Top U.S. Doc Urges Electronic Family Tree

It happens all the time: Filling out that clipboard at the doctor's office, you can't remember what cancer killed Aunt Sally or when Dad had his heart attack.

A good family health history is far more important than a gene test in predicting your future medical needs, but it's hugely underused. On Tuesday, the government begins offering a free new service to try to change that - helping people compile one at home, e-mail it to relatives who can fill in the gaps, and even pop it straight into their doctors' computers.

Quiz enough extended family about who battled what disease, and you can fill it out in as little as 20 minutes.

"That is an amazingly positive investment," Acting Surgeon General Steven Galson, whose office spearheaded the new initiative, told The Associated Press. "You're going to help your doctor learn a lot more about you by spending those 20 minutes, and you can share that invested time around your family and with your physicians way into the future."

The goal: Just as people create ancestral family trees, create a family health tree. It may sound old-fashioned in this era of gene discovery. But genetics specialists use these "pedigrees" to look for patterns of inherited illnesses that can provide a powerful window on someone's brewing health risks.

"Family health history is the first genetic test but it encompasses much more than genes," says James O'Leary of the nonprofit Genetic Alliance.

A family's shared environmental or lifestyle factors are key, too. Add that together, and a family health tree "is the way you identify what is important to pay more attention to," he explains.

Consider: Maybe Dad's deadly heart attack at 60 isn't his 40-something son's top risk, much as he focuses on that tragedy. The real red flag might be the prostate cancer that Dad survived at age 48 and that killed his own father and brother in their 50s.

Yet between patients who don't know relatives' intimate health details and rushed doctors who don't push for it, family health histories too often are brushed aside. A survey by the Centers for Disease Control and Prevention found fewer than 30 percent of Americans have ever collected health information from relatives to compile one. And some surprising recent research suggests that when people do, accuracy varies by disease: They do much better at listing which relatives had breast cancer than who had ovarian cancer, for instance.

"It's terribly frustrating and I'm sure it's prone to many errors," Dr. Doug Henley of the American Academy of Family Physicians says of the clipboard-in-the-waiting-room ritual.

Nor do patients necessarily know what ailments to list. Heart disease or cancer, sure. But what about Mom's string of miscarriages? That your grandmother and her three sisters share osteoporosis' classic hunched back? Or the blood clot that made your sister have to give up oral contraceptives?

The surgeon general's office issued the first attempt to guide creation of family health trees in 2004, with a form patients could print out and carry to the doctor.

On Tuesday, the site reopens - at https://familyhistory.hhs.gov

after a high-tech facelift to make it not only more in-depth but truly electronic.

It's private; users download the information to their own computers. Then they can e-mail a tree-in-progress to family members to fill in missing information.

And with a simple keystroke, relatives can "reindex" the tree so that instead of showing the biggest health risks for Cousin Sue who started the project, Cousin Bill can see what risks are more prone to his side of the family.

Finally, the tool is readable, even customizable, by many of the computer systems that doctors are using to create "electronic medical records," something Health and Human Services Secretary Mike Leavitt calls key to ushering in better quality health care.

The family physicians' Henley says even if your doctor hasn't gone digital, keeping a printout of the tree's detailed information in a patient's chart still provides crucial information, such as steering someone away from gene tests they don't really need.

But a small pilot study at Partners Healthcare in Boston suggests the digital potential. Embedding the e-family tree straight into software that adds in a patient's test and exam results produced a personalized report on cancer risk in minutes.

"This is the new frontier," says Leavitt, who points to a family that discovered a pattern of inherited colorectal cancer and now is exploring earlier colonoscopies to prevent death. "Information is at the root of good health."