Title: Integrating genomics into personalised healthcare: a science-for-policy perspective
Authors: ANGERS ALEXANDREBINDER ALEXANDERLOURO CALDEIRA SANDRAPETRILLO MAUROQUERCI MADDALENARAFFAEL BARBARAVAN DEN EEDE GUY
Publisher: Publications Office of the European Union
Publication Year: 2020
JRC N°: JRC120119
ISBN: 978-92-76-17156-0 (online)
ISSN: 1831-9424 (online)
Other Identifiers: EUR 30122 EN
OP KJ-NA-30122-EN-N (online)
URI: https://publications.jrc.ec.europa.eu/repository/handle/JRC120119
DOI: 10.2760/32581
Type: Conferences and workshops organized by the JRC
Abstract: The Joint Research Centre organised a high level scientific conference, entitled ‘Integrating genomics into personalised healthcare: a science-for-policy perspective’, on 12-13 February 2019 in Brussels. This flagship event addressed, inter alia, current and future genome-based screening and diagnoses schemes in terms of quality assurance and implications for individuals, patients, the health care sector and society at large. The focus of the event was on supporting patient-centric policies, covering important aspects such, data privacy and ownership and security of the genetic information produced, ethics and the impact of the genomics market on healthcare systems. The confernce highlighted challenges to the implementation and the uptake of genomics-based screening and diagnosis in health systems and mapped the appropriate actions. The event highlighted the strong disposition of the European Commission to foster integration of genomics into personalised healthcare and underlined the genomics potential to revolutionise healthcare in several ways. Moreover, it highlighted the European Commission ongoing actions to avoid that the ‘potential’ remains as such, by: • increasing awareness amongst policy makers; • supporting voluntary coordination mechanism of national, regional, and local public authorities to link the ongoing genomic medicine initiatives; • supporting the development of technical specifications to secure access and cross-border exchange of genomic datasets and to facilitate responsible sharing of information; • supporting a coordinated data governance framework; • promoting the use of open standards and data management systems; • facilitating the creation of the right environment for the uptake by reaching out and communicating to citizens, as part of the EU culture of trust and transparency. The main messages highlighted during the conference, where special attention needs to be focused (see chapter 3), are: • Access to data that have to be regulated, ensuring protection and responsible sharing; • Better economy tailored assessed and able to fund research; • Capitalise on existing infrastructure, to take full advantage of the existing potential in terms of research and coordinated actions; • Develop education programmes not only for professional scientists but also to form well-informed citizens; • Effective regulation, that is the core for development in the field, and • Forging ties with society, engaging and empowering citizens.
JRC Directorate:Health, Consumers and Reference Materials

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