@article{c41fa82ae3ca430bb9f1cf5dae067a97,
title = "Making data sharing work: The FCP/INDI experience",
abstract = "Over a decade ago, the fMRI Data Center (fMRIDC) pioneered open-access data sharing in the task-based functional neuroimaging community. Well ahead of its time, the fMRIDC effort encountered logistical, sociocultural and funding barriers that impeded the field-wise instantiation of open-access data sharing. In 2009, ambitions for open-access data sharing were revived in the resting state functional MRI community in the form of two grassroots initiatives: the 1000 Functional Connectomes Project (FCP) and its successor, the International Neuroimaging Datasharing Initiative (INDI). Beyond providing open access to thousands of clinical and non-clinical imaging datasets, the FCP and INDI have demonstrated the feasibility of large-scale data aggregation for hypothesis generation and testing. Yet, the success of the FCP and INDI should not be confused with widespread embracement of open-access data sharing. Reminiscent of the challenges faced by fMRIDC, key controversies persist and include participant privacy, the role of informatics, and the logistical and cultural challenges of establishing an open science ethos. We discuss the FCP and INDI in the context of these challenges, highlighting the promise of current initiatives and suggesting solutions for possible pitfalls.",
keywords = "Database, FMRI, Informatics, Neuroinformatics, Open science, Open-access, R-fMRI",
author = "Maarten Mennes and Biswal, {Bharat B.} and Castellanos, {F. Xavier} and Milham, {Michael P.}",
note = "Funding Information: Realizing the need to minimize the potential for breach of privacy as the sine qua non of open-access data sharing, the FCP steering committee agreed to full anonymization of all datasets in accordance with the U. S. Health Insurance Portability and Accountability Act (HIPAA). Specifically, the 18 types of protected health information (PHI) identified by HIPAA ( Gunn et al., 2004 ) are removed from all datasets prior to upload to the FCP site for distribution. The general consensus is that once fully de-identified in compliance with HIPAA, a dataset is no longer considered to be subject to the same rules governing human research ( Freymann et al., 2012 ). With that said, a few local ethics boards have required investigators to re-consent participants to obtain explicit agreement that their data may be released in any form, even if the data are fully de-identified and anonymized (the coding algorithm is destroyed so no links can be traced between the released data and personal identifiers). This inconsistency reflects a need for more explicit guidance by oversight and funding agencies including the US National Institutes of Health (NIH), the National Science Foundation (NSF), and their international counterparts. Additionally, it highlights the need for researchers around the world to adjust their consent process immediately to inform participants that their brain imaging and phenotypic data may be shared, whether in the short run, or one or more years after study completion and publication of initial findings. Funding Information: Current financial support for the INDI team is provided by gifts from Joseph P. Healy and the Stavros Niarchos Foundation , and an endowment provided to the NYU Child Study Center by Phyllis Green and Randolph Cowen. Additional current support includes NIMH awards to MPM ( R03 MH096321 , R01MH094639 ) and FXC ( R01MH083246 ). Past support to MPM was provided by the Leon Levy Foundation and to FXC by the Stavros Niarchos Foundation. NITRC is funded by an NIH Blueprint for Neurosciences Research (neuroscienceblueprint.nih.gov) contract to TCG, Inc. ",
year = "2013",
month = nov,
day = "5",
doi = "10.1016/j.neuroimage.2012.10.064",
language = "English (US)",
volume = "82",
pages = "683--691",
journal = "NeuroImage",
issn = "1053-8119",
publisher = "Academic Press Inc.",
}