When your doctor asks about hereditary health conditions that have affected family members, what illnesses come to mind? Do you consider only those diseases that have purely a genetic cause, such as sickle cell anemia, Huntington Disease, muscular dystrophy, or cystic fibrosis?
The truth is you should be considering many health conditions, including cancers, heart disease, diabetes, forms of arthritis, mental illnesses, abnormal reactions to anesthetic medications, vision and hearing disorders, immune system deficiencies, chemical dependence such as alcoholism, and many others. Experts claim that as many as 1/3 to 1/2 of all health conditions such as these that affect man have a genetic component...a genetic connection if you will. Most of these conditions are classified as multifactorial disorders, meaning that both genetic and environmental factors play a part in their occurrence. Identifying multifactorial disorders that run in your family can help your doctor prescribe preventive measures to help you avoid these conditions. Sharing a comprehensive family health history with your doctor is therefore paramount in keeping you, and other family members, as healthy as possible. Dr. Joseph Thompson from DePaul Health Center in St. Louis, Mo., states,
Although compiling a genealogical history of your family is important, taking the time to trace your family's health history can offer a lifesaving picture of your future. If people would take a proactive role with their health, many could live 15 years longer. One of the best ways to do that is to be aware of your family's medical past. I could perform numerous and expensive tests, and it wouldn't give me nearly the information that a person's family medical history can.
And a recent article published August 15, 1996 in The Wall Street Journal reported that the American Medical Association recommends that every family maintain some kind of health history. In that same article, Dr. Regina M. Benjamin, a member of the American Medical Society's Board of Trustees, was quoted as saying, "Every time we investigate an illness or see a patient for the first time, the family history will guide us as to what direction to take." And in a recent June 30, 1996 issue of Parade -- The Sunday Newspaper Magazine, an article written by Hugh Downs reported, "It's your health -- take responsibility.... Before you see any physician for the first time, be prepared: learn as much as you can about your family's medical history."
Doctors and their patients have a unique relationship. In this day and age, it should be considered a partnership more than anything else. It takes both parties to receive and administer the best possible health care. One very important responsibility of the patient is to provide the doctor with family health information. In turn, one of the doctor's responsibilities is to take that information and interpret what it means in regard to his/her patient's risk of developing health problems. The doctor can then prescribe an individualized plan of prevention, such as scheduling more frequent checkups or tests, recommending diet and/or lifestyle changes, and/or ordering medication to help prevent or delay the development of a disease to which the patient is predisposed because of heredity.
Many people today realize how important keeping a family health history record is, but are at a loss as to how and where to begin. The best way to present the information to your doctor is in the form of a family health pedigree -- a single paged graphic representation of family members and health conditions. Health professionals understand health pedigrees and are thrilled when a patient presents family health information in this manner. Not only can the doctor see what familial health conditions are present, they can also see how closely the affected family members are/were related to their patient and get a good idea of how these conditions are being transmitted generation to generation. All of this information is vital in helping doctors determine a patient's risk for developing disease. Once risks are known, prevention can begin.
Many genealogists understand that including health data in their search for family information is important, but a family health pedigree is a different animal from genealogical pedigrees. Some differences seen in health pedigrees include:
- no names are listed;
- documenting three to four generations is usually sufficient;
- they extend horizontally as well as vertically, including great-aunts and great-uncles, aunts and uncles, first cousins, and siblings;
- standardized symbols recognizable to health professionals are utilized to depict gender and biologic and non-biologic relationships.
If you are going to take the time and make the effort to construct your family health history, do so in the format health professionals can utilize. Your doctors have but a few minutes to "hear what you have to say" during a medical visit, and they certainly cannot research and record your family's health information for you. It's a job you need to do both for yourself and other family members. It's easy to convert a genealogical record into pedigree format; creating a family health pedigree is easy even if you're not a genealogist or family historian. Graphing out the pedigree is quick. Collecting and adding the health data can take some time depending on how large your family is and how accessible family members are. The important thing is to begin now. A family health history is an on-going living record, a record that is vital to your well-being and the well-being of future generations. Where can you go for guidance? The book Genetic Connections -- A Guide To Documenting Your Individual And Family Health History (Sonters Publishing Ink, 1995) was written by a professional nurse to guide people step by step in the process and is the most complete guide on the market. As stated in a review by Joan Kirchman Mitchell, Ph.D., published in the June issue of the National Genealogical Society Quarterly, "As a family historian and a teacher of genetics and human biology for over thirty years, I recommend without reservation this text and its methodology to anyone interested in establishing their family's health history."
Concerned that family health information may be used against you in some fashion? If so, you are not alone. But don't let your concerns prevent you and your family from receiving the best health care possible and living the longest, healthiest lives possible. Keep in mind, not only is using family health information to impart negative consequences unethical, it is illegal in many states, and new states are climbing onboard that bandwagon every day. In addition, the recent Health Insurance Portability and Accountability Act legislation signed by President Clinton in late August provides Federal protection against losing your health insurance because of "pre-existing conditions." The best way to protect yourself is to learn the most you can about disorders that have a genetic component and speak to your doctor about your concerns regarding the confidentiality of your health records. Learn where your state stands on such issues and be active in legislative processes to get protective laws enacted if none presently exist.
Danette Nelson Anderson is a Registered Nurse and holds a Bachelor of Science in Nursing.