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Ethical, Legal and Social Implications Research Program

The ELSI Research Program fosters basic and applied research on the ethical, legal and social implications of genetic and genomic research for individuals, families and communities.

The 6th Annual ELSI Congress

June 10-12, 2024

The 6th Ethical, Legal and Social Implications (ELSI) Congress invites all with an interest in ethics and genetics to share the latest ELSI research. This year's theme is “Reimagining the Benefits of Genomic Sciences"

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ELSIcon

Research Areas

Since its creation in 1990, the ELSI Research Program has supported a large body of research on a wide range of topics. ELSI research addresses the new and sometimes unexpected ways that genomics interacts with many aspects of daily life, from how healthcare is designed and delivered to the ways individuals, families and communities understand such basic concepts as belonging and what it means to be human. Of particular interest are studies that explore these issues with and within communities that have been underrepresented, underserved and/or mistreated in biomedical research and healthcare. To capture this diversity of issues, the ELSI Research Program has identified four broad areas of research:

  • Genomics and Sociocultural Structures and Values
    These projects may explore and elucidate the personal, social and cultural factors that shape the generation, interpretation, understanding and use of genetic and genomic information and associated technologies.
     
  • Genomics at the Institutional and System Level
    These projects may explore the interplay and influences between genetics and genomics and organizations, institutions, governments, systems or other organized stakeholders.
     
  • Genomic Research Design and Implementation
    These projects may investigate the ethical, legal, social and policy issues that arise in connection with the design and conduct of genetic and genomic research.
     
  • Genomic Healthcare
    These projects may examine issues that arise as genetic and genomic research are integrated into clinical medicine and healthcare in a variety of settings.
     

These four research areas are overlapping, and many research projects will likely address issues that cut across areas. A more detailed discussion of each research area and examples of possible research topics are available at ELSI Research Areas.

  • Research Areas

    Since its creation in 1990, the ELSI Research Program has supported a large body of research on a wide range of topics. ELSI research addresses the new and sometimes unexpected ways that genomics interacts with many aspects of daily life, from how healthcare is designed and delivered to the ways individuals, families and communities understand such basic concepts as belonging and what it means to be human. Of particular interest are studies that explore these issues with and within communities that have been underrepresented, underserved and/or mistreated in biomedical research and healthcare. To capture this diversity of issues, the ELSI Research Program has identified four broad areas of research:

    • Genomics and Sociocultural Structures and Values
      These projects may explore and elucidate the personal, social and cultural factors that shape the generation, interpretation, understanding and use of genetic and genomic information and associated technologies.
       
    • Genomics at the Institutional and System Level
      These projects may explore the interplay and influences between genetics and genomics and organizations, institutions, governments, systems or other organized stakeholders.
       
    • Genomic Research Design and Implementation
      These projects may investigate the ethical, legal, social and policy issues that arise in connection with the design and conduct of genetic and genomic research.
       
    • Genomic Healthcare
      These projects may examine issues that arise as genetic and genomic research are integrated into clinical medicine and healthcare in a variety of settings.
       

    These four research areas are overlapping, and many research projects will likely address issues that cut across areas. A more detailed discussion of each research area and examples of possible research topics are available at ELSI Research Areas.

Centers of Excellence in ELSI Research

The Centers of Excellence in ELSI Research 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.

 

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People forming double helix

Reports

Genetic Testing

Genetic Discrimination and Health Insurance

Issues Related to the Conduct of Genetic Research

Underrepresented Minorities

Specific Research Topics

Program Reviews

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.

  • Ethical, Legal and Social Implications (ELSI) (Research R01 Clinical Trial Optional)
    PAR-20-254
    Application Due Dates: October 19 2020, February 17 2021, June 17 2021, October 19 2021, February 17 2022, June 17 2022, October 19 2022, February 17 2023, June 19 2023
    Expiration Date: July 20, 2023

     
  • Ethical, Legal and Social Implications (ELSI) Exploratory/Developmental Research Grant (R21) Clinical Trial Optional)
    PAR-20-255
    Application Due Dates: October 19, 2020, February 17, 2021, June 17, 2021, October 19, 2021, February 17, 2022, June 17, 2022, October 19, 2022, February 17, 2023, June 19, 2023
    Expiration Date: July 20, 2023

     
  • Ethical, Legal and Social Implications (ELSI) Small Research Grant (R03) Clinical Trial Optional)
    PAR-20-257
    Application Due Dates: October 19 2020, February 17 2021, June 17 2021, October 19 2021, February 17 2022, June 17 2022, October 19 2022, February 17 2023, June 19 2023
    Expiration Date: July 20, 2023

     
NIH-wide Bioethical Research Funding Notice
  • Notice of Interest in High Priority Research in Bioethical, Legal, and Societal Implications of Biomedical Research 
    NOT-LM-17-001
ELSI Conference Grants

The NHGRI ELSI Program accepts Conference Grant (R13) applications. For specific instructions for preparing a conference grant application, see:

  • PA-20-207NIH Support for Conferences and Scientific Meetings (Parent R13)
    Application Receipt Dates: Standard Dates Apply 
ELSI Training and Career Development Funding Opportunities

The ELSI program participates in a number of training and career development funding opportunities.

International Bioethics Training

The Fogarty International Center's international bioethics training programs [fic.nih.gov] support education and research training to develop ethics expertise in low- and middle-income countries (LMICs). The programs complement other global health research and research training programs in the mission areas of NIH Institutes and Centers.

  • PAR-19-244International Research Ethics Education and Curriculum Development Award (R25)
    This award, which NIH established in fiscal year 2000, supports curriculum development for master's level cou20rses; courses for skill development, including practicum experiences; and mentoring activities.
     
  • PAR-19-243International Bioethics Research Training Program (D43)
    This new program support LMIC-U.S. collaborative institutional bioethics doctoral and postdoctoral research training programs that incorporate didactic, mentored research and career development components to prepare trainees for positions of scholarship and leadership at health research institutions in LMICs.
Pre- and Post-Doctoral Training Opportunities
  • PA-20-251:  Ruth L. Kirschstein National Research Service Award (NRSA) Individual Predoctoral Fellowship to Promote Diversity in Health-Related Research (Parent F31-Diversity)
    Expiration Date: May 8, 2023
     
  • PA-20-246Ruth L. Kirschstein National Research Service Award (NRSA) Individual Predoctoral Fellowship (Parent F31) 
    Expiration Date: August 9, 2023
     
  • PA-20-242Ruth L. Kirschstein National Research Service Award (NRSA) Individual Postdoctoral Fellowship (Parent F32)
    Expiration Date: May 8, 2023
     
  • PA-18-403Ruth L. Kirschstein National Research Service Award (NRSA) Institutional Research Training Program (Parent T32) 
    Expiration Date: January 8, 2021
Career Development Opportunities 
  • PA-20-176: Mentored Research Scientist Development Award (Parent K01-Independent Clinical Trial Required)
    Expiration Date: May 8, 2023
     
  • PA-20-190: Mentored Research Scientist Research Career Development Award (Parent K01-Independent Clinical Trial Not Allowed)
    Expiration Date: May 8, 2023
     
  • PA-20-202: Mentored Clinical Scientist Development Award (Parent K08-Independent Clinical Trial Required)
    Expiration Date: May 8, 2023
     
  • PA-20-203: Mentored Clinical Scientist Research Career Development Award (Parent K08-Independent Clinical Trial Not Allowed)
    Expiration Date: May 8, 2023
     
  • PA-20-187: NIH Pathway to Independence Award (Parent K99/R00-Independent Clinical Trial Required)
    Expiration Date: May 8, 2023
     
  • PA-20-188: NIH Pathway to Independence Award (Parent K99/R00-Independent Clinical Trial Not Required)
    Expiration Date: May 8, 2023
     
  • PA-21-071Research Supplements to Promote Diversity in Health-Related Research (Admin Supp)
    Expiration Date: May 8, 2023
     
  • PA-18-592Research Supplements to Promote Re-Entry into Biomedical and Behavioral Research Careers (Admin Supp)
    Expiration Date: September 8, 2021 
  • 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.

    • Ethical, Legal and Social Implications (ELSI) (Research R01 Clinical Trial Optional)
      PAR-20-254
      Application Due Dates: October 19 2020, February 17 2021, June 17 2021, October 19 2021, February 17 2022, June 17 2022, October 19 2022, February 17 2023, June 19 2023
      Expiration Date: July 20, 2023

       
    • Ethical, Legal and Social Implications (ELSI) Exploratory/Developmental Research Grant (R21) Clinical Trial Optional)
      PAR-20-255
      Application Due Dates: October 19, 2020, February 17, 2021, June 17, 2021, October 19, 2021, February 17, 2022, June 17, 2022, October 19, 2022, February 17, 2023, June 19, 2023
      Expiration Date: July 20, 2023

       
    • Ethical, Legal and Social Implications (ELSI) Small Research Grant (R03) Clinical Trial Optional)
      PAR-20-257
      Application Due Dates: October 19 2020, February 17 2021, June 17 2021, October 19 2021, February 17 2022, June 17 2022, October 19 2022, February 17 2023, June 19 2023
      Expiration Date: July 20, 2023

       
    NIH-wide Bioethical Research Funding Notice
    • Notice of Interest in High Priority Research in Bioethical, Legal, and Societal Implications of Biomedical Research 
      NOT-LM-17-001
    ELSI Conference Grants

    The NHGRI ELSI Program accepts Conference Grant (R13) applications. For specific instructions for preparing a conference grant application, see:

    • PA-20-207NIH Support for Conferences and Scientific Meetings (Parent R13)
      Application Receipt Dates: Standard Dates Apply 
    ELSI Training and Career Development Funding Opportunities

    The ELSI program participates in a number of training and career development funding opportunities.

    International Bioethics Training

    The Fogarty International Center's international bioethics training programs [fic.nih.gov] support education and research training to develop ethics expertise in low- and middle-income countries (LMICs). The programs complement other global health research and research training programs in the mission areas of NIH Institutes and Centers.

    • PAR-19-244International Research Ethics Education and Curriculum Development Award (R25)
      This award, which NIH established in fiscal year 2000, supports curriculum development for master's level cou20rses; courses for skill development, including practicum experiences; and mentoring activities.
       
    • PAR-19-243International Bioethics Research Training Program (D43)
      This new program support LMIC-U.S. collaborative institutional bioethics doctoral and postdoctoral research training programs that incorporate didactic, mentored research and career development components to prepare trainees for positions of scholarship and leadership at health research institutions in LMICs.
    Pre- and Post-Doctoral Training Opportunities
    • PA-20-251:  Ruth L. Kirschstein National Research Service Award (NRSA) Individual Predoctoral Fellowship to Promote Diversity in Health-Related Research (Parent F31-Diversity)
      Expiration Date: May 8, 2023
       
    • PA-20-246Ruth L. Kirschstein National Research Service Award (NRSA) Individual Predoctoral Fellowship (Parent F31) 
      Expiration Date: August 9, 2023
       
    • PA-20-242Ruth L. Kirschstein National Research Service Award (NRSA) Individual Postdoctoral Fellowship (Parent F32)
      Expiration Date: May 8, 2023
       
    • PA-18-403Ruth L. Kirschstein National Research Service Award (NRSA) Institutional Research Training Program (Parent T32) 
      Expiration Date: January 8, 2021
    Career Development Opportunities 
    • PA-20-176: Mentored Research Scientist Development Award (Parent K01-Independent Clinical Trial Required)
      Expiration Date: May 8, 2023
       
    • PA-20-190: Mentored Research Scientist Research Career Development Award (Parent K01-Independent Clinical Trial Not Allowed)
      Expiration Date: May 8, 2023
       
    • PA-20-202: Mentored Clinical Scientist Development Award (Parent K08-Independent Clinical Trial Required)
      Expiration Date: May 8, 2023
       
    • PA-20-203: Mentored Clinical Scientist Research Career Development Award (Parent K08-Independent Clinical Trial Not Allowed)
      Expiration Date: May 8, 2023
       
    • PA-20-187: NIH Pathway to Independence Award (Parent K99/R00-Independent Clinical Trial Required)
      Expiration Date: May 8, 2023
       
    • PA-20-188: NIH Pathway to Independence Award (Parent K99/R00-Independent Clinical Trial Not Required)
      Expiration Date: May 8, 2023
       
    • PA-21-071Research Supplements to Promote Diversity in Health-Related Research (Admin Supp)
      Expiration Date: May 8, 2023
       
    • PA-18-592Research Supplements to Promote Re-Entry into Biomedical and Behavioral Research Careers (Admin Supp)
      Expiration Date: September 8, 2021 

Program Staff

Dave Kaufman, Ph.D.
Dave Kaufman, Ph.D.
  • Program Director
  • Division of Genomics and Society
Nicole C. Lockhart, Ph.D.
Nicole C. Lockhart, Ph.D.
  • Program Director
  • ELSI Research Branch
Rene Sterling
Rene Sterling, Ph.D., M.H.A.
  • Program Director
  • Division of Genomics and Society
Zo Bly
Zo Bly, B.A.
  • Scientific Program Analyst
  • Division of Genome Sciences
Tasha A. Stewart
Tasha A. Stewart
  • Program Assistant
  • Division of Genomics and Society

Last updated: October 31, 2023