Memo - September 6, 2000
Re: Submission of Data from Human Subjects to
The fMRI Data Center
To Whom It May Concern:
Neuroscientists are utilizing functional neuroimaging of the human brain in vivo to
investigate the complexities of cognitive function now more than ever. However, despite the
popularity of brain imaging, there remains little, if any, sharing of raw image data occurring
amongst members of this widening community. The fMRI Data Center
(http://www.fmridc.org) endeavors to act as a repository for data sets used to obtain results
published in the leading peer reviewed journals, thereby enabling other researchers from around
the world to download and reproduce experimental results, examine new data processing
methodologies, and evaluate novel experimental designs.
To fulfill our goal of providing the most complete description of experimental data
possible, variables from individual subjects who participate in neuroimaging studies will need to
be stored in a Web accessible format. Other investigators may then download this raw subject
data for subsequent analyses. Study parameters such as subject age, gender, ethnicity,
handedness, etc. will likely be submitted by investigators to the database in addition to both
functional image time series and high resolution structural images. With this in mind, we fully
recognize the importance of maintaining the overall anonymity of subject data and acknowledge
that this will be an area of concern to many human subjects committees evaluating proposals for
research when the data obtained from that study is likely to be submitted to the database. We
cannot overstate how seriously we consider the issue of subject confidentiality and actively
discourage investigators from submitting any information that could be linked back to any
individual subject. Internal to the Data Center we are making every reasonable effort to remove
or encode information that could potentially be used to personally identify subjects. The
methods being employed are as straight-forward as deleting any mention of social security
numbers or other such information that may have been collected by submitting researchers for
their own subject identification scheme, to as involved as examining mathematical and
computer-based techniques for the augmentation of structural image data so as to conceal subject
identity in 3-D reconstructions of the head.
The success of The fMRI Data Center hinges upon the trust that researchers have
in confidently submitting their neuroimaging and behavioral data and knowing that every
measure is being taken to preserve subject confidentiality. We are continually evaluating how
best to ensure and maintain subject anonymity and consider this to be one of the single most
important responsibilities of maintaining this valuable resource. We encourage you to contact
the Data Center if you have further concerns regarding the issue of subject confidentiality.
Yours sincerely,
The fMRI Data Center
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