Boston University has struck a deal that would
allow a new company to sell analyses of data
from the university's Framingham Heart Study,
pioneering research into heart attacks and
strokes that has been going on for more than
half a century.
The study has amassed a huge collection of
genetic, clinical and behavioral data from the
10,000 participants, all families from the western
The university will own 20 percent of the new
company, Framingham Genomic Medicine Inc.
Venture capitalists have committed $21 million to
form the company.
Pharmaceutical and biotechnology companies are
expected to pay annual fees to access the
medical information, which will be placed in a
huge electronic database, the Boston Globe
University spokesman David Lampe said Friday
the company would sell analyses of the data,
not the data itself, which is already free to
"All the data is available to everyone for free.
It always has been. It always will be," said David
Lampe. "We are not selling any Heart Study
data for a profit, only the analyses."
The university said patient privacy would be
protected. Only two of the study's 6,000
surviving participants have asked that their
records be excluded.
Dr. Fred Ledley, Framingham Genomic Medicine's
chief scientific officer, said the forthcoming
release of the first draft of the human genome _
the mapping of more than 100,000 genes _
means the database will be a resource for
pharmaceutical researchers looking to identify
the connection between specific genes, and
health and disease outcomes.
Ledley said stock in the company would be put in
a charitable trust for the benefit of the city of
Framingham. Lampe said the company also would
help fund an ethics advisory board and science
education in the city's schools.
Dr. Claude Lenfant, director of the National
Heart, Lung and Blood Institute, which has
contributed more than $40 million to the heart
study, expressed reservations about the
proposal, saying he didn't want one company to
have exclusive access to the data.
"This data was obtained with public money.
Why should we give access to one person or one
company?" he asked.
He said agency lawyers were reviewing the
institute's agreement with BU, and still sorting
out who owns which portion of the heart study
The Framingham Heart Study has been collecting
data for 52 years, accumulating vast amounts of
information, including 500,000 chest X-rays and
electrocardiograms, 5,000 blood samples and
truckloads of paper medical records that include
diet diaries and even early studies of male
More than 1,000 published studies have stemmed
from the data collected from Framingham
residents on their lifestyle and health patterns.
Among the basic concepts that scientists have
learned from them over the years are the roles
of smoking and cholesterol in heart disease.