Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?

• Main Author: Budin-Ljøsne, Isabelle
• Publication Date: 2016
• Other Authors: Mascalzoni, Deborah, Soini, Sirpa, Machado, Helena, Kaye, Jane, Bentzen, Heidi Beate, Rial-Sebbag, Emmanuelle, D'Abramo, Flavio, Witt, Michał, Schamps, Geneviève, Katić, Višnja, Krajnovic, Dusanca, Harris, Jennifer R.
• Format: Article
• Language: eng
• Source: Repositórios Científicos de Acesso Aberto de Portugal (RCAAP)
• Download full: https://hdl.handle.net/10316/36315; https://doi.org/10.1089/bio.2015.0115

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.