U.S. Department of Health and Human Services.  HHS.gov  Secretary Mike Leavitt's Blog

Studies

Framingham Study

When I was Governor of Utah I became fascinated by the potential of personalized medicine. Researchers years before had begun developing the Utah Population Database (UPD) which is genealogy records accumulated by the Church of Jesus Christ of Latter Day Saints, combined with medical records, disease registries and other publicly available documents. When combined with genetic information on certain families, the UPD was a powerful tool in finding the genes linked to specific forms of cancer and other diseases.

I wanted to enhance the Utah database by creating capacity to track directly more families. Our strategy was to identify families that had settled in Utah in the mid-19th century and track their descendents. Incidentally, my family fit into that category.

Periodically, I would invite some of the most respected members of those families to the Governor’s residence for dinner with me and a genetic scientist. Our conversation would lead to an invitation for their family to participate in the project. Accepting meant they would organize what I called a “poke and probe” family reunion. Family members would fill out questionnaires about their history and behavior. Each would be physically examined. Each participant committed to repeat the effort in subsequent years.

One night, after sitting quietly through dinner and the conversation, an older man indicated to me that he had something he wanted to say.

“I don’t understand all the science here, but I do believe there is something to this genetics stuff.” He continued, “This week I was diagnosed with macular degeneration and I’m 70 years old. When my father was 70 years old, he had the same symptoms. When my grandfather was 70 years old, he had them too. If there is something my family can do to prevent a grandson or granddaughter from having to go through this—we’re in.”

A couple of years later, I found myself Secretary of Health and Human Services. I attended a meeting launching another project to pioneer future genetics research. At that meeting it was announced that the gene causing macular degeneration had been isolated.

I doubt my friend from Utah had anything directly to do with the discovery. However, his family’s participation in that project will undoubtedly result in future announcements.

This week I was in Framingham, Massachusetts, a community about 45 minutes out of Boston. It’s a quiet little town and one wouldn’t naturally think of it as a capital of medical research. However, if you use the words Framingham Study to most medical researchers it evokes a responsive recognition.

In 1948, the Public Health Service, working with some local physicians and researchers, persuaded the entire community to be part of a long term study on a wide range of health related behavioral studies. They have been at it now nearly 60 years. More than 14,000 people have participated. The benefits to the average American just keep piling up. (Read op-ed article)

Having detailed medical histories on all these people and their families, when combined with new genetic information and electronic medical record technology, will be profoundly important.

I traveled to Framingham to thank the participants in that study and to encourage them to pass the ethic of consistent involvement to their children. It was a reminder to me of how important it is that ordinary people understand the impact they can have on the health and well-being of future generations.