Ethical, Legal and Social Implications Research Program

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.

News

• NIH funds new studies on ethical, legal and social impact of genomic information
  May 17, 2016

Events

• ELSI Research and the New NIH Data Management and Sharing (DMS) Policy Webinar
  May 23, 2023
   
• ELSI Strategic Planning Webinar: Genomic Decision-Making: Power and Identity
  July 9, 2019
   
• ELSI Strategic Planning Webinar: Appropriate Use and Implementation of Genomics in Diverse Communities
  June 28, 2019
   
• ELSI Webinars March 13 and March 26, 2018
   
• The 4th ELSI Congress: Genomics and Society: Expanding the ELSI Universe
  June 5-7, 2017
   
• Trans-NIH Workshop to Explore the Ethical, Legal and Social Implications (ELSI) of Citizen Science
  January 13-14, 2015

Genetic Testing

• Follow-up Workshop to the Consensus Development Conference on Genetic Testing for CF (10/97)
• Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing (09/97)
• Genetic Testing for Cystic Fibrosis Consensus Development Conference Statement (04/97)
• NIH Workshop Statement - Reproductive Genetic Testing: Impact on Women (11/91)
• NIH Workshop Statement - Population Screening for the CF Gene (07/90)

Genetic Discrimination and Health Insurance

• Genetic Information and the Workplace (01/98)
• NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and the Workplace(10/96)
• NIH-DOE ELSI Working Group and National Action Plan on Breast Cancer Workshop on Genetic Discrimination and Health Insurance (07/95)
• Insurance Task Force Report--Executive Summary (05/93)
• Genetic Information and Health Insurance - Report of the Task Force on Genetic Information and Insurance (05/93)

Issues Related to the Conduct of Genetic Research

• Report of the First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research (09/00)
• NCHGR/CDC Workshop on Informed Consent for Genetics Research Using Stored Tissue Samples (07/94)
• Protecting Human Research Subjects: 1993 OPRR IRB Guidebook Chapter on Human Genetic Research (1993)
• Report of the Working Group on Ethical, Legal, and Social Issues Related to Mapping and Sequencing the Human Genome (04/90)

Underrepresented Minorities

• Summary of Grantees' Workshop on Strategies for Increasing the Number of Underrepresented Minorities Participating in Genomics and ELSI Research (11/01)
• Plan for Increasing the Number of Underrepresented Minorities Trained in Genomics and ELSI Research (2001)

Specific Research Topics

• Studying interactions Among Social, Behavioral & Genetic Factors in Health (10/01)
• Cancer Genetic Studies Consortium (1998)
• Hereditary Hemochromatosis: Gene Discovery and Policy Meeting (03/97)

Program Reviews

• Report to the National Advisory Council for Human Genome Research (02/05)
• The Role of ELSI Research & Policy Activities in the NHGRI Plan (10/02)
• A Review and Analysis of the ELSI Research Programs at NIH and DOE (ERPEG Final Report) (02/00)
• Report of the Joint NIH/DOE Committee to Evaluate the Ethical, Legal and Social Implications Program of the Human Genome Project (12/96)
• Review of the ELSI Program: 1990-1995 (03/96)

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-20-207: NIH 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-19-244: International 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-19-243: International 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-20-246: Ruth L. Kirschstein National Research Service Award (NRSA) Individual Predoctoral Fellowship (Parent F31) 
  Expiration Date: August 9, 2023
   
• PA-20-242: Ruth L. Kirschstein National Research Service Award (NRSA) Individual Postdoctoral Fellowship (Parent F32)
  Expiration Date: May 8, 2023
   
• PA-18-403: Ruth 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-21-071: Research Supplements to Promote Diversity in Health-Related Research (Admin Supp)
  Expiration Date: May 8, 2023
   
• PA-18-592: Research Supplements to Promote Re-Entry into Biomedical and Behavioral Research Careers (Admin Supp)
  Expiration Date: September 8, 2021