To protect patient privacy, the data entered into the program are maintained only on the user's computer, not on a government server or in a database. None of the information is accessible to any government agency. "We can be absolutely reassuring about this," Collins said.
The software seeks information about grandparents, parents, siblings, children, aunts, uncles and cousins. The printout looks like a standard family tree: circles for females, squares for males, shaded symbols to indicate disease, symbols with a line through them to indicate a deceased relative. (The version that's offered to people without online access differs slightly in appearance.) Pull-down menus provide limited information on cholesterol, heart disease and other health risks and conditions.
Along with the Family Portrait's list of diseases, geneticists recommend including facts such as:
General patterns of ill health, like chronic ear infections, asthma or high blood pressure.
Emotional or behavioral problems, such as depression or schizophrenia.
Dental problems, such as periodontal disease.
Health-related habits such as alcohol and tobacco use, exercise and diet.
Vision and hearing problems.
The Family History Initiative emphasizes the importance of ethnicity, encouraging individuals to record the ancestry of relatives as specifically as possible because certain diseases tend to occur in particular ethnic groups. Breast cancer, for example, seems to occur more frequently in Ashkenazi (Eastern European) Jewish women than in other groups, and Tay-Sachs disease, a fatal central nervous system disorder, also seems to run in Jewish families. African Americans are more likely to have sickle cell anemia. Babies with Finnish or Scandinavian heritage are more prone to congenital nephrosis, a kidney disease, and cystic fibrosis is found most often in people of European descent.
Kathy Zeitz's experience as a breast cancer survivor has made her an enthusiastic advocate of health family trees. When Zeitz, now a health care consultant in Arizona, was diagnosed with cancer 17 years ago at age 43, she didn't know there was a history of the disease on her mother's side of the family.
"I had no idea," she said. "That side of the family didn't share their health information with me, but cancer was quite widespread."
After her treatment with radiation and chemotherapy, Zeitz created an extensive medical history that revealed the risks she and her children faced. Her family tree helped prompt discussions about possible hereditary disorders with her family. "It opened the door to the future, so my daughter and son can better plan their own families," she said.