Compiling a Medical Family History

Compiling a Medical Family History

Published June 15, 2012

After 18 years of working as a family researcher and genealogist, I have come to realize the (pardon my pun) “grave” importance of knowing your own family history, as it relates to those who have walked before you, and how it lays a potentially life-saving foundation for generations that may follow.

A medical history provides insight into the conditions that are common amongst family members throughout your lineage. This can offer clues to your own risk of disease, or that of your primary family. Once you know what your genetics may hold, it may be possible, in some cases, to take preventative measures.

For example, if you find that a number of family members have dealt with diabetes, you might choose to see a nutritionist and get advice about lifestyle and food choices, in order to prevent early onset of such a disease. You may discover that your family line has some hereditary genetic disorders.  If so, you may wish to get some genetic testing done to see if you carry the genes connected with this particular disorder. Did you know that the tendencies to develop certain preventable health conditions ARE hereditary?  Knowing this vital medical information can be useful not only to you, but can greatly help other family members who may be called on to assist physicians in caring for your health.

The AMA (American Medical Association) recommends that you include three generations (besides yourself) in your family medical history. Include as much information as possible about your parents, grandparents, great-grandparents, aunts, uncles, siblings, cousins, nieces, nephews, children and grandchildren.

What should be included in a family medical history?

1)     Sex

2)    Date of Birth

3)    Ethnicity

4)    Medical Conditions

5)    Mental health conditions, including alcoholism or other substance abuse

6)    Pregnancy complications, miscarriage, stillbirth, birth defects or infertility

7)    Age when each condition was diagnosed

8)    Lifestyle habits, including diet, exercise and tobacco use

9)    For deceased relatives, age at the time of death and cause of death

Always pay SPECIAL ATTENTION to conditions that may have developed earlier than usual in life (such as heart disease early in life, etc), or conditions that affect multiple relatives.

So, now that you know what information to collect, and who to collect it from, how do you go about obtaining it?  Working together as a family, you may wish to kick off the project at a family holiday gathering or reunion. Always keep in mind that some relatives may be uncomfortable disclosing personal medical information out of shame, guilt or perhaps painful memories that are conjured up.

If you encounter reluctance, try some of these strategies. First, be sure so clearly explain your purpose. Make it clear you are doing this for the benefit of everyone in your family to benefit by knowing this information.  Let them know that this information will be made available to them also, to share with their doctors.  Make several ways available for sharing the information. Some might prefer to share it in a person to person meeting, while others might prefer doing it by phone or email, or simply mailing you the information.  Keep your questions short and to the point and word them carefully. And, as you collect information, always respect their right to privacy and confidentiality.

There may be other sources available for securing this information also. You might wish to go through family documents such as compiled family histories; baby books; family bibles; old letters; obituaries; or even records from employers or places of worship. (Example:  My paternal grandfather died when I was just 7 years old. I recall him mostly from old family photographs, in which he was always sitting in a wheelchair. I knew he was sick for many years, but not much more as a young child, did I recall. It wasn’t until I began researching my own family medical history, and I obtained a copy of his Railroad Retirement Board records, that I discovered he had been sick for years with tuberculosis. This was an amazing find for me as this had never been talked about when I was growing up, and I had no idea.) So past records, particularly death certificates, can give great clues to the medical state or condition of a family member who is deceased. Public records such as birth, death or marriage licenses, are usually available in county record offices.

If you are adopted, ask your adoptive parents if they received past medical information about your biological parents. The adoption agency might also have some valuable medical information on file.  If your adoption was an “open” adoption, you might be able to simply discuss these issues and the medical history with your biological parents.

Once you’ve gathered the information about your family medical history, create a diagram that visually depicts relationships – typically called a “family tree”. Try to record significant medical information about each individual you have compiled, next to that person on your tree.  Don’t worry if some information is missing, and do not guess at missing information. This could allow for a poor misinterpretation of your overall medical history in the future.

Always provide this information to your physician and give him a copy. He may go over it with you for clarification and discussion and help you determine the relevance of various patterns that emerge, including the need for intervention, screening or preventative measures. It is always a good idea to update this history every couple of years.

In conclusion, you may not feel this is of any benefit or consequence to your own personal health, but think about the potential risks and/or health consequences, you could be helping a member of a future generation prevent, by your diligent and caring efforts.

To help individuals collect and organize their family history and information on its medical conditions, 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”. You may wish to check it out as a starting place for your own valuable work.