Department of Social Medicine, School of Medicine, Center for Genomics and Society, University of North Carolina-Chapel Hill, Chapel Hill, NC, USA.
J Law Med Ethics. 2012 Winter;40(4):1008-24. doi: 10.1111/j.1748-720X.2012.00728.x.
Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help guide biomedicine's future. In this essay, we illustrate this thesis through an analytic summary of the research presented at the 2011 ELSI Congress, an international meeting of genomics and society researchers. We identify three pivotal factors currently shaping genomic research, its clinical translation, and its societal implications: (1) the increasingly blurred boundary between research and treatment; (2) uncertainty--that is, the indefinite, indeterminate, and incomplete nature of much genomic information and the challenges that arise from making meaning and use of it; and (3) the role of negotiations between multiple scientific and non-scientific stakeholders in setting the priorities for and direction of biomedical research, as it is increasingly conducted "in the public square."
人类基因组学的伦理、法律和社会影响（ELSI）研究一直关注基因组科学在转化过程中产生的研究伦理问题。鉴于这些问题在当今对整个研究伦理状况的争论中占有突出地位，这些研究非常有能力为更广泛的研究伦理界的审议提供重要数据、背景考虑因素和政策论点，并最终制定出有助于指导生物医学未来的研究伦理。在本文中，我们通过对 2011 年 ELSI 大会上提交的研究进行分析性总结来说明这一论点，该大会是一次基因组学和社会研究人员的国际会议。我们确定了目前正在塑造基因组研究、其临床转化及其社会影响的三个关键因素：（1）研究和治疗之间日益模糊的界限；（2）不确定性，即许多基因组信息的不确定、不确定和不完整的性质，以及从其意义和使用中产生的挑战；（3）在确定生物医学研究的优先事项和方向方面，多个科学和非科学利益相关者之间的谈判的作用，因为它越来越多地在“公共场所”进行。
