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The risk of re-identification versus the need to identify individuals in rare disease research
There is a growing concern in the ethics literature and among policy makers that de-identification or coding of personal data and biospecimens is not sufficient for protecting research subjects from privacy invasions and possible breaches of confidentiality due to the possibility of unauthorized re-...
Autores principales: | Hansson, Mats G, Lochmüller, Hanns, Riess, Olaf, Schaefer, Franz, Orth, Michael, Rubinstein, Yaffa, Molster, Caron, Dawkins, Hugh, Taruscio, Domenica, Posada, Manuel, Woods, Simon |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Nature Publishing Group
2016
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5110051/ https://www.ncbi.nlm.nih.gov/pubmed/27222291 http://dx.doi.org/10.1038/ejhg.2016.52 |
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