危害、炒作与证据：ELSI 研究与政策指导。
Harm, hype and evidence: ELSI research and policy guidance.
机构信息
Health Law and Science Policy Group, University of Alberta, Edmonton, Alberta Canada, T6G 2H5.
Institute for Genome Sciences and Policy, North Building, Duke University, USA Drive, Box 90141 Durham, NC 27708, USA.
出版信息
Genome Med. 2013 Mar 26;5(3):21. doi: 10.1186/gm425. eCollection 2013.
Abstract
There has been much investment in research on the ethical, legal and social issues (ELSI) associated with genetic and genomic research. This research should inform the development of the relevant policy. So far, much of the relevant policy - such as in the areas of patents, genetic testing and genetic discrimination - seems to be informed more by speculation of harm and anecdote than by available evidence. Although a quest for evidence cannot always be allowed to delay policy choice, it seems axiomatic to us that policy options are improved by the incorporation of evidence.
摘要
在与遗传和基因组研究相关的伦理、法律和社会问题（ELSI）方面，已经进行了大量的研究投资。这项研究应该为相关政策的制定提供信息。到目前为止，许多相关政策——如在专利、基因检测和基因歧视等领域——似乎更多地是基于对伤害和传闻的猜测，而不是现有证据。虽然寻求证据不能总是被用来推迟政策选择，但我们认为，将证据纳入政策选择可以提高政策选择的质量，这似乎是不言而喻的。
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