[Insight-users] THE DATA SHARING PROJECT

[Luis Ibanez]

http://scientificdatasharing.com/about/


ABOUT THE DATA SHARING PROJECT

While many data sharing programs exist worldwide, widespread sharing of raw
data has not yet won across-the-board acceptance in the scientific
community,
and the very existence of all these databases makes the approach fractured
at
best.

The Data Sharing Project, launched last year by University of California-San
Francisco Professor Michael Weiner, has two goals: One is to make widespread
raw data sharing a reality — initially in the realm of medicine — through
creation of a repository system accessible to all researchers; the second
goal
is to foster broad scientific support for this move and its adoption in
other
fields of research.

HISTORY

While there is a long-established tradition in the scientific realm of
collaborative
efforts to enhance knowledge, this has generally been limited to the sharing
of pre-prints. There is considerable resistance among many scientists to
full-scale
sharing of all data, both raw and analyzed, due to its cost, time
requirements
and researchers’ fears they will be denied proper credit and financial gain
for their findings.

This resistance remains although several highly regarded programs, including
the Human Genome Project, have shown that such sharing can produce rapid
scientific
breakthroughs that otherwise would not have occurred.

Examine, for instance, a brief description of success provided by the Genome
project, which shared its raw data as soon as it was produced:

“Technology and resources promoted by the Human Genome Project are starting
to have profound impacts on biomedical research and promise to revolutionize
the wider spectrum of biological research and clinical medicine.
Increasingly
detailed genome maps have aided researchers seeking genes associated with
dozens
of genetic conditions, including myotonic dystrophy, fragile X syndrome,
neurofibromatosis types 1 and 2, inherited colon cancer, Alzheimer’s
disease,
and familial breast cancer.” (Human Genome Project: About The HGP)

With major projects demonstrating the tremendous scientific breakthroughs
made
possible by data sharing and with the decline of technological barriers
impeding
such efforts, the time has come to work to achieve widespread sharing of raw
data worldwide.

The Data Sharing Project proposes to further this goal initially in the
field
of medicine by working to create a raw data sharing program that will serve
as a model to other disciplines attempting to make their own way in this
arena.

The Northern California Institute for Research and Education (NCIRE) —
together
with the University of California-San Francisco and support from the Michael
J. Fox Foundation — is now in the process of canvassing the scientific
community
to analyze the best possible data sharing program and practices to establish
in the field of medicine.
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