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  • Family Health and Genealogy: Compiling a Family Health History: A Primer for Genealogists

    Norma Storrs Keating

    The first column in this continuing series discussed why it is important for every family to have a medical health history, how a medical family tree differs from a genealogical family tree, and what family members should do with the health information once it has been gathered together into a family health history.  Continuing the discussion, this installment will explain what information you need to accumulate and how to compile it into a usable format.

    In the course of your family research you may have already found much or all of the information needed for a family health history. A lot of the general data required is virtually identical to that used in a family genealogy. Also, like the genealogies with which we are more familiar, a typical family health history will include fairly complete information for the more recent, contemporary members and less, more spotty data for the older, distant generations.

    An important part of compiling a medical family tree is to find out as much as possible about family members throughout their lives. Don’t just look for diseases and ailments. How they looked physically, what they did for recreation or hobbies, and where they lived or traveled can also have an important impact.

    When searching for the medical history, gather as many specific details as possible about each person, illness, and condition. For example, if someone in the family has or had cancer, find out the type of cancer and the history of the illness. Some cancers are more genetically linked or related to family patterns than others. Or, if a relative survived a heart attack at an early age, find out how old the person was at that time, the treatment or surgical regimen employed, and the aftermath of the episode.

    Personal Information

    The general personal information that should be gathered for each person in a family health history includes the items listed below. A few of the questions will not have specific answers for every person. For example, some family members may not have served in the military or may still be living. In those cases, an indication of “no military service” or “living” will be sufficient. The idea is to create as complete a picture of each family member as possible.

    1. Full name
    2. Gender
    3. Race/ethnicity
    4. Date and place of birth
    5. Date and place of christening/baptism
    6. Date and place of death
    7. Date and place of burial
    8. Biological father’s full name
    9. Biological mother’s full name
    10. Marital status
    11. Date and place of marriage(s)
    12. Name(s) of spouse(s)
    13. Date and how marriage(s) ended with explanatory notes as needed
    14. If parents are related, describe relationship
    15. Educational history: including the name and location of school(s), how long the person attended (dates if possible), course of study, and any diploma/ degrees received
    16. Professional work history: including the occupation or trade, the name and location of employers, how long the person worked at each place (dates if possible), job description or title, type of work performed, and notes about any environmental exposure to disease or health hazards
    17. Military service history: including branch of service, job description, training, wartime service, name and address of residence during service, length of service (dates if possible), and notes about any environmental exposure to disease or health hazards
    18. Residence and travel history: including a list of every place the person resided in or traveled to, length of residence or travel (dates if possible), means of travel, and notes about any environmental exposure to disease or health hazards
    19. Life interests: including avocations, hobbies, interests, recreation, special, unusual, or unique achievements (note special circumstances that could affect a person’s health, such as oil painting, flying, scuba diving, etc.)

    Medical Information

    The specific medical information that should be gathered for each person in a family health history includes the items listed below. Some questions may have no answer for many family members since not everyone will have had surgery, a blood transfusion, or an accident, for example. Some information is better than none, but try to be as complete as possible when describing a medical or dental problem or disorder. If a specific date is unknown, try to provide the year. Since the health history is constantly updated, it may be possible to provide more data or verified information at a later time.

    1. Death information: including primary and secondary causes of death, age at death, and circumstances (at home, accident, natural, etc.)
    2. Physical characteristics: including height, weight, body structure, hair type and color, facial features description, eye color and shape, blood type, vision description, skin color and features
    3. Unusual characteristics: such as missing or extra digits, snoring, stuttering, etc.
    4. Habits: including addictions (tobacco products, drugs, medications, alcohol) with a description of length of use, nail biting, etc.
    5. Allergies: including food, prescription/non-prescription medications, environmental (grass, pollen, bees, etc)
    6. Use of prosthetic devices: hearing aids, glasses, false teeth, artificial limbs, etc.
    7. Physical activity: active, sedentary, works out, etc.
    8. Diet: normal or describe a special diet (vegan, diabetic, vegetarian, kosher, low-sodium, etc.)
    9. Medical conditions or disorders: including name of condition, age at onset, duration, detection, treatments, medications
    10. Dental conditions or disorders: including name of condition, age at onset, duration, detection, treatments, medications
    11. Surgical procedures (major and minor): including name of procedure, date and location, doctor’s name, age of patient, result (success/failure, recovery, etc.)
    12. Blood transfusions: date and place of transfusion, age of patient, type, reason received, adverse reactions, recovery, and other notes
    13. Accidents: including the kind of accident, date and place, age of patient, recovery, ensuing problems (if any)
    14. Disabilities: including a description, age at onset, duration, detection, treatment, impact on ability to function
    15. Communicable diseases and immunizations: including the type of disease/ immunization, date, duration, age of patient, detection, treatment
    16. Pregnancy: list each pregnancy separately and include date, age of patient, location of delivery, doctor’s name, type of delivery, complications, treatments, and information about the condition of the child and mother following birth
    17. Emotional or behavioral disorders: including a description, date of occurrence, age of patient, duration, detection, treatment
    18. Routine medical or dental check-ups: including the type, doctor’s name and address, date, age of patient, tests, x-rays, blood work

    The Genogram

    The sample genogram was created for the person represented in the first generation by the double lines. Males are shown as squares and females as circles. There are four generations represented in this genogram. Each generation line includes all the siblings on that level of the family tree.  The diagonal line crossing through a circle or square indicates the person is deceased. The age at death is given inside the person’s symbol. The numbers below the symbol represent a medical condition, illness or disease experienced by the family member. For example, the root person was a female who died at age 96. Looking at the disease legend, we see that number 1859 was pneumonia, likely her cause of death. She also had Alzheimer’s Disease (#51).

    Norma Storrs Keating, RN, BSN

    The Medical Genogram

    Now that all the health data has been accumulated into a master file with each person’s medical questionnaire (the above listed questions and answers), the next step is to put it into a format that can easily be used by family members and their medical advisors. The best way to do that is to create a medical genogram that uses symbols and lines representing people and relationships to display family health information graphically and facilitate recognition of disease patterns recurring across several generations. It is a “road map” that allows you and your medical advisor to see your family in a bigger picture, both historically and currently.

    The genogram concept was developed in the 1970s by Dr. Murray Bowen, a family therapist, as a tool to help unravel relationships between family members. Clinical psychologists and others working with family dynamics have used genograms since then. The standardized symbols represent specific information and allow traits, diseases, disorders, and other health details to be incorporated into the genogram. In the 1980s, the North American Primary Care Research Group organized a committee of leading proponents of genograms from family therapy and family medicine to define the most practical genogram symbols and agree on a standardized format. The National Society of Genetic Counselors created standardized symbols for genograms.

    The medical community began to use genograms to present and analyze family health and genetic relationships, and they have found them to be a reliable and efficient method. The summary provided by the genogram allows a physician to quickly understand a large amount of data. Genograms appeal to doctors because they are tangible and graphic representations of complex patterns within a family. While notes written in a chart or questionnaire may become lost within a record, genogram information is easily recognized and can be added to as more is learned about a family.

    Genograms can view information both horizontally across the family context and vertically through the generations revealing cross-generational patterns not previously recognized. Illnesses and diseases in different parts of the family can be seen not as random happenings but as occurrences that may be connected. The best person to analyze and interpret the genogram is a family physician, who can use the knowledge to develop an individualized diagnostic and therapeutic plan. It is important for family members not to infer too much from isolated facts since they may not see or interpret every pattern in the genogram the way a doctor would.

    A medical genogram has some special characteristics to keep in mind. It includes all siblings in each of three or four generations and only blood relatives are included. Family members who have not contributed to the family genetic pool are unimportant.  It focuses on illness, usually displaying the primary illnesses for living persons as well as primary and secondary causes of death for deceased family members. A specific disease or illness, such as glaucoma, can easily be highlighted within a genogram.

    Genograms have traditionally been created using a pencil, ruler and special template containing some of the symbols. In the past few years several computer programs that make this task quicker and easier have become available. Some are very complicated and expensive, while others are both easier to use and more reasonably priced.  Please refer to the bibliography following this article to locate books or articles with detailed instructions about how to go about drawing a genogram, as well as computer programs that will create a genogram based on information provided.

    The author is the president of Genes & Things, Inc., creators of GeneWeaver®, new computer software for creating and maintaining family health histories. Please visit their website for additional information.

    Selected Bibliography:

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

    Bennett, Robin et al., “Recommendations for Standardized Human Pedigree Nomenclature,” American Journal of Human Genetics 56:3 (March 1995): 745-752.

    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.

    Krasner-Khait, Barbara. “Family Health Histories on the Web,” Genealogical Computing 21 (Summer 2001): 7-10.

    Krasner-Khait, Barbara. “Focusing Beneath the Surface: Genograms Add Insight to Family Research,” Ancestry 18 (Jan-Feb 2000): 28-31.

    McGoldrick, Monica et al. Genograms: Assessment and Intervention. 2d edition. New York, New York: W.W. Norton & Co., 1999.

    Nelson-Anderson, Danette et al. Genetic Connection: A Guide to Documenting Your  Individual and Family Health History. Washington, Missouri: Sonters Publishing, 1997.

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