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.
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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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