BETHESDA, Md. — Your family history could become a source of personal salvation if it included the date grandpa was diagnosed with cancer, especially if you share that information with your doctor.
Health professionals are increasingly trying to persuade patients to create and share family medical histories, because they can provide doctors with valuable information that can help them create individualized preventative care plans, said Vence L. Bonham, Jr., chief of the Education and Community Involvement Branch of the National Human Genome Research Institute.
"It's the one tool that's freely available to everyone," Bonham said.
A keen tool for doctors
Genetic tests are a useful, emerging technology, but they remain expensive and may not give doctors as much information as a detailed family history, which will illuminate health issues that could arise from both genetics and lifestyle choices, said James O'Leary, chief of the Innovation Office of the Genetic Alliance, an organization based in Washington, D.C.
A three-generation pedigree that includes not only diagnoses, but also the age at which family members developed those conditions, is the ideal, O'Leary said. This kind of history can allow a doctor to prescribe preventive measures and additional screenings that could save a person from the family fate. Often, knowing a patient's family history can have a cascading effect that leads to selective, more effective testing. For example, a doctor might test a patient with a family history of breast cancer for genes known to cause the disease.
Tracking family medical history is a tradition begun in some families centuries ago, O'Leary said — just consider how much we know about hemophilia in some royal families. In fact, O'Leary said that since fewer families are seen by the same "family doctor" throughout their lives, the amount of medical history being recorded may actually be in decline.
However, O'Leary said there is now renewed interest in family medical histories, and the conversation around the issue is changing.
"What we're seeing more of is the intersection of family history and genetics," he said. "This has moved the conversation away from fatalism, thinking that this is just something that happens in our family."
Record keeping a family affair
O'Leary, who keeps a medical history for his own family, said that gathering information for his family's records has had the added benefit of increasing his desire to help family members who experience inherited health problems, such as the heart disease that runs in his own family.
"Family history is a great way to get people talking about health," and the need to support others in the family, O'Leary said. "Health is a family matter, and a community matter as well."
Some families don't talk about health as often as O'Leary would like. In some circumstances, health problems that run in the family might even be a taboo topic, discussed only in oblique language. But creating a three-generation family health history that can be shared with doctors and other members of the family is worth the effort, O'Leary said.
According to the Mayo Clinic, if you're having trouble collecting information for your family's health history, it can be helpful to bring up the topic at a family gathering over a holiday, or perhaps at a funeral, where the topic may come up naturally. Be sure to make your reasons for your interest in the information clear, offer to make the information available to all members of the family, and respect your relatives' right to confidentiality. If you choose to gather the information orally, listen without judgment. The Mayo Clinic also recommends mining old records, such as obituaries and death certificates that may include valuable information.
You can write the information you collect on paper to share with your doctor and extended family, but a number of resources online can also help you store and share your family's history. Some free online tools include familyhealthhistory.org and familyhistory.hhs.gov, a service provided by the surgeon general through a partnership with the National Human Genome Research Institute.
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