To staff at Boston University's (BU) in-house venture capital group, Framingham Genomic Medicine sounded like a great idea. Take the data from the massive Framingham Heart Study—which is housed at the BU School of Medicine—and repackage it into digitized databases to sell to drug companies. Academic researchers would continue to have access to raw data as they always have, and Framingham Genomic Medicine would channel part of the profits back into the study.

BU hired a chief scientific officer, raised $20 million in funding and launched the spin-off last summer (Nature Med. 6, 721; 2000). There was only one problem: the National Institutes of Health (NIH), which funds the bulk of the Framingham study, had yet to approve the plan because of concerns about commercial access to data, conflicts of interest and patient confidentiality. However, officials at the National Heart, Lung and Blood Institute (NHLBI) said the plan could work with the right safeguards.

But after months of negotiations, the agency and the university failed to come to an agreement over just how strict those safeguards should be and BU and the NHLBI have announced that the deal is off.

Several sticking points torpedoed the project, but the main issue involved access to the publicly funded data. In order to sell the databases, the company would have to give paying customers exclusive access for a period of time, explains Aram Chobanian, the dean of the BU Medical School.

Much of the debate centered on just how long a database built with on publicly funded research should remain proprietary. If the data were returned to the public domain too quickly, there would be little incentive for industry to buy it, notes Chobanian.

The proposal also suffers from bad timing. Increasingly, consumer advocates and ethicists are raising questions about companies that earn huge profits by commercializing government-funded research. And, when it comes to such research, the Framingham study is a bit of a sacred cow. More than 10,000 residents of Framingham, Massachusetts have participated in the study over the past 50 years. The results of their blood tests, EKGs and X-rays have helped draw clear links between diet, smoking, exercise and heart disease.

One participant, Gerard Desilets, wrote to the local newspaper stating that he felt “betrayed” by the plan to sell the data. “While many of us hoped that our contributions would lead to life-saving research and discovery, none of us anticipated that our contributions would be sold as a commodity for possible future profits.” But as Fred Ledley, the former head of Framingham Genomic Medicine, points out, companies are now free to request access to the raw data anyway.