Data management and protection in occupational and environmental exposome research - A case study from the EU-funded EXIMIOUS project

被引:0
作者
Ghosh, Manosij [1 ]
Broothaerts, Katrijn [1 ]
Ronsmans, Steven [1 ]
Roig, Ingrid Barcena [2 ]
Scheepers, Jef [2 ]
Dikmen, Mustafa [2 ]
Ciscato, Emily Rose [3 ]
Blanch, Carolina [4 ]
Plusquin, Michelle [5 ]
Nygaard, Unni C. [6 ]
Sejbaek, Camilla Sandal [7 ]
Hougaard, Karin S. [8 ,9 ]
Hoet, Peter HM. [1 ]
机构
[1] Katholieke Univ Leuven, Ctr Environm & Hlth, Dept Publ Hlth & Primary Care, Leuven, Belgium
[2] Katholieke Univ Leuven, Ctr Translat Studies CETRA, Leuven, Belgium
[3] Accelopment Schweiz AG, Zurich, Switzerland
[4] Imec Interuniversitair Microelect Ctr, Interuniv Microelect Ctr, Leuven, Belgium
[5] Univ Hasselt, Ctr Environm Sci, Hasselt, Belgium
[6] Norwegian Inst Publ Hlth, Div Infect Control, Sect Immunol, Oslo, Norway
[7] Copenhagen Univ Hosp, Bispebjerg & Frederiksberg Hosp, Dept Occupat & Environm Med, Copenhagen, Denmark
[8] Natl Res Ctr Working Environm, Copenhagen, Denmark
[9] Univ Copenhagen, Dept Publ Hlth, Copenhagen, Denmark
关键词
Data management; Data protection; Ethics; GDPR; Exposome; Sensitive information; MINIMUM INFORMATION;
D O I
10.1016/j.envres.2023.116886
中图分类号
X [环境科学、安全科学];
学科分类号
08 ; 0830 ;
摘要
Within collaborative projects, such as the EU-funded Horizon 2020 EXIMIOUS project (Mapping Exposure-Induced Immune Effects: Connecting the Exposome and the Immunome), collection and analysis of large volumes of data pose challenges in the domain of data management, with regards to both ethical and legal aspects. However, researchers often lack the right tools and/or accurate understanding of the ethical/legal framework to independently address such challenges. With the guidance and support within and between the partner institutes (the researchers and the ethical and legal teams) in the EXIMIOUS project, we have been able to understand and solve most challenges during the first two project years. This has fed into the development of a Data Management Plan and the establishment of data management platforms in accordance with the ethical and legal framework laid down by the EU and the different national regulations of the partners involved. Through this elaborate exercise, we have acquired tools which allow us to make our research data FAIR (Findable, Accessible, Inter-operable, and Reusable), while at the same time ensuring data privacy and security (GDPR compliant). Herein we share our experience of creating and managing the data workflow through an open research communication, with the aim of helping other researchers build their data management framework in their own projects. Based on the measures adopted in EXIMIOUS to ensure FAIR data management, we also put together a checklist "DMP CHECK" containing a series of recommendations based on our experience.
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页数:18
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共 38 条
  • [1] [Anonymous], 2023, ISRCTN-ISRCTN24225493
  • [2] [Anonymous], EXIMIOUS SOP for collection, storage and shipment of biological samples., DOI [10.48804/AMZHSD, DOI 10.48804/AMZHSD]
  • [3] [Anonymous], Belgian Advisory Committee on Bioethics from a Human Genetics Centre on the Use of DNA Banks
  • [4] The FAIR guiding principles for data stewardship: fair enough?
    Boeckhout, Martin
    Zielhuis, Gerhard A.
    Bredenoord, Annelien L.
    [J]. EUROPEAN JOURNAL OF HUMAN GENETICS, 2018, 26 (07) : 931 - 936
  • [5] Minimum information about a microarray experiment (MIAME) - toward standards for microarray data
    Brazma, A
    Hingamp, P
    Quackenbush, J
    Sherlock, G
    Spellman, P
    Stoeckert, C
    Aach, J
    Ansorge, W
    Ball, CA
    Causton, HC
    Gaasterland, T
    Glenisson, P
    Holstege, FCP
    Kim, IF
    Markowitz, V
    Matese, JC
    Parkinson, H
    Robinson, A
    Sarkans, U
    Schulze-Kremer, S
    Stewart, J
    Taylor, R
    Vilo, J
    Vingron, M
    [J]. NATURE GENETICS, 2001, 29 (04) : 365 - 371
  • [6] Data Management Plans: the Importance of Data Management in the BIG-MAP Project[**]
    Castelli, Ivano E.
    Arismendi-Arrieta, Daniel J.
    Bhowmik, Arghya
    Cekic-Laskovic, Isidora
    Clark, Simon
    Dominko, Robert
    Flores, Eibar
    Flowers, Jackson
    Frederiksen, Karina Ulvskov
    Friis, Jesper
    Grimaud, Alexis
    Hansen, Karin Vels
    Hardwick, Laurence J.
    Hermansson, Kersti
    Koeniger, Lukas
    Lauritzen, Hanne
    Le Cras, Frederic
    Li, Hongjiao
    Lyonnard, Sandrine
    Lorrmann, Henning
    Marzari, Nicola
    Niedzicki, Leszek
    Pizzi, Giovanni
    Rahmanian, Fuzhan
    Stein, Helge
    Uhrin, Martin
    Wenzel, Wolfgang
    Winter, Martin
    Woelke, Christian
    Vegge, Tejs
    [J]. BATTERIES & SUPERCAPS, 2021, 4 (12) : 1803 - 1812
  • [7] The role of genetic factors in autoimmune disease: Implications for environmental research
    Cooper, GS
    Miller, FW
    Pandey, JP
    [J]. ENVIRONMENTAL HEALTH PERSPECTIVES, 1999, 107 : 693 - 700
  • [8] cordis europa, Mapping Exposure-Induced Immune Effects. Connecting the exposome and the immunome | EXIMIOUS project | fact sheet | H2020 | CORDIS | European commission [WWW document]
  • [9] Genes, epigenetic regulation and environmental factors: Which is the most relevant in developing autoimmune diseases?
    Costenbader, Karen H.
    Gay, Steffen
    Alarcon-Riquelme, Marta E.
    Iaccarino, Luca
    Doria, Andrea
    [J]. AUTOIMMUNITY REVIEWS, 2012, 11 (08) : 604 - 609
  • [10] Systems immunology: just getting started
    Davis, Mark M.
    Tato, Cristina M.
    Furman, David
    [J]. NATURE IMMUNOLOGY, 2017, 18 (07) : 725 - 732