Autor(es):
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 ; Krajnovic, Dusanca ; Harris, Jennifer R.
Data: 2016
Identificador Persistente: https://hdl.handle.net/10316/36315
Origem: Estudo Geral - Universidade de Coimbra
Projeto/bolsa:
info:eu-repo/grantAgreement/EC/FP7/261433/EU;
info:eu-repo/grantAgreement/EC/FP7/305444/EU;
info:eu-repo/grantAgreement/EC/FP7/313010/EU;
info:eu-repo/grantAgreement/EC/H2020/648608/EU;
Descrição
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.
