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Public good, personal privacy: a citizens' deliberation about using medical information for pharmacoepidemiological research
  1. Lianne Parkin,
  2. Charlotte Paul
  1. Department of Preventive and Social Medicine, University of Otago, Dunedin, New Zealand
  1. Correspondence to Dr Lianne Parkin, Department of Preventive and Social Medicine, University of Otago, PO Box 913, Dunedin 9054, New Zealand; lianne.parkin{at}otago.ac.nz

Abstract

Background Epidemiologists have long argued for access to personal medical information in order to undertake research in the public interest, while legislation and ethical guidelines have increasingly focused on protecting the privacy of individuals. How the public weighs up these public interest and privacy arguments is unclear.

Methods A citizens' jury was held to explore public views about the use of medical information for the post-marketing surveillance of medicine safety. A steering group of stakeholders oversaw the process, including the framing of the question for the jury and the selection of expert witnesses and jurors. An independent chair and facilitator managed the 3-day hearing.

Results The jury unanimously concluded that researchers contracted by a public body should be permitted to use medical information about identifiable people, without their consent, to study the safety of medicines—providing existing ethical guidelines and relevant laws are followed. Jurors who were initially uncomfortable about the use of information without their express consent all became more comfortable after obtaining further information and deliberating with other jurors.

Conclusions This outcome suggests that an informed public does not place personal privacy above societal benefits in the particular circumstance of medicines' safety research, given appropriate privacy safeguards. The specificity of the example, the framing of the public interest and privacy considerations—in the context of scientific, legal, ethical, clinical and consumer input—and the opportunity to deliberate, may explain why the conclusions of the jury differ from public opinion surveys about secondary uses of medical information.

  • Citizens' deliberation
  • drug safety
  • epidemiology
  • ethics in epidemiology
  • privacy
  • research ethics

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Footnotes

  • Funding This work was supported by a Joint Initiative of the Health Research Council of New Zealand and the New Zealand Ministry of Health. The funders had no role in the study design, in the collection, analysis and interpretation of data, in the writing of the report or in the decision to submit the paper for publication.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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