My father was diagnosed with prostate cancer after a routine test detected the disease. Five years and several treatments later, he is currently fine and cancer free. A friend found out her aunt has breast cancer. Another friend learned her husband’s family has a history of alcoholism and abuse after attending an extended family reunion. During my son’s most recent visit to the eye doctor, I was asked at what age I began wearing glasses.
These stories serve as great examples of why everyone should have a medical family tree. There is a reason doctors have you fill out a family history and it is not to simply be an aggravation for parents. Part of this process is to determine what you may be predisposed and what diseases ‘run in the family.’
Some experts say 30 percent of 10,000 known diseases can be linked genetically to one’s family. The best way to keep track of your family’s risk is to make a medical family tree. Not unlike a genealogical family tree, a medical tree lists illnesses, diagnosis, age of onset and more for any medical issues your family may have running through its branches.
How to start your medical family tree.
Part of Dr. Duane Superneau’s daily routine involves creating family history records for his patients. Superneau, clinical geneticist and medical director of Genetic Services of Louisiana in Baton Rouge, and his staff create pedigrees and look for emerging patterns and particular problems that may suggest risk of a genetic disorder in the family. He said after completing a risk assessment, he advises the family appropriately based on the information.
Yolonda Hill-Spooner M.D., medical director of the Family Health Center at Baton Rouge General, said she heard about medical family trees a few years ago and strongly encourages all of her patients to have one.
“If a patient doesn’t come with the information about their family, I tell them how important it is to know their family history,” Hill-Spooner said. “They usually come prepared their next visit.”
Asking the questions.
While most agree that this type of information is valuable, it can sometimes not be the easiest to obtain. Most genetic counselors suggest three generations of history to get a clear look at genetic diseases. Hill-Spooner said she noticed older patients sometimes have a more difficult time collecting family medical history because diseases used to be considered ‘secrets’ that were not discussed.
It is best to start with the eldest relatives and see what details they can recall. Write down the members of your family in a ‘tree’ format, and take notes to share with your physician.
“You can ask a series of questions such as: ‘Is there a family history of breast cancer or diabetes?’” Superneau said. “You can also do a screening questionnaire checklist in the same way. Another creative way is to do a pedigree with lines and circles connecting moms and dads and their conditions, and then you can use legends in the squares to signify what they have.”
Personal health records online.
Several medical websites offer free options on your medical history and typically operate with enhanced security to ensure privacy of information. Summer camps, scouts and school medical forms all ask for basic information on your children such as allergies and vaccines, so it is a good idea to create a Personal Health Record (PHR) for every member of your family.
The Mayo Clinic launched the Health Manager, a free product that allows an easy way for families to manage their medical history. Parents can input basic information on their child and age and it will track the child’s immunization records, growth charts and more. Since you are the one who inputs the information into the record, you also decide who is able to view the information and decide the data that can be shared.
Another feature of Health Manager is the ability to store medical records. It is an excellent way to retrieve a medical history if you wish to change doctors or see a specialist. These files are available for them with your permission. This type of online family medical tree makes the records accessible virtually anywhere and can be linked to any physician or hospital with Microsoft’s HealthVault access.
The U.S. Surgeon General recently launched a Family History Initiative called “My Family Health Portrait.” The site offers a way for families to document their medical history with each family member having a record. Participants are asked how many aunts, uncles and children they have and a family tree is formatted.
Medical information can be filled into each person’s record and a final is available for print or download. No information is stored on the Internet with this site; they recommend downloading to a flash drive to share with relatives and physicians. Any new family member can re-orient the tree with himself or herself in the center; already obtained information will be retained.
If the internet format is simply not for you, don’t fret, you can still have an informative medical tree by creating an Excel spreadsheet or downloading a form from sites such as the National Society of Genetic Counselors. This website offers free easy to follow guides and examples.
Now it’s time to share this document with your physician. Medical history can be used so your health care provider can provide better care and look for early warning signs.
Some offices are already equipped to access your information electronically, and while some are not, chances are in the near future they will be. Talk to your doctor about having or creating a PHR and your family medical tree.