Burke Wylie, Appelbaum Paul, Dame Lauren, Marshall Patricia, Press Nancy, Pyeritz Reed, Sharp Richard, Juengst Eric
University of Washington, Seattle, Washington, USA.
Columbia University, New York, New York, USA.
Genet Med. 2015 Jan;17(1):12-20. doi: 10.1038/gim.2014.74. Epub 2014 Jun 19.
Federally funded research on the ethical, legal, and social implications (ELSI) of genomics includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genetics; how foundational research in bioethics, law, and the social sciences might inform those policies; and the potential professional issues that this translational imperative raises for ELSI investigators. We review these questions in light of experiences from a consortium of federally funded Centers of Excellence in ELSI Research, and offer a set of policy recommendations for program design and evaluation of ELSI research. We conclude that it would be a mistake to require that ELSI research programs demonstrate a direct impact on science or health policy; however, ELSI researchers can take steps to increase the relevance of their work to policy makers. Similarly, funders of ELSI research who are concerned with facilitating policy development can help by building cross-disciplinary translational research capacities, and universities can take steps to make policy-relevant research more rewarding for scholars in the humanities, social sciences, and law.
由联邦政府资助的关于基因组学的伦理、法律和社会影响（ELSI）的研究包括一项计划性要求，即考虑与政策相关的问题，并在有助于为决策过程提供信息的场所交流研究结果。为实现这一目标，研究人员必须考虑与人类遗传学相关的一系列政策；生物伦理学、法学和社会科学的基础研究如何为这些政策提供信息；以及这种转化要求给ELSI研究人员带来的潜在专业问题。我们根据联邦政府资助的ELSI研究卓越中心联盟的经验来审视这些问题，并为ELSI研究的项目设计和评估提供一系列政策建议。我们得出结论，要求ELSI研究项目对科学或健康政策产生直接影响是错误的；然而，ELSI研究人员可以采取措施提高其工作与政策制定者的相关性。同样，关注促进政策制定的ELSI研究资助者可以通过建立跨学科转化研究能力来提供帮助，大学可以采取措施使与政策相关的研究对人文、社会科学和法学领域的学者更具吸引力。
