Workshops and courses

ELIXIR node event The case of data reuse: ethical, legal, and societal issues in international genomic data access and sharing

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Date: 9 February 2023

Health data collected in cohort studies are valuable sources for knowledge generation and the advance of biomedical research. However, the use of these data for research projects beyond the initial purpose raises several ethical, legal, and societal questions regarding the sensitivity of genomic data sourced from vulnerable and ethnic groups, such as African genetic data and material.

The webinar addresses these challenges regarding reuse of health/genomic data in CINECA from the ELSI perspective and FAIR principles, and highlights GDPR provisions and their institutional sources of interpretation, national laws, the corresponding legal, ethical, and social science literature, as well as outcomes from stakeholder engagement workshops with patient representatives, African researchers, and CINECA technical experts. The webinar provides ethical and legal recommendations that take societal implications into account for data access to European, Canadian, and African cohorts and responsible sharing mainly on four key areas: (1) Engagement and benefit sharing as prerequisites for data sharing, (2) Informed consent and reuse of data, (3) Safeguards and respect for privacy, and (4) Further uses and data-access. The webinar concludes with an outlook on upcoming ELSI developments regarding data reuse, synthetic data, and artificial intelligence (AI).

Contact: Marta Lloret Llinares - marta.lloret@ebi.ac.uk

Keywords: DNA & RNA (dna-rna), Proteins (proteins), UniProt: The Universal Protein Resource, Fermentation, Microbial ecosystems webinar, Antimicrobial resistance, Ensembl, BLAST, Open Targets Platform, Cross domain (cross-domain), Chemical biology (chemical-biology), Drug discovery, Drug target identification, UniRule, ARBA, Automated annotation, MetaboLights: Metabolomics repository and reference database, Chemical Entities of Biological Interest, ChEBI, Metabolites, Molecular building blocks of life, Human Cell Atlas Data Coordination Platform, Single-cell transcriptomics, HCA data portal, Programmatic access, API, Python, Complex Portal, macromolecular assembly, InterPro, Boolean modelling, Europe PubMed Central, Literature (literature), Open access, Protein Data Bank in Europe - Knowledge Base, 3D structure, AlphaFold Database, DeepMind, Artificial intelligence, AI, Structure prediction, cancer, Boolean, Ensembl Genomes, European Nucleotide Archive, Data archive, Raw sequencing data, RNAcentral, Non-coding RNA, ncRNA, GPU, Data protection, Job dispatcher, Bioimage analysis resource, Accessibility, Missense variation, Biostatistics, Rfam, non-coding RNA, Infernal software, Sequence annotation, Root microbiome, Abiotic stress, land management, Plant genotype, Plant webinar series, HPC, database development, cross-linked databases, Plant database, data infrastructure, Plant breeding, Data standards, data managemnet, data sharing, Hyb-Seq method, Flowering plants, Crop improvement, Pangenomics, Pangenomes, Virtual humans, Drug-target identification, plant-microbe interactions, Spatial transcriptomics, Plant research, Drug targets, Machine learning, Mathematical modelling, plant science, Data integration, plant-environment interaction, Phenotyping, field phenotyping, Deep phenotyping, EOSC-Life, NHGRI-EBI GWAS Catalog, clinical data, genome-wide association, plants, European Variation Archive, EVA, Variant clusters, Variant data annotation, Constraint-based metabolic modelling, UniProt knowledgebase, protein variant impact, disease-associated protein variants, Bioethics, FAIR principles, ELSI, cohort data, translational research

Organizer: European Bioinformatics Institute (EBI)

Host institutions: EMBL-EBI

Event types:

  • Workshops and courses

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