Show simple item record

dc.creatorBudin-Ljosne, Isabelle
dc.creatorMascalzoni, Deborah
dc.creatorSoini, Sirpa
dc.creatorMachado, Helena
dc.creatorKaye, Jane
dc.creatorBentzen, Heidi Beate
dc.creatorRial-Sebbag, Emmanuelle
dc.creatorD'Abramo, Flavio
dc.creatorWitt, Michal
dc.creatorSchamps, Genevieve
dc.creatorKatić, Višnja
dc.creatorKrajnović, Dušanka
dc.creatorHarris, Jennifer R.
dc.date.accessioned2019-09-02T11:51:54Z
dc.date.available2019-09-02T11:51:54Z
dc.date.issued2016
dc.identifier.issn1947-5535
dc.identifier.urihttp://farfar.pharmacy.bg.ac.rs/handle/123456789/2585
dc.description.abstractBackground: 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. Materials and Methods: A consultation of the COST Action members was conducted through an email survey and a workshop. The results from the consultation were analyzed following a conventional content analysis approach. Results: Legal frameworks, professional guidelines, and financial, organizational, and human resources to support the feedback of results are largely missing in Europe. Necessary steps to facilitate the feedback process include clarifying legal requirements to the feedback of results, developing harmonized European best practices, promoting interdisciplinary and cross-institutional collaboration, designing educational programs and cost-efficient IT-based platforms, involving research ethics committees, and documenting the health benefits and risks of the feedback process. Conclusions: Coordinated efforts at pan-European level are needed to enable equitable, scientifically sound, and socially robust feedback of results to research participants.en
dc.publisherMary Ann Liebert, Inc, New Rochelle
dc.relationWellcome Trust - 096599/2/11/Z
dc.relationEU F7 project BIOSHARE
dc.relationInnovative Medicines Initiative project BTCure - 115142-1
dc.relationBiobank Standardisation and Harmonisation for Research Excellence in the European Union (BioSHaRE-EU) program - European Union Seventh Framework Programme - 261433
dc.relationEuropean Union Seventh Framework Programme - 305444
dc.relationBioBanking and Molecular Resource Infrastructure of Sweden project - Swedish Research Council (BBMRI) LPC - 313010
dc.relationEuropean Research Council - 648608
dc.relationEU COST Action
dc.relationBiobank Norway - Norwegian Research Council - NFR 197443/F50
dc.relationLegRegPCM (Legal Regulation of Information Processing relating to Personalized Cancer Medicine) - Norwegian Research Council - NFR BIOTEK2021/238999/O30
dc.relationNational Research and Innovation Platform for Personalized Cancer Medicine - Norwegian Research Council - NFR BIOTEK2021/ES495029
dc.rightsopenAccess
dc.sourceBiopreservation and Biobanking
dc.titleFeedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?en
dc.typearticle
dc.rights.licenseARR
dcterms.abstractХаррис, Јеннифер Р.; Мацхадо, Хелена; Каyе, Јане; Бентзен, Хеиди Беате; Катић, Вишња; Соини, Сирпа; Масцалзони, Деборах; Будин-Љосне, Исабелле; Крајновић, Душанка; Риал-Себбаг, Еммануелле; Д'Aбрамо, Флавио; Wитт, Мицхал; Сцхампс, Геневиеве;
dc.citation.volume14
dc.citation.issue3
dc.citation.spage241
dc.citation.epage248
dc.citation.other14(3): 241-248
dc.citation.rankM23
dc.identifier.wos000377821800008
dc.identifier.doi10.1089/bio.2015.0115
dc.identifier.pmid27082461
dc.identifier.scopus2-s2.0-84973348811
dc.identifier.fulltexthttp://farfar.pharmacy.bg.ac.rs//bitstream/id/1262/2583.pdf
dc.identifier.rcubconv_3380
dc.type.versionpublishedVersion


Files in this item

Thumbnail

This item appears in the following Collection(s)

Show simple item record