Indiana University Center for Bioethics, 410 W 10th Street, Suite 3100, Indianapolis, IN 46202, USA.
Hum Genet. 2011 Sep;130(3):451-63. doi: 10.1007/s00439-011-1061-2. Epub 2011 Jul 15.
Ethical principles guiding public health and genomic medicine are often at odds: whereas public health practice adopts collectivist principles that emphasize population-based benefits, recent advances in genomic and personalized medicine are grounded in an individualist ethic that privileges informed consent, and the balancing of individual risk and benefit. Indeed, the attraction of personalized medicine is the promise it holds out to help individuals get the "right medicine for the right problem at the right time." Research biobanks are an effective tool in the genomic medicine toolbox. Biobanking in public health presents a unique case study to unpack some of these issues in more detail. For example, there is a long history of using banked tissue obtained under clinical diagnostic conditions for later public health uses. But despite the collectivist approach of public health, the principles applied to the ethical challenges of biobanking (e.g. informed consent, autonomy, privacy) remain individualist. We demonstrate the value of using human rights as a public health ethics framework to address this tension in biobanking by applying it to two illustrative cases.
公共卫生实践采用集体主义原则,强调基于人群的利益,而最近基因组学和个性化医学的进展则基于个人主义伦理,强调知情同意和个人风险与利益的平衡。事实上,个性化医学的吸引力在于它承诺帮助个人在“正确的时间为正确的问题获得正确的药物”。研究生物库是基因组医学工具包中的有效工具。公共卫生中的生物库为更详细地阐明这些问题提供了一个独特的案例研究。例如,长期以来,人们一直使用在临床诊断条件下获得的储存组织,以便以后用于公共卫生用途。但是,尽管公共卫生采取了集体主义方法,但应用于生物库伦理挑战的原则(例如知情同意、自主权、隐私)仍然是个人主义的。我们通过将人权应用于两个说明性案例,展示了将人权作为公共卫生伦理框架来解决生物库中这种紧张关系的价值。