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  • Family Health and Genealogy: Every Family Should Have a Health History

    Norma Storrs Keating

    Published Date : September 20, 2002

    When families gather for holidays or reunions it isn’t uncommon to hear comments like “He’s the spitting image of Uncle Ralph” or “The apple doesn’t fall far from the tree.”  While these homespun comments aren’t scientific, they do point out that members of the same family often share the same recognizable traits, illnesses, and diseases. Unfortunately, the information is rarely written down or compiled into a permanent record that family members can utilize, although the American Medical Association has urged for years that every family should keep some sort of a health history that medical practitioners can use when planning treatment programs for their patients.

    Doctors are now beginning to understand just how vital family health history information is for evaluating and treating individual patients. Genetic researchers have found that genetic factors underlie all aspects of health and disease, and that a family can learn much about its medical future by examining the past. This shift in understanding is a direct result of the completion of the Human Genome Project, a massive ten-year undertaking led by the National Institutes of Health.  The project involved scientists from all over the world who deciphered the entire human genetic code, known as the genome.

    As the decoding progressed, researchers charted, or mapped, each of the 100,000 human genes to discover what each of them does. Using this information, scientists have identified over 3,000 genetic diseases and with new medical discoveries, the list keeps growing. We now have the fundamental knowledge about individual cells that help determine whether or not a genetic disorder-- or predisposition to a given disease-- will be passed to offspring.  This massive amount of information holds the promise of a far better understanding of human behavior, health, and disease, as well as many new drugs, treatments, test procedures, and medical equipment. 

    Family history is playing an ever increasingly important role as doctors and genetic researchers, surprised by the extent to which adult diseases are genetically linked, have begun to study family trees to identify patterns of health and disease that can impact their patients.  Comprehensive family health histories are helping researchers find more links between diseases, complicated medical conditions, and genetic factors than ever before. They also have determined that many other conditions, though not inherited, do tend to occur more frequently in some families than others. A study of 25,000 family medical trees found 43,000 people who were at risk for genetic illnesses.

    Every individual is a unique being that is a product of his or her environment and the genes inherited from parents.  But these genes determine more than gender, eye color, and left- or right-handedness. They also contain the molecular blueprint that controls predisposition to disease and illness.  Faulty genes passed on from one or both parents can result in the possibility of inherited disease or disorder in a family. The eventual development of a medical condition or disorder depends on the location and function of the gene, how neighboring genes operate, and whether the gene is recessive or dominant.  Recessive genes are transferred from one generation to another without the carrier becoming ill. In essence, they hide, which may necessitate searching backward or forward a few generations to find their effects.  For example, a man can transmit a recessive gene that contributes to breast cancer from his mother to his daughter.  Experts have estimated that some twenty million Americans are carriers of genetic defects and that each individual is a carrier of at least twenty abnormal recessive genes that have a potential to cause a genetic disorder.

    In spite of all this, it is known that about one-half to two-thirds of all health conditions do not have a genetic cause, meaning that many health conditions that tend to run in families are not now known to be inherited diseases. For most people, the overall risk of developing a disease is still relatively small even if they have a family health history of it.  However, chances can double if a brother, sister, child, or parents had it. This doesn’t mean an individual will get the disease; only that he or she is at higher risk. The importance of having a family health history becomes increasingly important when considered in this context.

    What does this mean to the family historian and keeper of family records? Genealogists will be adding genetics to their other research sources and skills to create and maintain family health histories that will contribute to the well being of their families.  Who better for the job, since family health information is usually found among the many types of records that genealogists routinely use in their research endeavors.  In fact, in the course of compiling a family’s history, the genealogist will gather much or all of the information required for a health history.

    Family historians should be aware that a medical family tree differs from a genealogical family tree in several important ways. First, it contains only blood relatives who share common genes. Second, the tree extends horizontally as well as vertically, and includes all siblings on each level.  This is referred to as the whole family approach. Third, an individual’s health history documents only three or four generations with the person for whom the tree is constructed being designated as the first generation.  Fourth, regular updating of the information is crucial to keep the health history current and, therefore, useful.

    Since a family health history benefits the living members of a family, it should begin with the youngest person and work backward from there. Thus, personal knowledge combined with verifying documents, such as medical records, baby books, insurance documents, immunization records, death records, obituaries, etc., may be all that is needed to begin constructing a four generation health history for each living family member.  Generally, the more recent generations will be fairly easy to document while more removed ancestor information may require digging deeper into unusual types of records.

    Once the family health history is compiled, it can be used in several ways. First, and foremost, it should be given to the family doctor or health practitioner who has been trained to evaluate the information it contains. Of course, it should be shared with interested family members so that they can also receive beneficial help from their doctors. The information can be used to aid in completing the medical history forms all doctors now require of their patients. Having a copy of the health history handy in the doctor’s office will ensure nothing is inadvertently omitted.  During an emergency or other stressful situation, it is easy to forget something important, so keeping a copy of the health history handy for use by any family member can greatly assist in treatment.

    Documenting a family’s health history could be the most important way a genealogist can contribute to the good of his family. It allows members to become proactive in their health care. Creating and maintaining a health history can provide a family and its medical care providers with graphic presentations in the form of medical pedigree and medical genogram charts that can be used to identify patterns of family health, disease, relationships, and traits that might otherwise be missed. If no disease patterns are recognized, this can free the family from worry about health risks that are not likely to occur to those who pursue a reasonably healthy lifestyle.

    After the family health history has been analyzed by a qualified medical professional it can assist in creating a customized medical care plan. This plan might include more frequent scheduling of tests and checkups to watch for early warning signs of illness and disease. It could also recommend beneficial life and behavior modifications in diet or exercise. Early diagnosis and treatment can prevent or delay the development of a disease to which someone is genetically predisposed.  Should a serious genetic illness be identified in the family health history, genetic counseling may be advised to assist in making important and difficult life choices, such as whether to marry or have children.

    Genealogists know firsthand that as each generation passes, it becomes harder to obtain information needed for a family history, so recording data now in a family health history format will ensure accessibility to family members yet to come. Information compiled now can help future generations take advantage of the new discoveries, new drugs, and new treatments we can only speculate about.

    Selected Bibliography:

    Bell, Sherilyn L. and Constandina N. Arvanitis. The Genes in Your Genealogy. Heritage Book Series: #10. Toronto, Canada: Heritage Productions, 2001.

    Betit, Kyle and Loni Gardner. “Genealogy and Genetics: Discovering the Future in the Past”, New England Ancestors 2 (Summer 2001): 11-15.

    Daus, Carol and Jeanne Homer. Past Imperfect: How Tracing Your Family Medical History Can Save Your Life. Santa Monica, California: Santa Monica Press, 1999.

    Gormley, Myra Vanderpool. Family Diseases: Are You at Risk? Baltimore, Maryland: Heritage Books, Inc., 1995.

    Keating, Norma Storrs, RN, BSN, and Richard F. Robinson with Elizabeth Kelley Kerstens, CGRS, CGL. GeneWeaver®: Family Health History Made Easy. Plymouth, Michigan: Genes & Things, Inc., 2001.

    Your Family’s Health History: An Introduction. Special Issue, National Genealogical Society Quarterly, 82 (2)(June 1994).

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