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Framingham Genomics Medicine to Disband after Denial of Heart Data

NEW YORK, Dec 29 – Framingham Genomics Medicine, which planned to assemble, analyze, and sell data from the 52 year-old Framingham Heart Study, will disband after Boston University and the National Heart Lung and Blood Institute denied it access to the data, the university said Friday.

“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 followed thousands of residents of Framingham throughout their lifetimes, keeping tabs on their medical histories and their experience with heart disease. Over the years, the study findings have linked smoking, obesity, and hypertension to increased rates of cardiovascular disease. Originally the study was federally funded, but since the 1970s Boston University has provided part of the funding and has administered the study.

Framingham Genomics Medicine, founded in May with $21 million in Venture Capital funding, was going to organize the data into a database, analyze it, and sell this organized information to pharmaceutical companies and other researchers. Boston University was to own twenty percent of the stock in the company, according to a Friday New York Times report.

" The idea behind the company came in response to [the] simple problem that the data is not entered and organized in a way that would allow a more modern and aggressive analysis,” said Carleton. “Much of it was collected in the pre-computer era. If you could interest a company to put up the money, a huge amount of work could be done in a short period of time with a return on investment.”

The two parties had initially talked about the company providing corporate clients with a period of corporate exclusivity while offering immediate access to academic researchers, but neither side felt comfortable with the arrangement, Carleton said.

After a long round of public discussion on the ethics of providing this publicly-funded data to a for-profit company, the study participants were notified on Tuesday that the data would not be given to Framingham Genomics Medicine.

Instead, Boston University plans to explore more traditional avenues of fundraising to mine the data, according to Carleton.

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