We begin with a brief review of the characterisation of deidentified and anonymous samples in key policy documents, and discuss different ways in which linkage between samples and individuals from whom they originated can be established. We argue that harmonising the current taxonomy regarding the identifiability of research samples is necessary and possible in principle. Misleading communications could jeopardise public trust in large-scale population databases that are of increasing importance in the advancement of genomic science and could hinder international research collaboration. For research purposes, using ‘anonymous’ or ‘anonymised’ biological samples is widely perceived as an appropriate way of reconciling conflicts between the control, privacy and confidentiality interests of those from whom the samples originated and the public (or commercial) interest in carrying out research. Implied in all these uses of anonymisation is a common sense meaning which is, roughly, that whatever was at some point directly linked to a person (an action, a statement, a testimony, an assessment or a sum of money) is unlinked by some process that makes it practically impossible to reidentify that person.
ANONYMIZER UNIVERSAL NONE FOUND PROFESSIONAL
It offers a range of advantages to, for example, witnesses in forensic proceedings, ‘whistle-blowers’ in professional settings, academic peer reviewers and financial donors. As there is wide variation in the taxonomy for tissue samples and no uniform national or international standards, the authors propose that a numeral-based universal coding system be implemented that focuses on specifying incremental levels of identifiability, rather than use terms that imply that the reidentification of research samples and associated actions are categorically impossible.Īnonymity comes in many guises.
This is necessary as a matter of conceptual clarity and because failure to do so may jeopardise public trust in the governance of large scale databases. The authors therefore propose that terms such as ‘anonymised’, ‘anonymous’ or ‘non-identifiable’ be removed entirely from documents describing research samples, especially from those aimed at the public. In view of recent developments in science and consumer-driven genomics the authors argue that such statements are misleading and only muddle complex ethical questions about possible entitlements to control over samples. High level guidance documents suggest that withdrawal of consent and samples and the provision of feedback are impossible in the case of anonymous samples. Because they lack externally identifying information, they are viewed as useful in reconciling conflicts between the control, privacy and confidentiality interests of those from whom the samples originated and the public (or commercial) interest in carrying out research, as reflected in ‘consent or anonymise’ policies. So-called ‘anonymous’ tissue samples are widely used in research.
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