PuSH - Publication Server of Helmholtz Zentrum München

Export: TXT Text RIS Endnote (RIS) BIB BibTeX
Borry, P.* ; Bentzen, H.B.* ; Budin-Ljøsne, I.* ; Cornel, M.C.* ; Howard, H.C.* ; Feeney, O.* ; Jackson, L.* ; Mascalzoni, D.* ; Mendes, Á.* ; Peterlin, B.* ; Riso, B.* ; Shabani, M.* ; Skirton, H.* ; Sterckx, S.* ; Vears, D.* ; Wjst, M. ; Felzmann, H.*

The challenges of the expanded availability of genomic information: An agenda-setting paper.

J. Community Genet. 9, 103-116 (2018)
Publ. Version/Full Text DOI PMC
Open Access Hybrid
Creative Commons Lizenzvertrag
Rapid advances in microarray and sequencing technologies are making genotyping and genome sequencing more affordable and readily available. There is an expectation that genomic sequencing technologies improve personalized diagnosis and personalized drug therapy. Concurrently, provision of direct-to-consumer genetic testing by commercial providers has enabled individuals’ direct access to their genomic data. The expanded availability of genomic data is perceived as influencing the relationship between the various parties involved including healthcare professionals, researchers, patients, individuals, families, industry, and government. This results in a need to revisit their roles and responsibilities. In a 1-day agenda-setting meeting organized by the COST Action IS1303 “Citizen’s Health through public-private Initiatives: Public health, Market and Ethical perspectives,” participants discussed the main challenges associated with the expanded availability of genomic information, with a specific focus on public-private partnerships, and provided an outline from which to discuss in detail the identified challenges. This paper summarizes the points raised at this meeting in five main parts and highlights the key cross-cutting themes. In light of the increasing availability of genomic information, it is expected that this paper will provide timely direction for future research and policy making in this area.
Impact Factor
Scopus SNIP
Scopus
Cited By
Altmetric
0.000
0.839
24
Tags
Annotations
Special Publikation
Hide on homepage

Edit extra information
Edit own tags
Private
Edit own annotation
Private
Hide on publication lists
on hompage
Mark as special
publikation
Publication type Article: Journal article
Document type Scientific Article
Keywords Clinical And Research Genomic Data ; Data Sharing ; Direct-to-consumer Genetic Testing ; Genomics ; Informed Consent ; Return Of Results
Language
Publication Year 2018
Prepublished in Year 2017
HGF-reported in Year 2017
ISSN (print) / ISBN 1868-310X
e-ISSN 1868-6001
Journal Journal of Community Genetics
Quellenangaben Volume: 9, Issue: 2, Pages: 103-116 Article Number: , Supplement: ,
Publisher Springer
Reviewing status Peer reviewed
Institute(s) Institute of Lung Health and Immunity (LHI)
POF-Topic(s) 30202 - Environmental Health
Research field(s) Lung Research
PSP Element(s) G-505000-003
DOI 10.1007/s12687-017-0331-7
Scopus ID 85029899417
PubMed ID 28952070
Erfassungsdatum 2017-10-05
[➜Report correction]