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 Projects Completed Workshops Retrospective

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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

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