The ethics of medical data records – is sharing, caring? [1/2]

Photography by: Josh Rawlinson.

In contemporary society, as the surveillance state and ‘big brother’ watch us scuttle around in the city below, privacy becomes an ethical issue that is deserving of a spotlight. Whilst the ‘incognito’ tab partially covers your browsing tracks, and social media allows you to monitor your followers – who protects the sanctity of your medical records? And, more importantly, do they have a right to share them for a utilitarian ‘greater good’?

In 2011, under the government of David Cameron, the NHS controversially introduced the idea that the public would become research patients by default. This, in a sense, means that the private medical data of each patient could become openly used in order to further medical research, and drive economic growth. But, at what cost does the supposed benefit of social and scientific progress hinder the freedom and liberty of the individual? Arguably, a fairly hefty one. If an individual can only opt to receive healthcare in exchange for their data to be recorded and used for secondary purposes other than their primary care, then this acts as a clear hindrance on their freedom to choose both health support, and strict privacy.

Exacerbating this issue is the concept of anonymisation. In order for recorded data to be genuinely anonymous, it must be unable to be tracked or linked to the original patient it belonged to. To make this a reality, statistical techniques such as altering the external appearance of data, and concealing or adding elements, must be implemented to ensure the patient’s information cannot be traced back to them. Yet, the actual process carried out by the NHS appears to deviate strongly from the very concept of anonymity – with the only methods used to ensure privacy being the removal of blatant identifiers (such as name, address, age) and altering the appearance of a patient’s NHS number. Thus, the medical records of the patient are granted, not a status of true anonymity, as their presumed consent allowed, but instead a status of pseudo-anonymity. Through this process of pseudo-anonymisationa patient’s data, and in a sense, their very right to privacy, is placed in the hands of another (potentially untrustworthy) party.

Thus, the contention between sharing medical data for the benefit of the ‘greater good’, and the privacy of the individual, is an ethical concern that is worth questioning – not only for yourself, but for society as a whole. You can change your Instagram account data to ‘private’ – but with your medical records, it may not be that easy.

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