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U.S. Department of Energy
Human Genome Program
Projects in Ethical, Legal,
and Social Issues
published October 1999
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Foreword
1999
Projects
Related Web Sites
Completed
Projects
Completed 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
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