Your Medical Roots
Medical Family Tree
By Gina Shaw
Reviewed By Charlotte Grayson
Do you know what your grandfather on your father's side died of? How old was he when he died? What about on your mother's side?
"People spend a lot of time on genealogy and getting family history information -- where their great-grandfather was buried, what church their grandmother got married in -- but they don't know what they died from," observes Robin Bennett, president-elect of the National Society of Genetic Counselors, a board member of the National Coalition for Health Professional Education in Genetics, and a genetic counselor at the University of Washington Medical Center in Seattle.
Finding out what your grandparents died from, although it may not be as charming as finding the old country church where they were married, could help save your life. More and more people, as they track their genealogy, are also compiling a medical family tree, a map that looks like the spreading branches of a regular family tree but also includes information about each relative's age at death, cause of death, and when they developed the disease that killed them.
"I'm living proof that medical family trees can save your life. If you don't think that illnesses and diseases are related, you might be wrong," says Carol Krause. She should know. A dozen years ago, her 38-year-old sister was diagnosed with ovarian and endometrial cancer -- and the four Krause sisters began doing detective work, tracing a family tree of cancer deaths that included their mother, dead of ovarian cancer at 56, and their father's sister, dead of ovarian cancer in her 30s. Of 16first- and second-degree relatives, only three were cancer-free.
For Carol, a colonoscopy revealed a tumor in precisely the same location as one that had killed her grandfather. Half her colon was removed. Three years later, after a regular mammogram came back with a red flag, she was diagnosed with early-stage breast cancer and, in view of the family history, had a double mastectomy. Then in their 40s, the sisters also elected to have their ovaries and uterus removed.
"I'm alive today because I took action early," says Krause, who wrote How Healthy Is Your Family Tree? A Complete Guide to Tracing Your Family's Medical and Behavioral Tree. "People think they don't have to start worrying about these things until their 50s. If I'd waited until then, it would have been too late."
Cancer is not the only disease that can have a genetic link. Heart disease, alcoholism, and high blood pressure are just a few of the diseases that run in families, and experts believe that as many as half of all health conditions have some genetic basis.
So how do you find out if any diseases lurk in your family tree, and what their implications are for you?
Start with a standard family tree form, available in genealogy books or on the web. Fill in as many names, death dates, and causes of death as you can. Going back two or three generations (as far as your great-grandparents) will usually give you a good medical picture.
Start with living family members. Ask your parents, their siblings, and any living grandparents how and when their relatives died. "Family reunions are good times to ask about medical history," says Bennett, whose book The Practical Guide to the Genetic Family History was written for professionals but contains a host of resources the layperson can use. "Emphasize to people that you're not interested in information to blame anyone. Recognize that this may be sensitive information." Krause's book contains sample letters to statistics bureaus, as well as hints for how to write recalcitrant relatives. You can also order records online.
If some branches are still bare, start hunting down death certificates. "Write to the state bureau of vital records and say that you need the death certificate for Joe Smith who died in Iowa, probably in 1956 or 1957," says Krause. A public-record death certificate usually doesn't cost more than $10.
Still have gaps? Maybe the death certificate reads: "Cause of death: tumor." But what kind of tumor? Try the hospital. "If you know what hospital they died in, you can make a consultation appointment and explain that this is a health issue for you," Krause says. Hospitals are vigilant about confidentiality, so bring documentation showing that you're related to the person, if you can.
Not all diseases in the history carry the same genetic weight. If your grandfather died of Alzheimer's at 80, that's much less worrisome than if it killed your father in his 50s. "Anything that happens at a younger age than usual -- heart disease in people in their 30s, prostate cancer in people in their 40s, breast cancer below age 50, prostate cancer below age 55 -- these make us worry that it may be genetic," says Bennett. That's why it's not just important to know what a relative died of and when they died, but when they developed the disease.
A medical family tree may also reassure you. "We have great evidence that says that women profoundly overestimate their risk for breast cancer," says Bennett. "They'll say 'My mom and my aunt both had it.' But if they were both 70 years old when they got it, the risks are no different than for any average woman."
Remember, a medical family tree isn't just for you. "It's one of the greatest gifts you can give your children," says Krause. "Make sure you have a good one so that your children and their children will be protected by it."
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