Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?

Detalhes bibliográficos
Autor(a) principal: Budin-Ljøsne, Isabelle
Data de Publicação: 2016
Outros Autores: Mascalzoni, Deborah, Soini, Sirpa, Machado, Helena, Kaye, Jane, Bentzen, Heidi Beate, Rial-Sebbag, Emmanuelle, D'Abramo, Flavio, Witt, Michał, Schamps, Geneviève, Katić, Višnja, Krajnovic, Dusanca, Harris, Jennifer R.
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
Texto Completo: https://hdl.handle.net/10316/36315
https://doi.org/10.1089/bio.2015.0115
Resumo: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges.
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spelling Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges.Mary Ann Liebert2016-06info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articlehttps://hdl.handle.net/10316/36315https://hdl.handle.net/10316/36315https://doi.org/10.1089/bio.2015.0115https://doi.org/10.1089/bio.2015.0115eng1947-55351947-5543http://online.liebertpub.com/doi/abs/10.1089/bio.2015.0115Budin-Ljøsne, IsabelleMascalzoni, DeborahSoini, SirpaMachado, HelenaKaye, JaneBentzen, Heidi BeateRial-Sebbag, EmmanuelleD'Abramo, FlavioWitt, MichałSchamps, GenevièveKatić, VišnjaKrajnovic, DusancaHarris, Jennifer R.info:eu-repo/semantics/openAccessreponame:Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)instname:FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologiainstacron:RCAAP2021-07-20T10:15:11Zoai:estudogeral.uc.pt:10316/36315Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireinfo@rcaap.ptopendoar:https://opendoar.ac.uk/repository/71602025-05-29T05:05:53.146753Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) - FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologiafalse
dc.title.none.fl_str_mv Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
title Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
spellingShingle Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
Budin-Ljøsne, Isabelle
title_short Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
title_full Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
title_fullStr Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
title_full_unstemmed Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
title_sort Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
author Budin-Ljøsne, Isabelle
author_facet Budin-Ljøsne, Isabelle
Mascalzoni, Deborah
Soini, Sirpa
Machado, Helena
Kaye, Jane
Bentzen, Heidi Beate
Rial-Sebbag, Emmanuelle
D'Abramo, Flavio
Witt, Michał
Schamps, Geneviève
Katić, Višnja
Krajnovic, Dusanca
Harris, Jennifer R.
author_role author
author2 Mascalzoni, Deborah
Soini, Sirpa
Machado, Helena
Kaye, Jane
Bentzen, Heidi Beate
Rial-Sebbag, Emmanuelle
D'Abramo, Flavio
Witt, Michał
Schamps, Geneviève
Katić, Višnja
Krajnovic, Dusanca
Harris, Jennifer R.
author2_role author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.author.fl_str_mv Budin-Ljøsne, Isabelle
Mascalzoni, Deborah
Soini, Sirpa
Machado, Helena
Kaye, Jane
Bentzen, Heidi Beate
Rial-Sebbag, Emmanuelle
D'Abramo, Flavio
Witt, Michał
Schamps, Geneviève
Katić, Višnja
Krajnovic, Dusanca
Harris, Jennifer R.
description There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges.
publishDate 2016
dc.date.none.fl_str_mv 2016-06
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 https://hdl.handle.net/10316/36315
https://hdl.handle.net/10316/36315
https://doi.org/10.1089/bio.2015.0115
https://doi.org/10.1089/bio.2015.0115
url https://hdl.handle.net/10316/36315
https://doi.org/10.1089/bio.2015.0115
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 1947-5535
1947-5543
http://online.liebertpub.com/doi/abs/10.1089/bio.2015.0115
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.publisher.none.fl_str_mv Mary Ann Liebert
publisher.none.fl_str_mv Mary Ann Liebert
dc.source.none.fl_str_mv reponame:Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
instname:FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologia
instacron:RCAAP
instname_str FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologia
instacron_str RCAAP
institution RCAAP
reponame_str Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
collection Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
repository.name.fl_str_mv Repositórios Científicos de Acesso Aberto de Portugal (RCAAP) - FCCN, serviços digitais da FCT – Fundação para a Ciência e a Tecnologia
repository.mail.fl_str_mv info@rcaap.pt
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