The challenges of the expanded availability of genomic information: an agenda setting-paper
Autor(a) principal: | |
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Data de Publicação: | 2018 |
Outros Autores: | , , , , , , , , , , , , , , , |
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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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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1817546358207283200 |