TY  - JOUR
AU  - Budin-Ljosne, Isabelle
AU  - Mascalzoni, Deborah
AU  - Soini, Sirpa
AU  - Machado, Helena
AU  - Kaye, Jane
AU  - Bentzen, Heidi Beate
AU  - Rial-Sebbag, Emmanuelle
AU  - D'Abramo, Flavio
AU  - Witt, Michal
AU  - Schamps, Genevieve
AU  - Katić, Višnja
AU  - Krajnović, Dušanka
AU  - Harris, Jennifer R.
PY  - 2016
UR  - https://farfar.pharmacy.bg.ac.rs/handle/123456789/2585
AB  - 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 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.
PB  - Mary Ann Liebert, Inc, New Rochelle
T2  - Biopreservation and Biobanking
T1  - Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
VL  - 14
IS  - 3
SP  - 241
EP  - 248
DO  - 10.1089/bio.2015.0115
ER  - 

@article{
author = "Budin-Ljosne, Isabelle and Mascalzoni, Deborah and Soini, Sirpa and Machado, Helena and Kaye, Jane and Bentzen, Heidi Beate and Rial-Sebbag, Emmanuelle and D'Abramo, Flavio and Witt, Michal and Schamps, Genevieve and Katić, Višnja and Krajnović, Dušanka and Harris, Jennifer R.",
year = "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 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.",
publisher = "Mary Ann Liebert, Inc, New Rochelle",
journal = "Biopreservation and Biobanking",
title = "Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?",
volume = "14",
number = "3",
pages = "241-248",
doi = "10.1089/bio.2015.0115"
}

Budin-Ljosne, I., Mascalzoni, D., Soini, S., Machado, H., Kaye, J., Bentzen, H. B., Rial-Sebbag, E., D'Abramo, F., Witt, M., Schamps, G., Katić, V., Krajnović, D.,& Harris, J. R.. (2016). Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?. in Biopreservation and Biobanking
Mary Ann Liebert, Inc, New Rochelle., 14(3), 241-248.
https://doi.org/10.1089/bio.2015.0115

Budin-Ljosne I, Mascalzoni D, Soini S, Machado H, Kaye J, Bentzen HB, Rial-Sebbag E, D'Abramo F, Witt M, Schamps G, Katić V, Krajnović D, Harris JR. Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?. in Biopreservation and Biobanking. 2016;14(3):241-248.
doi:10.1089/bio.2015.0115 .

Budin-Ljosne, Isabelle, Mascalzoni, Deborah, Soini, Sirpa, Machado, Helena, Kaye, Jane, Bentzen, Heidi Beate, Rial-Sebbag, Emmanuelle, D'Abramo, Flavio, Witt, Michal, Schamps, Genevieve, Katić, Višnja, Krajnović, Dušanka, Harris, Jennifer R., "Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?" in Biopreservation and Biobanking, 14, no. 3 (2016):241-248,
https://doi.org/10.1089/bio.2015.0115 . .