Journal article
Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
I Budin-Ljøsne, D Mascalzoni, S Soini, H Machado, J Kaye, HB Bentzen, E Rial-Sebbag, F D'Abramo, M Witt, G Schamps, V Katić, D Krajnovic, JR Harris
Biopreservation and Biobanking | MARY ANN LIEBERT, INC | Published : 2016
Abstract
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 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..
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Awarded by Wellcome Trust
Funding Acknowledgements
The authors would like to thank Professor Heather Skirton, Plymouth University, for skillfully leading the OST workshop in Coimbra; the COST Action CHIP ME chairs of WG2 and WG3 for helping at collecting questionnaires; the COST Action CHIP ME members for their useful contributions; Professor Michael Hummel, Charite-Universitatsmedizin Berlin, Professor Jan Helge Solbakk, University of Oslo, and Professor Jean-Marc Hausman, Universite catholique de Louvain, for their comments. This article is based upon work from COST Action IS1303 "Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives," and is supported by COST (European Cooperation in Science and Technology) (www.cost.eu); the Biobank Standardisation and Harmonisation for Research Excellence in the European Union (BioSHaRE-EU) program, which received funding from the European Union Seventh Framework Programme (FP7/2007-2013) under Grant Agreement No. 261433; the National Research and Innovation Platform for Personalized Cancer Medicine funded by the Norwegian Research Council (NFR BIOTEK2021/ES495029); the European Union Seventh Framework Programme (FP7/20072013) under Grant Agreement No. 305444 (RD-Connect); the Innovative Medicines Initiative project BTCure (Grant Agreement No. 115142-1); the BioBanking and Molecular Resource Infrastructure of Sweden project financed by the Swedish Research Council (BBMRI) LPC (313010); LegRegPCM (Legal Regulation of Information Processing relating to Personalized Cancer Medicine) funded by the Norwegian Research Council (NFR BIOTEK2021/238999/O30); the European Research Council, under Grant Agreement No. 648608; and Biobank Norway, funded by the Norwegian Research Council (NFR 197443/F50). JK is funded under Wellcome Trust Award 096599/2/11/Z and the EU F7 project BIOSHARE.