Education And Debate

The ethics of data utilisation: a comparison between epidemiology and journalism

BMJ 1994; 308 doi: (Published 19 February 1994) Cite this as: BMJ 1994;308:522
  1. C-G Westrin,
  2. T Nilstun
  1. Department of Social Medicine, Akademiska Sjukhuset, S-751 85 Uppsala, Sweden
  2. Department of Medican Ethics, Lund University, S-233 62 lund, Sweden.
  • Accepted 16 December 1993

Legal controls over data collection in European countries have badly affected the work of epidemiologists. By contrast, journalists have been allowed far greater freedoms. The aims and tasks of both professions are in line with accepted values in our society - especially those of inquiry and the benefits of an open society. Society seems willing to accept that, in the interests of wider public good, journalism may sometimes invade individuals' privacy and do them harm, but it is not prepared to offer epidemiology an equal measure of tolerance.

Laws covering procedures of data collection have adversely affected the prospects for epidemiology, especially in countries with previously favourable conditions for epidemiological research, such as Sweden. Far reaching legal demands have, for example, led to the closing down of the German Mannheim register1 and the oldest continuously running psychiatric register in the world, the Norwegian register of psychosis.2

Far greater damage is likely if a recent proposal by the European Commission is implemented. Its key paragraph states that “member states shall prohibit the automatic processing of sensitive data - for example, regarding health - without the expressed and written consent freely given of the data subjects.” This proposal has been described by E G Knox as “a whiff of legal pedantry as deadly as the hazards that epidemiologists will no longer be able to investigate.”3

The restrictions introduced by legislators reflect their desire to give priority to individual consent at the expense of benefits to society. The purpose of this paper is to question this development by comparing the rules for epidemiology with the corresponding rules for data protection in journalism.

Aims and tasks

Epidemiologists and journalists have much in common. Both are expected to meet the public's need for knowledge and to provide information that will help individual and community decisions. …

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