INCF SIG on Ethical Data Distribution and Reuse

This SIG will work on the cultural barriers to neuroimaging data sharing, especially the ones related to ethics

Contact info

Email: incf-nidash-data@googlegroups.com

Team

Jean Baptiste Poline (Co-chair) University of California, Berkeley, USA
Yaroslav Halchenko
(Co-chair)
Dartmouth College, Hanover, USA
Satrajit S. Ghosh Massachusetts Institute of Technology, Cambridge, USA
Jessica A. Turner Georgia State University, Atlanta, USA
Maryann Martone University of California, San Diego, USA
Dave Kennedy University of Massachusetts, Boston, USA
Krzysztof Gorgolewski Stanford University, USA
Karl Helmer Massachusetts General Hospital, USA
Tibor Auer Royal Holloway University of London, UK
Tom Nichols University of Warwick, UK
Samir Das Montreal Neurological Institute, Canada
Tristan Glatard Montreal Neurological Institute, Canada
Camille Maumet University of Warwick, UK
Cyril Pernet University of Edinburgh, UK

Description

About this SIG

While there has been a visible increase in data sharing in neuroimaging / other within the past last 5 years, the amount of data being distributed for reuse is still small with respect to the amount of data acquired, and often limited to large projects. Most of the data are not distributed, therefore not reused. There are a number of causes for this situation. One cause is that informed consents do not always have the appropriate wording for data reuse. Another cause is that researchers are afraid of being “scooped” and need credit for their study design and acquisition work. When distributed, data may come with data usage agreement that are not always compatible with ethical research. We think that the cultural barriers for data reuse are therefore probably even harder to overcome than the technical barrier when it comes to distributing data and require specific actions.

This SIG will work on these cultural barriers, and especially the ones related to ethics. We will consider actions to establish or promote ethical distribution and reuse of neuroscience data - and in particular neuroimaging - working with international organizations, journals, universities and scientific societies.

Goals and outcomes

The SIG will produce recommendations - papers or reports - and tools to promote and ease the ethical distribution and reuse of data by the scientific community. The SIG will also create repositories for appropriate data usage agreement, informed consents, etc. We will work with COPE and ICMJE to see how these recommendations can be implemented. The SIG will serve as a venue for discussion and coordinated development of the recommendations, specifications and tools. We will have meetings bi-annually alongside relevant conferences attended by many of the members. We will have regular Google hangout meetings to remain in sync throughout the year setting specific milestones ahead of our bi-annual meetings.