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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Bibliografiske detaljer
Udgivet i:Eur J Hum Genet
Main Authors: Gainotti, Sabina, Turner, Cathy, Woods, Simon, Kole, Anna, McCormack, Pauline, Lochmüller, Hanns, Riess, Olaf, Straub, Volker, Posada, Manuel, Taruscio, Domenica, Mascalzoni, Deborah
Format: Artigo
Sprog:Inglês
Udgivet: Nature Publishing Group 2016
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Article
Online adgang: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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