Disease prevention on the Web

By EDMUND MEINHARDT

VIEW ON HEALTH

It’s an age-old question: What determines us? Is it nature or nurture? Is it the unique patterns formed by the combination of DNA contributed by our ancestors? Or is our fate determined by our surroundings and the choices we make?

The answer lies somewhere in between. Research has shown that people with family histories of certain diseases are much more likely to get those diseases themselves — particularly in the cases of heart disease, diabetes and cancers.

But the news isn’t all bad. While family history may put some people at greater risk for serious diseases, it can also serve as an early-warning system and provide motivation to change high-risk behaviors. This is particularly true in the case of diabetes and hypertension, which are strongly linked to family history and can be slow to manifest symptoms. Both diseases can be managed effectively and complications can be avoided, delayed or made less severe through lifestyle choices such as diet and exercise. Parents with these diseases can provide healthy examples and enable their children to develop healthy habits at an early age which reduce their risk of developing the disease.

This is a great way for individuals to start, but an organized, systematic evaluation of the effects of family history and genetics would have a dramatic affect on the overall health of the population. That’s exactly the reasoning behind the formation of the Office of Genomics and Disease Prevention by the Centers for Disease Control and Prevention. In 2002 the OGDP proposed using family history as a tool for the early detection and prevention of disease. A Family History Work Group was formed, which collaborated with the U.S. Surgeon General and other federal agencies to develop a Web-based family history software tool for use by primary care providers in disease prevention.

The OGDP and the Family History Work Group recognize that family history is more than just genetics. It also represents a shared environment, learned behaviors and shared cultures. In addition, being at risk for some disease also means being at risk for others — families with a history of heart disease, for example, are also likely to have a history of hypertension and diabetes. All of these factors must be evaluated to effectively to use family history to prevent disease.

One approach considered by the OGDP in developing the software tool was to identify individuals at risk and then classify them according to the level of risk — average, moderate or high. Those classified as average would be encouraged to follow the recommendations given to the general public for preventing disease. Moderate risk would require some personalized disease-prevention recommendations. High-risk individuals would get personalized recommendations and also be referred for genetic evaluation, which would add to the available data and make the tool stronger.

This software tool, called “My Family Health Portrait,” is available through the CDC Web site. The military, HMO’s, physicians in private practice and academic researchers all expressed interest in testing the software when it was under development.

Disease prevention through family history assessment is not always a simple matter. There are ethical, legal and social issues to consider when gathering family history information and these issues can sometimes confound efforts to assess an individual’s risk.

Sometimes serious medical conditions go undiagnosed or untreated. Families don’t always accurately report their medical histories completely and accurately. Adopted individuals can sometimes run into frustrations when trying to learn their family medical histories and laws governing the confidentiality of medical records can vary from state to state.

What can you do to protect yourself? First, talk to your doctor. Get an accurate assessment of your health. Make a point of discussing family medical history with your parents, grandparents, uncles, aunts — any surviving ancestors. Look for patterns, and share what you learn with your doctor.

If your doctor feels your family history may put you at risk for disease, the two of you should discuss these risks and any steps you can take to reduce them. Then be sure to discuss this information with your children. Small changes in habits, lifestyle and environment can make a big difference — especially if they are made before problems appear.