Data sharing and privacy issues in neuroimaging research: Opportunities, obstacles, challenges, and monsters under the bed. Issue 1 (4th July 2020)

• Record Type: Journal Article
• Authors: White, Tonya; Blok, Elisabet; Calhoun, Vince D.
• Other Names: Thompson P.M. guestEditor.; Jahanshad N. guestEditor.; Schmaal L. guestEditor.; Turner J.A. guestEditor.; Winkler A. guestEditor.; Thomopoulos S.I. guestEditor.; Egan G.F. guestEditor.; Kochunov P. guestEditor.
• Is Part Of: Human brain mapping. Volume 43:Issue 1(2022)
• Page Start: 278
• Page End: 291
• Publication Date: 2020-07-04
• Subjects: data ownership -- data sharing -- ENIGMA -- general data protection regulation -- HIPAA; Brain mapping -- Periodicals; 611.81
• DOI: 10.1002/hbm.25120
• Languages: English
• ISSNs: 1065-9471

Abstract

Abstract: Collaborative networks and data sharing initiatives are broadening the opportunities for the advancement of science. These initiatives offer greater transparency in science, with the opportunity for external research groups to reproduce, replicate, and extend research findings. Further, larger datasets offer the opportunity to identify homogeneous patterns within subgroups of individuals, where these patterns may be obscured by the heterogeneity of the neurobiological measure in smaller samples. However, data sharing and data pooling initiatives are not without their challenges, especially with new laws that may at first glance appear quite restrictive for open science initiatives. Interestingly, what is key to some of these new laws (i.e, the European Union's general data protection regulation) is that they provide greater control of data to those who "give" their data for research purposes. Thus, the most important element in data sharing is allowing the participants to make informed decisions about how they want their data to be used, and, within the law of the specific country, to follow the participants' wishes. This framework encompasses obtaining thorough informed consent and allowing the participant to determine the extent that they want their data shared, many of the ethical and legal obstacles are reduced to just monsters under the bed. In this manuscript we discuss the many options and obstacles for data sharing, from fully open, to federated learning, to fully closed. Importantly, we highlight the intersection of data sharing, privacy, and data ownership and highlight specific examples that we believe are informative to the neuroimaging community. Abstract : Collaborative networks and data sharing initiatives are broadening the opportunities for the advancement of science. However, data sharing initiatives are not without their challenges, especially with new laws that may at first glance appear quite restrictive for open science initiatives. This article discusses the opportunities, challenges, benefits for sharing neuroimaging data, including the missed opportunities in not providing participants greater say in opportunities for data sharing initiatives.