Department of Preventive and Social Medicine, University of Otago, Dunedin, New Zealand.
J Epidemiol Community Health. 2011 Feb;65(2):150-6. doi: 10.1136/jech.2009.097436. Epub 2009 Nov 29.
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.
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.
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.
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.
流行病学家长期以来一直主张获取个人医疗信息，以便为了公众利益进行研究，而立法和伦理准则越来越关注保护个人隐私。公众如何权衡这些公共利益和隐私论点尚不清楚。
举行了公民陪审团，以探讨公众对使用医疗信息进行药物安全上市后监测的看法。一个利益相关者指导小组监督了这一过程，包括为陪审团提出问题以及选择专家证人和陪审员。一位独立的主席和主持人管理为期三天的听证会。
陪审团一致得出结论，应由受公共机构委托的研究人员在遵循现有伦理准则和相关法律的情况下，在未经其同意的情况下使用有关可识别人员的医疗信息来研究药物安全性——提供有关可识别人员的医疗信息。最初对未经明确同意使用信息感到不安的陪审员在获得更多信息并与其他陪审员进行审议后，都感到更加放心。
鉴于适当的隐私保护措施，这一结果表明，在药物安全研究的特定情况下，知情公众不会将个人隐私置于社会利益之上。该示例的特殊性、公共利益和隐私考虑的框架——在科学、法律、伦理、临床和消费者意见的背景下——以及进行审议的机会，可能解释了为什么陪审团的结论与关于医疗信息二次使用的公众意见调查不同。
