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U.S. Department of Energy Human Genome Program 
Projects in Ethical, Legal, and Social Issues

published October 1999

Foreword 1999 Projects Related Web Sites Completed ProjectsCompleted Workshops Retrospective

Completed DOE ELSI Projects

  • Assistance for Ethical, Legal, and Social Issues Program
    Michael Yesley, Los Alamos National Laboratory
  • Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders
    Ruth Bulger, National Academy of Sciences
  • Funding of Young Investigators in the Biological and Biomedical Sciences
    Eric Fischer, National Academy of Sciences
  • Genetic Data and Privacy: A Search for Model Legislation
    Philip R. Reilly, Shriver Center
  • Committee on Biotechnology
    Oskar Zaborsky, National Academy of Sciences
  • Lawful Uses of Knowledge from the Human Genome Project
    Frank Grad, Columbia University
  • Studies of Genetic Discrimination
    Marvin Natowicz, Shriver Center
  • Guidelines for Protecting Privacy of Information Stored in Genetic Data Banks
    George J. Annas, Boston University School of Public Health
  • Impact of Human Genome Initiative-Derived Technology on Genetic Testing, Screening, and Counseling: Cultural, Ethical, and Legal Issues
    Ralph Trottier, Morehouse School of Medicine
  • Pathways to Genetic Screening: Patient Knowledges-Patient Practices
    Troy Duster, University of California, Berkeley
  • Human Genetic Diversity
    Mark Weiss, National Science Foundation
  • DNA Banking and DNA Databanking: Ethical and Public Policy Issues
    Philip Reilly, Shriver Center
  • Social Science Concepts and Studies of Privacy: A Comprehensive Inventory and Analysis
    Alan F. Westin, Center for Social and Legal Research
  • Pilot Senior Research Fellowship Program: Bioethical Issues in Molecular Genetics
    Declan Murphy and Claudette Cyr Friedman, Library of Congress
  • Privacy, Confidentiality, and New Genetic Technology
    Mark A. Rothstein, University of Houston
  • Collaboration Among the Health Effects, Life Sciences, and Energy Biosciences Research Programs
    Paul Gilman, National Academy of Sciences
  • Series of Congressional Seminars on the Human Genome Project
    Mark Frankel, American Association for the Advancement of Science
  • Measuring the Effects of a Unique Law Limiting Employee Medical Examinations to Job-Related Matters
    Mark A. Rothstein, University of Houston
  • Bioavailability Policy Project
    Don Ritter, National Environmental Policy Institute
  • Intellectual Property Issues in Genomics
    Rebecca Eisenberg, University of Michigan Law School

Educational Radio and TV Programs, Museum Displays

  • The Human Genome: Science and the Social Consequences: Interactive Exhibits and Programs on Genetics and the Human Genome
    Charles Carlson, The Exploratorium
  • Mechanical Interactive Exhibits on Biotechnology
    Elizabeth Sharpe, The Smithsonian
  • The Secret of Life
    Paula Apsell, WGBH Educational Foundation
  • Medicine at the Crossroads
    Hyman H. Field, National Science Foundation
  • A Question of Genes: Inherited Risks
    Graham Chedd and Noel Schwerin, Oregon Public Broadcasting
  • Genome Radio Project: The DNA Files
    Barinetta Scott, Soundvision Productions

Curricula and Some Representative Training Workshops

  • The Human Genome Project: Information Management, Access, and Regulation Educational Materials for High School Biology
    Joseph D. McInerney, Biological Sciences Curriculum Study
  • Mapping and Sequencing the Human Genome: Science, Ethics, and Public Policy Development and Distribution of Educational Materials for Use in High School Biology Classes
    Joseph McInerney, Biological Sciences Curriculum Study
  • Stanford Human Genome Education Program
    Lane Conn and Richard Myers, Stanford University
  • The Human Genome Project and Mental Retardation: An Educational Program
    Sharon Davis, The Arc of the United States
  • A Hispanic Educational Program for Scientific, Ethical, Legal, and Social Aspects of the Human Genome Project
    Margaret C. Jefferson, California State University
  • Genes, Environment, and Human Behavior: Development of Educational Materials for High School Biology
    Joseph P. McInerney, Biological Sciences Curriculum Study
  • Genome Technology and Its Implications: Hands-On Workshops for Educators
    Diane Baker and Paula Gregory, University of Michigan, Ann Arbor
  • Human Genetics for Nonscientists: Practical Workshops for Policymakers and Opinion Leaders
    Jan Witkowski, Cold Spring Harbor Laboratory
  • Teaching Ethics in the Biomedical and Biological Sciences: A Workshop for Research Faculty, Held June 12-16, 1993
    Ed Golub, Pacific Center for Ethics and Applied Biology
  • Workshop on Ethical, Legal, and Social Implications of the Human Genome Project: Education of Interdisciplinary Professionals, Held June 1996
    Joan O. Weiss, Alliance of Genetic Support Groups
  • Implications of the Geneticization of Healthcare for Primary Care Practitioners
    Mary Mahowald, University of Chicago
  • Human Genome Teacher Networking Project
    Debra Collins, University of Kansas
  • Workshop on Individualizing Medicine Through Genomics: Ethical, Legal, and Social Challenges
    Henry T. Greely, Stanford University

Special Publications

  • HUGO International Yearbook: Genetics, Ethics, Law, and Society (GELS)
    Alex Capron, University of Southern California, and Bartha Knoppers, University of Montreal
  • Resources on ELSI Implications of the Human Genome Project (Bibliography)
    Michael S. Yesley, Los Alamos National Laboratory
  • Model Legislation for Protecting Privacy of Information Stored in Genetic Data Banks
    George Annas, Boston University School of Public Health
  • Special Issue on Genetics and Women's Health for Journal of the American Medical Women's Association
    Wendy Chavkin, American Medical Women's Association
  • "Genetics in the Courtroom" Issue of Judges' Journal
    J. Washington and Frederic G. Melcher, American Bar Association
  • Your World, Our World: Exploring the Human Genome. Teacher Resource Materials
    Jeff Davidson, Pennsylvania Biotech Association
  • The Gene Letter: An Online Newsletter on Ethical, Legal, and Social Issues in Genetics for Interested Professionals and Consumers
    Dorothy Wertz and Philip Reilly, Shriver Center

Human Genome Project 1990–2003

The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.

Human Genome News

Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.