The NHS and Privacy

fstqCoup dur pour le Système de Santé britannique ou NHS qui connaît, à cause de la crise des dépenses publiques mais aussi de problèmes structuraux de gestion, des difficultés de financement. Face à la fermeture d’hôpitaux publics, la remise en question de la qualité des soins et la menace de privatisation partielle du système de santé, le NHS se doit de réagir et de se réorganiser pour survivre ; mais une nouvelle controverse vient noircir le tableau moral et éthique du système : le gouvernement a annoncé la mise en commun dès 2014-2015 des données médicales personnelles des adhérents au NHS dans une Banque de données centralisée destinée à la recherche médicale ainsi qu’à d’autres organisations parallèles. Espoir de progrès scientifique ou violation du secret médical à des fins économiques ?

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What’s going to happen to my personal medical file?

Given the economic crisis the NHS faces today, the British Health system has been looking for some ways to reduce its spending or improve its efficiency. Among the solutions, the system considers the opportunity of creating a global and centralized electronic database to store every single individual’s medical record and to use it as a rich source of information for medical research and other parallel organizations. The Brits tied to the NHS are to be officially informed of the case by mail in an official and very attractive leaflet that reads “better information means better care”, “if you are happy for your information to be shared you do not need to do anything. There is no form to fill in and nothing to sign. And you can change your mind at any time. If you’re unhappy, you have to tell your General Practitioner and ask for a dispensation”.

A new hope for medical research and health improvements!

This reform of the NHS initially aims at finding new effective treatments and prevention schemes using a larger database composed of an extensive quantity of helpful and key medical information for health progress. In addition, this data base will assist pharmaceutical companies in the improvement of drugs and medical treatments and a wider knowledge of their side effects. In fact, the more medical data you have on a person, the easier it is to analyze, identify, prevent and cure the disease.

But what about privacy and the merchandising of confidential medical information?

What is at stake behind this good-willing initiative is the parallel use of these medical data. The major controversy comes from the diverted use of an individual’s medical record which could be sold to private companies or insurance companies for undefined purposes. Although anonymity and “pseudonymised-protection” is reported to be guaranteed by authorities and the NHS itself, data crossing and conflicts of interest lurk among the worries of public opinion. Even though the risk appears low, privacy is threatened and scepticism is justified since this new database could benefit the UK life science industry more than patient care, insurance companies could use this information to index their tariffs, and some patients could be discriminated against for medical reasons. Eventually the debate has remained quite limited on the question and the Brits seem to have their back against the wall in a time when little trust in public institutions remains.

What should we heed about this new turning point in the NHS policy?

Once more British citizens are exposed to the issue of the confrontation of public and private interests. Of course your registration in the new British medical database is not compulsory, you may want to preserve confidentiality but you are largely encouraged to contribute in this “Program of national and public interest” by giving up your privacy. One may wonder where on earth there is a safe and private area left when even the Hippocratic Oath is questioned by public reforms.

Loïck BOINNARD & Léo BROTIN

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