Family Medical History Fumbled

Medical Authors and Editors: Barbara K. Hecht, Ph.D. and Frederick Hecht, M.D.

November 9, 2004 -- "This morning ... U.S. Surgeon General Richard Carmona will launch a new initiative to encourage all American families to learn more about their family health history. The reason is simple: knowing your family's medical history can save your life,"

This is an e-mail message we received yesterday together with a press release from Health and Human Services (see below).

A Family Medical History

We are fully in favor of people learning more about their family medical history. A history like this should outline the family structure and the relationships within the family and include information about diseases in family members. The family history is best recorded in the form of a family tree, or pedigree. It should use conventional symbols such as a square for a male, a circle for a female, and so on.

A medical family history should include all first degree relatives (parents and siblings), second degree relatives (aunts and uncles) and third degree relatives (cousins and grandparents), at the least.

Besides depicting familial relationships, a pedigree also must contain vital medical information such as the birth date, date of death, cause of death, health problems, and results of key medical tests.

Fumbling the Family History

We found the government's "My Family Health Portrait" laborious to download and get running. In the process we had to download another program and install it. Without recounting all the irritating problems we hit, let's just say it took too long. A good hour. Granted we are not the world greatest computer geeks, but still....

However, we are both medical geneticists and have taken many family histories in pedigree form. We find the diseases you are asked to check off for each family member for the government's "My Family Health Portrait" far too few in number.

For a male, there are only 5 specific conditions -- coronary heart disease, stroke, diabetes, colon cancer, and breast cancer. Why ask about breast cancer in males? It is a relative rarity.

For a female, there is a sixth condition -- ovarian cancer. If they could add that for a female, why couldn't they present a more effectively designed list of diseases to check off?

For anything other than these 5 or 6 specific conditions, there are two slots for an additional disease. If you have more than that in your health history, you are out of business.

Race/Ethnic Group

There is a slot to fill in your "race/ethnic group" but none to indicate this for anyone else in the family. A good family history includes the racial or ethnic origin of each of the four grandparents, at the very least.

After asking your "race/ethnic group," the program then takes no account of it. Why if someone is African-American, why is sickle cell disease, hypertension, or prostate cancer not a good choice? Or if you're Jewish, why not Tay-Sachs disease or Gaucher disease? And so on.

The Final Fumble

The crowning glory of the government's My Family Health Portrait is "Create My Family Tree." It draws out your family tree in resplendent blue and white pedigree form.

But then there is a notice that reads: "You can only use Create My Family Tree once. After you build your family profile, Create My Family Tree disappears from the menu."

Bummer!

Comment

Before the government went to all this trouble (and expense), why did it not do a beta version to work out some of the problems? As it is, My Family Health Portrait is poorly painted.

Related MedicineNet Links

• Disease Prevention in Men
• Disease Prevention in Women

Below is the press release from the National Institutes of Health:

HHS Launches New Family History Initiative
Nearly every American believes that knowledge of family history is important, yet only one-third attempt to gather it

HHS Secretary Tommy G. Thompson today launched a Family History Initiative to encourage all Americans to learn about their families' health histories as a way of promoting personal health and preventing disease.

"With this new family health history tool we are entering the next generation of prevention," Secretary Thompson said. "In addition to healthy eating and exercising, we know that technology and research can also prevent and treat disease before the disease becomes debilitating. The miracle of the human genome provides new hope for millions of Americans and a new path to health for all of us."