For any medical history, it's important to zero in on major health problems family members had before reaching their sixties, said Richard Imirowicz, a child and adolescent psychiatrist practicing in Rockville. Imirowicz worries less about problems that appear in relatives in their seventies to nineties.
As a doctor treating the young, Imirowicz said, he pays special attention to mental health problems that can be inherited, such as depression, bipolar disorder, schizophrenia and attention-deficit hyperactivity disorder. "It's rare for families to bring in a medical history, but it would be welcomed," he said. "The more information we get, the better."
Georges Benjamin, executive director of the American Public Health Association, said it is significant that the Family History Initiative has emerged from the office of the nation's top doctor because "the power of the Surgeon General's office is the power of the bully pulpit." Carmona's credibility is a tool that can "move people to action" on their health, he said.
Branches on the Tree
Genealogists refer to "horizontal lines" as siblings, aunts, uncles and cousins, and "vertical lines" as parents, grandparents and great-grandparents. Most health family tree projects advise people to include both horizontal lines and vertical lines and to include four generations.
Initial efforts at planting a family tree are often incomplete, but certain steps can improve the quality. If a deceased relative was not forthcoming about his or her health, or if their conditions are unknown, Carmona recommends simple sleuthing. Death certificates and obituaries, Social Security and pension documents, insurance records, family Bibles, correspondence and military records may yield clues.
The process may involve contacting relatives one has not spoken to for a while, asking family members very personal questions and delving into non-health-related issues that some would rather let alone. When Deborah Goldstock Ringel asked older relatives about her grandmother's sister, who died in her early forties, she heard the same explanation that had circulated for decades: that she'd died of "indigestion."
Ringel, who had long been skeptical of this claim, pushed for more information. "When we said that we didn't buy the indigestion story, it came out that her husband was suspected of beating her," she said.
If relatives believe the past should remain in the past, the family tree can suffer. "My grandmother would no more tell you her personal history than what was in her bank account," Carmona said. "That's considered closely held information. It's a cultural difference. You have to be persistent."
In some cases, a particular relative with an inheritable condition "feels guilty that they may be the source of a disease in the family," said genetic counselor Robin Bennett. Bennett has also seen cases in which the stigma surrounding certain medical conditions, such as mental illness or substance abuse, compels people to hide aspects of their health history. Relatives may be embarrassed about discussing "female problems" such as cervical or ovarian cancers. If you come across this sentiment, Bennett said, it is helpful to "assure relatives that you are seeking information for your own health, and that it is no one's fault that a condition runs in the family."
Collins's work with the Family History Initiative prompted him to take a closer look at his personal medical pedigree, even after a decades-long career spent tracking genetic disorders.
"The process reminded me of a maternal aunt who died under circumstances that were never clear to me," he said. "When I go to see my parents for Thanksgiving, I plan to talk more about this so I can pass the information on to my two daughters. That way, they'll have the information for their families," with benefits possibly reaching into future generations, he said.
Alison Buckholtz last wrote for the Health section about parents who discipline their children with hot pepper sauce.