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

Detalhes bibliográficos
Autor(a) principal: Borry, P.
Data de Publicação: 2018
Outros Autores: Bentzen, H. B., Budin-Ljøsne, I., Cornel, M. C., Howard, H.C., Feeney, O., Jackson, L., Mascalzoni, D., Mendes, A., Peterlin, B., Riso, B., Shabani, M., Skirton, H., Sterckx, S., Vears, D. F., Wjst, M., Felzmann, H.
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10071/15379
Resumo: 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.
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spelling The challenges of the expanded availability of genomic information: an agenda setting-paperGenomicsClinical and research genomic dataReturn of resultsData sharingInformed consentDirect-to-consumer genetic testingRapid 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.Springer2018-03-16T16:37:53Z2018-01-01T00:00:00Z20182019-03-20T11:24:26Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10071/15379eng1868-310X10.1007/s12687-017-0331-7Borry, P.Bentzen, H. B.Budin-Ljøsne, I.Cornel, M. C.Howard, H.C.Feeney, O.Jackson, L.Mascalzoni, D.Mendes, A.Peterlin, B.Riso, B.Shabani, M.Skirton, H.Sterckx, S.Vears, D. F.Wjst, M.Felzmann, H.info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2024-07-07T02:56:48Zoai:repositorio.iscte-iul.pt:10071/15379Portal AgregadorONGhttps://www.rcaap.pt/oai/openairemluisa.alvim@gmail.comopendoar:71602024-07-07T02:56:48Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv The challenges of the expanded availability of genomic information: an agenda setting-paper
title The challenges of the expanded availability of genomic information: an agenda setting-paper
spellingShingle The challenges of the expanded availability of genomic information: an agenda setting-paper
Borry, P.
Genomics
Clinical and research genomic data
Return of results
Data sharing
Informed consent
Direct-to-consumer genetic testing
title_short The challenges of the expanded availability of genomic information: an agenda setting-paper
title_full The challenges of the expanded availability of genomic information: an agenda setting-paper
title_fullStr The challenges of the expanded availability of genomic information: an agenda setting-paper
title_full_unstemmed The challenges of the expanded availability of genomic information: an agenda setting-paper
title_sort The challenges of the expanded availability of genomic information: an agenda setting-paper
author Borry, P.
author_facet Borry, P.
Bentzen, H. B.
Budin-Ljøsne, I.
Cornel, M. C.
Howard, H.C.
Feeney, O.
Jackson, L.
Mascalzoni, D.
Mendes, A.
Peterlin, B.
Riso, B.
Shabani, M.
Skirton, H.
Sterckx, S.
Vears, D. F.
Wjst, M.
Felzmann, H.
author_role author
author2 Bentzen, H. B.
Budin-Ljøsne, I.
Cornel, M. C.
Howard, H.C.
Feeney, O.
Jackson, L.
Mascalzoni, D.
Mendes, A.
Peterlin, B.
Riso, B.
Shabani, M.
Skirton, H.
Sterckx, S.
Vears, D. F.
Wjst, M.
Felzmann, H.
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.author.fl_str_mv Borry, P.
Bentzen, H. B.
Budin-Ljøsne, I.
Cornel, M. C.
Howard, H.C.
Feeney, O.
Jackson, L.
Mascalzoni, D.
Mendes, A.
Peterlin, B.
Riso, B.
Shabani, M.
Skirton, H.
Sterckx, S.
Vears, D. F.
Wjst, M.
Felzmann, H.
dc.subject.por.fl_str_mv Genomics
Clinical and research genomic data
Return of results
Data sharing
Informed consent
Direct-to-consumer genetic testing
topic Genomics
Clinical and research genomic data
Return of results
Data sharing
Informed consent
Direct-to-consumer genetic testing
description 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.
publishDate 2018
dc.date.none.fl_str_mv 2018-03-16T16:37:53Z
2018-01-01T00:00:00Z
2018
2019-03-20T11:24:26Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10071/15379
url http://hdl.handle.net/10071/15379
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 1868-310X
10.1007/s12687-017-0331-7
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Springer
publisher.none.fl_str_mv Springer
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
institution RCAAP
reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
repository.mail.fl_str_mv mluisa.alvim@gmail.com
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