree opened a lot of doors. While family history is still used in this way to some degree, a new focus has emerged. Individuals are now paying closer attention to their family health history and how that information could affect their own health.

Now you might be thinking, it’s great people are interested in knowing their family health history, but why should I be? And if I am, how should I go about collecting it?

Well, in general, looking at the health history of close family members is important because biological families share genes, and often also share similar environments, and lifestyles. Environment encompasses geographical location and factors such as pollution that exist in the area where a person lives and works. Lifestyle describes a person’s way of living including diet, exercise, alcohol and tobacco use, etc. There are situations where families do not share all three of these factors i.e. adopted individuals, individuals who only live with one biological family member, etc., but overall, knowing this information can provide insight into your health.

Examining family health history often reveals patterns. These patterns can be indicative of diseases and conditions that “run in the family” and allow health providers to estimate the risk that another individual in the same family will be affected by the disease/ condition in question.

Family health history is especially useful when estimating the risk of complex, yet common conditions such as heart disease, diabetes, and high blood pressure because these conditions are influenced by multiple genetic factors, lifestyle, and environment. Comparing the outcomes and onset of disease between familial relations may help reveal which factors seems to play a larger role and could possibly lead to a recommendation of lifestyle and/ or environmental modifications to reduce risks. It is important to remember that just because you have a family history of a condition, or even an increased risk for a condition does NOT mean that you will develop the condition!

Knowing your family health history may also allow you to take preventative measures in regards to conditions that “run in your family”. For example, those with a family history of certain cancers may start screenings, such as mammograms and colonoscopies, earlier than those with no family history. Family health history is an important thing to bring into a genetic counseling session because it enables the genetic counselor to accurately assess your risk and determine if genetic testing is appropriate for you. If you are aren’t quite ready for genetic counseling but would still like a genetic counselor to evaluate your family health history, Grey Genetics offers a digital family history review.

As far as collecting family health history, there are several great tools and websites devoted to helping individuals with this task. It’s ideal to obtain at least three generations of your family health history, including grandparents, parents, aunts, uncles, cousins, and siblings. This information will be used to make a family tree. A family tree is a chart that shows the relationships between people over the course of several generations. A great time to start collecting this information is during a large family gathering or holiday—such as Thanksgiving! This gives you the opportunity to collect information from many people and they can add pieces another family member may have forgotten. As you start collecting information, I would recommend keeping either a notebook or a word/google doc with your findings so they are in one centralized location and you are able to refer back easily at any point. The information you should try to collect from each person is:

  • Biological sex
  • Date of birth
  • Ethnicity
  • Medical conditions
  • Mental health conditions
  • Age of diagnosis of each condition
  • Pregnancy complications such as miscarriages, infertility, stillbirths, and birth defects
  • Lifestyle habits
  • Cause of death and age at which they passed

Pay special attention to conditions that have an earlier onset or appeared earlier than expected. There are both questionnaires and online tools that assist with putting together family health history. The Surgeon General created an initiative called My Family Health Portrait to assist people in collecting their family health history. There are various other tools such as Families SHARE from the National Human Genome Research Institute that provides worksheets to evaluate family health history of conditions such as colorectal cancer and diabetes; Family HealthLink Assessment,which allows you to use your family history to estimate your risk of certain cancers and heart disease; and Tapgenes, which allows members of a family to input and share medical information online. FamGenix has also released an app-based tool called FamGenix that allows you to easily collect family history and share the information with family members as well as with your healthcare providers. It can be found in the App Store and Google Play Store. Before using any of these tools, be sure to read the fine print to fully understand how the company can use your information.

Collecting family history can be tricky for a multitude of reasons. Family members may be estranged, details may not be accurate due to the time period of diagnosis, or family members may have been adopted out. One roadblock could simply be the reluctance of family members to talk about family history. Some strategies to deal with reluctance are: explaining why you are asking, respecting their privacy, providing multiple ways for them to answer the question, and wording questions carefully. Often, sharing why you are inquiring about a topic that may make someone uncomfortable or uneasy will help them see your point of view and motivate them to have the conversation. Respecting privacy is very important when it comes to family health history. You cannot make someone divulge information they do not feel comfortable sharing and pushing may cause tension in the family. Providing multiple ways for people to answer such as over the phone, over email, face to face, etc. is a great strategy because it allows family members to discuss sensitive information in a manner that is comfortable for them. Wording questions carefully is also extremely important because you are asking about sensitive information and you don’t want family members to feel embarrassed or pressured. 

If you have limited access to biological family members, I would recommend using some of the following resources: birth, marriage, and death records; church records; immigration and naturalization records; wills; and the family bible. These resources can help form a family tree and give you a jumping off point for collecting family health history. Another great resource for adoptees and individuals with limited access to biological family is the WatershedDNA resources page and blog and the book, The DNA Guide for Adoptees by Brianne Kirkpatrick, the genetic counselor who founded WatershedDNA, and Shannon Combs-Bennett, a genealogist.

Resources for Collecting Family Health History:

Why is Important to Know my Family Medical History?

Acting on Your Family Health History

Family History Resources

Collecting a Family History

March of Dimes Health History Form

Medical History: Compiling Your Medical Family Tree

Compiling Your Family Tree (in Spanish)

Family Health History

Do you meet genetic testing criteria for hereditary breast cancer risk?