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Scientific paper - Original scientific paper
Feedback of individual genetic results to research participants: Is it feasible in Europe?
Biopreservation and Biobanking, 14 (2016), 3; 241-248. urn:nbn:hr:184:528325
(Working Group 1) 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; Krajnović, Dušanka; Harris, Jennifer R

Institutional repository: Repository of the University of Rijeka, Faculty of Medicine

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Budin Ljøsne, I., Mascalzoni, D., Soini, S., Machado, H., Kaye, J., Bentzen, H. B. ... Harris, J. R. (2016). Feedback of individual genetic results to research participants: Is it feasible in Europe?. Biopreservation and Biobanking, 14. (3), 241-248. Retrieved from https://urn.nsk.hr/urn:nbn:hr:184:528325

Budin Ljøsne, Isabelle, et al. "Feedback of individual genetic results to research participants: Is it feasible in Europe?." Biopreservation and Biobanking, vol. 14, no. 3, 2016, pp. 241-248. https://urn.nsk.hr/urn:nbn:hr:184:528325

Budin Ljøsne, Isabelle, Deborah Mascalzoni, Sirpa Soini, Helena Machado, Jane Kaye, Heidi Beate Bentzen, Emmanuelle Rial Sebbag, et al. "Feedback of individual genetic results to research participants: Is it feasible in Europe?." Biopreservation and Biobanking 14, no. 3 (2016): 241-248. https://urn.nsk.hr/urn:nbn:hr:184:528325

Budin Ljøsne, I., et al. (2016) 'Feedback of individual genetic results to research participants: Is it feasible in Europe?', Biopreservation and Biobanking, 14(3), pp. 241-248. Available at: https://urn.nsk.hr/urn:nbn:hr:184:528325 (Accessed 29 November 2024)

Budin Ljøsne I, Mascalzoni D, Soini S, Machado H, Kaye J, Bentzen HB, and sur.. Feedback of individual genetic results to research participants: Is it feasible in Europe?. Biopreservation and Biobanking [Internet]. 2016 [cited 2024 November 29];14(3):241-248. Available at: https://urn.nsk.hr/urn:nbn:hr:184:528325

I. Budin Ljøsne, et al., "Feedback of individual genetic results to research participants: Is it feasible in Europe?", Biopreservation and Biobanking, vol. 14, no. 3, pp. 241-248, 2016. [Online]. Available at: https://urn.nsk.hr/urn:nbn:hr:184:528325. [Accessed: 29 November 2024]

Metadata
Title (english)Feedback of individual genetic results to research participants: Is it feasible in Europe?
AuthorIsabelle Budin-Ljøsne
AuthorDeborah Mascalzoni
AuthorSirpa Soini
AuthorHelena Machado
AuthorJane Kaye
AuthorHeidi Beate Bentzen
AuthorEmmanuelle Rial-Sebbag
AuthorFlavio D'Abramo
AuthorMichał Witt
AuthorGeneviève Schamps
AuthorVišnja Katić
AuthorDušanka Krajnović
AuthorJennifer R Harris
CollaborationWorking Group 1
Author's institutionUniversity of Rijeka
Faculty of Medicine
(Department of Orthodontics)
Scientific / art field,
discipline and subdiscipline		BIOMEDICINE AND HEALTHCARE
Basic Medical Sciences
Abstract (english)
Background: 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 such results are usually not provided to research participants for many reasons. This paper 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. Methods: A consultation of the COST Action members was conducted through an email survey and a workshop. The results from the consultation were analysed following a conventional content analysis approach. Results: Legal frameworks, professional guidelines, 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: Co-ordinated efforts at pan-European level are needed to enable equitable, scientifically sound and socially robust feedback of results to research participants.
Keywords (english)
Languageenglish
Publication typeScientific paper - Original scientific paper
Publication statusPublished
Peer reviewPeer review - international
Publication versionPublished version
Journal titleBiopreservation and Biobanking
Numberingvol. 14, no. 3, pp. 241-248
p-ISSN1947-5535
URN:NBNurn:nbn:hr:184:528325
Publication2016
ProjectNumber: 261433
Title (english): Biobank Standardisation and Harmonisation for Research Excellence in the European Union
Acronym: BIOSHARE-EU
Jurisdiction: eu
Funding stream: FP7
Document URLhttp://bib.irb.hr/808260
Type of resourceText
Access conditionsOpen access
Terms of useLicence Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) icon
Created on2022-02-18 13:39:53