Data sharing and privacy issues in neuroimaging research: Opportunities, obstacles, challenges, and monsters under the bed
Open accessAbstract
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.
AI snapshot
Written from the paper’s full text.
TL;DR
This review argues that neuroimaging data sharing offers major scientific benefits but raises privacy, ownership, and legal challenges, with participant-informed consent as the key to resolving many of them. It maps sharing options from fully open to federated/decentralized to fully closed, concluding that GDPR/HIPAA and related rules are often “monsters under the bed” rather than absolute barriers.
Key findings
- Data sharing and pooling increase sample size, precision, reproducibility, and the ability to parse heterogeneity; examples include ENIGMA, ABIDE, the Human Connectome Project, and the UK Biobank, which aims to release neuroimaging data from 100,000 participants.
- Legal frameworks shape sharing: GDPR went into effect May 25, 2018; HIPAA was implemented in 1996 and its Privacy Rule on April 14, 2003; GDPR gives participants greater control, including the “Right to be Forgotten,” while HIPAA permits PHI sharing under IRB waiver, preparatory research, decedents, or consent. NIH requires a data sharing plan for applications with yearly direct costs greater than $500,000, and GDPR non-compliance can carry a potential 20 million euro fine.
- Sharing lies on a spectrum—from peak coordinates, unthresholded/network maps, meta-analysis, and mega-analysis to preprocessed, NIfTI, DICOM, or fully open data—with trade-offs in information content, compute load, custom subject-level models, and privacy (Table 1). Decentralized approaches such as COINSTAC, DataSHIELD, and ViPAR allow analysis without centralizing raw data.
- The greatest obstacle is researchers and institutions, not participants, funders, or laws; concerns include lack of credit/compensation, scooping risk, cost, re-identification, and unintended use. Proposed solutions include a share-index/data citation, grace periods, funding support, DUAs/DTAs, and decentralized methods.
Methods
- The paper is a narrative review/commentary; no empirical dataset, sample, or formal statistical analysis is reported.
- It synthesizes legal and ethical frameworks, data-sharing initiatives, and sharing approaches, including a table of trade-offs across sharing levels.
- Not stated in the paper for design, data or sample, and main analysis beyond this narrative discussion.
Limitations
- The paper does not present a formal limitations section.
- Evident from the text: it is a narrative/opinion review rather than a systematic review or empirical study, so examples are selective and proposed solutions are not empirically tested.
- The paper acknowledges that data sharing entails risk, that risk/benefit balances differ by institution and country, and that re-identification concerns remain, including that defacing may degrade downstream image analysis.
Model-written summary. Check it against the paper before relying on it.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
0 of 76 cited sources checked · 0 supported · 0 flagged
- Premisecitation
Privacy concerns have only increased since the initial cautionary tales of the Netflix competition in which competitors inadvertently re-identified individuals from anonymous datasets and the example of genetic reidentification from datasets anonymized per NIH guidelines.
“Privacy concerns have only increased since the initial cautionary tales of the Netflix competition in which competitors inadvertently re‐identified individuals from anonymous datasets (Netflix Prize Privacy Concerns—https://en.wikipedia.org/wiki/Netflix_Prize#Privacy_concerns) and the example of genetic reidentification from datasets anonymized per NIH guidelines (Cassa, Wieland, & Mandl, 2008; El”
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- cites El Emam, 2011
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- cites Homer et al., 2008
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- Premisecitation
Larger sample sizes offer the ability to parse the considerable heterogeneity of the population into more homogeneous groups.
“Larger sample sizes also offer the ability to parse the considerable heterogeneity of the population into more homogeneous groups.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Manrai, Patel, & Ioannidis, 2018
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- Premisecitation
Data sharing and data pooling initiatives help advance scientific discovery by increasing sample sizes, which allows greater precision and the ability to measure smaller effects.
“These data sharing initiatives help advance the process of scientific discovery through increasing sample sizes, which allows for greater precision and the ability to measure smaller effects, although smaller effects can also be associated with either smaller biological effects or potentially confounding factors (Smith & Nichols, 2018).”
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- Interpretationreasoning
Sharing individual datasets enables parsing heterogeneous groups to better understand underlying neurobiology.
“However, sharing of the individual datasets can be extremely beneficial for numerous reasons, including increasing sample size (Button et al., 2013), better performance (Boedhoe et al., 2019), greater flexibility in controlling for confounders, and the ability to parse heterogeneous groups to better understand the underlying neurobiology.”
Quote in the paperSubstantial claim - Premisecitation
Whoever owns the data has control over the data, its dissemination, and the timing of dissemination.
“Whoever owns the data has control over the data, its dissemination, and the timing of dissemination (Fishbein, 1991).”
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- Premisecitation
One of the strongest messages inherent in the EU's GDPR is that individuals have much more control of their own data.
“Yet one of the strongest messages inherent in the EU's GDPR is that individuals have much more control of their own data.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites GDPR, 2016
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- Interpretationnone given
Pooling results for meta-analyses has the major advantage that data is analyzed locally and thus it is not necessary to share individual data.
“Pooling results for meta‐analyses has the major advantage that data is analyzed locally and thus it is not necessary to share individual data.”
Quote in the paperNot a substantial claim - Interpretationown data
Even removal of facial features from an MRI scan may not completely ensure privacy.
“Thus, even removal of facial features from an MRI scan may not completely ensure privacy.”
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When an individual participant living within the EU invokes their 'Right to be Forgotten,' any personal and de-identified data are then erased or destroyed.
“When an individual participant living within the EU invokes their “Right to be Forgotten,” any personal and de‐identified data are then erased or destroyed.”
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- Premisecitation
Iterative meta-analyses can be identical to mega-analysis.
“In addition, iterative meta‐analyses can be identical to mega‐analysis (Sarwate, Plis, Turner, Arbabshirani, & Calhoun, 2014).”
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- Interpretationnone given
Sharing individual datasets provides greater flexibility in controlling for confounders.
“However, sharing of the individual datasets can be extremely beneficial for numerous reasons, including increasing sample size (Button et al., 2013), better performance (Boedhoe et al., 2019), greater flexibility in controlling for confounders, and the ability to parse heterogeneous groups to better understand the underlying neurobiology.”
Quote in the paperSubstantial claim - Premisecitation
In many cases, both in Europe and North America, it is the academic institutions that claim ownership of data from sponsored research projects.
“In many cases, both in Europe and North America, it is the academic institutions that claim ownership of data from sponsored research projects (Alter & Gonzalez, 2018).”
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- Interpretationreasoning
Initiatives such as 'Open Humans' are highlighting the potential paradigm shift related to the ownership of personal data moving in the direction of the owners being those from whom the data were originally derived.
“Initiative such as “Open Humans” are highlighting the potential paradigm shift related to the ownership of personal data moving in the direction of the owners being those from whom the data were originally derived.”
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When comparing results of meta- and mega-analyses, the two are quite similar.
“When comparing results of meta‐ and mega‐analyses, the two are fortunately quite similar (Debray et al., 2015).”
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- Premisecitation
Mechanisms are emerging, such as 'Open Humans' that allow research participants, after obtaining their own data, to allow it to be uploaded to a site in which the participants receive requests when researchers would like to access their data to address specific questions.
“That said, mechanisms are emerging, such as “Open Humans” (Tzovaras et al., 2019) that allow research participants, after obtaining their own data, to allow it to be uploaded to a site in which the participants receive requests when researchers would like to access their data to address specific questions.”
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- Premisecitation
There are data sharing initiatives in which neuroimaging data collected by many different studies is retrospectively made anonymous and pooled.
“There are also data sharing initiatives in which neuroimaging data collected by many different studies is retrospectively made anonymous and pooled. Examples include the Autism Brain Imaging Data Exchange (ABIDE‐I and II)(Di Martino et al., 2014, 2017), 1,000 Functional Connectomes (Biswal et al., 2010), Consortium on Reliability and Reproducibility (Zuo et al., 2014), the REST‐meta‐MDD consortium”
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- cites Biswal et al., 2010
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- cites Zuo et al., 2014
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- Premisecitation
Fields such as epidemiology lag behind in data sharing initiatives partly due to the complexities in harmonizing the different approaches to measure environmental variables.
“Fields such as epidemiology, which also benefit from larger sample sizes, lag behind in data sharing initiatives partly due to the complexities in harmonizing the different approaches to measure environmental variables (Ehrenstein, Nielsen, Pedersen, Johnsen, & Pedersen, 2017; Fairchild et al., 2018).”
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- cites Fairchild et al., 2018
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- Premisecitation
Sharing unthresholded or network maps allows voxelwise or connectivity analyses to be done even for regions that did not achieve significance in the original study.
“The next level is to share unthresholded (Gorgolewski, Varoquaux, et al., 2016) or network maps (Muetzel et al., 2016), which allows for voxelwise or connectivity analyses to be done even for regions that did not achieve significance in the original study.”
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- cites Muetzel et al., 2016
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- Premisecitation
The GDPR law entails the individuals to have the 'Right to be Forgotten'.
“This is best highlighted in the GDPR law that entails the individuals to have the “Right to be Forgotten.””
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- Premisecitation
Sharing peak coordinates enables meta-analytic approaches by combining experiments and studies.
“This enables meta‐analytic approaches to be performed by combining experiments and studies (Fox & Lancaster, 2002).”
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- Premisecitation
Programs that remove the possibility of re-identify individuals based on their surface anatomy may reduce the image quality for downstream pre-processing algorithms.
“While programs that remove the possibility of re‐identify individuals based on their surface anatomy, they may reduce the image quality for downstream pre‐processing algorithms (de Sitter et al., 2020).”
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- Premisecitation
In light of the possibility to re-identify individuals based on the facial reconstruction from high-resolution structural MRI data, there have been a number of software packages that are able to 'de-face' MR images.
“In light of the possibility to re‐identify individuals based on the facial reconstruction from high‐resolution structural MRI data, there have been a number of software packages that are able to “de‐face” MR images (Bischoff‐Grethe et al., 2007; Milchenko & Marcus, 2013).”
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- cites Milchenko & Marcus, 2013
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- Interpretationreasoning
Regions that did not reach statistical significance in the original analyses are not included in meta-analytic approaches based on peak coordinates.
“However, regions that did not reach statistical significance in the original analyses will not be included in this meta‐analytic approach.”
Quote in the paperSubstantial claim - Premisecitation
Sharing individual datasets increases sample size.
“However, sharing of the individual datasets can be extremely beneficial for numerous reasons, including increasing sample size (Button et al., 2013), better performance (Boedhoe et al., 2019), greater flexibility in controlling for confounders, and the ability to parse heterogeneous groups to better understand the underlying neurobiology.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Button et al., 2013
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- Premisecitation
Funding agencies have been instrumental in pushing for and funding a number of large studies of which data sharing is a key element.
“Funding agencies have also been instrumental in pushing for and funding a number of large studies of which data sharing is a key element.”
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For the subset of sites that are able to have their data centralized, data can be pooled in order to perform mega-analyses.
“To accomplish the latter, for the subset of sites that are able to have their data centralized, data can be pooled in order to perform mega‐analyses (Boedhoe et al., 2019).”
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- Premisecitation
Sharing individual datasets improves performance.
“However, sharing of the individual datasets can be extremely beneficial for numerous reasons, including increasing sample size (Button et al., 2013), better performance (Boedhoe et al., 2019), greater flexibility in controlling for confounders, and the ability to parse heterogeneous groups to better understand the underlying neurobiology.”
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- Interpretationreasoning
The same selection bias would be present when only data with consent to share data is shared.
“However, this same selection bias would be present when only data with consent to share data, is shared.”
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ENIGMA consortia have been highly successful in creating a culture of sharing built primarily around distributing a common set of scripts which are run locally.
“ENIGMA consortia (Thompson et al., 2014) have been highly successful in creating a culture of sharing built primarily around distributing a common set of scripts which are run locally.”
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- Premisecitation
Unthresholded or network map sharing provides relatively low information relative to raw data.
“However, both of these approaches, though more informative and useful than peak results, still provide relatively low information relative to the raw data (Calhoun, 2015).”
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- Premisecitation
In many cases of government sponsored projects, that is, the U.S. National Institutes of Health, are considered the owners of the data.
“In many cases of government sponsored projects, that is, the U.S. National Institutes of Health, are considered the owners of the data.”
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- Premisecitation
data SHIELD enables analysis of centralized pre-computed features.
“Approaches like data SHIELD (Wolfson et al., 2010) enable analysis of centralized pre‐computed features”
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- Premisecitation
Data sharing is cost effective for funding agencies, as they are not funding redundant studies and thus they see more value for their money.
“Data sharing is cost effective for funding agencies (Milham et al., 2018), as they are not funding redundant studies and thus they see “more bang for their buck.””
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- Interpretationnone given
Meta-analysis is limited in that it is inefficient to add additional features that were not originally included in the distributed scripts to the different sites.
“However meta‐analysis are limited in that it is inefficient to add additional features that were not originally included in the distributed scripts to the different sites.”
Quote in the paperNot a substantial claim - Interpretationreasoning
COINSTAC allows researchers to draw conclusions from large scale data without the need to have full control over the samples or aggregating them in a central place.
“This allows researchers to draw conclusions from large scale data without the need to have full control over the samples or aggregating them in a central place.”
Quote in the paperNot a substantial claim - Interpretationreasoning
Decentralized analysis such as COINSTAC provides a way to offer access to datasets that are not currently shareable due to regulatory or other concerns.
“Decentralized analysis such as COINSTAC provide a way to offer access to datasets that are not currently shareable due to regulatory or other concerns.”
Quote in the paperSubstantial claim - Interpretationreasoning
The combination of the complexity of neuroimaging data, coupled with data sharing, can result in groups spending a considerable amount of time becoming acquainted with how the data is structured.
“However, the combination of the complexity of neuroimaging data, coupled with data sharing can result in groups spending a considerable amount of time becoming acquainted with how the data is structured.”
Quote in the paperSubstantial claim - Interpretationnone given
There is currently very little credit or compensation for data sharing.
“One obstacle for researchers is that it requires considerable work to do it well, and there is currently very little credit or compensation for data sharing.”
Quote in the paperNot a substantial claim - Premisecitation
Shared data needs to be carefully curated and described in ways that other researchers can use the data properly, which is above and beyond the standard work load.
“Shared data needs to be carefully curated and described in ways that other researchers can use the data properly (Leonelli, 2014), which is above and beyond the standard work load.”
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- Premisecitation
New techniques provide algorithms that can be used to simulate data similar to the data used in specific studies.
“While not optimal, new techniques provide algorithms that can be used to simulate data similar to the data used in the specific studies (Shepherd, Peratikos, Rebeiro, Duda, & McGowan, 2017).”
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- Premisecitation
Similar to the GDPR, the Privacy Rule also allows for research use, disclosure, and data sharing when consent is obtained from the participant.
“In addition, similar to the GDPR, the Privacy Rule also allows for research use, disclosure, and data sharing when consent is obtained from the participant (45 C.F.R. § 164.508).”
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- Interpretationreasoning
The greatest obstacle for data sharing lies not with the participants, nor with the funding institutions, nor with legal aspects related to data sharing, but rather with the researchers.
“Thus, the greatest obstacle for data sharing lies not with the participants, nor with the funding institutions, nor with legal aspects related to data sharing, but rather with the researchers.”
Quote in the paperSubstantial claim- Rests on an assumption: Funding agencies are nearly unanimous in their support of data sharing.
- Rests on an assumption: With appropriate consent and, if necessary, assent, participants can determine whether they wish to have their data shared or not.
- Premisecitation
The current big data in neuroscience era has led to an analytic bottleneck, with some groups being unable to leverage necessary compute resources despite availability of cloud based analytic workbenches and repositories.
“The current “big data in neuroscience” era has led to, in some cases, an “analytic bottleneck,” with some groups being unable to leverage the necessary compute resources, despite the availability of cloud based analytic workbenches and repositories such as NDA, brainlife.io, Open NEURO, COINS, and many others (Eickhoff, Nichols, Van Horn, & Turner, 2016).”
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- Premisecitation
OpenfMRI Project provided an open dissemination of task-based functional neuroimaging data.
“An early example of an fully open approach is the OpenfMRI Project (Poldrack et al., 2013), which provided an open dissemination of task‐based functional neuroimaging data.”
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- Interpretationreasoning
Sharing data alone is often not sufficient.
“While there are many challenges of data sharing, sharing data alone is often not sufficient.”
Quote in the paperSubstantial claim - Interpretationnone given
Meta-analyses do not allow iterative approaches that require access to the first level data.
“Further, meta‐analyses do not allow iterative approaches that require access to the first level data.”
Quote in the paperSubstantial claim - Premisecitation
Mega-analyses have the advantage of an increased power to detect differences, especially important when there are non-significant associations at individual sites.
“Beyond this, mega‐analyses have the advantage of an increased power to detect differences, which is especially important when there are non‐significant associations at individual sites (Boedhoe et al., 2019).”
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- Interpretationreasoning
Data sharing requires considerable work to do it well.
“One obstacle for researchers is that it requires considerable work to do it well, and there is currently very little credit or compensation for data sharing.”
Quote in the paperSubstantial claim - Premisecitation
BIDS provides a mechanism to organize both NIfTI image and metadata in a uniform structure across datasets.
“BIDS provides a mechanism to organize both NIfTI image and metadata in a uniform structure (both a uniform tree structure, naming of the data elements, and the coding of metadata) across datasets.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Gorgolewski, Auer, et al., 2016
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- Interpretationreasoning
Laws such as the GDPR are not in place to limit data sharing initiatives.
“While it may appear that laws, such as the GDPR are in place to limit data sharing initiatives, this is far from the truth.”
Quote in the paperSubstantial claim- Rests on an assumption: The goal of the GDPR is to provide greater control and protection to the individual over whose data has been collected.
- Premisereasoning
The creation of standardized approaches for naming and storing data, such as BIDS, is becoming increasingly adopted in the neuroimaging community.
“Thus, the creation of standardized approaches for naming and storing data, such as the Brain Imaging Data Structure (BIDS) (Gorgolewski, Auer, et al., 2016), is becoming increasingly adopted in the neuroimaging community.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Gorgolewski, Auer, et al., 2016
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- Interpretationreasoning
The greatest obstacle to sharing medical research data is researchers and institutions, not laws.
“The greatest obstacle to sharing medical research data is not because of the laws, but rather the researchers and the institutions.”
Quote in the paperSubstantial claim- Rests on an assumption: Scientists are sometimes not overly keen about sharing their data with others.
- Rests on an assumption: There are very real issues related to data sharing that make researchers less willing to share.
- Rests on an assumption: The most common issue making researchers less willing to share is that collecting and collating data takes considerable effort and others could publish results sooner than those who collected the data.
- Rests on an assumption: Some studies are complex and those using the data may not fully understand the subtle complexities of the data.
- Rests on an assumption: Misuse or investigators serving as a help desk can result from data users not understanding complex data.
- Rests on an assumption: Some studies have a business plan in which data sharing is tied to monetary reimbursement to support further work or data collection.
- Interpretationcitation
Simulated data can be used for other researchers to run the scripts on the simulated data, without gaining access to the actual data.
“This simulated data can then be used for other researchers to run the scripts on the simulated data, without gaining access to the actual data.”
Quote in the paperSubstantial claim - Premisecitation
Initiatives like the neuroimage data model are working to try to incorporate standardized provenance tracking into the major analysis packages.
“Even just the analysis pipeline is incredibly complex, initiatives like the neuroimage data model are working to try to incorporate standardized provenance tracking into the major analysis packages (Dinov et al., 2010; Keator et al., 2013).”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Dinov et al., 2010
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- cites Keator et al., 2013
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- Interpretationreasoning
There is little motivation for many researchers to take the time and effort to engage in data sharing.
“Thus, there is little motivation for many researchers to take the time and effort to engage in data sharing.”
Quote in the paperSubstantial claim - Premisecitation
Data sharing initiatives offer greater transparency, with the opportunity for external research groups to reproduce and/or replicate findings.
“These initiatives offer greater transparency, with the opportunity for external research groups to reproduce and/or replicate findings (Nichols et al., 2017).”
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- Interpretationreasoning
These mechanisms can offer the opportunity for institutions with more restrictive policies to engage in data sharing initiatives.
“which can offer the opportunity for institutions with more restrictive policies to be able to engage in data sharing initiatives.”
Quote in the paperNot a substantial claim - Premisecitation
Within bioinformatics, mechanisms are emerging that allow data sharing without the data ever leaving the institution where the data were collected.
“Within the field of bioinformatics, mechanisms are emerging that allow for data sharing without the data ever leaving the institution where the data collected (Landis et al., 2016)”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Landis et al., 2016
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- Interpretationreasoning
With proper consent and, when necessary, completing data use or DTAs, sharing data in most countries, including the EU, is possible.
“However, with proper consent and, when necessary, completing data use or DTAs, sharing data in most countries, including the EU, is possible.”
Quote in the paperNot a substantial claim- Rests on an assumption: The goal of the GDPR is to provide greater control and protection to the individual over whose data has been collected.
- Rests on an assumption: Researchers who utilize shared de-identified human research data often need to sign DUAs that adhere to the laws specific to the country of the participants.
- May combine two claims. 33
- Classified as probably not a substantial claim. 57
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FindingcitationIn the authors' longitudinal study of child development, children were given several photos of their brains following their session, and some of the children placed these on social media.
“Finally, in our longitudinal study of child development (White et al., 2017), we give children several photos of their brains (i.e., sagittal midline slice from the structural MRI) following their session, of which we have learned that some of the children have placed on social media.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites White et al., 2017
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PremisecitationThe GDPR's 'Privacy by Design' requires that the safeguarding of data should be discussed and implemented during the design phase of the study.
“In addition, the GDPR's “Privacy by Design” requires that the safeguarding of data should be discussed and implemented during the design phase of the study.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites GDPR, 2016
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PremisecitationThe GDPR places greater responsibility on institutions to safeguard the privacy of personal data, such as assuring that there is a data controller to monitor data security.
“The GDPR places greater responsibility on institutions to safeguard the privacy of personal data, such as assuring that there is a data controller to monitor data security.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites GDPR, 2016
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PremisecitationLarger sample sizes offer the opportunity to apply more sophisticated statistical models to the data, since most biological processes have non-linear and stochastic mechanisms.
“Larger sample sizes will offer the opportunity to apply more sophisticated statistical models to the data (Bzdok & Yeo, 2017), since most biological processes have non‐linear and stochastic mechanisms (White, 2019).”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Bzdok & Yeo, 2017
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- cites White, 2019
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PremisecitationThe GDPR went into effect on May 25, 2018 and involves data privacy laws involving the storage, transfer, and sharing of data, both within and outside the EU and extending to the European Economic Area.
“The GDPR went into effect on May 25, 2018 and involves data privacy laws involving the storage, transfer, and sharing of data, both within and outside the EU and extending to the European Economic Area.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites GDPR, 2016
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PremisecitationWithin the GDPR a clear distinction is made between personal data, de-identified data, and fully anonymized data.
“Within the GDPR a clear distinction is made between personal data, de‐identified data, and fully anonymized data.”
Quote in the paperSubstantial claim0 of 1 sources checked- cites GDPR, 2016
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PremisecitationData sharing initiatives open the door for reproducibility, replication, and increased transparency.
“In addition, data sharing initiatives open the door for reproducibility, replication, and increased transparency (Milham et al., 2018).”
Quote in the paperSubstantial claim0 of 1 sources checked- cites Milham et al., 2018
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Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenMeta-analysis does not require advanced analysis methods to account for clustering-effects within cohorts.
“Moreover, it does not require advanced analysis methods to account for clustering‐effects within cohorts.”
Quote in the paperNot a substantial claimMay combine two claims.
InterpretationreasoningComparing demographic and clinical information of those willing and not willing to share provides an indication of representativeness between those groups, but it does not account for representativeness as a result of potential biases during the inclusion phase of the study.
“While this will provide an indication of representativeness between those willing and not willing to share their data, it does not account for representativeness as a result of potential biases during the inclusion phase of the study (i.e., selection bias).”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
PremisecitationThe combination of neuroimaging and genetics, coined 'imaging genetics' has also emerged, with the Enhancing Neuro Imaging Genetics through Meta Analyses (ENIGMA) consortium playing a leading role in this initiative.
“The combination of neuroimaging and genetics, coined “imaging genetics” has also emerged, with the Enhancing Neuro Imaging Genetics through Meta Analyses (ENIGMA) consortium playing a leading role in this initiative (Thompson et al., 2014).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Thompson et al., 2014
Not checked in the free run.
May combine two claims.
InterpretationreasoningA consent form written that precludes the option for data sharing dramatically limits the ability for sharing to occur, although if it is possible to fully anonymize the data, then sharing is possible in most situations.
“A consent form written that precludes the option for data sharing dramatically limits the ability for sharing to occur, although if it's possible to fully anonymize the data, then sharing is possible in most situations.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationUnder the recent Horizon 2020 call, as far as possible, research data should be made available to 'access, mine, exploit, reproduce, and disseminate (free of charge)' research data.
“Under the recent Horizon 2020 call, as far as possible, research data should be made available to “access, mine, exploit, reproduce, and disseminate (free of charge)” research data (European‐Commission, 2017).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites European‐Commission, 2017
Not checked in the free run.
May combine two claims.
InterpretationreasoningSharing unthresholded or network maps involves retrospective storage of completed studies and does not allow novel subject-level models to be run on time series data.
“In addition, these approaches involve retrospective storage of completed studies and do not allow for novel subject‐level models to be run on the time series data.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenPerforming analyses at a centralized site has the benefit of being able to work within local or regional restrictions, whether defined by law or by the facility.
“Moreover, performing analyses at a centralized site has the benefit of being able to work within local or regional restrictions, whether defined by law or by the facility.”
Quote in the paperNot a substantial claimMay combine two claims.
PremisecitationExamples of re-identification, such as highly accurate identification via facial reconstruction and machine learning identification from generative models, challenge the technical and legal adequacy of the de-identification release-and-forget model, spurring calls for additional privacy guidance.
“Examples of re‐identification, such as highly accurate identification via facial reconstruction (Schwarz et al., 2019) and machine learning identification from generative models (Rocher, Hendrickx, & de Montjoye, 2019) challenge the technical and legal adequacy of the de‐identification release‐and‐forget model, spurring calls for additional privacy guidance (Morris, 2019).”
Quote in the paperSubstantial claim0 of 3 sources checked- cites Schwarz et al., 2019
Not checked in the free run.
- cites Rocher, Hendrickx, & de Montjoye, 2019
Not checked in the free run.
- cites Morris, 2019
Not checked in the free run.
May combine two claims.
PremisecitationMultivariate and other advanced analytic approaches can extract a remarkable amount of information from highly distilled features; intrinsic networks can be captured from covariation among individual datasets.
“Multivariate and other advanced analytic approaches have the ability to extract a remarkable amount of information from these highly distilled features, for example, intrinsic networks can be captured from covariation among individual datasets (Calhoun & Allen, 2013; Smith et al., 2009).”
Quote in the paperNot a substantial claim0 of 2 sources checked- cites Calhoun & Allen, 2013
Not checked in the free run.
- cites Smith et al., 2009
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationThe UK Biobank has the goal to release neuroimaging data from 100,000 participants.
“from the United Kingdom the UK Biobank has the goal to release neuroimaging data from 100,000 participants (Miller et al., 2016)”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Miller et al., 2016
Not checked in the free run.
May combine two claims.
InterpretationreasoningPooling smaller datasets expands opportunities to address specific questions and to assess replicability of findings.
“While certain analyses cannot be applied to small datasets, pooling these smaller datasets expands the opportunities to address specific questions and to assess the replicability of the findings.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationThe perspective of the NIH for nearly two decades has been that 'all data should be considered for data sharing'.
“For example, the perspective of the NIH for nearly two decades has been that “all data should be considered for data sharing” (NIH, 2003).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites NIH, 2003
Not checked in the free run.
Probably not a substantial claim: may not pass S4 (based). May combine two claims.
Interpretationnone givenWhile it may be possible for researchers to design their study and inclusion criteria to include only those participants who are willing to share their data, for clinical studies, this may result in a selection bias.
“While it may be possible for researchers to design their study and inclusion criteria to include only those participants who are willing to share their data, for clinical studies, this may result in a selection bias.”
Quote in the paperNot a substantial claimMay combine two claims.
PremisecitationThe NIMH currently mandates data sharing (with an institutionally signed DUA) for almost all funded studies, with some notable exceptions for extremely sensitive data which might lead to the ability to re-identify an individual.
“The NIMH currently mandates data sharing (with an institutionally signed DUA (Miller et al., 2017)) for almost all funded studies (there are some notable exceptions to this in the case of extremely sensitive data which might lead to the ability to re‐identify an individual).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Miller et al., 2017
Not checked in the free run.
May combine two claims.
PremisecitationWhile there is support that individuals have characteristic patterns of functional brain connectivity, known as functional connectome fingerprinting, these have not been used to identify individuals.
“While there is support that individuals have characteristic patterns of functional brain connectivity, known as functional connectome fingerprinting, these have not been used to identify individuals (Finn et al., 2015).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Finn et al., 2015
Not checked in the free run.
May combine two claims.
PremisecitationIn spite of the obstacles, many forms of data sharing are taking place and the benefits of these efforts have been seen.
“Nevertheless, in spite of the obstacles, many forms of data sharing are taking place and the benefits of these efforts have been seen (Milham et al., 2018).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Milham et al., 2018
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenWith the proper safeguards and data agreements, cloud-based computing will be equally as safe as an encrypted hard drive with a strong password that is behind locked doors.
“With the proper safeguards and data agreements, cloud‐based computing will be equally as safe as an encrypted hard drive with a strong password that is behind locked doors.”
Quote in the paperNot a substantial claimMay combine two claims.
InterpretationreasoningThe reason why data sharing initiatives are gaining momentum is because they foster collaboration and can advance the pace of scientific discovery.
“The reason why these initiatives are gaining momentum is because they foster collaboration and can advance the pace of scientific discovery.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).
Interpretationnone givenIf participants provide consent for their data to be shared, then they can enjoy knowing that researchers across the globe are potentially working with their data to better understand the complexities of brain structure and function and to bring about novel discoveries.
“Finally, if participants provide consent for their data to be shared, which is the most important element, then they can enjoy knowing that researchers across the globe are potentially working with their data to better understand the complexities of brain structure and function and to bring about novel discoveries.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S4 (based).
Interpretationnone givenPreparing data for sharing is work above and beyond what is needed for a group to analyze data locally.
“Preparing data for sharing is work above and beyond what is needed for a group to analyze data locally.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S4 (based). May combine two claims.
InterpretationreasoningResearchers are evaluated not on data sharing, but rather based on publications and grants, thus there is less incentive to engage in the considerable effort necessary to make a dataset available for sharing.
“Researchers are evaluated not on data sharing, but rather based on publications and grants, thus there is less incentive to engage in the considerable effort necessary to make a dataset available for sharing.”
Quote in the paperNot a substantial claim- Rests on an assumption: Research careers are primarily evaluated on the number, quality, and impact of papers published and on the acquisition of grant funding, which depends on the number, quality and impact of publications.
- Rests on an assumption: Data collection takes considerable time and effort to assure that the quality of the data is high and the data is properly cleaned and used appropriately.
May combine two claims.
PremisecitationIncluding metrics that allow users to understand underlying quality of pre-processed images reduces noise-related variability and increases power.
“Assuring that the shared data has the optimum data quality, or including metrics that allow users to understand the underlying quality of pre‐processed images (Esteban et al., 2017; White et al., 2018) is important to reduce noise‐related variability and to increase power (Zuo, Xu, & Milham, 2019).”
Quote in the paperSubstantial claim0 of 3 sources checked- cites Esteban et al., 2017
Not checked in the free run.
- cites White et al., 2018
Not checked in the free run.
- cites Zuo, Xu, & Milham, 2019
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
PremisecitationFor those living in the United States, most human subjects research falls under the Common Rule, which is based on the 1975 revision of the Declaration of Helsinki.
“For those living in the United States, most human subjects research falls under the “Common Rule” (45 C.F.R. § 46 Subpart A), which is based on the 1975 revision of the Declaration of Helsinki.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites 45 C.F.R. § 46 Subpart A
Not checked in the free run.
Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).
Interpretationnone givenData sharing requires that those who use the data have a good understanding of the key variables, including the nuances of the data.
“Data sharing requires that those who use the data have a good understanding of the key variables, including the nuances of the data.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenData can be shared with investigators from low- and middle-income countries who may not have the resources to conduct expensive neuroimaging studies, but do have the ability to ask interesting and creative questions of the data.
“In addition, data can be shared with investigators from low‐ and middle‐income countries who may not have the resources to conduct expensive neuroimaging studies, but do have the ability to ask interesting and creative questions of the data.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenUnder some regulations and certain countries, data would need to be fully anonymized prior to being uploaded to OpenNEURO.
“Thus, under some regulations and certain countries, the data would need to be fully anonymized prior to being uploaded.”
Quote in the paperNot a substantial claim- Rests on an assumption: Sharing data within OpenNEURO has the requirement that, following a 36-month grace period following the first successful analysis of the data, the data will become publicly available under a Creative Commons (CCO) license.
Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
InterpretationreasoningIn light of recent legal changes, notably in the EU, ethical aspects related to data have actually become more straightforward.
“In light of recent legal changes, notably in the EU, ethical aspects related to data have actually become more straightforward.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Premisenone givenSpecific state regulations such as the Federal Policy for the Protection of Human Subjects or the Common Rule still apply.
“However, specific state regulations such as the “Federal Policy for the Protection of Human Subjects” or the Common Rule still apply.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenProviding some time for those who collected the data to write up results can typically circumvent the issue of others publishing sooner.
“Providing some time for those who collected the data to write up the results, however, can typically circumvent this issue.”
Quote in the paperNot a substantial claim- Rests on an assumption: The most common issue making researchers less willing to share is that collecting and collating data takes considerable effort and others could publish results sooner than those who collected the data.
Classified as probably not a substantial claim. May combine two claims.
PremisecitationHIPAA applies to covered entities only; covered entities are health plans, health care clearinghouses, and health care providers electronically transmitting health information in connection with transactions for which HHS has adopted standards.
“HIPAA applies to covered entities only, covered entities are health plans, health care clearinghouses, and health care providers electronically transmitting health information in connection with transactions for which Health and Human Services (HHS) has adopted standards (45 C.F.R. § 160.103).”
Quote in the paperSubstantial claim0 of 1 sources checked- cites 45 C.F.R. § 160.103
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
PremisereasoningThe most notable difference between the GDPR and HIPAA is to whom the regulations apply.
“The most notable difference between the GDPR and HIPAA is to whom the regulations apply.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).
Interpretationnone givenIn some cases, for example, rare disease, or an extremely high-profile scientific focus, the risk level may be too high for sharing.
“In some cases, for example, rare disease, or an extremely high‐profile scientific focus, the risk level may be too high for sharing.”
Quote in the paperNot a substantial claimMay combine two claims.
InterpretationreasoningIf certain associations reach sub-threshold significance at individual sites, they will not be taken into account in pooled meta-analysis, whereas in mega-analysis, those associations might be discovered because of increased power.
“If certain associations reach sub‐threshold significance at individual sites, they will not be taken into account in the pooled meta‐analysis, whereas in a mega‐analysis, those associations might be discovered, simply because of the increased power.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisereasoningResearch involving PHI from non-covered institutions does not fall under HIPAA, but rather under the Common Rule.
“Research involving PHI from non‐covered institutions does not fall under HIPAA, but rather under the Common Rule.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S4 (based).
InterpretationreasoningPure reproduction can only be established with detailed information on the coding of variables, the approach to missing data, and how the analyses were performed.
“Pure reproduction can only be established with detailed information on the coding of variables, the approach to missing data, and how the analyses were performed.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.
InterpretationreasoningWhile the large number of authors may dilute the impact of those authors contributing the most work, without rewarding via authorship would likely impair initiatives such as the ENIGMA consortium.
“While the large number of authors may dilute the impact of those authors contributing the most work, without rewarding via authorship would likely impair initiatives such as the ENIGMA consortium.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationResearch studies involving neuroimaging require approval from the local medical ethics committee or institutional review board in accordance with the Declaration of Helsinki.
“Research studies involving neuroimaging require approval from the local medical ethics committee or institutional review board in accordance with the Declaration of Helsinki (WMA, 2000).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites WMA, 2000
Not checked in the free run.
Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
PremisereasoningAs certain institutions have both covered and non-covered functions, there is a possibility to elect for being a hybrid entity, where only the covered functions must comply with the HIPAA requirements under the Privacy Rule.
“As certain institutions have both covered and non‐covered functions, there is a possibility to elect for being a hybrid entity, where only the covered functions must comply with the HIPAA requirements under the Privacy Rule.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based). May combine two claims.
InterpretationreasoningAttorneys whose job is to protect the university may side on being overly risk aversive, limiting the risk to a university, while at the same time potentially limiting the advancement of scientific discovery.
“Attorneys whose job is to protect the university may side on the being overly risk aversive, limiting the risk to a university, while at the same time potentially limiting the advancement of scientific discovery.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisereasoningPHI not held by a covered entity can be used and disclosed without regard to the Privacy Rule.
“PHI not held by a covered entity can be used and disclosed without regard to the Privacy Rule.”
Quote in the paperNot a substantial claimMay combine two claims.
InterpretationreasoningUtilization of standardized approaches can dramatically reduce the time necessary to understand the nature of the data and to reduce the number of errors due to misunderstandings surrounding the data.
“The utilization of standardized approaches can dramatically reduce the time necessary to understand the nature of the data and to reduce the number of errors due to misunderstandings surrounding the data.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Premisenone givenResearch taking place with personal health information from covered institutions falls under HIPAA.
“However, research taking place with personal health information from covered institutions (i.e., hospitals, clinics, etc.) falls under the HIPAA.”
Quote in the paperNot a substantial claimMay combine two claims.
PremisecitationData sharing allows for greater transparency in science with the ability to promote reproducibility and replication of study findings.
“Data sharing allows for greater transparency in science with the ability to promote reproducibility and replication of study findings (Button et al., 2013; Ioannidis, 2005; Open Science Collaboration, 2015).”
Quote in the paperSubstantial claim0 of 3 sources checked- cites Button et al., 2013
Not checked in the free run.
- cites Ioannidis, 2005
Not checked in the free run.
- cites Open Science Collaboration, 2015
Not checked in the free run.
May combine two claims.
PremisecitationCOINSTAC offers fully decentralized (and potentially privatized analysis), allowing the data to remain local at the site of collection, by leveraging local compute resources for each site's data.
“The collaborative informatics and neuroimaging suite toolkit for anonymous computation (COINSTAC [Plis et al., 2016]; https://github.com/trendscenter/coinstac) tool and approach goes a step further in offering fully decentralized (and potentially privatized analysis), allowing the data to remain local at the site of collection, by leveraging local compute resources for each site's data.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Plis et al., 2016
Not checked in the free run.
Probably not a substantial claim: may not pass S4 (based).
InterpretationreasoningIf the data is released relatively quickly after collection, other groups may access the data and publish prior to those who actually have collected the data.
“If the data is released relatively quickly after collection, other groups may access the data and publish prior to those who actually have collected the data.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.
Interpretationnone givenThere are a number of valid concerns raised by researchers related to data sharing, however, for every concern there is a feasible solution.
“There are a number of valid concerns raised by researchers related to data sharing, however, for every concern there is a feasible solution (Figure 1):”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenThese laws, in essence, give much of the control back to the participants.
“These laws, in essence, give much of the control back to the participants.”
Quote in the paperNot a substantial claimMay combine two claims.
PremisecitationSpecific rules apply for data sharing with countries with similar privacy protection under the GDPR adequacy decision, and thus to share data with other countries, additional safeguards are often necessary.
“Specific rules apply for data sharing with countries with similar privacy protection, (i.e., countries that fall under the GDPR adequacy decision [Council of the European Union and European Parliament, 2016]), and thus to share data with other countries, additional safeguards are often necessary.”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Council of the European Union and European Parliament, 2016
Not checked in the free run.
Probably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningWhile there are obstacles to data sharing, most of these can be overcome.
“While there are obstacles to data sharing, most of these can be overcome.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.
InterpretationreasoningJunior investigators are especially at risk, as they typically need more time to analyze and write the papers.
“Junior investigators are especially at risk, as they typically need more time to analyze and write the papers.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).
Interpretationnone givenChanging some of the obstacles would likely require changes in policies of funding agencies and journals to provide support and credit for those who make the time and effort to participate in data sharing.
“Changing some of the obstacles would likely require changes in policies of funding agencies and journals to provide support and credit for those who make the time and effort to participate in data sharing.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S4 (based). May combine two claims.
Premisenone givenClinical neuroimaging data is held by covered entities and HIPAA applies to this data.
“For example, clinical neuroimaging data is held by covered entities and HIPAA applies to this data.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.
InterpretationreasoningIf a different group publishes first, it may make it difficult for the PhD student to publish, and thus could hamper their career.
“If a different group publishes first, it may make it difficult for the PhD student to publish, and thus could hamper their career.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing).
PremisecitationViPAR leverages federated databases to provide temporal pooling of the actual data for analysis.
“another approach called ViPAR (virtual pooling and analysis of research data) leverages federated databases to provide temporal pooling of the actual data for analysis (Carter et al., 2016).”
Quote in the paperNot a substantial claim0 of 1 sources checked- cites Carter et al., 2016
Not checked in the free run.
Probably not a substantial claim: may not pass S2 (checkable), S4 (based).
InterpretationreasoningResearchers can provide the opportunity for participants to decide whether they are willing, or would like, that their data be shared.
“Researchers can provide the opportunity for the participants to decide whether they are willing, or would like that their data be shared.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).
Interpretationnone givenThere is a certain fear that has emerged regarding data sharing where it has become greater than life, monsters under the bed.
“While we do not intend to minimize the importance of data security, there is a certain fear that has emerged regarding data sharing where it has become greater than life, monsters under the bed.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S4 (based). May combine two claims.
Interpretationnone givenThere are both real and imagined obstacles for data sharing, which equate with not all researchers being supportive of data sharing initiatives.
“There are both real and imagined obstacles for data sharing which equate with not all researchers being supportive of data sharing initiatives.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).
InterpretationreasoningThe goal of university attorneys may result in a very restrictive bar for individual researchers within certain institutions.
“This may result in the setting of a very restrictive bar for individual researchers within certain institutions.”
Quote in the paperNot a substantial claim- Rests on an assumption: Attorneys who work for specific universities have the goal to assure that the university is protected from potential legal actions, such as the potential 20 million euro fine imposed by non-compliance with the GDPR.
Probably not a substantial claim: may not pass S2 (checkable), S4 (based).
Interpretationnone givenOne key element that is often not discussed in regards to data sharing is the wishes of the participant in allowing their data to be shared.
“However, one key element that is often not discussed in regards to data sharing is the wishes of the participant in allowing their data to be shared.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
InterpretationreasoningWithin the EU and likely other countries, the complexities of laws and fears of retribution may serve as a rationale for some researchers for not sharing.
“Within the EU and likely other countries, the complexities of these laws and the fears of retribution may serve as a rationale for some researchers for not sharing.”
Quote in the paperNot a substantial claim- Rests on an assumption: The goal of the GDPR is to provide greater control and protection to the individual over whose data has been collected.
Probably not a substantial claim: may not pass S2 (checkable).
InterpretationreasoningThere is a balance between protecting individual data and allowing some level of risk/benefit for data sharing.
“Thus, there is a balance.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.
InterpretationreasoningKeeping data under lock and key for use by only a handful of researchers may protect privacy but will limit scientific discovery.
“However, there should be a balance, as keeping data under lock and key for use by only a handful of researchers may protect privacy, but will limit scientific discovery.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S4 (based).
Interpretationnone givenCollaborative networks and data sharing initiatives are broadening the opportunities for the advancement of science and the ability to ask important research questions that could benefit others.
“Collaborative networks and data sharing initiatives are broadening the opportunities for the advancement of science and the ability to ask important research questions that could benefit others.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S4 (based).
InterpretationreasoningFor researchers who are not keen on data sharing, recent and emerging regulations regarding human subjects data can be used as a barrier, or excuse, for not taking part in data sharing initiatives.
“For researchers who are not keen on data sharing, recent and emerging regulations regarding human subjects data can be used as a barrier, or excuse, for not taking part in data sharing initiatives.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S4 (based).
Interpretationnone givenSharing everything with everyone does not safeguard individual privacy.
“Alternatively, sharing everything with everyone does not safeguard individual privacy.”
Quote in the paperNot a substantial claimClassified as probably not a substantial claim.
Interpretationnone givenData sharing will entail some level of risk.
“There is no question that data sharing will entail some level of risk.”
Quote in the paperSubstantial claimProbably not a substantial claim: may not pass S4 (based).
Interpretationnone givenA data leak of sensitive information could result in individuals' data being used for unintended and potentially harmful purposes.
“A data leak of sensitive information, for example, could result in individual's data being used for unintended and potentially harmful purposes.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S2 (checkable), S4 (based).
Interpretationnone givenIf all researchers kept their data under tight control with no data sharing outside their research group, this would hamper the progress of scientific discovery.
“However, if all researchers kept their data under tight control with no data sharing outside their research group, this will hamper the progress of scientific discovery.”
Quote in the paperNot a substantial claimProbably not a substantial claim: may not pass S3 (load-bearing), S4 (based).
Interpretationnone givenDifferences in national restrictions on data become equalized to some extent if participants are allowed to decide how their data are used.
“Different countries may differ slightly in the level of restrictions towards data, however, these differences become equalized to some extent if the participants are allowed to decide how they want their data to be used.”
Quote in the paperNot a substantial claim
The paper relies on this without support.
Depending on the type and amount of data, machine learning algorithms could, within a specific probability distribution, trace back to a specific individual.
“However, depending on the type and amount of data, machine learning algorithms could, within a specific probability distribution, trace back to a specific individual.”
The paper relies on this without support.
Within neuroimaging there are considerable missed opportunities for data sharing: thousands of studies with data collected from valuable populations did not include data sharing language within their consent forms and some IRB and medical ethics committees are refusing to allow these data to be shared.
“Within neuroimaging there are considerable missed opportunities for data sharing: thousands of studies with data collected from valuable populations did not include data sharing language within their consent forms and some IRB and medical ethics committees are refusing to allow these data to be shared.”
The paper relies on this without support.
In general, and across most countries, consent from the participants is necessary prior to the sharing of de-identified data.
“In general, and across most countries, consent from the participants is necessary prior to the sharing of de‐identified data.”
The paper relies on this without support.
The GDPR 'Right to be Forgotten' does not apply to any fully anonymized data that has been released.
“However, the GDPR “Right to be Forgotten” does not apply to any fully anonymized data that has been released.”
The paper relies on this without support.
In most cases, de-identified human subject's data, including neuroimaging and its associated meta-data, cannot be shared without adequate consent that specifically states that the data can be shared.
“In most cases, de‐identified human subject's data, including neuroimaging and its associated meta‐data, cannot be shared without adequate consent that specifically states that the data can be shared.”
The paper relies on this without support.
It is the researchers who write the consent forms and thus can ultimately control, to some extent, the opportunities for data sharing.
“However, it is the researchers who write the consent forms and thus can ultimately control, to some extent, the opportunities for data sharing.”
The paper relies on this without support.
The fields that have been at the forefront of data sharing or data pooling initiatives are those fields in which (a) data can be easily harmonized; and (b) large sample sizes are necessary and potentially available to address specific questions.
“The fields that have been at the forefront of data sharing or data pooling initiatives are those fields in which (a) data can be easily harmonized; and (b) large sample sizes are necessary and potentially available to address specific questions.”
The paper relies on this without support.
Within medicine, it is the field of human genetics that has been at the forefront of these initiatives, followed closely by the field of neuroimaging.
“Thus, it is not surprising that within medicine, it is the field of human genetics that has been at the forefront of these initiatives, followed closely by the field of neuroimaging.”
The paper relies on this without support.
Such meta-analytic approaches are limited to low dimensional analyses and do not yet enable the use of voxelwise, surface-based, or iterative machine learning analyses.
“However, such meta‐analytic approaches are limited to low dimensional analyses (such as volumetric analyses) and do not yet enable the use of voxelwise, surface‐based, or iterative machine learning analyses (i.e., those that perform iterative analyses using the entire dataset).”
The paper relies on this without support.
Entering a DUA can help mitigate these issues, but setting up a DUA is often a cumbersome process, requiring multiple agreements, discouraging potential users and still providing no more than a trust-based protection of the data.
“Entering a data use agreement (DUA) can help mitigate these issues, but setting up a DUA is often a cumbersome process, requiring multiple agreements (one per site and sometime even one per researcher, including institutional sign‐off), discouraging potential users and still providing no more than a trust‐based protection of the data.”
The paper relies on this without support.
Differences in data-acquisition protocols and MR platforms introduce noise in the data.
“Differences in data‐acquisition protocols and MR platforms introduce noise in the data.”
The paper relies on this without support.
Sharing data within OpenNEURO has the requirement that, following a 36-month grace period following the first successful analysis of the data, the data will become publicly available under a Creative Commons (CCO) license.
“However, sharing data within OpenNEURO has the requirement that, following a 36‐month grace period following the first successful analysis of the data, the data will be become publicly available under a Creative Commons (CCO) license.”
The paper relies on this without support.
Research careers are primarily evaluated on the number, quality, and impact of papers published and on the acquisition of grant funding, which depends on the number, quality and impact of publications.
“Research careers are primarily evaluated on the number, quality, and impact of papers published; and the acquisition of grant funding, where the acquisition of grant funding being dependent on the number, quality and impact of the publications.”
The paper relies on this without support.
Data collection takes considerable time and effort to assure that the quality of the data is high and the data is properly cleaned and used appropriately.
“Data collection takes considerable time and effort to assure that the quality of the data is high and the data is properly cleaned and used appropriately.”
The paper relies on this without support.
GDPR was implemented on the 25th of May 2018 to provide data protection regulations for the inhabitants living or traveling within the EU.
“The GDPR was implemented on the 25th of May 2018 to provide data protection regulations for the inhabitants living or traveling within the EU.”
The paper relies on this without support.
For data sharing of human subjects data both within and outside of the EU, the GDPR requires that specific information be provided on both participant information forms and consent forms.
“For data sharing of human subjects data both within and outside of the EU, the GDPR requires that specific information be provided on both participant information forms and consent forms.”
The paper relies on this without support.
Funding agencies are nearly unanimous in their support of data sharing.
“Funding agencies are nearly unanimous in their support of data sharing.”
The paper relies on this without support.
With appropriate consent and, if necessary, assent, participants can determine whether they wish to have their data shared or not.
“With appropriate consent and, if necessary, assent, participants can determine whether they wish to have their data shared or not.”
The paper relies on this without support.
Scientists are sometimes not overly keen about sharing their data with others.
“Scientists are sometimes not overly keen about sharing their data with others.”
The paper relies on this without support.
There are very real issues related to data sharing that make researchers less willing to share.
“There are very real issues related to data sharing that make researchers less willing to share.”
The paper relies on this without support.
The most common issue making researchers less willing to share is that collecting and collating data takes considerable effort and others could publish results sooner than those who collected the data.
“The most common is that it takes considerable effort to collect and collate the data and others could then publish results sooner than those who actually collected the data.”
The paper relies on this without support.
Some studies are complex and those using the data may not fully understand the subtle complexities of the data.
“Further, some studies may be quite complex and those using the data may not fully understand the sometimes‐subtle complexities of the data.”
The paper relies on this without support.
Misuse or investigators serving as a help desk can result from data users not understanding complex data.
“This can result in either misuse or the investigators who collected the data serving as a “help desk” for those using the data.”
The paper relies on this without support.
Some studies have a business plan in which data sharing is tied to monetary reimbursement to support further work or data collection.
“Further, some studies have a different business plan in which data sharing is tied to monetary reimbursement to help support further work or data collection by the researchers.”
The paper relies on this without support.
The goal of the GDPR is to provide greater control and protection to the individual over whose data has been collected.
“The goal of the GDPR is to provide greater control and protection to the individual over whose data has been collected.”
The paper relies on this without support.
Researchers who utilize shared de-identified human research data often need to sign DUAs that adhere to the laws specific to the country of the participants.
“Further, it is often the case that researchers who utilize shared de‐identified human research data will need to sign DUAs that adhere to the laws specific to the country of the participants (i.e., GDPR for data shared from the EU, or the DUA to use ABCD Study data from NIDA).”
The paper relies on this without support.
Attorneys who work for specific universities have the goal to assure that the university is protected from potential legal actions, such as the potential 20 million euro fine imposed by non-compliance with the GDPR.
“Attorneys who work for specific universities have the goal to assure that the university is protected from potential legal actions, such as the potential 20 million euro fine imposed by non‐compliance with the GDPR.”
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Converting DICOM to NIfTI files eliminates all patient-identifiable metadata from the header portion of the DICOM format.
“The conversion of DICOM to NIfTI files has the benefit of eliminating all patient-identifiable metadata from the header portion of the DICOM format80,81.”
From Federated learning enables big data for rare cancer boundary detection (2022) · cites this paper as [81]
Centralized data-sharing systems have limitations including data privacy and security concerns, interoperability issues, and single points of failure.
“However, centralized data-sharing systems have limitations, such as data privacy and security concerns [5]interoperability issues [6], and single points of failure [7].”
From Federated learning meets blockchain in decentralized data-sharing: Healthcare use case (2024) · cites this paper as [5]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
Each contradiction between two passages listed here was confirmed by an independent check.
Connectome fingerprinting identification claim conflicts with cited reference
MinorThe text says functional connectome fingerprinting has not been used to identify individuals, while the title of the cited study explicitly describes identifying individuals with it.
“While there is support that individuals have characteristic patterns of functional brain connectivity, known as functional connectome fingerprinting, these have not been used to identify individuals (Finn et al., 2015).”
“Functional connectome fingerprinting: Identifying individuals using patterns of brain connectivity.”
Conflicting claims about who owns U.S. government-funded data
MinorThe paper first says U.S. funding agencies consider institutions to own the data, but later describes government sponsors such as the NIH as the owners.
“Funding agencies in the United States consider institutions to be the owners of the data.”
“In many cases of government sponsored projects, that is, the U.S. National Institutes of Health, are considered the owners of the data.”
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“For additional references and resources related to data sharing, we point the reader to the following articles: Poline et al., 2012; Keator et al., 2013; Poldrack et al., 2014; Gibaud, 2011; Temal, Dojat, Kassel, and Gibaud, 2008; Jack et al., 2008; Zou et al., 2005; and Van Essen et al., 2012.”
BackgroundToward discovery science of human brain function
Biswal, B. B., Mennes, M., Zuo, X.-N., Gohel, S., Kelly, C., Smith, S. M., Beckmann, C. F., Adelstein, J. S., Buckner, R. L., Colcombe, S., et al. (2010) · Proceedings of the National Academy of Sciences · doi:10.1073/pnas.0911855107 · Cited by 2,970 · cited 2× · see citing works
“Examples include the Autism Brain Imaging Data Exchange (ABIDE-I and II)(Di Martino et al., 2014, 2017), 1,000 Functional Connectomes (Biswal et al., 2010), Consortium on Reliability and Reproducibility (Zuo et al., 2014), the REST-meta-MDD consortium (Yan et al., 2019) and the Healthy Brains Consortium (O'Connor et a…”
BackgroundDi Martino, A., Yan, C.-G., Li, Q., Denio, E., Castellanos, F. X., Alaerts, K., Anderson, J. S., Assaf, M., Bookheimer, S. Y., Dapretto, M., et al. (2014) · Molecular Psychiatry · doi:10.1038/mp.2013.78 · Cited by 2,780 · see citing works
Functional connectome fingerprinting: Identifying individuals using patterns of brain connectivity
Finn, E. S., Shen, X., Scheinost, D., Rosenberg, M. D., Huang, J., Chun, M. M., Papademetris, X., & Constable, R. T. (2015) · Nature Neuroscience · doi:10.1038/nn.4135 · Cited by 2,747 · cited 1× · see citing works
“While there is support that individuals have characteristic patterns of functional brain connectivity, known as functional connectome fingerprinting, these have not been used to identify individuals (Finn et al., 2015).”
BackgroundThe Human Connectome Project: A data acquisition perspective
Essen, D. C. V., Uǧurbil, K., Auerbach, E. J., Barch, D. M., Behrens, T. E. J., Bucholz, R. D., Chang, A., Chen, L., Corbetta, M., Curtiss, S. W., et al. (2012) · NeuroImage · doi:10.1016/j.neuroimage.2012.02.018 · Cited by 2,605 · cited 4× · see citing works
“It is possible for researchers to obtain some study data, that is, Human Connectome Project data, via an encrypted hard drive that is mailed.”
BackgroundInfluentialThe pathophysiology of cigarette smoking and cardiovascular disease
Ambrose, J. A., & Barua, R. S. (2004) · Journal of the American College of Cardiology · doi:10.1016/j.jacc.2003.12.047 · Cited by 2,394 · cited 1× · see citing works
“Just two widely known examples include the links between smoking and cardiovascular disease (Ambrose & Barua, 2004) and cancer (O'Keeffe et al., 2018); and the links between low folate during pregnancy and the increased risk of neural tube defects (Blom, Shaw, Den Heijer, & Finnell, 2006).”
BackgroundRobust De-anonymization of Large Sparse Datasets
Narayanan, A., & Shmatikov, V. (2008) · 2008 IEEE Symposium on Security and Privacy (sp 2008) · doi:10.1109/sp.2008.33 · Cited by 2,372 · see citing works
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The Adolescent Brain Cognitive Development (ABCD) study: Imaging acquisition across 21 sites
Casey, B. J., Cannonier, T., Conley, M. I., Cohen, A. O., Barch, D. M., Heitzeg, M. M., Soules, M. E., Teslovich, T., Dellarco, D. V., Garavan, H., et al. (2018) · Developmental Cognitive Neuroscience · doi:10.1016/j.dcn.2018.03.001 · Cited by 2,167 · cited 3× · see citing works
“…Alzheimer's Disease Neuroimaging Initiative (Mueller et al., 2005), Longitudinal Study of Adolescent Brain Cognitive Development or the ABCD Study (Casey et al., 2018), MIND Clinical Imaging Consortium (Gollub et al., 2013), COBRE (Aine et al., 2017), Pediatric Imaging, Neurocognition, and…”
BackgroundMultimodal population brain imaging in the UK Biobank prospective epidemiological study
Miller, K. L., Alfaro-Almagro, F., Bangerter, N. K., Thomas, D. L., Yacoub, E., Xu, J., Bartsch, A. J., Jbabdi, S., Sotiropoulos, S. N., Andersson, J. L. R., et al. (2016) · Nature Neuroscience · doi:10.1038/nn.4393 · Cited by 2,020 · see citing works
Gorgolewski, K. J., Auer, T., Calhoun, V. D., Craddock, R. C., Das, S., Duff, E. P., Flandin, G., Ghosh, S. S., Glatard, T., Halchenko, Y. O., et al. (2016) · Scientific Data · doi:10.1038/sdata.2016.44 · Cited by 1,775 · see citing works
Self-citationThe Alzheimer's Disease Neuroimaging Initiative
Mueller, S. G., Weiner, M. W., Thal, L. J., Petersen, R. C., Jack, C., Jagust, W., Trojanowski, J. Q., Toga, A. W., & Beckett, L. (2005) · Neuroimaging Clinics of North America · doi:10.1016/j.nic.2005.09.008 · Cited by 1,525 · see citing works
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Homer, N., Szelinger, S., Redman, M., Duggan, D., Tembe, W., Muehling, J., Pearson, J. V., Stephan, D. A., Nelson, S. F., & Craig, D. W. (2008) · PLoS Genetics · doi:10.1371/journal.pgen.1000167 · Cited by 1,221 · cited 1× · see citing works
“…individuals from anonymous datasets (Netflix Prize Privacy Concerns—https://en.wikipedia.org/wiki/Netflix_Prize#Privacy_ concerns) and the example of genetic reidentification from datasets anonymized per NIH guidelines (Cassa, Wieland, & Mandl, 2008; El Emam, 2011; Homer et al., 2008).”
MethodEarly brain development in infants at high risk for autism spectrum disorder
The IBIS Network, Hazlett, H. C., Gu, H., Munsell, B. C., Kim, S. H., Styner, M., Wolff, J. J., Elison, J. T., Swanson, M. R., Zhu, H., et al. (2017) · Nature · doi:10.1038/nature21369 · Cited by 1,128 · cited 2× · see citing works
“From the United States the most common include the Human Connectome Project (Van Essen et al., 2012; Van Essen et al., 2013), Baby Connectome Project (Howell et al., 2019), Alzheimer's Disease Neuroimaging Initiative (Mueller et al., 2005), Longitudinal Study of Adolescent Brain Cognitive Development or the ABCD Study…”
BackgroundMRIQC: Advancing the automatic prediction of image quality in MRI from unseen sites
Esteban, O., Birman, D., Schaer, M., Koyejo, O. O., Poldrack, R. A., & Gorgolewski, K. J. (2017) · PLOS ONE · doi:10.1371/journal.pone.0184661 · Cited by 920 · see citing works
Yan, C.-G., Chen, X., Li, L., Castellanos, F. X., Bai, T.-J., Bo, Q.-J., Cao, J., Chen, G.-M., Chen, N.-X., Chen, W., et al. (2019) · Proceedings of the National Academy of Sciences · doi:10.1073/pnas.1900390116 · Cited by 895 · cited 1× · see citing works
“…Imaging Data Exchange (ABIDE-I and II)(Di Martino et al., 2014, 2017), 1,000 Functional Connectomes (Biswal et al., 2010), Consortium on Reliability and Reproducibility (Zuo et al., 2014), the REST-meta-MDD consortium (Yan et al., 2019) and the Healthy Brains Consortium (O'Connor et al., 2017).”
The ENIGMA Consortium: large-scale collaborative analyses of neuroimaging and genetic data
the Alzheimer’s Disease Neuroimaging Initiative, E. C., Thompson, P. M., Stein, J. L., Medland, S. E., Hibar, D. P., Vasquez, A. A., Renteria, M. E., Toro, R., Jahanshad, N., Schumann, G., et al. (2014) · Brain Imaging and Behavior · doi:10.1007/s11682-013-9269-5 · Cited by 838 · cited 12× · see citing works
“One well known and successful approach for data sharing within a collaborative network involves the ENIGMA consortium (Thompson et al., 2014).”
BackgroundMethodInfluentialSelf-citationEstimating the success of re-identifications in incomplete datasets using generative models
Rocher, L., Hendrickx, J. M., & de Montjoye, Y.-A. (2019) · Nature Communications · doi:10.1038/s41467-019-10933-3 · Cited by 816 · see citing works
Best practices in data analysis and sharing in neuroimaging using MRI
Nichols, T. E., Das, S., Eickhoff, S. B., Evans, A. C., Glatard, T., Hanke, M., Kriegeskorte, N., Milham, M. P., Poldrack, R. A., Poline, J.-B., et al. (2017) · Nature Neuroscience · doi:10.1038/nn.4500 · Cited by 714 · cited 2× · see citing works
“These initiatives offer greater transparency, with the opportunity for external research groups to reproduce and/or replicate findings (Nichols et al., 2017).”
Self-citationKelly, S., Jahanshad, N., Zalesky, A., Kochunov, P., Agartz, I., Alloza, C., Andreassen, O. A., Arango, C., Banaj, N., Bouix, S., et al. (2018) · Molecular Psychiatry · doi:10.1038/mp.2017.170 · Cited by 701 · see citing works
Self-citationEnhancing studies of the connectome in autism using the autism brain imaging data exchange II
Martino, A. D., O’Connor, D. A., Chen, B., Alaerts, K., Anderson, J. S., Assaf, M., Balsters, J. H., Baxter, L. C., Beggiato, A., Bernaerts, S., et al. (2017) · Scientific Data · doi:10.1038/sdata.2017.10 · Cited by 696 · cited 1× · see citing works
“Examples include the Autism Brain Imaging Data Exchange (ABIDE-I and II)(Di Martino et al., 2014, 2017), 1,000 Functional Connectomes (Biswal et al., 2010), Consortium on Reliability and Reproducibility (Zuo et al., 2014), the REST-meta-MDD consortium (Yan et al., 2019) and the Healthy Brains…”
BackgroundSelf-citationNeural tube defects and folate: case far from closed
Blom, H. J., Shaw, G. M., den Heijer, M., & Finnell, R. H. (2006) · Nature Reviews Neuroscience · doi:10.1038/nrn1986 · Cited by 562 · see citing works
Mapping context and content: the BrainMap model
Fox, P., & Lancaster, J. (2002) · Nature Reviews Neuroscience · doi:10.1038/nrn789 · Cited by 518 · cited 1× · see citing works
“This enables meta-analytic approaches to be performed by combining experiments and studies (Fox & Lancaster, 2002).”
MethodNeuroimaging of the Philadelphia Neurodevelopmental Cohort
Satterthwaite, T. D., Elliott, M. A., Ruparel, K., Loughead, J., Prabhakaran, K., Calkins, M. E., Hopson, R., Jackson, C., Keefe, J., Riley, M., et al. (2014) · NeuroImage · doi:10.1016/j.neuroimage.2013.07.064 · Cited by 504 · cited 1× · see citing works
“Examples of re-identification, such as highly accurate identification via facial reconstruction (Schwarz et al., 2019) and machine learning identification from generative models (Rocher, Hendrickx, & de Montjoye, 2019) challenge the technical and legal adequacy of the de-identification…”
MethodAn open science resource for establishing reliability and reproducibility in functional connectomics
Zuo, X., Anderson, J. S., Bellec, P., Birn, R. M., Biswal, B. B., Blautzik, J., Breitner, J. C. S., Buckner, R. L., Calhoun, V. D., Castellanos, F. X., et al. (2014) · Scientific Data · doi:10.1038/sdata.2014.49 · Cited by 441 · cited 2× · see citing works
“Examples include the Autism Brain Imaging Data Exchange (ABIDE-I and II)(Di Martino et al., 2014, 2017), 1,000 Functional Connectomes (Biswal et al., 2010), Consortium on Reliability and Reproducibility (Zuo et al., 2014), the REST-meta-MDD consortium (Yan et al., 2019) and the Healthy Brains Consortium (O'Connor et a…”
Self-citationThe UNC/UMN Baby Connectome Project (BCP): An overview of the study design and protocol development
Howell, B., Styner, M. A., Gao, W., Yap, P., Wang, L., Baluyot, K., Yacoub, E. S., Chen, G., Potts, T., Salzwedel, A., et al. (2018) · NeuroImage · doi:10.1016/j.neuroimage.2018.03.049 · Cited by 431 · cited 2× · see citing works
“From the United States the most common include the Human Connectome Project (Van Essen et al., 2012; Van Essen et al., 2013), Baby Connectome Project (Howell et al., 2019), Alzheimer's Disease Neuroimaging Initiative (Mueller et al., 2005), Longitudinal Study of Adolescent Brain Cognitive Development or the ABCD Study…”
BackgroundMaking big data open: data sharing in neuroimaging
Poldrack, R. A., & Gorgolewski, K. J. (2014) · Nature Neuroscience · doi:10.1038/nn.3818 · Cited by 412 · cited 1× · see citing works
“Within human subjects research, large data sharing or data pooling initiatives have been especially prominent in the fields of genetics, neuroimaging, and the combination of the two (Poldrack & Gorgolewski, 2014; Poline et al., 2012; Thompson et al., 2014).”
BackgroundGet real in individual participant data (IPD) meta‐analysis: a review of the methodology
Debray, T. P. A., Moons, K. G. M., van Valkenhoef, G., Efthimiou, O., Hummel, N., Groenwold, R. H. H., Reitsma, J. B., & on behalf of the GetReal methods review group (2015) · Research Synthesis Methods · doi:10.1002/jrsm.1160 · Cited by 348 · see citing works
Toward open sharing of task-based fMRI data: the OpenfMRI project
Poldrack, R. A., Barch, D. M., Mitchell, J. P., Wager, T. D., Wagner, A. D., Devlin, J. T., Cumba, C., Koyejo, S., & Milham, M. P. (2013) · Frontiers in Neuroinformatics · doi:10.3389/fninf.2013.00012 · Cited by 341 · cited 1× · see citing works
“An early example of an fully open approach is the OpenfMRI Project (Poldrack et al., 2013), which provided an open dissemination of task-based functional neuroimaging data.”
BackgroundSmoking as a risk factor for lung cancer in women and men: a systematic review and meta-analysis
O’Keeffe, L. M., Taylor, G. M. J., Huxley, R., Mitchell, P., Woodward, M., & Peters, S. A. E. (2018) · BMJ Open · doi:10.1136/bmjopen-2018-021611 · Cited by 335 · see citing works
Statistical Challenges in “Big Data” Human Neuroimaging
Smith, S. M., & Nichols, T. E. (2018) · Neuron · doi:10.1016/j.neuron.2017.12.018 · Cited by 331 · cited 1× · see citing works
“…the process of scientific discovery through increasing sample sizes, which allows for greater precision and the ability to measure smaller effects, although smaller effects can also be associated with either smaller biological effects or potentially confounding factors (Smith & Nichols, 2018).”
BackgroundMarkram, H. (2012) · Scientific American · doi:10.1038/scientificamerican0612-50 · Cited by 325 · cited 3× · see citing works
“…et al., 2014), and Infant Brain Imaging Study (Hazlett et al., 2017); from the United Kingdom the UK Biobank has the goal to release neuroimaging data from 100,000 participants (Miller et al., 2016), and the EU Human Brain Project (Markram, 2012) has data sharing as a key element of the grant.”
BackgroundHarnessing reliability for neuroscience research
Zuo, X.-N., Xu, T., & Milham, M. P. (2019) · Nature Human Behaviour · doi:10.1038/s41562-019-0655-x · Cited by 310 · see citing works
What difference does quantity make? On the epistemology of Big Data in biology
Leonelli, S. (2014) · Big Data & Society · doi:10.1177/2053951714534395 · Cited by 293 · cited 1× · see citing works
“Shared data needs to be carefully curated and described in ways that other researchers can use the data properly (Leonelli, 2014), which is above and beyond the standard work load.”
BackgroundThe Pediatric Imaging, Neurocognition, and Genetics (PING) Data Repository
Jernigan, T. L., Brown, T. T., Hagler, D. J., Akshoomoff, N. A., Bartsch, H., Newman, E. R., Thompson, W. K., Bloss, C. S., Murray, S. S., Schork, N. J., et al. (2015) · NeuroImage · doi:10.1016/j.neuroimage.2015.04.057 · Cited by 281 · cited 2× · see citing works
“From the United States the most common include the Human Connectome Project (Van Essen et al., 2012; Van Essen et al., 2013), Baby Connectome Project (Howell et al., 2019), Alzheimer's Disease Neuroimaging Initiative (Mueller et al., 2005), Longitudinal Study of Adolescent Brain Cognitive Development or the ABCD Study…”
BackgroundDifferential Privacy for Statistics: What we Know and What we Want to Learn
Dwork, C., & Smith, A. (2010) · Journal of Privacy and Confidentiality · doi:10.29012/jpc.v1i2.570 · Cited by 269 · see citing works
Hadzhiev, Y., Qureshi, H. K., Wheatley, L., Cooper, L., Jasiulewicz, A., Nguyen, H. V., Wragg, J. W., Poovathumkadavil, D., Conic, S., Bajan, S., et al. (2019) · Nature Communications · doi:10.1038/s41467-019-08487-5 · Cited by 265 · see citing works
Data sharing in neuroimaging research
Poline, J., Breeze, J. L., Ghosh, S., Gorgolewski, K. J., Halchenko, Y. O., Hanke, M., Haselgrove, C., Helmer, K. G., Keator, D. B., Marcus, D. S., et al. (2012) · Frontiers in Neuroinformatics · doi:10.3389/fninf.2012.00009 · Cited by 262 · cited 2× · see citing works
“Within human subjects research, large data sharing or data pooling initiatives have been especially prominent in the fields of genetics, neuroimaging, and the combination of the two (Poldrack & Gorgolewski, 2014; Poline et al., 2012; Thompson et al., 2014).”
BackgroundProtection Against Reconstruction and Its Applications in Private Federated LearningPreprint
Bhowmick, A., Duchi, J. C., Freudiger, J., Kapoor, G., & Rogers, R. (2018) · arXiv (Cornell University) · doi:10.48550/arxiv.1812.00984 · Cited by 261 · see citing works
Local active information storage as a tool to understand distributed neural information processing
Wibral, M., Lizier, J. T., Vögler, S., Priesemann, V., & Galuske, R. A. W. (2014) · Frontiers in Neuroinformatics · doi:10.3389/fninf.2014.00001 · Cited by 239 · see citing works
Identification of Anonymous MRI Research Participants with Face-Recognition Software
Schwarz, C. G., Kremers, W. K., Therneau, T. M., Sharp, R. R., Gunter, J. L., Vemuri, P., Arani, A., Spychalla, A. J., Kantarci, K., Knopman, D. S., et al. (2019) · New England Journal of Medicine · doi:10.1056/nejmc1908881 · Cited by 215 · cited 1× · see citing works
“Examples of re-identification, such as highly accurate identification via facial reconstruction (Schwarz et al., 2019) and machine learning identification from generative models (Rocher, Hendrickx, & de Montjoye, 2019) challenge the technical and legal adequacy of the de-identification…”
MethodGollub, R. L., Shoemaker, J. M., King, M. D., White, T. J. H., Ehrlich, S., Sponheim, S. R., Clark, V. P., Turner, J. A., Mueller, B. A., Magnotta, V. A., et al. (2013) · Neuroinformatics · doi:10.1007/s12021-013-9184-3 · Cited by 212 · cited 2× · see citing works
“…al., 2005), Longitudinal Study of Adolescent Brain Cognitive Development or the ABCD Study (Casey et al., 2018), MIND Clinical Imaging Consortium (Gollub et al., 2013), COBRE (Aine et al., 2017), Pediatric Imaging, Neurocognition, and Genetics Study (Jernigan et al., 2016), Philadelphia…”
BackgroundSelf-citationMultimodal Neuroimaging in Schizophrenia: Description and Dissemination
Aine, C. J., Bockholt, H. J., Bustillo, J., Cañive, J. M., Caprihan, A., Gasparovic, C., Hanlon, F. M., Houck, J. M., Jung, R. E., Lauriello, J., et al. (2017) · Neuroinformatics · doi:10.1007/s12021-017-9338-9 · Cited by 196 · cited 2× · see citing works
“…of Adolescent Brain Cognitive Development or the ABCD Study (Casey et al., 2018), MIND Clinical Imaging Consortium (Gollub et al., 2013), COBRE (Aine et al., 2017), Pediatric Imaging, Neurocognition, and Genetics Study (Jernigan et al., 2016), Philadelphia Neurodevelopmental Cohort…”
BackgroundSelf-citationInference in the age of big data: Future perspectives on neuroscience
Bzdok, D., & Yeo, B. T. T. (2017) · NeuroImage · doi:10.1016/j.neuroimage.2017.04.061 · Cited by 186 · cited 1× · see citing works
“Larger sample sizes will offer the opportunity to apply more sophisticated statistical models to the data (Bzdok & Yeo, 2017), since most biological processes have non-linear and stochastic mechanisms (White, 2019).”
BackgroundWolfson, M. C., Wallace, S. E., Masca, N. G. D., Rowe, G., Sheehan, N. A., Ferretti, V., Laflamme, P., Tobin, M. D., Macleod, J., Little, J., et al. (2010) · International Journal of Epidemiology · doi:10.1093/ije/dyq111 · Cited by 177 · cited 2× · see citing works
“Approaches like data SHIELD (Wolfson et al., 2010) enable analysis of centralized pre-computed features and another approach called ViPAR (virtual pooling and analysis of research data) leverages federated databases to provide temporal pooling of the actual data for analysis (Carter et al., 2016).”
BackgroundMethodPaediatric population neuroimaging and the Generation R Study: the second wave
White, T. J. H., Muetzel, R. L., Marroun, H. E., Blanken, L. M. E., Jansen, P. R., Bolhuis, K., Kocevska, D., Mous, S. E., Mulder, R. H., Jaddoe, V. W. V., et al. (2017) · European Journal of Epidemiology · doi:10.1007/s10654-017-0319-y · Cited by 174 · see citing works
Self-citationA technique for the deidentification of structural brain MR images
Bischoff‐Grethe, A., Özyurt, İ. B., Busa, E., Quinn, B. T., Fennema‐Notestine, C., Clark, C. P., Morris, S., Bondi, M. W., Jernigan, T. L., Dale, A. M., et al. (2007) · Human Brain Mapping · doi:10.1002/hbm.20312 · Cited by 163 · cited 1× · see citing works
“In light of the possibility to re-identify individuals based on the facial reconstruction from high-resolution structural MRI data, there have been a number of software packages that are able to “de-face” MR images (Bischoff-Grethe et al., 2007; Milchenko & Marcus, 2013).”
BackgroundPhenoMeNal: processing and analysis of metabolomics data in the cloud
Peters, K., Bradbury, J., Bergmann, S., Capuccini, M., Cascante, M., de Atauri, P., Ebbels, T. M. D., Foguet, C., Glen, R. C., Gonzalez-Beltran, A. N., et al. (2018) · GigaScience · doi:10.1093/gigascience/giy149 · Cited by 151 · see citing works
Assessment of the impact of shared brain imaging data on the scientific literature
Milham, M. P., Craddock, R. C., Son, J. J., Fleischmann, M., Clucas, J. C., Xu, H., Koo, B., Krishnakumar, A., Biswal, B. B., Castellanos, F. X., et al. (2018) · Nature Communications · doi:10.1038/s41467-018-04976-1 · Cited by 147 · see citing works
Obscuring Surface Anatomy in Volumetric Imaging Data
Milchenko, M., & Marcus, D. (2013) · Neuroinformatics · doi:10.1007/s12021-012-9160-3 · Cited by 145 · cited 1× · see citing works
“In light of the possibility to re-identify individuals based on the facial reconstruction from high-resolution structural MRI data, there have been a number of software packages that are able to “de-face” MR images (Bischoff-Grethe et al., 2007; Milchenko & Marcus, 2013).”
BackgroundNeuroimaging Study Designs, Computational Analyses and Data Provenance Using the LONI Pipeline
Dinov, I. D., Lozev, K., Petrosyan, P., Liu, Z., Eggert, P., Pierce, J., Zamanyan, A., Chakrapani, S., Horn, J. D. V., Parker, D. S., et al. (2010) · PLoS ONE · doi:10.1371/journal.pone.0013070 · Cited by 136 · see citing works
Leonelli, S. (2016) · Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences · doi:10.1098/rsta.2016.0122 · Cited by 131 · cited 1× · see citing works
“…dramatic progress over past century in the manner in which data has been used, there have also been considerable advances in the methods of study design, data collection, and data analyses and importantly, dramatic changes in the ethics of human subject data (Leonelli, 2016; Nichols et al., 2017).”
MethodClinical epidemiology in the era of big data: new opportunities, familiar challenges
Ehrenstein, V., Nielsen, H., Pedersen, A. B., Johnsen, S. P., & Pedersen, L. H. (2017) · Clinical Epidemiology · doi:10.2147/clep.s129779 · Cited by 122 · see citing works
Boedhoe, P. S. W., Heymans, M. W., Schmaal, L., Abe, Y., Alonso, P., Ameis, S. H., Anticevic, A., Arnold, P. D., Batistuzzo, M. C., Benedetti, F., et al. (2019) · Frontiers in Neuroinformatics · doi:10.3389/fninf.2018.00102 · Cited by 109 · cited 3× · see citing works
“…individual datasets can be extremely beneficial for numerous reasons, including increasing sample size (Button et al., 2013), better performance (Boedhoe et al., 2019), greater flexibility in controlling for confounders, and the ability to parse heterogeneous groups to better understand the…”
BackgroundMethodInfluentialSharing the wealth: Neuroimaging data repositories
Eickhoff, S. B., Nichols, T. E., Horn, J. D. V., et al. (2015) · NeuroImage · doi:10.1016/j.neuroimage.2015.10.079 · Cited by 108 · see citing works
Plis, S., Sarwate, A. D., Wood, D., Dieringer, C., Landis, D., Reed, C., Panta, S. R., Turner, J. A., Shoemaker, J. M., Carter, K. W., et al. (2016) · Frontiers in Neuroscience · doi:10.3389/fnins.2016.00365 · Cited by 100 · cited 9× · see citing works
“, COINSTAC [Plis et al., 2016]) No No Yes High Med-low Yes Higher”
BackgroundMethodInfluentialSelf-citationO’Connor, D. A., Potler, N. V., Kovacs, M., Xu, T., Ai, L., Pellman, J., Vanderwal, T., Parra, L. C., Cohen, S. S., Ghosh, S., et al. (2017) · GigaScience · doi:10.1093/gigascience/giw011 · Cited by 100 · cited 2× · see citing works
“Examples include the Autism Brain Imaging Data Exchange (ABIDE-I and II)(Di Martino et al., 2014, 2017), 1,000 Functional Connectomes (Biswal et al., 2010), Consortium on Reliability and Reproducibility (Zuo et al., 2014), the REST-meta-MDD consortium (Yan et al., 2019) and the Healthy Brains Consortium (O'Connor et a…”
In the Era of Precision Medicine and Big Data, Who Is Normal?
Manrai, A. K., Patel, C. J., & Ioannidis, J. P. A. (2018) · JAMA · doi:10.1001/jama.2018.2009 · Cited by 98 · see citing works
Zou, K. H., Greve, D. N., Wang, M., et al. (2005) · Radiology · doi:10.1148/radiol.2373041630 · Cited by 94 · see citing works
Responsible practices for data sharing.
Alter, G. C., & Gonzalez, R. (2018) · American Psychologist · doi:10.1037/amp0000258 · Cited by 93 · cited 2× · see citing works
“In many cases, both in Europe and North America, it is the academic institutions that claim ownership of data from sponsored research projects (Alter & Gonzalez, 2018).”
BackgroundMethodGorgolewski, K. J., Varoquaux, G. P., Rivera, G., Schwartz, Y., Sochat, V., Ghosh, S., Maumet, C., Nichols, T. E., Poline, J., Yarkoni, T., et al. (2015) · NeuroImage · doi:10.1016/j.neuroimage.2015.04.016 · Cited by 85 · see citing works
Methods for the de-identification of electronic health records for genomic research
Emam, K. E. (2011) · Genome Medicine · doi:10.1186/gm239 · Cited by 78 · cited 1× · see citing works
“…individuals from anonymous datasets (Netflix Prize Privacy Concerns—https://en.wikipedia.org/wiki/Netflix_Prize#Privacy_ concerns) and the example of genetic reidentification from datasets anonymized per NIH guidelines (Cassa, Wieland, & Mandl, 2008; El Emam, 2011; Homer et al., 2008).”
MethodTowards structured sharing of raw and derived neuroimaging data across existing resources
Keator, D. B., Helmer, K. G., Steffener, J., Turner, J. A., van Erp, T. G. M., Gadde, S., Ashish, N., Burns, G., & Nichols, B. N. (2013) · NeuroImage · doi:10.1016/j.neuroimage.2013.05.094 · Cited by 76 · cited 2× · see citing works
“Even just the analysis pipeline is incredibly complex, initiatives like the neuroimage data model are working to try to incorporate standardized provenance tracking into the major analysis packages (Dinov et al., 2010; Keator et al., 2013).”
BackgroundMethodResting‐state networks in 6‐to‐10 year old children
Muetzel, R. L., Blanken, L. M. E., Thijssen, S., van der Lugt, A., Jaddoe, V. W. V., Verhulst, F. C., Tiemeier, H. W., & White, T. J. H. (2016) · Human Brain Mapping · doi:10.1002/hbm.23309 · Cited by 70 · cited 1× · see citing works
“The next level is to share unthresholded (Gorgolewski, Varoquaux, et al., 2016) or network maps (Muetzel et al., 2016), which allows for voxelwise or connectivity analyses to be done even for regions that did not achieve significance in the original study.”
BackgroundSelf-citationTowards an ontology for sharing medical images and regions of interest in neuroimaging
Temal, L., Dojat, M., Kassel, G., et al. (2008) · Journal of Biomedical Informatics · doi:10.1016/j.jbi.2008.03.002 · Cited by 69 · see citing works
Epidemiological Data Challenges: Planning for a More Robust Future Through Data Standards
Fairchild, G., Tasseff, B., Khalsa, H., et al. (2018) · Frontiers in Public Health · doi:10.3389/fpubh.2018.00336 · Cited by 66 · see citing works
Fastring, D., Mayfield-Johnson, S. L., Funchess, T. T., et al. (2018) · Aquila Digital Community (University of Southern Mississippi) · Cited by 63 · see citing works
White, T. J. H., Jansen, P. R., Muetzel, R. L., Sudre, G. P., Marroun, H. E., Tiemeier, H. W., Qiu, A., Shaw, P., Michael, A. M., & Verhulst, F. C. (2017) · Human Brain Mapping · doi:10.1002/hbm.23911 · Cited by 63 · cited 1× · see citing works
“Assuring that the shared data has the optimum data quality, or including metrics that allow users to understand the underlying quality of pre-processed images (Esteban et al., 2017; White et al., 2018) is important to reduce noise-related variability and to increase power (Zuo, Xu, & Milham, 2019).”
BackgroundSelf-citationSarwate, A. D., Plis, S., Turner, J. A., Arbabshirani, M. R., & Calhoun, V. D. (2014) · Frontiers in Neuroinformatics · doi:10.3389/fninf.2014.00035 · Cited by 61 · see citing works
Self-citationOpen Humans: a platform for participant-centered research and personal data exploration
Greshake Tzovaras, B., Angrist, M., Arvai, K., Dulaney, M., Estrada-Galiñanes, V., Gunderson, B., Head, T., Lewis, D., Nov, O., Shaer, O., et al. (2019) · GigaScience · doi:10.1093/gigascience/giz076 · Cited by 56 · cited 3× · see citing works
“Initiative such as “Open Humans” are highlighting the potential paradigm shift related to the ownership of personal data moving in the direction of the owners being those from whom the data were originally derived.”
BackgroundInfluentialCOINS Data Exchange: An open platform for compiling, curating, and disseminating neuroimaging data
Landis, D., Courtney, W., Dieringer, C., Kelly, R., King, M., Miller, B., Wang, R., Wood, D., Turner, J. A., & Calhoun, V. D. (2015) · NeuroImage · doi:10.1016/j.neuroimage.2015.05.049 · Cited by 55 · cited 1× · see citing works
“…field of bioinformatics, mechanisms are emerging that allow for data sharing without the data ever leaving the institution where the data collected (Landis et al., 2016), which can offer the opportunity for institutions with more restrictive policies to be able to engage in data sharing…”
BackgroundSelf-citationViPAR: a software platform for the Virtual Pooling and Analysis of Research Data.
Carter, K. W., Carter, K., Francis, R., Bresnahan, M., Gissler, M., Grønborg, T., Gross, R., Gunnes, N., Hammond, G., Hornig, M., et al. (2016) · International Journal of Epidemiology · doi:10.1093/ije/dyv193 · Cited by 51 · see citing works
Extracting Intrinsic Functional Networks with Feature-Based Group Independent Component Analysis
Calhoun, V. D., & Allen, E. A. (2012) · Psychometrika · doi:10.1007/s11336-012-9291-3 · Cited by 50 · see citing works
Self-citationRe-identification of home addresses from spatial locations anonymized by Gaussian skew
Cassa, C. A., Wieland, S. C., & Mandl, K. D. (2008) · International Journal of Health Geographics · doi:10.1186/1476-072x-7-45 · Cited by 45 · see citing works
on behalf of the MAGNIMS Study Group and Alzheimer’s Disease Neuroimaging Initiative, de Sitter, A., Visser, M., Brouwer, I., Cover, K. S., van Schijndel, R. A., Eijgelaar, R. S., Müller, D. M. J., Ropele, S., Kappos, L., et al. (2019) · European Radiology · doi:10.1007/s00330-019-06459-3 · Cited by 44 · see citing works
Fishbein, E. A. (1991) · Academic Medicine · doi:10.1097/00001888-199103000-00002 · Cited by 35 · cited 1× · see citing works
“Whoever owns the data has control over the data, its dissemination, and the timing of dissemination (Fishbein, 1991).”
BackgroundO’Connor, D. A., Potler, N. V., Kovacs, M., et al. (2016) · bioRxiv (Cold Spring Harbor Laboratory) · doi:10.1101/078881 · Cited by 34 · see citing works
White, T. J. H. (2019) · Journal of the American Academy of Child & Adolescent Psychiatry · doi:10.1016/j.jaac.2019.02.010 · Cited by 33 · cited 1× · see citing works
“Larger sample sizes will offer the opportunity to apply more sophisticated statistical models to the data (Bzdok & Yeo, 2017), since most biological processes have non-linear and stochastic mechanisms (White, 2019).”
BackgroundSelf-citationA Pragmatic Approach for Reproducible Research With Sensitive Data
Shepherd, B. E., Peratikos, M. B., Rebeiro, P. F., Duda, S. N., & McGowan, C. C. (2017) · American Journal of Epidemiology · doi:10.1093/aje/kwx066 · Cited by 26 · see citing works
The quest for standards in medical imaging
Bernard Gibaud, A. (2010) · European Journal of Radiology · doi:10.1016/j.ejrad.2010.05.003 · Cited by 24 · cited 1× · see citing works
“For additional references and resources related to data sharing, we point the reader to the following articles: Poline et al., 2012; Keator et al., 2013; Poldrack et al., 2014; Gibaud, 2011; Temal, Dojat, Kassel, and Gibaud, 2008; Jack et al., 2008; Zou et al., 2005; and Van Essen et al., 2012.”
BackgroundDe-anonymization Attacks on Neuroimaging Datasets
Ravindra, V., & Grama, A. Y. (2021) · ACM SIGMOD International Conference on Management of Data (SIGMOD) · doi:10.1145/3448016.3457234 · Cited by 22 · see citing works
A spectrum of sharing: maximization of information content for brain imaging data
Calhoun, V. D. (2015) · GigaScience · doi:10.1186/s13742-014-0042-5 · Cited by 11 · see citing works
Self-citationOpen Humans: A platform for participant-centered research and personal data explorationPreprint
Tzovaras, B. G., Angrist, M. H., Arvai, K. J., et al. (2018) · bioRxiv (Cold Spring Harbor Laboratory) · doi:10.1101/469189 · Cited by 10 · see citing works
Cleary, M. L., Jackson, D. W., & Walter, G. (2013) · Journal of Clinical Nursing · doi:10.1111/jocn.12140 · Cited by 4 · see citing works
COINS Tools for Automated NIMH Data Archive Submissions
Bn, M., Wang, R., Kelly, R., et al. (2017) · Cited by 1 · see citing works
Self-citationThe UNC/UMN Baby Connectome Project (BCP): An overview of the study design and protocol development
Salzwedel, A., Piven, J., Yap, P.-T., et al. (2021) · Carolina Digital Repository (University of North Carolina at Chapel Hill) · doi:10.17615/fppy-e402 · Cited by 1 · see citing works
Flagged first, then by citations
1 of the 95 references couldn’t be matched to a known paper.
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Cited by
Sorted by citations
Federated learning enables big data for rare cancer boundary detection
Pati, S., Baid, U., Edwards, B., Sheller, M., Wang, S.-H., Reina, G. A., Foley, P., Gruzdev, A., Karkada, D., Davatzikos, C., et al. (2022) · Nature Communications · doi:10.1038/s41467-022-33407-5 · Cited by 394 · see citing works
Federated learning meets blockchain in decentralized data-sharing: Healthcare use case
Alsamhi, S. H., Myrzashova, R., Hawbani, A., Kumar, S., Srivastava, S., Zhao, L., Wei, X., Guizan, M., & Curry, E. (2024) · IEEE Internet of Things Journal · doi:10.1109/jiot.2024.3367249 · Cited by 131 · see citing works
“However, centralized data-sharing systems have limitations, such as data privacy and security issues [5], interoperability issues [6], and single points of failure [7].”
BackgroundOnciul, R., Tataru, C.-I., Dumitru, A. V., Crivoi, C., Serban, M., Covache-Busuioc, R.-A., Radoi, M. P., & Toader, C. (2025) · Journal of Clinical Medicine · doi:10.3390/jcm14020550 · Cited by 113 · see citing works
“For example, models trained primarily on data from Western populations may struggle to generalize to patients from other regions or cultural backgrounds [263].”
Surianarayanan, C., Lawrence, J. J., Chelliah, P. R., Prakash, E., & Hewage, C. T. E. R. (2023) · Sensors · doi:10.3390/s23063062 · Cited by 121 · see citing works
The neuroplastic brain: current breakthroughs and emerging frontiers
Gazerani, P. (2025) · Brain Research · doi:10.1016/j.brainres.2025.149643 · Cited by 132 · see citing works
Mind the gap: State-of-the-art technologies and applications for EEG-based brain–computer interfaces
Lara, R. P., Tahirbegi, I. B., Chapman, C. A. R., Goding, J. A., & Green, R. A. (2021) · APL Bioengineering · doi:10.1063/5.0047237 · Cited by 83 · see citing works
International data governance for neuroscience
Eke, D., Bernard, A., Bjaalie, J. G., Chavarriaga, R., Hanakawa, T., Hannan, A. J., Hill, S., Martone, M. E., McMahon, M. A. B., Ruebel, O., et al. (2021) · Neuron · doi:10.1016/j.neuron.2021.11.017 · Cited by 82 · see citing works
Rahman, M. A., Victoros, E., Ernest, J., Davis, R., Shanjana, Y., & Islam, M. R. (2024) · Clinical Pathology · doi:10.1177/2632010x241226887 · Cited by 93 · see citing works
“35,36 It is imperative that patients are fully aware when AI is processing their information, and that they fully consent to the use of their information for ML. Slowly, as AI improves information processing in healthcare, there could potentially be fewer mistakes than with actual humans.”
BackgroundA hitchhiker’s guide to working with large, open-source neuroimaging datasets
Horien, C. L., Noble, S., Greene, A. S., Lee, K., Barron, D. S., Gao, S., O’Connor, D. A., Salehi, M., Dadashkarimi, J., Shen, X., et al. (2020) · Nature Human Behaviour · doi:10.1038/s41562-020-01005-4 · Cited by 67 · see citing works
Laird, A. R. (2021) · NeuroImage · doi:10.1016/j.neuroimage.2021.118579 · Cited by 58 · see citing works
Explainable Artificial Intelligence in Neuroimaging of Alzheimer’s Disease
Taiyeb Khosroshahi, M., Morsali, S., Gharakhanlou, S., Motamedi, A., Hassanbaghlou, S., Vahedi, H., Pedrammehr, S., Kabir, H. M. D., & Jafarizadeh, A. (2025) · Diagnostics · doi:10.3390/diagnostics15050612 · Cited by 68 · see citing works
“Privacy concerns, particularly in neuroimaging, demand adherence to HIPAA and GDPR regulations, with solutions like data de-identification and federated learning helping to protect sensitive patient data [146].”
The spectrum of data sharing policies in neuroimaging data repositories
Jwa, A. S., & Poldrack, R. A. (2022) · Human Brain Mapping · doi:10.1002/hbm.25803 · Cited by 62 · see citing works
“…of COINSTAC also provides heightened privacy protection using advanced statistical algorithms, such as differential privacy, and this model may open up a way to gain access to data that researchers are unable to share due to local regulatory restrictions (Ming et al., 2017; White et al., 2020).”
BackgroundBIDScoin: A User-Friendly Application to Convert Source Data to Brain Imaging Data Structure
Zwiers, M. P., Moia, S., & Oostenveld, R. (2022) · Frontiers in Neuroinformatics · doi:10.3389/fninf.2021.770608 · Cited by 56 · see citing works
“The initial lack of data-structure standardization, data-sharing tools, and data-sharing mindset (Poline et al., 2012; Nichols et al., 2017; White et al., 2020) have led to the use of a large variety of file formats and data management methods, and to the lack of metadata descriptions, leaving…”
BackgroundRogasch, N. C., Biabani, M., & Mutanen, T. P. (2022) · Journal of Neuroscience Methods · doi:10.1016/j.jneumeth.2022.109494 · Cited by 52 · see citing works
Survey on Open Science Practices in Functional Neuroimaging
Paret, C., Unverhau, N., Feingold, F. W., Poldrack, R. A., Stirner, M., Schmahl, C. G., & Sicorello, M. (2022) · NeuroImage · doi:10.1016/j.neuroimage.2022.119306 · Cited by 50 · see citing works
Pati, S., Baid, U., Edwards, B., Sheller, M. J., Foley, P., Anthony Reina, G., Thakur, S., Sako, C., Bilello, M., Davatzikos, C., et al. (2022) · Physics in Medicine & Biology · doi:10.1088/1361-6560/ac9449 · Cited by 51 · see citing works
Neuroimage analysis using artificial intelligence approaches: a systematic review
Bacon, E. J., He, D., Achi, N. A. D., Wang, L., Li, H., Yao-Digba, P. D. Z., Monkam, P., & Qi, S. (2024) · Medical & Biological Engineering & Computing · doi:10.1007/s11517-024-03097-w · Cited by 51 · see citing works
Scan Once, Analyse Many: Using Large Open-Access Neuroimaging Datasets to Understand the Brain
Madan, C. (2020) · Neuroinformatics · doi:10.1007/s12021-021-09519-6 · Cited by 38 · see citing works
“Initiatives such as Open Brain Consent (Bannier et al. 2020) are also critical in making neuroimaging data more readily shared (also see Brakewood and Poldrack 2013; Shenkin et al. 2017; White et al. 2020).”
BackgroundThompson, P. M., Jahanshad, N., Schmaal, L., Turner, J. A., Winkler, A. M., Thomopoulos, S. I., Egan, G. F., & Kochunov, P. V. (2021) · Human Brain Mapping · doi:10.1002/hbm.25672 · Cited by 45 · see citing works
Amunts, K., Axer, M., Banerjee, S., Bitsch, L., Bjaalie, J. G., Brauner, P., Brovelli, A., Calarco, N., Carrère, M., Caspers, S., et al. (2024) · Imaging Neuroscience · doi:10.1162/imag_a_00137 · Cited by 53 · see citing works
“…of EBRAINS • Implementing first behavioural, information and graph theory analyses, complemented by whole-brain computational approaches, based on a multiscale, causal (stimulation and recording) approach for the diagnosis and treatment of stroke, disorders of consciousness, neurodegenerative…”
MethodArtificial Intelligence-Based Software as a Medical Device (AI-SaMD): A Systematic Review
Ebad, S. A., Alhashmi, A. A., Amara, M., Miled, A. B., & Saqib, M. (2025) · Healthcare · doi:10.3390/healthcare13070817 · Cited by 54 · see citing works
Revolutionizing Neurology: The Role of Artificial Intelligence in Advancing Diagnosis and Treatment
Kalani, M., & Anjankar, A. (2024) · Cureus · doi:10.7759/cureus.61706 · Cited by 48 · see citing works
Eke, D., Aasebø, I. E. J., Akintoye, S., Knight, W., Karakasidis, A., Mikulan, E., Ochang, P. A., Ogoh, G., Oostenveld, R., Pigorini, A., et al. (2021) · Neuroimage Reports · doi:10.1016/j.ynirp.2021.100053 · Cited by 46 · see citing works
“These studies assert that the uniqueness of the brain anatomy is determined by the combination of genetic factors, individual life experiences, and stochastic processes (White et al., 2020).”
BackgroundInfluentialSelf-citationParsing variability in borderline personality disorder: a meta-analysis of neuroimaging studies
Degasperi, G., Cristea, I., Rosa, E. D., Costa, C., & Gentili, C. (2021) · Translational Psychiatry · doi:10.1038/s41398-021-01446-z · Cited by 40 · see citing works
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Looking Back at the Next 40 Years of ASD Neuroscience Research
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“Decentralized [72] or federated approaches [73] may provide a way forward here, combining intermittent neuroimaging with the regular capture of information from a mobile device in”
BackgroundSelf-citationA systematic comparison of VBM pipelines and their application to age prediction
Antonopoulos, G., More, S., Raimondo, F., Eickhoff, S. B., Hoffstaedter, F., & Patil, K. R. (2023) · NeuroImage · doi:10.1016/j.neuroimage.2023.120292 · Cited by 30 · see citing works
Open science: Considerations and issues for TESOL research
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Distributed Ledger Technology Based Integrated Healthcare Solution for Bangladesh
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“(GDPR) [19], and performance or scalability [20], [21].”
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“However, there are several drawbacks to traditional centralized data-sharing systems, such as their restricted accessibility, privacy and data security concerns, inter-operability problems, and reliance on single points of failure [12], [13], [14], [15], [16].”
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“In light of the increasing number of world-wide (public) neuroimaging collaborations (Poline et al., 2012) and technical improvements, the question is whether sharing raw anatomical MRI images is still in line with privacy regulations (White, Blok, & Calhoun, 2020).”
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“Researchers need to employ techniques like anonymization, removing personally identifiable information, and implementing strict access controls (see critical reviews, Poline et al., 2012, White et al., 2022).”
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“There has been a paradigm shift over the last decade with respect to the ethos of data ownership (18).”
BackgroundInfluentialBioChainReward: A Secure and Incentivised Blockchain Framework for Biomedical Data Sharing
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“Medical imaging data, being high-dimensional and uniquely identifying, can be exploited for malicious intent if not handled securely, leading to privacy infringements [1].”
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“For that reason, data from these devices are less likely to be re-identi fi able (Jwa and Poldrack, 2022; White et al., 2022).”
BackgroundFully synthetic neuroimaging data for replication and exploration
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“Sharing neuroimaging data is relatively easy when informed consent to share data is obtained ( White et al., 2020 ), and software can be used to reduce privacy risks by de-identifying image datasets ( Song et al., 2015 ).”
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“However, open data sharing can be limited by policy or proprietary restrictions or data re-identification concerns (Shringarpure & Bus-tamante, 2015; Sweeney, 2002; White et al., 2020).”
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“Finally, breaching the confidentiality of patients taking part in clinical trials threatens the confidence in medical research [18].”
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“Open access to data may also increase the speed of research and reduce the need to collect multiple redundant datasets, such as in computational neuroscience [1–4].”
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“However, it is possible to overcome this problem with some paths, such as using informed consent forms and providing fully anonymized or de-identified data (Shen et al., 2020) (White et al., 2020).”
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“However, an inherent challenge in FL is data heterogeneity [11], [12], [13], [14].”
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“More broadly in the field, data sharing and pooling of neuroimaging [56] and/ or geneticdata inBPD, likeother large-scale consortia have achieved via global working groups [57], will maximize resources and collaboration such as through mega-analytic studies [58], helping to overcome many methodological challenges to a…”
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Bridging the Brain and Data Sciences
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“113 Data management practices vary widely across laboratories— from ad hoc file structures to sophisticated databasing architectures—which has contributed to the challenges of data sharing accompanying journal publication.”
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“In addition, the violation of the confidentiality of patients participating in clinical trials represents a significant threat to the credibility and trustworthiness of medical research (White et al., 2022).”
FPGA-based Implementation of a Resource-Efficient UNET Model for Brain Tumour Segmentation
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“However with the rise in the use of technology in the medical field, there is a need for the data to be made public and anonymous of patient‟s identity [10].”
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“(94) As genetic and neuroimaging techniques develop and data become more widely available,(95) the accuracy of predicting AUD with increasingly innovative ML approaches will likely continue to improve over time.”
BackgroundData sharing in neuroimaging: experiences from the BIDS project
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Decentralized Brain Age Estimation Using MRI Data
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“COINSTAC (White et al., 2020; Plis et al., 2016; COIN-STAC, 2020) is a platform that enables decentralized analysis of (neuroimaging) data without the need to pool the data at one location.”
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“21 While ‘big brain data’ collected and sold by EEG device manufacturers is anonymized, the possibility of subject re-identification becomes more likely when the personalized features of brain data are cross-referenced with other types of data.”
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Federation of Brain Age Estimation in Structural Neuroimaging Data
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“perform multiple experiments with Freesurfer ROI features extracted from UPENN-PNC sMRI dataset with six sites (one as main and the remaining five as local sites) using COINSTAC[5], [6], [19], a platform that enables decentralized analysis of (neuroimaging) data without the need to pool”
MethodSelf-citationBCE-PPDS: Blockchain-based cloud–edge collaborative privacy-preserving data sharing scheme for IoT
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FedMedICL: Towards Holistic Evaluation of Distribution Shifts in Federated Medical Imaging
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“because of a lack of incentives, the fear of misuse, and legal issues such as data protection and privacy issues (Houtkoop et al., 2018; Sayogo and Pardo, 2013; Schmidt et al., 2016; Tenopir et al., 2011; White et al., 2020).”
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“…of the technical and logistical challenges often associated with central servers, such as storage limitations and coarseness in responding to data-specific upload, download, and analysis issues ( Rootes-Murdy et al., 2022 ; The Global Alliance for Genomics and Health, 2016 ; White et al., 2022 ).”
The Spectrum of Data sharing Policies in Neuroimaging Data RepositoriesPreprint
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International Data Governance for NeurosciencePreprint
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“However, brain scans require additional processing for anonymization/de-identification purposes, which represents a barrier to public data sharing [64].”
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“While Europe ’ s GDPR broadly regulates all personal information, protections in other regions vary; for example, United States regulations split between the Common Rule and the Health Insurance Portability and Accountability Act (White, Blok, & Calhoun, 2022).”
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“Additionally, clear and comprehensive informed consent processes are crucial to ensuring that participants are aware of and agree to the potential secondary uses of their data [81].”
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- Authors
- White, T., Blok, E., & Calhoun, V. D.
- Affiliations
- Erasmus MC (NL)
- Georgia Institute of Technology (US)
- Corresponding author
- White, Tonya
- Venue
- Human Brain Mapping
- Publisher
- Wiley
- Published
- 2020-07-04
- Volume
- 43
- Issue
- 1
- Pages
- 278-291
- ISSN
- 1065-9471 (ISSN-L)
- 1097-0193
- PMC
- PMC8675413
- OpenAlex
- W3040489328
- Semantic Scholar
- 03d93ddfd388eb371ee495eae6a403b4a431d225
- Cited by
- 176
- References
- 95
- Citations by year
- 2026: 25 · 2025: 38 · 2024: 44 · 2023: 24 · 2022: 22 · 2021: 19 · 2020: 4
- FWCI
- 2.53
- Type
- journal article
- Language
- en
- Update notices
- correction (2025-08-28)
- Open access
- gold
- doi.org
- Licence
- Locations
- Human Brain Mapping (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (publishedVersion, cc-by)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion, cc-by)
- RePub (Erasmus University Rotterdam) (submittedVersion, other-oa)
- Funders
- ZonMw (91211021)
- Topics
- Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Social Sciences › Sociology and Political Science › Data Analysis and Archiving
- Keywords
- neuroimaging data sharing, data privacy, data ownership, informed consent, General Data Protection Regulation, open science, federated learning, data pooling, research ethics
- MeSH terms
- Humans, Informed Consent, Privacy, Information Dissemination, Biomedical Research, Neuroimaging
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Claims read by deepseek-v4.1-flash under definition version 3 (extract-v3) on 2026-10-07.
Classified by jev-1.13-20260917 (gold-guideline-v0.2) on 2026-10-07.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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