Committee on Genetic Genealogy
Who We Are
The NGS Committee on Genetic Genealogy mission is to advance and promote the value of researching and recording ancestral medical information in genealogy.
In recent years there has been an explosion of interest in genealogy. More and more individuals are finding satisfaction and enjoyment in tracing their family history. What they may not realize is that by simultaneously charting their family’s health history, they will uncover important, and, in some cases, lifesaving information that can affect them and their children. Knowing which diseases may affect you or your children and grandchildren can be of enormous importance to you and your family. With this knowledge you can change your lifestyle and have more frequent medical examinations and tests, including specific tests to detect the early onset of a familial disease. For instance, although adult-onset diabetes may run in your family, by losing weight, watching your diet, and exercising, you can markedly reduce the chances of getting this disease. Armed with the knowledge of your family’s health history, you can take steps towards prevention—or at least early detection—by being aware of early warning signs and by getting the appropriate tests on a regular basis.
How Do I Start?
You start at home. Interview all of your relatives. Begin with your immediate family, your parents, your siblings and their children. Extend outwards to your parents, siblings and their children, and backwards to your grandparents and their siblings and children. Work backwards as many generations as possible. Obtain birth, marriage, and death certificates, and any other medical record that you can find. The same techniques that genealogists employ can be used to research the family medical history.
Construct a Pedigree Chart. The chart should show squares for males and circles for females, all connected by lines showing marriage and descent. An open circle or square indicates a normal female or male, free of the disease. A filled-in (blackened) circle or square is an affected male or female. A diagonal line through a circle or square indicates that the individual is deceased. In addition to birth, marriage, and death data, put in any relevant medical information that you have found, either from an interview or from documentation. Health items should include chronic ailments, as well as the age of onset and types of major illnesses and surgery. If an individual is deceased, obtain the death certificate so that you can record the cause of death.
While genealogists assembling their pedigrees tend to concentrate in going as far back as possible, tracing their line back to great and multiple great-grandparents, the genealogist interested in family medical history must be careful to extend outwardly as well, recording all of the collateral relatives, including all siblings and their descendents.
What Can I Learn?
Once the pedigree is assembled, you must analyze it. One difference in analyzing a health history pedigree from a genealogical pedigree is that only blood relatives are significant in disease patterns. For example, diseases that affect an uncle by marriage would not be significant to you. Look at illnesses that affect those with whom you share the most genes: siblings, parents, aunts, uncles, close cousins, and grandparents and their siblings. If you find two close relatives with similar cancers (especially of the colon, ovary, or breast) or with diabetes or heart disease, then this should alert you to a possible genetic or familial connection. An early onset of certain diseases, such as a cancer or heart attack before the age of 50, could also signal a possible genetic link.
We all know that certain diseases tend to run in families. Today, we also know that not only are such uncommon diseases as cystic fibrosis and hemophilia hereditary, but that more common diseases such as diabetes, many cancers, and heart disease may also have a genetic component. The truth is that almost every disease you can think is influenced by the genes. Currently the National Institutes of Health (NIH), through its Human Genome Project, is mapping the 100,000 genes in the human cell. We now know, for instance, that a woman with a certain damaged gene, BRCA1, has a 90% chance of getting breast cancer during her lifetime. If a search through your family tree shows a high incidence of breast cancer, then this gene may be lurking in your pedigree.
Where Can I Learn More
Members of the NGS Committee on Genetic Genealogy regularly give lectures and panel discussions at the National Genealogical Society Annual Conference.
Reading List
Gormley, Myra Vanderpool. Family Diseases: Are You at Risk? Baltimore, MD., Genealogical Pub. Co., 1989.
Jerger, Jeanette. A Medical Miscellany for Genealogists. Bowie, MD., Heritage Books, Inc., 1995.
Krause, Carol. How Healthy is Your Family Tree: A Complete Guide to Tracing Your Family’s Medical and Behavioral History. New York, NY., Simon & Schuster, 1995.
Nelson-Anderson, Danette and Waters, Cynthia. Genetic Connections. A Guide to Documenting Your Individual and Family Health History. Washington, MO, Sonters Publishing, 1995, http://pages.prodigy.net/sydrs.
National Genealogical Society Quarterly. Vol. 84, No. 2, June 1996.
Your Family’s Health History, An Introduction. NGS Quarterly, Special Issue, Vol. 82, No. 2, June 1994.
Questions? Contact NGS at ngs@ngsgenealogy.org.
