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

The DOI matches its Crossref record; 95 of the 95 references it cites were found in a registry or an index; none of the 76 sources its claims cite is checked for support yet.

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.

Overview

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

95 of 95 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Verification

Claims the paper makes

0 of 76 cited sources checked · 0 supported · 0 flagged

Show all 59 claims

  • It may state two separate claims as one. 33
  • Probably not a substantial claim. 57
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.”
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  • Connectome fingerprinting identification claim conflicts with cited reference

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

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    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.

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Citations

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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

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Metadata

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

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