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oai:repisalud.isciii.es:20.500.12105/155782025-06-17T13:07:24Zcom_20.500.12105_2052com_20.500.12105_2051col_20.500.12105_19616

00925njm 22002777a 4500 dc Hansson, Mats G author Lochmüller, Hanns author Riess, Olaf author Schaefer, Franz author Orth, Michael author Rubinstein, Yaffa author Molster, Caron author Dawkins, Hugh author Taruscio, Domenica author Posada De la Paz, Manuel author Woods, Simon author 2016-11 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-identification. At the same time, there is a need in medical science to be able to identify individual patients. In particular for rare disease research there is a special and well-documented need for research collaboration so that data and biosamples from multiple independent studies can be shared across borders. In this article, we identify the needs and arguments related to de-identification and re-identification of patients and research subjects and suggest how the different needs may be balanced within a framework of using unique encrypted identifiers. Eur J Hum Genet. 2016 Nov;24(11):1553-1558. 10.1038/ejhg.2016.52 1476-5438 European journal of human genetics : EJHG 27222291 http://hdl.handle.net/20.500.12105/15578 The risk of re-identification versus the need to identify individuals in rare disease research