Burgess Michael, O'Doherty Kieran, Secko David
W. Maurice Young Centre for Applied Ethics and Department of Medical Genetics, University of British Columbia, 227-6356 Agricultural Road, Vancouver, British Columbia, V6T 1Z2, Canada.
W. Maurice Young Centre for Applied Ethics, University of British Columbia, 227-6356 Agricultural Road, Vancouver, British Columbia, V6T 1Z2, Canada.
Per Med. 2008 May;5(3):285-296. doi: 10.2217/17410541.5.3.285.
In this article, we examine the role of deliberative democracy theory and practice as a means to enhance policy approaches to ethical and social issues related to biobanks. Biobanks are seen as a vital component in the rapid trend towards personalized medicine, which, while alluring, also face key issues relating to genetic discrimination, privacy, informed consent and a concern regarding how to develop and maintain the trust of citizens. We describe the case of a deliberative public engagement in which a diverse group of citizens deliberated on the appropriate values that should guide biobanking in British Columbia, Canada. We argue that the use of such methods is a necessity if we are to meaningfully consider diverse 'public interests' during the development of biobanks and thereby personalized medicine.
在本文中，我们探讨协商民主理论与实践作为一种手段的作用，以加强针对与生物样本库相关的伦理和社会问题的政策方法。生物样本库被视为个性化医疗快速发展趋势中的一个重要组成部分，这一趋势虽颇具吸引力，但也面临与基因歧视、隐私、知情同意以及如何建立和维持公民信任相关的关键问题。我们描述了一次协商式公众参与的案例，在该案例中，一群来自不同背景的公民就应指导加拿大不列颠哥伦比亚省生物样本库建设的适当价值观进行了讨论。我们认为，如果我们要在生物样本库以及由此而来的个性化医疗发展过程中有意义地考虑多元“公共利益”，那么使用此类方法是必要的。
