prikaz prve stranice dokumenta Feedback of individual genetic results to research participants: Is it feasible in Europe?
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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

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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. Preuzeto s 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, br. 3, 2016, str. 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, br. 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), str. 241-248. Preuzeto s: https://urn.nsk.hr/urn:nbn:hr:184:528325 (Datum pristupa: 26.11.2024.)

Budin Ljøsne I, Mascalzoni D, Soini S, Machado H, Kaye J, Bentzen HB, i sur.. Feedback of individual genetic results to research participants: Is it feasible in Europe?. Biopreservation and Biobanking [Internet]. 2016. [pristupljeno 26.11.2024.];14(3):241-248. Dostupno na: 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, br. 3, str. 241-248, 2016. [Online]. Dostupno na: https://urn.nsk.hr/urn:nbn:hr:184:528325. [Citirano: 26.11.2024.]

Za citiranje koristite ovu mrežnu adresu: https://urn.nsk.hr/urn:nbn:hr:184:528325
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Podaci o radu
Naslov (engleski)Feedback of individual genetic results to research participants: Is it feasible in Europe?
AutorIsabelle Budin-Ljøsne
AutorDeborah Mascalzoni
AutorSirpa Soini
AutorHelena Machado
AutorJane Kaye
AutorHeidi Beate Bentzen
AutorEmmanuelle Rial-Sebbag
AutorFlavio D'Abramo
AutorMichał Witt
AutorGeneviève Schamps
AutorVišnja Katić
AutorDušanka Krajnović
AutorJennifer R Harris
KolaboracijaWorking Group 1
Autorova ustanovaSveučilište u Rijeci
Medicinski fakultet
(Katedra za ortodonciju)
Znanstveno / umjetničko
područje, polje i grana		BIOMEDICINA I ZDRAVSTVO
Temeljne medicinske znanosti
Sažetak (engleski)
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.
Ključne riječi (engleski)
Jezikengleski
Vrsta publikacijeZnanstveni rad - Izvorni znanstveni rad
Status objaveObjavljen
Vrsta recenzijeRecenziran - međunarodna recenzija
Verzija publikacijeObjavljena verzija rada (izdavačev PDF)
Naslov časopisaBiopreservation and Biobanking
Brojčani podacivol. 14, br. 3, str. 241-248
p-ISSN1947-5535
URN:NBNurn:nbn:hr:184:528325
Datum objave publikacije2016
ProjektŠifra: 261433
Naziv (engleski): Biobank Standardisation and Harmonisation for Research Excellence in the European Union
Kratica: BIOSHARE-EU
Pravna nadležnost: eu
Financijer: EC
Linija financiranja: FP7
URL dokumentahttp://bib.irb.hr/808260
Vrsta resursaTekst
Prava pristupaOtvoreni pristup
Uvjeti korištenjaIkona licence Imenovanje-Nekomercijalno-Bez prerada 4.0 međunarodna (CC BY-NC-ND 4.0)
Datum i vrijeme pohrane2022-02-18 13:39:53