domingo, 29 de junio de 2014

The translational potential of research on the ethical, legal, and social implications of genomics : Genetics in Medicine : Nature Publishing Group

The translational potential of research on the ethical, legal, and social implications of genomics : Genetics in Medicine : Nature Publishing Group



Genomics & Health Impact Update

Ethical, Legal & Social Issues & Translational Research in Genomics

Researchers, Physician, Communities, Patient and ELSI
What's the translational potential of ELSI research in genomics?External Web Site Icon
Burke W, et al. Genetics in Medicine, June 19, 2014
Reflecting on more than two decades of the ELSI "experiment",External Web Site Icon by Steven Benowitz, National Human Genome Research Institute, June 2014
The Ethical, Legal and Social Implications (ELSI) Research ProgramExternal Web Site Icon at the National Human Genome Research Institute 
CDC paper: Translational research in genomics beyond bench to bedside- a public health perspectiveExternal Web Site Icon 
Khoury MJ, et al. Am J Public Health. 2012 January; 102(1): 34–37.  


The translational potential of research on the ethical, legal, and social implications of genomics

Genetics in Medicine
 
(2014)
 
doi:10.1038/gim.2014.74
Received
 
Accepted
 
Published online 

Abstract

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.
Genet Med advance online publication 19 June 2014
View full text

Keywords:

 
ethical; legal; social; genomic policy

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