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Denied Heart Data, Framingham Genomics Medicine Disbands

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Framingham Genomics Medicine of Boston, Mass., which planned to assemble, analyze, and sell data from the 52 year-old Framingham Heart Study, has called it quits now that Boston University and the National Heart Lung and Blood Institute have declined to give it access to the data, the university said.

“The crux of the problem came down to an inherent conflict between the need for a for-profit company to provide some degree of exclusivity of the data which would be sold to its clients, and the need of the academic community to have immediate access to the findings,” said Kevin Carleton, a spokesman for Boston University.

The Framingham Heart Study has since 1948 tracked the medical histories and incidence of heart disease in thousands of residents of Framingham, Mass. Over time, the study findings have linked smoking, obesity, and hypertension to increased rates of cardiovascular disease. Once a federally funded effort, Boston University has provided part of the funding and has administered the study since the 1970s.

Framingham Genomics, founded in May with $21 million in venture capital funding, was going to organize the data into a database, analyze it, and sell the curated information to pharmaceutical companies and other researchers. Boston University was to own 20 percent of the stock in the company, which cost between $2 million and $3 million to start, according to reports in The New York Times and the Boston Globe.

The institute and the university had initially discussed having the company provide corporate clients with a period of corporate exclusivity while offering immediate access to academic researchers, but ultimately neither side felt comfortable with the arrangement, Carleton said.

The university now plans to look into more traditional avenues of fundraising to mine the data, said Carleton.

—Marian Moser Jones

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