FRAMINGHAM: Venture Firms to Sell Study Online
Several venture capital firms have committed $21 million to Framingham Genomics Medicine Inc., a new firm that will compile data online from the world-renowned Framingham Heart Study and sell it to researchers and pharmaceutical companies, the Boston Business Journal reports. According to the National Heart, Lung and Blood Institute, which conducts the study with Boston University, questions remain about who will have access to the information and who will profit from it. Claude Lenfant, director of the NHLBI, sent a letter last week to the principles of Framingham Genomics, requesting that the data "not be doled out exclusively" and that "patient histories ... remain confidential."
Although Lenfant has not received a reply, Framingham Genomics chief scientific officer Fred Ledley attempted to assuage any fears, claiming that "the information will be made available to all interested parties" and "all patient histories are confidential." He added that Boston University was given a "minor stake" in the company to provide oversight into its operations. While Ledley insists the company's "real goal is to distribute the data and have it used as widely as possible," experts agree that the profit potential for such an endeavor is great. The Framingham Heart Study, founded in 1948, includes the medical histories of three generations of Framingham, Mass., residents (Connolly, 5/22).