Ownership of individual-level health data, data sharing, and data governance

2022
journal article
review article
51
cris.lastimport.wos2024-04-09T20:17:44Z
dc.abstract.enBackground: The ownership status of individual-level health data affects the manner in which it is used. In this paper we analyze two competing models of the ownership status of the data discussed in the literature recently: private ownership and public ownership. Main body: In this paper we describe the limitations of these two models of data ownership with respect to individual-level health data, in particular in terms of ethical principles of justice and autonomy, risk mitigation, as well as technological, economic, and conceptual issues. We argue that undifferentiated application of neither private ownership nor public ownership will allow us to resolve all the problems associated with effective, equitable, and ethical use of data. We suggest that, instead of focusing on data ownership, we should focus on the institutional and procedural aspects of data governance, such as using Data Access Committees (DACs) or equivalent managed access processes, which can balance the elements of these two ownership frameworks. Conclusion: Undifferentiated application of the ownership concept (private or public) is not helpful in resolving problems associated with sharing individual-level health data. DACs or equivalent managed access processes should be an integral part of data governance. They can approve or disapprove data access requests after considering the potential benefits and harms to data subjects, their communities, primary researchers, and the wider society.
dc.affiliationWydział Nauk o Zdrowiu : Instytut Pielęgniarstwa i Położnictwapl
dc.cm.date2022-11-17T23:32:12Z
dc.cm.id110319pl
dc.cm.idOmegaUJCM7dc262475c7348558071ae2e9756be8cpl
dc.contributor.authorPiasecki, Jan - 114409 pl
dc.contributor.authorCheah, Phaik Yeongpl
dc.date.accession2022-11-16pl
dc.date.accessioned2022-11-17T23:32:12Z
dc.date.available2022-11-17T23:32:12Z
dc.date.issued2022pl
dc.date.openaccess0
dc.description.accesstimew momencie opublikowania
dc.description.versionostateczna wersja wydawcy
dc.description.volume23pl
dc.identifier.articleid104pl
dc.identifier.doi10.1186/s12910-022-00848-ypl
dc.identifier.eissn1472-6939pl
dc.identifier.issn1472-6939pl
dc.identifier.urihttps://ruj.uj.edu.pl/xmlui/handle/item/303819
dc.identifier.weblinkhttps://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-022-00848-ypl
dc.languageengpl
dc.language.containerengpl
dc.pbn.affiliationDziedzina nauk medycznych i nauk o zdrowiu : nauki o zdrowiu
dc.rightsUdzielam licencji. Uznanie autorstwa 4.0 Międzynarodowa
dc.rights.licenceCC-BY
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/legalcode.pl
dc.share.typeOtwarte czasopismo
dc.source.integratorfalse
dc.subject.endata ownership
dc.subject.enindividual-level health data
dc.subject.endata access committees
dc.subject.ensharing data
dc.subject.enclinical trials
dc.subject.enresearch ethics
dc.subject.enlearning healthcare system
dc.subject.enembedded research
dc.subject.enethics
dc.subtypeReviewArticlepl
dc.titleOwnership of individual-level health data, data sharing, and data governancepl
dc.title.journalBMC Medical Ethicspl
dc.typeJournalArticlepl
dspace.entity.typePublication
cris.lastimport.wos
2024-04-09T20:17:44Z
dc.abstract.en
Background: The ownership status of individual-level health data affects the manner in which it is used. In this paper we analyze two competing models of the ownership status of the data discussed in the literature recently: private ownership and public ownership. Main body: In this paper we describe the limitations of these two models of data ownership with respect to individual-level health data, in particular in terms of ethical principles of justice and autonomy, risk mitigation, as well as technological, economic, and conceptual issues. We argue that undifferentiated application of neither private ownership nor public ownership will allow us to resolve all the problems associated with effective, equitable, and ethical use of data. We suggest that, instead of focusing on data ownership, we should focus on the institutional and procedural aspects of data governance, such as using Data Access Committees (DACs) or equivalent managed access processes, which can balance the elements of these two ownership frameworks. Conclusion: Undifferentiated application of the ownership concept (private or public) is not helpful in resolving problems associated with sharing individual-level health data. DACs or equivalent managed access processes should be an integral part of data governance. They can approve or disapprove data access requests after considering the potential benefits and harms to data subjects, their communities, primary researchers, and the wider society.
dc.affiliationpl
Wydział Nauk o Zdrowiu : Instytut Pielęgniarstwa i Położnictwa
dc.cm.date
2022-11-17T23:32:12Z
dc.cm.idpl
110319
dc.cm.idOmegapl
UJCM7dc262475c7348558071ae2e9756be8c
dc.contributor.authorpl
Piasecki, Jan - 114409
dc.contributor.authorpl
Cheah, Phaik Yeong
dc.date.accessionpl
2022-11-16
dc.date.accessioned
2022-11-17T23:32:12Z
dc.date.available
2022-11-17T23:32:12Z
dc.date.issuedpl
2022
dc.date.openaccess
0
dc.description.accesstime
w momencie opublikowania
dc.description.version
ostateczna wersja wydawcy
dc.description.volumepl
23
dc.identifier.articleidpl
104
dc.identifier.doipl
10.1186/s12910-022-00848-y
dc.identifier.eissnpl
1472-6939
dc.identifier.issnpl
1472-6939
dc.identifier.uri
https://ruj.uj.edu.pl/xmlui/handle/item/303819
dc.identifier.weblinkpl
https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-022-00848-y
dc.languagepl
eng
dc.language.containerpl
eng
dc.pbn.affiliation
Dziedzina nauk medycznych i nauk o zdrowiu : nauki o zdrowiu
dc.rights
Udzielam licencji. Uznanie autorstwa 4.0 Międzynarodowa
dc.rights.licence
CC-BY
dc.rights.uri
http://creativecommons.org/licenses/by/4.0/legalcode.pl
dc.share.type
Otwarte czasopismo
dc.source.integrator
false
dc.subject.en
data ownership
dc.subject.en
individual-level health data
dc.subject.en
data access committees
dc.subject.en
sharing data
dc.subject.en
clinical trials
dc.subject.en
research ethics
dc.subject.en
learning healthcare system
dc.subject.en
embedded research
dc.subject.en
ethics
dc.subtypepl
ReviewArticle
dc.titlepl
Ownership of individual-level health data, data sharing, and data governance
dc.title.journalpl
BMC Medical Ethics
dc.typepl
JournalArticle
dspace.entity.type
Publication
Affiliations

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