Back to Front PageVOLUME 6, NUMBER 4

BU Venture to Sell Analysis from Framingham Heart Study

A new for-profit venture will develop a mammoth electronic database and sophisticated analyses based on the world-renowned Framingham Heart Study. But while supporters, including Boston University, hail it as a new standard in research, some critics worry that the new company will use public information for private gain.

"This is the gold standard in research," says Fred Ledley, M.D., president and chief scientific officer at Framingham Genomic Medicine Inc., the for-profit company recently formed by BU and venture capitalists. Dr. Ledley explains that the company will make available numbers, text, and images, such as X-rays and EKGs, in a digital format-and provide tools to put the information in context. Pharmaceutical and biotechnology firms are expected to pay a hefty annual fee to access the data.

The Framingham Heart Study was established in 1948 in the town of Framingham, Mass. The study, which included 10,000 of the Boston suburb's citizens, is credited with many key medical advances, including the discovery of the role of cholesterol, hypertension, smoking, and diet in determining the risk of heart disease.

BU, with an initial investment of $35 million, will own 20 percent of the new company. "This is the next big step in the development of the Framingham Heart Study," says David Lampe, associate vice president of University Relations at BU. He stresses that in no instance will the company sell Framingham's raw data, which have always been available for free. Lampe also emphasizes that the integrity and anonymity of the study will continue to be strictly assured.

But not everyone is convinced that the new venture is in the best interest of science. In press accounts, Claude Lenfant, M.D., director of the National Heart, Lung, and Blood Institute (NHLBI), has voiced concerns that the new company will inappropriately profit from government-funded data. The NHLBI, part of the National Institutes of Health, has financed much of the Framingham study. "The language could be interpreted as such that they would have exclusive access to the data. We would never accept that. This data was obtained with public money," Dr. Lenfant told the Boston Globe. He also expressed reservations about privacy protections and researchers' conflict of interest. BU counters that the new company's service will benefit the public, making research more efficient by affording researchers more time to investigate actual diseases and the prospects for eliminating them. Dr. Ledley says that even now the best medical records are not designed for research, creating obstacles and potential errors in studies. "Oftentimes, the basic standards of epidemiology cannot be met," Dr. Ledley says. "Because the Framingham data were designed for research, this is as good as it gets."

What's more, Dr. Ledley stresses that the company and university are committed to including the Framingham community in the new venture. Framingham Genomic Medicine arranged for an informational meeting for Framingham citizens and set up a hotline to answer questions about the initiative, while BU has contributed a portion of the company's founding stock to a newly formed Framingham Charitable Trust.

The community also has been charged with ethical oversight of the company. To that end, an independent group, the Friends of the Framingham Heart Study, will hire an ethicist. Dr. Ledley reports that Arthur Caplan, Ph.D., director of the Center for Bioethics at the University of Pennsylvania and a Framingham native, is also involved in the project's ethical evaluation.

While Lampe admits there is money to be made in the university's new endeavor, he says that BU intends to funnel its share of the profits back into research. "This is a source of money for creative research-the kind that may not be targeted to specific results but has the potential to lead to the most amazing discoveries," he maintains.

Information: David Lampe, (617) 353-3676

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