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17 April 2014 12:48 pm ,
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- 17 April 2014 12:48 pm , Vol. 344 , #6181
- About Us
Framingham Deal Killed
29 December 2000 7:00 pm
BOSTON--A controversial plan to use private capital to upgrade a valuable public database collapsed amid concerns that it would cede too much control to a for-profit company. Boston University (BU), which runs the venerable Framingham Heart Study, and the National Institutes of Health (NIH), which funds the 52-year-old effort, instead will try to put together a nonprofit consortium in the coming year to modernize the massive database.
The decision, announced Tuesday in a joint letter to the study participants, deals a mortal blow to Framingham Genomic Medicine Inc. of Framingham, Massachusetts, which was raising money to organize, digitize, and analyze the Framingham data. The company planned to repackage and sell data to the pharmaceutical industry (Science, 30 June, p. 2301). The NIH decision also is a disappointment to BU, which was instrumental in forming the company.
The study has monitored the health of more than 10,000 people in the small town of Framingham during the last half-century, yielding a scientific treasure trove. But much of it is stored in boxes or file cabinets. NIH has been reluctant to put up the millions of dollars needed to update and upgrade the database, so in April, BU proposed letting a private company do it instead. The plan raised tough ethical issues, ranging from questions about how outside scientists would get access to the revamped data to whether personal medical data collected with public money should be sold to private companies.
Ultimately, negotiations between BU and the National Heart, Lung, and Blood Institute (NHLBI) foundered on how to balance scientific access to the data with the company's proprietary interests. "BU was under some pressure from the company to reach an agreement which gave them close to exclusive access to the data," says NHLBI director Claude Lenfant. "We could not go along with that." Company officials could not be reached for comment. "The rationale was good, but the methodology was not," says Jay Lander, a Framingham attorney and vice-chair of Friends of Framingham Heart Study, which represents participants of the study.
Now, the challenge is to find a new way to pay for the database. Lenfant envisions a cooperative agreement among companies, nonprofits, and other interested groups. But he insists that the raw data should be available to everyone, and that only refined data should be private property. Aram Chobanian, dean of BU's medical school, agrees that approach is now the way to go. "It's a slower and less effective way," he adds, "but probably better in the long term."