Smyth discusses the recent report from the Academy of Medical Sciences on research regulation. The expert group’s reliance on anonymity to protect participants in research was based on assumptions about key NHS patient data systems that may no longer be justified in an era of ubiquitous data generation and sharing. The report also pays insufficient attention to patient autonomy. Patients are not currently being adequately informed about possible secondary uses of their medical data for medical research; are not asked to give clear, specific, free, and informed consent; are not offered unambiguous and effective opt-outs; and are misled about the degree of anonymisation of their data and the likelihood of re-identification
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Brown, Ian; Brown, Lindsey; Korff, Douwe, BMJ, 342, d973, DOI: 10.1136/bmj.d973
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