An agenda-setting paper on data sharing platforms: euCanSHare workshop.
data infrastructure
data sharing
incentives
open science
science policy
Journal
Open research Europe
ISSN: 2732-5121
Titre abrégé: Open Res Eur
Pays: Belgium
ID NLM: 9918230081006676
Informations de publication
Date de publication:
2021
2021
Historique:
accepted:
22
11
2021
medline:
23
11
2021
pubmed:
23
11
2021
entrez:
30
8
2023
Statut:
epublish
Résumé
Various data sharing platforms are being developed to enhance the sharing of cohort data by addressing the fragmented state of data storage and access systems. However, policy challenges in several domains remain unresolved. The euCanSHare workshop was organized to identify and discuss these challenges and to set the future research agenda. Concerns over the multiplicity and long-term sustainability of platforms, lack of resources, access of commercial parties to medical data, credit and recognition mechanisms in academia and the organization of data access committees are outlined. Within these areas, solutions need to be devised to ensure an optimal functioning of platforms.
Identifiants
pubmed: 37645200
doi: 10.12688/openreseurope.13860.2
pmc: PMC10445835
doi:
Types de publication
Journal Article
Langues
eng
Pagination
80Informations de copyright
Copyright: © 2021 Devriendt T et al.
Déclaration de conflit d'intérêts
No competing interests were disclosed.
Références
Sci Adv. 2017 Nov 08;3(11):e1700404
pubmed: 29152564
Wellcome Open Res. 2018 Jan 16;3:6
pubmed: 30854470
Expert Rev Mol Diagn. 2014 Nov;14(8):1053-65
pubmed: 25260013
Sci Data. 2016 Mar 15;3:160018
pubmed: 26978244
BMC Med Res Methodol. 2013 Jun 04;13:72
pubmed: 23734773
Eur J Hum Genet. 2015 Jul;23(7):893-900
pubmed: 25407005
N Biotechnol. 2019 Mar 25;49:98-103
pubmed: 30342241
Eur J Hum Genet. 2012 Nov;20(11):1105-11
pubmed: 22713808
Life Sci Soc Policy. 2014 Dec;10:15
pubmed: 26085451
N Engl J Med. 2016 Jan 21;374(3):276-7
pubmed: 26789876
Nat Biotechnol. 2008 Jan;26(1):31-6
pubmed: 18183013
Sci Technol Human Values. 2010 May 1;35(3):330-355
pubmed: 20526462
PLoS One. 2017 Sep 14;12(9):e0184601
pubmed: 28910344
NPJ Genom Med. 2018 Jul 23;3:17
pubmed: 30062047
Public Underst Sci. 2012 Jul;21(5):534-55
pubmed: 23823164
Acad Med. 2015 Oct;90(10):1302-8
pubmed: 25993282
Nat Genet. 2014 Sep;46(9):934-8
pubmed: 25162809
PLoS Biol. 2015 Dec 31;13(12):e1002339
pubmed: 26720729
Eur J Hum Genet. 2016 Dec;24(12):1676-1680
pubmed: 27677416
EMBO Mol Med. 2015 Mar 09;7(5):507-9
pubmed: 25759363
Public Health Genomics. 2015;18(3):160-72
pubmed: 25790760
Proc Natl Acad Sci U S A. 2018 Mar 13;115(11):2557-2560
pubmed: 29487213
Nat Genet. 2016 Mar;48(3):224-5
pubmed: 26906679
BMC Biol. 2016 Jun 22;14:49
pubmed: 27334346
Genome Med. 2020 Feb 19;12(1):18
pubmed: 32075696
Nature. 2015 Apr 23;520(7548):429-31
pubmed: 25903611
BMC Health Serv Res. 2013 Oct 18;13:422
pubmed: 24139174
PLoS One. 2019 Feb 19;14(2):e0212463
pubmed: 30779778
Eur J Hum Genet. 2013 Jan;21(1):14-20
pubmed: 22669414
J Health Serv Res Policy. 2018 Apr;23(2):123-133
pubmed: 29653503
Soc Sci Med. 2016 Aug;162:79-87
pubmed: 27343817
JAMA. 2019 Jan 1;321(1):31-32
pubmed: 30535130
PLoS Comput Biol. 2012;8(7):e1002549
pubmed: 22807659
Hum Genomics. 2018 Apr 26;12(1):24
pubmed: 29695297
Glob Bioeth. 2018 Feb 26;29(1):39-54
pubmed: 29503603
Lancet. 2011 Feb 12;377(9765):537-9
pubmed: 21216456
Int J Epidemiol. 2014 Dec;43(6):1929-44
pubmed: 25261970
Biopreserv Biobank. 2018 Apr;16(2):97-105
pubmed: 29359962
EMBO Rep. 2020 Aug 5;21(8):e50690
pubmed: 32656889
J Comp Eff Res. 2017 Sep;6(6):537-547
pubmed: 28805448
JAMIA Open. 2021 Feb 04;4(3):ooab001
pubmed: 34514354
PLoS One. 2019 Sep 18;14(9):e0221496
pubmed: 31532777
Int J Epidemiol. 2010 Oct;39(5):1383-93
pubmed: 20813861
Eur J Hum Genet. 2021 Mar;29(3):503-511
pubmed: 33479473
Front Big Data. 2019 Dec 10;2:43
pubmed: 33693366
PLoS Genet. 2016 Jan 21;12(1):e1005772
pubmed: 26796797
BMJ Open. 2018 Jun 14;8(6):e021864
pubmed: 29903798
Nat Genet. 2007 Sep;39(9):1045-51
pubmed: 17728769
JAMA. 1997 Aug 20;278(7):579-85
pubmed: 9268280