Powered by OpenAIRE graph
Found an issue? Give us feedback
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/ ZENODOarrow_drop_down
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/
ZENODO
Project deliverable . 2021
License: CC BY
Data sources: Datacite
image/svg+xml art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos Open Access logo, converted into svg, designed by PLoS. This version with transparent background. http://commons.wikimedia.org/wiki/File:Open_Access_logo_PLoS_white.svg art designer at PLoS, modified by Wikipedia users Nina, Beao, JakobVoss, and AnonMoos http://www.plos.org/
ZENODO
Project deliverable . 2021
License: CC BY
Data sources: Datacite
versions View all 2 versions
addClaim

This Research product is the result of merged Research products in OpenAIRE.

You have already added 0 works in your ORCID record related to the merged Research product.

Beyond 1 Million Genomes - B1MG D6.8 - Policy briefs - 1v0

Authors: L��pez, Pepa; Rodr��guez, Esther;

Beyond 1 Million Genomes - B1MG D6.8 - Policy briefs - 1v0

Abstract

Among 1+MG signatory countries, it is agreed to collectively develop a cohort of at least one million European citizens that have their genome determined via Whole Genome Sequencing (WGS). The goal is to make the personal genomic data and associated health information accessible in a secure manner for the different purposes in health care (prevention, diagnostics and therapy), research and innovation, and public health. To achieve this goal, the Beyond 1 Million Genomes Project (B1MG), will provide a set of recommendations for the long-term sustainability of the initiative beyond the B1MG including guidance for countries on how to establish funding routes to ensure the establishment and maintenance of the infrastructure to enable federated cross-border access to genomic and associated phenotypic data in the long term. Long-term sustainability of the 1+MG initiative will require an appropriate organisational structure and plan. The Governing Board of B1MG will be crucial to this aim. Potential legal and financial frameworks for developing the initiative at national and international level will be explored together with its insertion/ institution as a major contributor to future initiatives. Sustainability is built on the basis of four dimensions that we will have to consider beyond the proyect and beyond this task. This four dimensions are: Financial dimension: how the initiative will be financed at European, national, local and user level. Legal dimension: how the initiative will be used in compliance with legal and data protection standards. Governance dimension: in terms of Member States involvement and legal standing of the coordination entity for cooperation of Member States. Data access dimension: related with the governance of the data and the liability of data protection. Also, particularly important, is that the initiative should work on establishing a training and education plan on e-skills for students and healthcare professionals, hospital managers and policy makers to be put in place at the same time as the infrastructure and technologies for data exchange are put in place within healthcare systems. This Policy Brief is a first document (of three) that focuses on the dimensions of financial and legal aspects of sustainability and has been elaborated with main conclusions drawn from the first policy and legal context and mapping analysis.

Keywords

B1MG, Policy, Sustainability, Beyond One Million Genomes, 1+MG, 1 Million Genomes Initiative, ELIXIR

  • BIP!
    Impact byBIP!
    citations
    This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    0
    popularity
    This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
    Average
    influence
    This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
    Average
    impulse
    This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
    Average
    OpenAIRE UsageCounts
    Usage byUsageCounts
    visibility views 32
    download downloads 29
  • 32
    views
    29
    downloads
    Powered byOpenAIRE UsageCounts
Powered by OpenAIRE graph
Found an issue? Give us feedback
visibility
download
citations
This is an alternative to the "Influence" indicator, which also reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Citations provided by BIP!
popularity
This indicator reflects the "current" impact/attention (the "hype") of an article in the research community at large, based on the underlying citation network.
BIP!Popularity provided by BIP!
influence
This indicator reflects the overall/total impact of an article in the research community at large, based on the underlying citation network (diachronically).
BIP!Influence provided by BIP!
impulse
This indicator reflects the initial momentum of an article directly after its publication, based on the underlying citation network.
BIP!Impulse provided by BIP!
views
OpenAIRE UsageCountsViews provided by UsageCounts
downloads
OpenAIRE UsageCountsDownloads provided by UsageCounts
0
Average
Average
Average
32
29
Green