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‘You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research

Within the myriad articles about participants' opinions of genomics research, the views of a distinct group – people with a rare disease (RD) – are unknown. It is important to understand if their opinions differ from the general public by dint of having a rare disease and vulnerabilities inhere...

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Detaylı Bibliyografya
Yayımlandı:Eur J Hum Genet
Asıl Yazarlar: McCormack, Pauline, Kole, Anna, Gainotti, Sabina, Mascalzoni, Deborah, Molster, Caron, Lochmüller, Hanns, Woods, Simon
Materyal Türü: Artigo
Dil:Inglês
Baskı/Yayın Bilgisi: Nature Publishing Group 2016
Konular:
Online Erişim:https://ncbi.nlm.nih.gov/pmc/articles/PMC5027679/
https://ncbi.nlm.nih.gov/pubmed/27049302
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1038/ejhg.2016.30
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