Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

The increased international sharing of data in research consortia and the introduction of new technologies for sequencing challenge the informed consent (IC) process, adding complexities that require coordination between research centres worldwide. Rare disease consortia present special challenges s...

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Détails bibliographiques
Publié dans:Eur J Hum Genet
Auteurs principaux: Gainotti, Sabina, Turner, Cathy, Woods, Simon, Kole, Anna, McCormack, Pauline, Lochmüller, Hanns, Riess, Olaf, Straub, Volker, Posada, Manuel, Taruscio, Domenica, Mascalzoni, Deborah
Format: Artigo
Langue:Inglês
Publié: Nature Publishing Group 2016
Sujets:
Article
Accès en ligne:https://ncbi.nlm.nih.gov/pmc/articles/PMC4989211/
https://ncbi.nlm.nih.gov/pubmed/26860059
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1038/ejhg.2016.2
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