Which relatives is it important to include, and how far back should you go? Certainly knowing information about your parents, your aunts and uncles, even your cousins can be helpful, and you should keep track of medical problems in children or grandchildren. Usually, knowing about three generations is very helpful, but any information is valuable.
One resource for gathering information about people who have died is death certificates. Oftentimes, even though someone might have died of heart disease, if they had cancer during their life it is noted on the death certificate. If they died of cancer, it might say how long they had their cancer or where the primary cancer was, even though they died of metastatic disease, which is cancer that has spread to another part of the body.
What kinds of information should be included in a family health history? You would want to know the age at which a person died and the cause of death. You should also know the age at which a person developed a medical condition and if they ever had surgery. For example, a female relative might have had her uterus or ovaries removed. With respect to cancer, you would want to know primary type of cancer and not just where it metastasized.
Do you have any suggestions for approaching relatives about a subject that could be sensitive? You can approach your relatives by saying, "I'm hoping to learn more about my medical family history so that I can potentially have this information for myself or my children." You can also emphasize that you're not trying to blame anyone for what's happened in the family. All families have medical conditions that run in multiple relatives, and it's no one's fault when you pass on a genetic condition.
What is the best way to present the information in a family health history? You can record family history using standard symbols called a pedigree, where squares are men and circles are women. Maybe you'd shade half of the symbol if a person had cancer and another half if they had heart disease. That way you can follow the conditions in the family and make a key that says when you got the information and what your symbols mean. Pedigrees are very graphic and when you take one to your health care providers it's very easy for them to see the information quickly versus having to read a bunch of records.
But the most important thing is to track that history down. The National Society of Genetic Counselors, the American Society of Human Genetics and the Genetic Alliance, which is a consumer support network for people who have genetic disorders in their families, is launching a family history information tool this fall, so that will be available on all of their websites. And the Centers for Disease Control is working on developing some family history tools.
Do you have any advice for people who might not have access to their family members, such as those who are adopted? Someone who doesn't know their biological family's health history should follow standard screening recommendations and have physical exams with their physician on a regular basis, as would be recommended for anyone of their age. And then they can start keeping track of medical information for their children.
When would you recommend that someone seek out a genetic counselor or other genetic health professional? Any time there is a medical condition that runs in the family that is of concern, a person can discuss it with their primary health care provider first.