EDITOR'S NOTE: For further reading on this topic, see "Document Your Family's Diseases" and "Questions to Ask Family Members About Deceased Relatives."

When Phyllis Hall was born a half-century ago in Minnesota, the deadly cancers that devastated her female kin seemed to be a family curse, striking some women in the clan while sparing others. At the time, the study of genetics DNA (deoxyribonucleic acid) was in its infancy, and many medical specialists scorned the notion that cancer was linked to the genetic code that shapes each and every cell of our bodies.

Today, Hall’s creation of a five-generation medical pedigree has proven crucial in the growing field of genetic research. Hall and her relatives constructed a “family health tree” and donated blood and skin samples for testing, which allowed scientists to uncover the connection between a mutant gene which causes early-onset breast cancer—a gene known as BRCA1—and ovarian cancer. This discovery, made in 1994, has the potential to save countless lives through careful screening and preventive surgery.

Advances in our knowledge of how genes work are being made at a dizzying rate as doctors continually find links between diseases and genetic factors. Now more than ever, genealogists can help their families by compiling medical pedigrees. Your physician can use the information contained in such a pedigree to help diagnose and treat family members.

The Utah-Iceland Connection
On the surface, natives of Iceland and Mormons who live in Utah seem to have little in common—they’re miles apart, geographically and culturally. But inhabitants of the tiny northern island and members of the Utah-based Church of Jesus Christ of Latter-day Saints do share some similarities, and these resemblances make them invaluable to genetic researchers.

Both groups can trace their lineage back to a “founder population.” In Utah, thousands of residents can connect their roots to Mormon pioneers who settled the Intermountain West in the 1840s. These early Mormons tended to have large families that stayed in the region.

Iceland’s 270,000 citizens are descended from Viking explorers who settled that inhospitable land over 1,100 years ago. The nearly homogeneous population, winnowed down over the decades by natural disaster and illness, carries virtually the same genetic codes as its forebears. Such populations are boons to geneticists because genetic abnormalities that play a role in disease origins can be more easily identified in them.

Both Icelanders and Mormons are devoted to genealogical record-keeping. Members of the LDS Church are encouraged to research their family trees to facilitate the performance of sacred ordinances for the dead, while many Icelanders can trace their pedigrees back 500 years or more.

These factors make both populations attractive to geneticists. DNA from three generations of a number of Utah families is kept in a repository in France from which scientists from all over the world can obtain samples to produce genetic maps. Salt Lake City is now not only a center for genealogical study, but genetic research as well, with top researchers flocking to the Howard Hughes Medical Institute and Huntsman Cancer Institute.

In Iceland, a biotechnology company called Decode Genetics received approval from the Icelandic Parliament to develop a massive database combining the DNA profiles, health records, and genealogical backgrounds of every person in the country. Decode Genetics will market the database abroad so researchers can use its information to answer questions about the nature and genesis of myriad diseases.

Genetics in a Nutshell
Genes are strings of DNA that act as templates for the production of proteins that build and operate cells. Genes are contained in chromosomes that are stored in each cell of the human body and determine your eye and hair color, your sex, even traits such as musical ability and whether you’ll be right- or left-handed. Some genes carry mutations which can lead to disease. These gene mutations can be transmitted in the genetic makeup we inherit from our parents.

The international scientific community currently is on the cusp of a breakthrough that likely will alter genetics and medicine forever. Biologists are hurrying to unveil a “working draft” of the human genome, the human genetic code, by March of 2000. A complete mapping of the genome is anticipated for 2003 or sooner.

Identifying all the 100,000 or more genes in human DNA—the blueprint for creating a human being—will revolutionize medicine. Geneticists believe they’ll be able to predict when and why a person will become ill, years in advance. They may be able to alter genes to cure cancer, schizophrenia, Alzheimer’s, and other diseases. Scientists hope to invent medicines without side effects, grow artificial organs, and perhaps extend life beyond 100 years. In light of this exciting information, there’s no better time to start working on your own family health history.

The Apple Doesn’t Fall Far from the Tree
Of the approximately 10,000 illnesses known to humankind, at least 3,000 leave genetic footprints. The list of diseases that can be hereditary includes heart disease, diabetes, leukemia, high blood pressure, depression, Tay-Sachs disease, Huntington’s disease, Multiple Sclerosis, alcoholism, obesity, and numerous cancers.

Sometimes the tendency to inherit a disease runs in certain ethnic groups. For example, Ashkenazi (eastern European) Jewish women have an increased likelihood of developing breast cancer, and 85 percent of children diagnosed with Tay-Sachs disease, a fatal disorder that destroys the central nervous system, are of Ashkenazi Jewish descent. Sickle cell anemia is found primarily in African Americans; cystic fibrosis is most commonly found in people of European descent; and congenital nephrosis, a kidney disease, generally strikes babies with Finnish or Scandinavian heritage.

How to Build a Family Health History
To be truly beneficial, your family health tree should include your horizontal lines (sisters, brothers, aunts, uncles, and cousins) as well as your vertical lineage (parents, grandparents, and great-grandparents). A pedigree that goes back four generations will be the most useful to you and your physician.

Many of the records genealogists consult while creating their family histories can also be helpful in constructing a family health tree:

Death Certificates. These records contain valuable data concerning the primary and secondary causes of death, the date of onset of the disease, and any surgeries that were performed. Death certificate forms are generally filled out by attending physicians, so the information can be relied on to be accurate. Death records are kept in the state where your ancestor died, not where he or she was buried. Most states have been keeping death certificates since the early 1900s.

Mortality Schedules. The deaths recorded in mortality schedules represent only about thirteen percent of all deaths, but they’re useful in place of vital statistics. These schedules were kept by the federal government from 1850 to 1885 and list deaths occurring during the twelve months prior to each census, providing a state-by-state catalog of deaths. These schedules predate the inception of vital statistics registration at the turn of the last century. Details compiled in the schedules include name, age, sex, color, marital status, free or slave status, birthplace, occupation, cause of death, and length of illness. The schedules are held in state archives, the National Archives, and LDS family history centers.

Insurance Records. You can often find medical information in insurance records, especially life insurance. Medical details, such as facts about general health and lifestyle, were included in life insurance applications as far back as 1865. The Source: A Guidebook of American Genealogy provides a list of insurance companies dating back to the 1800s.

Obituaries. Although contemporary obituaries generally do not mention the illness which caused death, older obituaries often do.

Cemetery and Funeral Records. Sometimes the sexton of the cemetery where your ancestor was buried will have information about your ancestor’s cause of death, and tombstones will occasionally note the cause of death. Churches and mortuaries often keep valuable records as well.

You’ll also need to gather information from your relatives concerning family health histories. Be sensitive to any reluctance you encounter when interviewing family members who might have delicate emotions regarding medical histories. Explain that the information could literally be life-saving to you and your family. Reassure your relatives that the facts you collect will only be divulged to your health-care provider and blood relatives, since employers and insurers might discriminate against applicants who are known to carry genetic conditions. (See the sidebar "Questions to Ask Family Members About Deceased Relatives" for more information on conducting these interviews.)

Using the information you get from oral interviews and from records research, you can write a brief medical biography for each ancestor. Include birth date, occupation, lifestyle information (drinking, smoking, obesity), significant medical conditions, known hereditary disorders, age at which illness developed, surgeries and their results, death date, age at time of death, and cause of death.

Genetic Counseling
You may come across information in your research that will raise concerns about your family’s genetic propensities for certain diseases. If so, make an appointment to meet with your physician or with a genetic counselor. An expert perusal of your research will help determine what additional information is needed and what medical treatment, if any, is necessary.

The field of genetic counseling is still young, having been defined by the American Society of Human Genetics in 1975. Genetic counselors are medical professionals who offer information and support to people confronting a birth defect or genetic condition. Counselors obtain a complete social, reproductive, and health history for an individual and his or her family, using the information to assess risk and discuss options.

At the dawn of a new century, scientific and medical innovations are changing our personal and social landscapes. In an age when advances in the field of genetics could someday mean the end of disease as we know it, creating a health pedigree is one of the most precious gifts you can give your family.

Further Reading
Ancestors: A Beginner’s Guide to Family History and Genealogy, Jim and Terry Willard with Jane Wilson (New York: Houghton Mifflin, 1997). Chapter 8 covers building a medical pedigree.

Genetic Connections: A Guide to Documenting Your Individual and Family Health History, Danette L. Nelson-Anderson, RN, BSN, and Cynthia V. Water (Washington, Missouri: Sonters Publishing, 1995).

How Healthy Is Your Family Tree? Carol Krause (New York: Fireside Books, 1995).

National Genealogical Society Quarterly, “Your Family’s Health History: An Introduction,” vol. 82, no. 2, June 1994.

The Source: A Guidebook of American Genealogy, rev. ed., edited Loretto Dennis Szucs and Sandra Hargreaves Luebking (Salt Lake City: Ancestry, 1997).

Alyssa Hickman Grove is a Salt Lake City-based reporter and freelance writer. She is the former managing editor of Ancestry Magazine.