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O2-5.6 Public good, personal privacy: a citizens' deliberation about using medical information for pharmacoepidemiological research
  1. L Parkin,
  2. C Paul
  1. Department of Preventive and Social Medicine, University of Otago, Dunedin, New Zealand

Abstract

Introduction Epidemiologists have long argued for access to personal health data to monitor, investigate, and improve the public health. At the same time, legislation and ethical guidelines have increasingly been framed in terms of protecting the privacy rights of individuals, rather than in terms of the public interest in the results of research. A 2002 Nuffield Trust report on the secondary use of medical data recommended a dialogue with the public about the arguments for use without consent and the appropriate safeguards. In 2006, the UK Academy of Medical Sciences noted that evidence regarding public attitudes towards the use of medical information in research was still largely absent, and the investigations that had been undertaken asked undifferentiated questions which were not adequate to assess attitudes towards different types of research conducted by different groups for different purposes.

Methods We took up the challenge of having a dialogue with the New Zealand public about the balance between the public interest and privacy arguments, using a citizens' jury approach. A 3-day hearing was held to explore public views about the use of medical information for a specific purpose—researching the safety of medicines.

Results The jury unanimously concluded that publicly-funded researchers should be permitted to use medical information about identifiable people, without their consent, for the above purpose—providing existing ethical guidelines and relevant laws are followed.

Conclusions This outcome suggests that an informed public does not place personal privacy above societal benefits in the particular circumstance of medicines' safety research.

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