Retired entrepreneur Stanley Diamond had a vision to create a Web-based index of all Jewish vital records of Poland. His vision went beyond the genealogist’s typical motivation. Diagnosed as a carrier of a mutated Beta-Thalassemia gene, he was driven to find its genesis. He wanted to identify other potential carriers and warn them about the dangers of the disease.
The project he inspired, Jewish Records Indexing-Poland, has now indexed nearly one million Jewish records from more than 170 Polish towns.
"Through the establishment of a searchable database from Poland, careful analysis of the relationship between individuals will be possible at both the familial and the molecular level. This will afford us the opportunity to learn not only more about the Creator’s great work, but will also allow researchers new opportunities to dissect the cause of many diseases in large established pedigrees," says Dr. Robert Burk, professor of epidemiology at the Albert Einstein College of Medicine at Yeshiva University, and principal investigator of the Cancer Longevity, Ancestry and Lifestyle (CLAL) study.
Growing Interest in Health History
Diamond is but one of a growing breed of family historians pursuing medical history. "In the last ten years, a scientific and healthcare revolution has been occurring. New studies and research in genetics, including the Human Genome Project, have made the public more conscious of our health. Combine that with the increase in the number of people tracing their family history–there’s a need to know what genetics is about and how it relates to your family," says National Genealogical Society (NGS) Family Health and Heredity Committee member and health care educator, Joan Kirchman Mitchell, Ph.D.
The American Medical Association agrees and supports the search for health history with Web-based tools, including a genetic screening questionnaire, a pediatric clinical genetics questionnaire, a sample pedigree, and an adult family history form. It states, "Gathering a complete family history is becoming more important as genetic medicine explains more diseases. As a patient realizes the connection within the family, he or she undoubtedly seeks to gather, perhaps informally, perhaps not, more personal information regarding risk to develop particular diseases." One of its committees is developing a universal family history tool for patients.
Interest in health history is growing as an integral part of genealogical research, evident at genealogical conferences like the NGS Conference in the States, the Federation of Genealogical Societies conferences, and the Annual Summer Seminar on Jewish Genealogy. For instance, the Family Health History lecture track at the 2000 NGS Conference in the States consisted of five talks, including a panel discussion with members of the NGS Family Health and Heredity Committee.
It’s never been easier to trace your family’s health history. Legislation like the Health and Human Services Health Insurance Portability and Accountability Act (HIPAA) ensures that you can access your private medical records, and an increasing number of Web-based sites, tools, and software capabilities can help you learn about and document your medical history.
Web-Based Tools and Sources
National Genealogical Society Family Health and Heredity Committee
This newly redesigned site answers questions about how to begin researching your family’s health history, what information you can learn, and where to go for more information.
Human Genome Project
Get the latest news on the Human Genome Project and link to educational sites and publications. The site also presents some case studies and addresses ethical issues surrounding the Project.
Genograms and Family Histories
This Internet genealogy lesson addresses the importance of family health histories and how to construct a genogram–a graphic depiction, much like a pedigree, of your family’s medical history.
Genograms
This site provides a sample genogram.
Genetic Disorders and Diseases
History of Epidemics
A review of this site provides the historical background on family diseases. For instance, my great-aunt died of influenza during the great epidemic of 1918.
National Center for Biotechnology Information
This database catalogs all known human genes and genetic disorders, providing links to relevant literature.
Glossary of Ancient Diseases, Old Diseases and Their Modern Definitions
Suppose your ancestor’s cause of death was listed as dropsy. Access one of these two sites and you’ll find out what dropsy actually entailed. The second site will tell you dropsy would be known as congestive heart failure in today’s parlance. Descriptions range from abscess to yellow fever.
Genetic and Rare Conditions
Particularly useful at this site are links to lists of support groups, genetic counselors and geneticists, and medical information.
National Library of Medicine-PubMed
This site can help you find genetic research articles about a particular condition. They are not intended for the lay person and may be difficult to absorb. However, if you’re looking for the latest research on something that afflicts your family, this is the place to go–and it’s free (vs. fee-based download services).
Web-based Tools for Compiling Your Family’s Health History
Generational Health
Pfizer Women’s Health developed this educational site that enables you to build a family health history online in a step-by-step approach. Also included are descriptions of several diseases and afflictions like Alzheimer’s, breast cancer, high blood pressure, and migraines.
American Medical Association
The AMA offers a Family History Tools Web page, mainly intended for health care professionals, that includes questionnaires and a sample pedigree.
Texas Agricultural Extension Service
This online Family Health and Medical Record brochure includes worksheets for your personal health history, your spouse’s history, and childhood immunizations.
Online Discussion Groups
Get answers to your questions and read the latest discussions with these discussion groups.
Instructions for signing up for a variety of groups dealing with specific illnesses and disabilities, including GenDisease-J, a discussion list for individuals concerned with the various genetically-transmitted diseases affecting Jewish populations, though discussions are not limited to Jews.
Google Beta Groups
Google offers seven health-related discussion groups, including AIDS, arthritis, and diabetes. Just click on "miscellaneous" and then "health."
Some Ethnic Sites
Genealogy and Genetics
A part of Stanley Diamond’s outreach program, Diamond presents a summary of his research, links to other family names carrying the Beta-Thalassemia trait, and links to genetic research articles and sites.
Joslin Diabetes Center–Amish Community
An article describing the work of Dr. Alan Shuldiner in diabetes among the Amish.
Compiling a Health History for Your Italian Ancestors
Presents a how-to article by Laura Heidekrueger with links to other sites, including creating a genogram.
Software
Family Tree Maker
From an individual’s "More" page, click on Medical Information. The Medical Information Dialog Box enables you to record height, weight, cause of death, and any other medical information. Be sure to use the Source Dialog Box so you can document where you found the information. You can also create a pre-designed Medical Information Report, including an individual’s name, birth date, and information from the Medical Information Dialog Box, or you can customize your own report.
Lifelinks International
Starting out as an educational initiative by the Manitoba Schizophrenia Society, this software package can be used to input family data that can generate a "no names" medical history that includes a relationship report.
Geneweaver
Good news for the genealogist! Though not yet available, this software program from Genes & Things, Inc., is specifically designed with the family historian in mind. Working with your GEDCOM files, it allows for your personal and your family’s health history, including documentation, medical pedigree chart, and genogram. It also includes a checklist of resources for finding health information, and a list of obsolete disease names.
Cyrillic 3
Cyrillic 3 from Cherwell Scientific is intended for use by research labs and clinics. It allows genetic counselors and others to draw and edit pedigrees. Cyrillic 2 allows these professionals to use genetic marker data in their analyses.
Genelines
Genelines features a health category that you can add to your genealogical information. An individual’s bar chart will plot his or her health-related events according to a timeline. You can also compare the events of two individuals in a single chart. This would be especially useful if you were monitoring the ages at which family members contracted a particular disease, etc. The program works with GEDCOM.
GenoPro
A free, downloadable package to help the genealogist map out medical information.
While the Web can’t provide all the primary sources to compile your family’s health history, it can provide you with tools to make sense of your family’s background in a way that will be helpful to your family and your medical professional.
Barbara Krasner-Khait’s articles about genealogy and genetics have appeared in Ancestry, Family Chronicle, Family Tree, and Heritage Quest. She is the author of Discovering Your Jewish Ancestors (Heritage Quest, Spring 2001). Barbara can be reached by e-mail at bkhait@aol.com.
Return to the Genealogical Computing Summer 2001 Table of Contents.
Genealogical Computing
