lunes, 23 de junio de 2014

ELSI Research Program

ELSI Research Program

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 Ethical, Legal and Social Implications (ELSI) Research Program


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ELSI Research Program Overview

The National Human Genome Research Institute's (NHGRI) Ethical, Legal and Social Implications (ELSI) Research Program was established in 1990 as an integral part of the Human Genome Project (HGP) to foster basic and applied research on the ethical, legal and social implications of genetic and genomic research for individuals, families and communities. The ELSI Research Program funds and manages studies, and supports workshops, research consortia and policy conferences related to these topics.

ELSI Research Priorities

On February 10, 2011, Nature magazine published NHGRI's strategic plan for the future of human genome research, called Charting a course for genomic medicine from base pairs to bedside PDF file. This plan includes a section on Genomics and Society that outlines four areas that will need to be addressed as genomic science and medicine move forward. Based on these areas, the NHGRI has developed the following broad research priorities.
  • Genomic Research. The issues that arise in the design and conduct of genomic research, particularly as it increasingly involves the production, analysis and broad sharing of individual genomic information that is frequently coupled with detailed health information.
  • Genomic Health Care. How rapid advances in genomic technologies and the availability of increasing amounts of genomic information influence how health care is provided and how it affects the health of individuals, families and communities.
  • Broader Societal Issues. The normative underpinnings of beliefs, practices and policies regarding genomic information and technologies, as well as the implications of genomics for how we conceptualize and understand such issues as health, disease, and individual responsibility.
  • Legal, Regulatory and Public Policy Issues. The effects of existing genomic research, health and public policies and regulations and the development of new policies and regulatory approaches.
A more detailed discussion of each of these areas and a list of examples of possible research topics is available at ELSI Research Priorities and Possible Research Topics.

ELSI Research Funding Opportunities

ELSI Research Program Announcements (PA)
The NHGRI, along with several other National Institutes of Health (NIH) institutes, has released revised general program announcements to solicit research projects that anticipate, analyze, and address the ethical, legal, and social implications of the discovery of new genetic technologies and the availability and use of genetic information resulting from human genetics and genomic research.
  • PA-11-250 [grants.nih.gov] ELSI Regular Research Grants (R01)
    These multi-disciplinary regular research applications may request up to $500,000 in direct costs per year (permission must be obtained to submit an application exceeding $500,000 in direct costs per year). Applicants may request up to five years of funding, however, given the rapid changes in the use and understanding of genomic information and technologies, grants are generally funded for no more than three years. Application Receipt Date: Standard dates apply.
     
  • PA-11-251 [grants.nih.gov] ELSI Exploratory/Developmental Research Grants (R21)
    This announcement encourages studies that break new ground or extend previous discoveries toward new directions or applications. Of particular interest are studies that explore the implications of new or emerging genomic technologies or novel uses of genomic information. These applications may request no more than $275,000 in direct costs for up to two years, with no more than $200,000 in direct costs in a single year.Application Receipt Date: Standard dates apply.
     
  • PA-11-249 [grants.nih.gov] ELSI Small Research Grant (R03)
    This announcement encourages small, self-contained ELSI research projects. Of particular interest are studies that propose focused legal, economic, philosophical or historical analyses of new or emerging issues. These applications may request no more than $50,000 in direct costs per year for up to two years.
    Application Receipt Date: Standard dates apply.
     
NIH-Wide Ethical Issues in Human Subjects Research Program Announcements
The NHGRI participates in the NIH-wide program announcments on human subjects research issues.
  • PA-11-180 [grants.nih.gov]: Research on Ethical Issues in Biomedical, Social and Behavioral Research (R01)
     
  • PA-11-181 [grants.nih.gov]: Research on Ethical Issues in Biomedical, Social, and Behavioral Research (R03)Application Receipt Dates: See program announcement
     
  • PA-11-182 [grants.nih.gov]: Research on Ethical Issues in Biomedical, Social, and Behavioral Research (R21)Application Receipt Dates: See program announcement
Other Research Funding Opportunities
The ELSI program also participates in a number of related research grant opportunities, and time limited requests for applications.
  • RFA-OD-14-002 [grants.nih.gov]: Empirical Research on Ethical Issues Related to Central IRBs and Consent for Research Using Clinical Records and Data (R01) New
     
  • RFA-CA-10-017 [grants.nih.gov]: Scientific Meetings for Creating Interdisciplinary Research Teams in Basic Behavioral and Social Science Research (R13)
ELSI Conference Grants
The NHGRI ELSI Program accepts Conference Grant (R13) applications. For specific instructions for preparing a conference grant application, see:
ELSI Training and Career Development Funding Opportunities
The ELSI program participates in a number of training and career development funding opportunities.
Pre- and Post-Doctoral Training Opportunities
  • PA-09-209 [grants1.nih.gov]: Ruth L. Kirschstein National Research Service Awards for Individual Predoctoral Fellowships to Promote Diversity in Health-Related Research (F31)
    Expiration Date: September 8, 2012
     
  • PA-09-210 [grants.nih.gov]: Ruth L. Kirschstein National Research Service Awards (NRSA) for Individual Postdoctoral Fellows (F32)
    Expiration Date: September 8, 2012
     
  • PA-09-211 [grants.nih.gov]: Ruth L. Kirschstein National Research Service Awards (NRSA) for Individual Senior Fellows (F33) 
    Expiration Date: September 8, 2012
Career Development Opportunities
  • PA-14-044 [grants.nih.gov]: Mentored Research Scientist Development Award (Parent K01) New
    Expiration Date: January 8, 2017 
     
    • NOT-HG-14-018 [grants.nih.gov]: Notice of NHGRI Participation in PA-14-044 "Mentored Research Scientist Development Award (Parent K01)"New
       
  • PA-11-197 [grants.nih.gov]: NIH Pathway to Independence (PI) Award (K99/R00)
    Expiration Date: September 8, 2014
  • PA-12-149 [grants.nih.gov]: Research Supplements to Promote Diversity in Health-Related Research (Admin Supp)
    Expiration Date: September 30, 2015 
     
  • PA-12-150 [grants.nih.gov]. Research Supplements to Promote Re-Entry into Biomedical and Behavioral Research Careers (Admin Supp)
    Expiration Date: September 30, 2015
     

Centers of Excellence in ELSI Research

In the Fall of 2003, the NHGRI in collaboration with U.S. Department of Energy (DOE) and the National Institute of Child Health and Human Development (NICHD) launched a new initiative to create interdisciplinary Centers of Excellence in ELSI Research (CEER). The CEERs are designed to bring investigators from multiple disciplines together to work in innovative ways to address important new, or particularly persistent, ethical, legal, and social issues related to advances in genetics and genomics. In addition, the centers will support the growth of the next generation of researchers on the ethical, legal and social implications of genomic research. Special efforts will be made to recruit potential researchers from under-represented groups.
New CEERS Request for Applications
The National Human Genome Research Institute (NHGRI) is soliciting grant applications for the support of Specialized (P50) and Exploratory (P20) Centers of Excellence in ELSI Research (CEERs).
  • RFA-HG-12-005 [grants.nih.gov]: Specialized Centers of Excellence in ELSI Research (CEER) (P50)
    Application Due Date: July 19, 2012
  • RFA-HG-12-012Exploratory Centers of Excellence in ELSI Research (CEER) (P20
    Application Due Date: July 19, 2012
For more information about the CEER's program, see: Centers of Excellence in ELSI Research (CEER).
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ELSI Research Program Staff

Genomic Research and Research Policy
Jean McEwen, J.D., Ph.D.
E-mail: mcewenj@mail.nih.gov
Broader Societal Issues and Social Policy
Joy Boyer
E-mail: boyerj@exchange.nih.gov
Genomic Healthcare and Policy
Nicole Lockhart, Ph.D.
E-mail: lockhani@mail.nih.gov
Address
The Ethical, Legal and Social Implications Research Program
National Human Genome Research Institute
National Institutes of Health
5635 Fishers Lane
Suite 4076, MSC 9305
Bethesda, MD 20892-9305
Phone: (301) 402-4997
Fax: (301) 402-1950
E-mail: elsi@nhgri.nih.gov

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