ELSI Research Planning and Evaluation Group (ERPEG)

ELSI Research Planning and Evaluation Group (ERPEG)

• Overview
• Mission
• Activities
• Administration and Structure
• Roster of Members

Overview

In April 1996, the National Human Genome Research Institute (NHGRI) and the Department of Energy (DOE) appointed a 12-person committee to perform an evaluation of the ELSI Working Group and its relationship to the other components of the ELSI program. After several months of intensive interviews and deliberations, on December 12, 1996 the Committee issued its final report which contained three recommendations for restructuring the ELSI Working Group. The committee's first recommendation related specifically to the ELSI Research Program:

"The existing [ELSI] Working Group should be restructured and designated the ELSI Research Evaluation Committee, housed within [NHGRI] as an advisory committee to the Director and the Council and within DOE advisory to the HERAC [Health and Environmental Research Advisory Committee] and the Genome Project."

At its May 1997 meeting, the National Advisory Council for Human Genome Research (NACHGR) endorsed this recommendation, and the ELSI Research, Planning, and Evaluation Group (ERPEG) was established in July of that year.

Mission

The mission of the ERPEG is to provide NHGRI and OHER/DOE with expert guidance on matters relating to their extramural ELSI research portfolios. This mission is understood to include long range planning and evaluation activities.

Specifically, the ERPEG provides expertise on existing and new research methods or approaches for studying ELSI issues; suggests new topics, issues and priorities; provides input on the use of funding mechanisms; and proposes methods for obtaining input from the public, scientific and other communities about current and future research priorities, (including ways of disseminating information back to these communities).

ERPEG Activities

• Strategic Planning for the ELSI Research Programs. This involves:
  • Becoming familiar with previously and currently funded grants in the NHGRI and OHER/DOE ELSI research portfolios, program announcements, RFAs and the mechanisms used to fund these projects.
  • Obtaining input from the public, health professionals, the genomic and ELSI communities, and others on future directions for the ELSI Research Program.
  • Preparing the ELSI component of the NHGRI and OHER/DOE five year plan that is expected to be published in the peer reviewed literature in October 1998.
  • Developing a more comprehensive long-range planning document that expands on the goals of the ELSI Research Program and focuses on implementation strategies.
    
    
• ELSI Research Portfolio Evaluation. ERPEG is responsible for assessing how and to what extent: (1) the current ELSI research, training, and education activities fit with the goals of the Human Genome Project (HGP) in general, and the ELSI Research Programs in particular; and (2) the programs are positioned to anticipate and respond to new issues and developments that arise as a result of the HGP. The evaluation function involves:
  • Surveying the NHGRI and OHER/DOE ELSI research and education grants portfolios with the goal of completing an in-depth analysis of each priority research area.
  • Providing periodic reports on the progress of the evaluation to NACHGR and OHER/DOE.
  • Preparing a document detailing the findings of the portfolio review/evaluation.

Administration and Structure

ERPEG, which has been established as a working group of the NACHGR and HERAC/DOE, will function until January 2000, at which time the NACHGR and HERAC will review its goals and accomplishments. ERPEG will begin its evaluation in 1997 allowing it to engage in the strategic planning process that will result in the development of the ELSI component of the NHGRI/DOE five year plan in 1997 and 1998. Once this 5-year plan is completed, ERPEG will continue its analysis of the ELSI grants portfolio and prepare a detailed Planning and Evaluation Report. These written reports will be presented to the NACHGR and HERAC and will also be made available on the NHGRI and OHER/DOE home pages and disseminated through other media.

The ERPEG roster includes nine individuals who have been selected for their expertise, experience and/or accomplishments in areas relevant to the ELSI Research Program. Dr. LeRoy Walters, Director of the Kennedy Institute of Ethics, Georgetown University, serves as the ERPEG chair.

Roster of Members

Leroy B. Walters, Ph.D. (Chair)
Director
Kennedy Institute of Ethics
Georgetown University
Washington, DC

Ellen Wright Clayton, M.D., J.D.
Associate Professor of Pediatrics and Law
Vanderbilt University
Nashville, TN

Nancy L. Fisher, M.D., M.P.H.
Medical Director
Department of Social and Health Services
Medical Assistance Administration
Olympia, WA

Caryn E. Lerman, Ph.D.
Associate Professor of Medicine
Lombardi Cancer Center
Georgetown University, Medical Center
Washington, DC

Joseph D. McInerny, M.A., M.S.
Director
Biological Sciences Curriculum Study
Colorado Springs, CO

William Nebo, M.Div.
Senior Pastor
First Presbyterian Church
Livermore, CA

Nancy Press, Ph.D.
Adjunct Associate Professor
Department of Public Health and Preventive Medicine
Oregon Health Sciences University
Portland, OR

David Valle, M.D.
Professor of Pediatrics
John Hopkins University
School of Medicine
Baltimore, MD

NHGRI/DOE Staff

Elizabeth J. Thomson, R.N., M.S.
Director
Ethical, Legal, and Social Implications Research Program
National Human Genome Research Institute
Bethesda, MD

Joy T. Boyer
Program Analyst
Ethical, Legal, and Social Implications Research Program
National Human Genome Research Institute
Bethesda, MD

Daniel Drell, Ph.D.
ELSI Program Manager
Department of Energy
Germantown, MD

Susan L. Rose, Ph.D.
Human Subjects Research Program Manager
Department of Energy
Germantown, MD.