Cited by 187Research Data Management PracticesEthics in Clinical ResearchData Analysis and Archiving

Data sharing and privacy issues in neuroimaging research: Opportunities, obstacles, challenges, and monsters under the bed

Open access
White, Tonya, Blok, Elisabet, Calhoun, Vince D.·2022·Human Brain Mapping

Abstract

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

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

Crossref · 10.1002/hbm.25120

Cites

94 of 94 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

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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    • cites 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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    Findingcitation

    In 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.”
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    Premisecitation

    The 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.”
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    • cites GDPR, 2016

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    Premisecitation

    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.

    “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.”
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    Premisecitation

    Larger 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).”
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    • cites White, 2019

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  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    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.

    “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.”
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    • cites GDPR, 2016

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    Premisecitation

    Within 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.”
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    • cites GDPR, 2016

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    Premisecitation

    Data 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).”
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    • cites Milham et al., 2018

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    Interpretationnone given

    Meta-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 claim
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    Interpretationreasoning

    Comparing 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    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.

    “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).”
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    Interpretationreasoning

    A 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.”
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    Premisecitation

    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.

    “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).”
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    • cites European‐Commission, 2017

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    Interpretationreasoning

    Sharing 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.”
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    Interpretationnone given

    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.

    “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.”
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    Premisecitation

    Examples 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).”
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    • cites Rocher, Hendrickx, & de Montjoye, 2019

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    Premisecitation

    Multivariate 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).”
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    • cites Smith et al., 2009

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    Premisecitation

    The 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)”
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    Interpretationreasoning

    Pooling 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    The 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).”
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    Interpretationnone given

    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.

    “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.”
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    Premisecitation

    The 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).”
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    Premisecitation

    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.

    “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).”
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    Premisecitation

    In 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).”
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    • cites Milham et al., 2018

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    Interpretationnone given

    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.

    “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.”
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    Interpretationreasoning

    The 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

    Interpretationnone given

    If 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 claim
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    Interpretationnone given

    Preparing 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.”
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    Interpretationreasoning

    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.

    “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.
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    Premisecitation

    Including 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).”
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    • cites White et al., 2018

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    • cites Zuo, Xu, & Milham, 2019

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    Premisecitation

    For 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.”
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  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

    Interpretationnone given

    Data 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.”
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    Interpretationnone given

    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.

    “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.”
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  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    Under 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).

    Interpretationreasoning

    In 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Premisenone given

    Specific 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.”
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    Interpretationnone given

    Providing 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.

    Premisecitation

    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 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).”
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    • cites 45 C.F.R. § 160.103

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  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Premisereasoning

    The 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

    Interpretationnone given

    In 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 claim
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    Interpretationreasoning

    If 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisereasoning

    Research 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

    Interpretationreasoning

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.

    Interpretationreasoning

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Research 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).”
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    • cites WMA, 2000

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  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Premisereasoning

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based). May combine two claims.

    Interpretationreasoning

    Attorneys 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisereasoning

    PHI 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 claim
  • May combine two claims.

    Interpretationreasoning

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Premisenone given

    Research 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 claim
  • May combine two claims.

    Premisecitation

    Data 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).”
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    • 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.

    Premisecitation

    COINSTAC 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).

    Interpretationreasoning

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.

    Interpretationnone given

    There 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    These 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 claim
  • May combine two claims.

    Premisecitation

    Specific 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).

    Interpretationreasoning

    While 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Interpretationreasoning

    Junior 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

    Interpretationnone given

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S4 (based). May combine two claims.

    Premisenone given

    Clinical 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.

    Interpretationreasoning

    If 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    ViPAR 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).

    Interpretationreasoning

    Researchers 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

    Interpretationnone given

    There 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 claim
  • Probably not a substantial claim: may not pass S4 (based). May combine two claims.

    Interpretationnone given

    There 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing).

    Interpretationreasoning

    The 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 given

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationreasoning

    Within 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).

    Interpretationreasoning

    There 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based). May combine two claims.

    Interpretationreasoning

    Keeping 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

    Interpretationnone given

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationreasoning

    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.

    “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 claim
  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationnone given

    Sharing everything with everyone does not safeguard individual privacy.

    “Alternatively, sharing everything with everyone does not safeguard individual privacy.”
    Quote in the paperNot a substantial claim
  • Classified as probably not a substantial claim.

    Interpretationnone given

    Data sharing will entail some level of risk.

    “There is no question that data sharing will entail some level of risk.”
    Quote in the paperSubstantial claim
  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationnone given

    A 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 claim
  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

    Interpretationnone given

    If 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 claim
  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    Differences 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
76 of 76
  • 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.”
27 of 27

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.”
  • 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].”

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

    Minor

    The 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.

  • Conflicting claims about who owns U.S. government-funded data

    Minor

    The 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.

2 of 2

Cites

Flagged first, then by citations

1 of the 95 references couldn’t be matched to a known paper.

Research works printed but not linked: 4

  1. GDPR, 2016, Reform of EU data protection rules—European Commission
  2. Morris E. D., 2019, Why we need guidelines for brain scan data, WIRED
  3. Rosenberg M., 2018, How trump consultants explotied the Facebook data of millions, The New York Times, 8, 35
  4. Simonite T., 2018, The decentralized internet is here, with some glitches, WIRED

Cited by

Sorted by citations

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
OpenAlex
W3040489328
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
Open access
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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