Department of Energy ELSI Grants

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Projects Continuing into FY 1993 -Started Before 1993

  1. Paula Apsell and Graham Chedd
    DOE Grant Title:The Secret of Life (pre-1993, 1993)

  2. Ruth E. Bulger and Jane E. Fullarton
    DOE Grant Title: Predicting Future Disease: Issues in the Development, Application, and Use of Tests for Genetic Disorders (pre-1993, 1993)

  3. Debra L. Collins, R. Neil Schimke, and Linda Segebrecht
    DOE Grant Title:Human Genetics Education for Middle and Secondary Science Teachers (pre-1993 1993, 1994)

  4. Troy Duster and Diane Beeson
    DOE Grant Title: Pathways to Genetic Screening: Patient Knowledge-Patient Practices (pre-1993, 1993,1994,1996,1997)
    DOE Grant No. DE-FG03-92ER61393
    DOE Grant Title:Pathways to Genetic Screening: Molecular Genetics Meets the High-Risk Family

  5. Marvin Natowicz
    Studies of Genetic Discrimination (pre-1993, 1993)
    Division of Medical Genetics; Shriver Center; Waltham, MA 02254
    voice: 617.642.0176 Fax:617.894.9968

  6. George Page and Stefan Moore
    Medicine at the Crossroads(pre-1993, 1993)
    WNET/Thirteen; New York, NY 10019
    voice: 212.560.2767 Fax: 212.582.3297

  7. Ralph W. Trottier, Lee A. Crandall, David Phoenix, Mwalimu Imara, and Ray E. Moseley
    Impact of Technology Derived from the Human Genome Project on Genetic Testing, Screening, and Counseling: Cultural, Ethical, and Legal Issues (pre-1993, 1993)
    Department of Pharmacology and Toxicology and Department of Community Health and Preventive Medicine; Morehouse School of Medicine; Atlanta, GA 30310
    voice: 404.752.1711 Fax: 404.755.7318
    Department of Community Health and Family Medicine; University of Florida; Gainesville, FL 32610

Projects New in FY 1993
  1. George J. Annas and Leonard H. Glantz
    Guidelines for Protecting Privacy of Information Stored in Genetic Data Banks (1993)
    Law, Medicine, and Ethics Program; Boston University School of Public Health Boston, MA 02118
    voice: 617.638.4626 Fax: 617.638.5299

  2. Diane Baker and Paula Gregory
    Genome Technology and Its Implications: A Hands-On Workshop for Educators (1993)
    Human Genome Center; University of Michigan; Ann Arbor, MI 48109-0674
    National Center for Human Genome Research; Bethesda, MD
    voice:313.747.2738 Fax: 313.764.4133

  3. Alex Capron and Bartha Knoppers
    HUGO International Yearbook: Genetics, Ethics, Law, and Society (GELS) (1993)
    Pacific Center for Health Policy and Ethics; University of Southern California; Los Angeles, CA 90089-0071
    voice: 213.740.2557 Fax: 213.740.5502 acapron@law.usc.edu
    Faculty of Law; University of Montreal; Quebec, Canada H3C 3JF

  4. Charles C. Carlson
    The Human Genome: Science and the Social Consequences; Interactive Exhibits and Programs on Genetics and the Human Genome (1993,1994, 1996, 1997)
    The Exploratorium; San Francisco, CA 94123
    voice: 415.563.7337, Fax: 415.563.561.0307. charliec@exploratorium.edu
    DOE Grant No. DE-FG03-93ER61583

  5. Joseph D. McInerney and Lynda Micikas
    The Human Genome Project: Information Management, Access, and Regulation--Educational Materials for High School Biology (1993, 1994-added bscs)
    Biological Sciences Curriculum Study; Colorado College; Colorado Springs, CO 80903
    719.578.1136, Fax 719.578.9126
    jmcinerney@cc.colorado.edu

  6. Declan Murphy and Claudette Cyr Friedman
    Pilot Senior Research Fellowship Program: Bioethical Issues in Molecular Genetics
    Library of Congress; Washington, DC 20540
    Friedman's voice: 202.707.1513 Fax: 202.707.1714

  7. Philip R. Reilly
    DNA Banking and DNA Data Banking: Legal, Ethical, and Public Policy Issues(1993)
    Shriver Center; Waltham, MA 02254
    voice: 617.642.0230, Fax: 617.893.5340
    DE-FG02-9lER61237

  8. Alan F. Westin
    Social Science Concepts and Studies of Privacy: A Comprehensive Inventory and Analysis for Considering Privacy, Confidentiality, and Access Issues in the Use of Genetic Tests and Applications of Genetic Data(1993, 1994)
    Center for Social and Legal Research; Hackensack, NJ 07601
    voice: 201.996.1154, Fax: 201.996.1883 alanrp@aol.com

  9. Michael S. Yesley
    Resources on the Ethical, Legal, and Social Implications of the Human Genome Project (1993)
    Los Alamos National Laboratory; Los Alamos, NM 87545
    voice: 505.667.3766 Fax: 505.665.4424 msy@lanl.gov

  10. Franklin M. Zweig
    Adjudicating Genetic Testing and Gene Therapy Litigation: Factors Influencing the Privacy Law and Bioethics Attitudes and Opinions of Trial and Appellate Judges Managing Lawsuits Related to Scientific and Technological Advances Emanating from the Human Genome Project (1993, 1994, 1996, 1997, 1998)
    Center for Health Policy Research; George Washington University; Washington, DC 20052
    voice: 202.296.6922, Fax: 202.296.0025 or 202.785.0114
    Einstein Institute for Science, Health, and the Courts; Bethesda, MD 20814
    301.961.1949, Fax: 301.913.0448, einshac@aol.com
    http://www.ornl.gov/courts
    DE-FG02-96ER62170 and DE-FG02-96ER62081 1997

1993 Conferences

  1. Thomas G. Field
    Maximizing the Return From Genome Research: A Conference Concerning the Effect of Patent Scope on Commercial Incentives
    May 20-23,1993, at Concord, New Hampshire
    Franklin Pierce Law Center; University of New Hampshire; Concord, NH;
    voice: 603.228.1541 Fax: 603.224.3342

  2. Ed Golub
    Teaching Ethics in the Biomedical and Biological Sciences: A Workshop for Research Faculty
    June 12-16, 1993, at Bar Harbor, Maine
    Pacific Center for Ethics and Applied Biology; San Diego, CA
    voice: 619.625.0734 Fax: 619.793.3632

  3. Sheila Jasanoff
    Between Design and Choice: The Social Shaping of Genetic and Reproductive Technologies
    April 2-4, 1993, at Ithaca, New York
    Cornell University Ithaca, NY
    voice: 607.255.6049 Fax: 607.255.6044


1994 NEW

  1. Margaret C. Jefferson, Mary Ann Sesma(1994+) and Patricia Ordonez(1997+)
    A Hispanic Educational Program for Scientific, Ethical, Legal and Social Aspects of the Human Genome Project(1994,1996,1997,1998)
    Department of Biology & Microbiology, California State University, Los Angeles CA 90032
    mjeffer@flytrap.calstatela.edu http://vflylab.calstatela.edu
    Los Angeles Unified School District
    DOE Grant No. DE-FG03-94ER61797

  2. Cheryl Dell, Ph.D., Diana DeVries, M.A., and Diane Baker, M.S.
    Assessment of Genome Education(1994)

  3. Betsy Fader
    International Conference Working Group: The Social Costs and Medical Benefits of Human Genetic Information(1994)

  4. Mark Bloom, David Micklos, and Jan Witkowski
    The Science and Issues of Human DNA Polymorphisms: An ELSI Training Program for High School Biology Teachers (1994)
    Human Genetics for Nonscientists: Practical Workshops for Policy Makers and Opinion Leaders(1997,1998)
    DNA Learning Center Cold Spring Harbor Laboratory; One Bungtown Rd; Cold Spring Harbor, NY 11724
    voice: 516.367.7240

  5. Leroy Hood, Maynard Olson
    Student Sequencing Program(1994)

  6. Maureen M. Munn, Maynard V. Olson and Leroy Hood
    Involvement of High School Students in the Sequencing of the Human Genome(1994, 1996, 1997)
    DE-FG06-94ER61798

  7. Lori B. Andrews, Jane E. Fullarton, Neil A. Holtzman, and Arno G. Motulsky
    Assessing Genetic Risks: Implications for Health and Social Policy (1994)

  8. Ralph W. Trottier, Lee A. Crandall, Faye Cobb Hodgin, Mwalimu Imara, Ray Moseley, and David Phoenix
    Impact of Human Genome-Derived Technology on Genetic Testing, Screening and Counseling: Cultural, Ethical and Legal Issues(1994)
    DE-FG0292ER61396

  9. Michael Yesley
    Genetic Privacy and Discrimination: What the Federal and State Government Are Doing, Aren't Doing, and Should Be Doing (1994)

  10. George J. Annas, Leonard H. Glantz, and Patricia A. Roche
    Protecting Genetic Privacy by Regulating the Collection, Analysis, Use, and Storage of DNA and Information Obtained from DNA Analysis (1994)
    DE-FG02-93ER61626

  11. Rebecca S. Eisenberg, J.D.
    University of Michigan Law School
    Ann Arbor, MI 48109
    voice: 313.763.1372, Fax: 313.763 9375, rse@umich.edu
    The Role of Patents in Technology Transfer in the Human Genome Project (1994)
    Intellectual Property Issues in Genomics (1996)
    Michael A. Heller & Rebecca S. Eisenberg
    Upstream Patents and Downstream Products: A Tragedy of the Anticommons? (1997, 1998)
    DE-FG02-94ER61792


1996 NEW

  1. Maria Sosa, Judy Kass, and Tracy Gath
    Communicating Science in Plain Language: The Science + Literacy for Health: Human Genome Project(1996,1997,1998)
    American Association for the Advancement of Science; Washington, DC 20005
    voice: 202.326.6453, Fax: 202.371.9849 msosa@aaas.org
    DE-FG02-95ER61988

  2. Bari Scott, Matt Binder, and Jude Thilman
    The DNA Files: A Nationally Syndicated Series of Radio Programs on the Social Implications of Human Genome Research and its Applications(1996,1997,1998)
    SoundVision Productions, 2991 Shattuck Ave., Ste. 304, Berkeley, CA 94705 http://www.dnafiles.org
    Genome Radio Project; KPFA-FM; Berkeley, CA 94704
    voice: 510.848.6767 ext 235 Fax: 510.883.0311 bariscot@aol.com or strp@aol.com
    http://www.best.com/~ringo/strp
    DE-FG03-95ER62003

  3. Philip J. Reilly, Dorothy C. Wertz, and Robin J.R. Blatt
    THE GENE LETTER: A Newsletter on Ethical, Legal, and Social Issues in Genetics for Interested Professionals and Consumers (1996, 1997-Wertz becomes PI, 1998)
    The Shriver Center for Mental Retardation; Division of Social Science, Ethics and Law; Waltham, MA 02254
    617.642.0230, Fax: 617.893.5340, preilly@shriver.org
    Also at Massachusetts Department of Public Health, Boston, MA
    Eunice Kennedy Shriver Center for Mental Retardation 200 Trapelo Road Waltham, MA 02254
    voice: 617.642-0292, dwertz@shriver.org
    http://www.geneletter.org
    DOE Grant No. DE-FG02-96ER62174

  4. Sharon Davis, Ph.D. and Leigh Ann Reynolds, Project Associate
    The Human Genome Project and Mental Retardation: An Educational Program (1996, 1997, 1998)
    Department of Research and Program Services
    The Arc of the United States
    500 E. Border Street, Suite 300 Arlington, TX 76010
    voice: 817.261.6003, Fax: 817.277.3491, sdavis@metronet.com lreynold@metronet.com
    http://TheArc.org
    DOE Grant No. DE-FG03-96ER62162

  5. Debra L. Collins, R. Neil Schimke (1996),and Rebecca Knetter,Ph.D.(1997+)
    Human Genome Teacher Networking Project (1996, 1997, 1998)
    Genetics Education Center, University of Kansas Medical Center, Kansas City, KS 66160-7318
    dcollins@kumc.edu
    DE-FG02-92ER61392

  6. Lane Conn
    Human Genome Education Program 1996
    Human Genome Education Program; Stanford Human
    Genome Center; Palo Alto, CA 94304
    voice: 415.812-2003, Fax: 415.8121916 lconn@toolik.stanford.edu
    DE-FG03-96ER62161

  7. Catherine Pinkas (1996), Sylvia Spengler(1996, 1997, 1998) and Janice Mann (1997, 1998)
    Genome Educators
    Human Genome Program Life Sciences Division
    Lawrence Berkeley National Laboratory; Berkeley, CA 94720
    voice: 510.486.4879, Fax: 510.486.5717 sjspengler@lbl.gov or jlmann@lbl.gov

  8. Jeff Davidson and Laurence Weinberger
    Your World/Our World- Biotechnology & You: Special Issue on the Human Genome Project(1996,1997,1998) Pennsylvania Biotechnology Association, Alliance for Science Education
    pa_biotech@Compuserve.Com
    Pennsylvania Biotechnology Association; State College, PA 16801
    voice:814.238.4080, Fax: 814.238.4081, 73150.1623@compuserve.com
    1997: DOE Grant No. DE-FG02-95ER62107

  9. Joseph D. McInerney and B. Ellen Friedman
    Nontraditional Inheritance: Genetics and the Nature of Science Instructional Materials for High School Biology(1996)
    Biological Sciences Curriculum Study; Colorado Springs, CO 80918
    voice: 719.531.5550 Fax: 719.531.9104 jmcinerney@cc.colorado.edu
    DOE Grant No. DE-FG03-95ER61989

  10. Joseph D. McInerney, Lynda B. Micikas, and B. Ellen Friedman
    The Human Genome Project: Biology, Computers, and Privacy Development of Educational Materials for High School Biology
    Biological Sciences Curriculum Study Colorado Springs, CO 80918
    719/531-5550, Fax: -9104, jmcinerney@cc.colorado.edu
    DE-FG03-93ER61584.

  11. Catherine Pinkas and Laurel Egenberger (1996)
    Sylvia J. Spengler and Laurel Egenberger (1997)
    Community College Initiative: A Program for Preparing Community College Students for Work in Biotechnology
    Life Sciences Division, Center for Science and Engineering Education.
    E. O. Lawrence Berkeley National Laboratory, 1 Cyclotron Road, MS 1459 Berkeley, CA 94720
    510.486.5874 Fax: 510.486.5717 sjspengler@lbl.gov

  12. Mary B. Mahowald, John Lantos, Mira Lessick, Robert Moss,
    Lainie Friedman Ross, Greg Sachs, and Marion Verp
    Implications of the Geneticization of Health Care for Primary Care Practitioners (1996,1997)
    Department of Obstetrics and Gynecology and
    MacLean Center for Clinical Medical Ethics
    University of Chicago;
    Chicago, IL 60637
    312.702-9300, Fax: 312.702.0840 mm46@midway.uchicago.edu
    DE-FG02-95ER61990

  13. Sara L. Tobin and Ann Boughton
    Getting the Word out on the Human Genome Project: a Course for Physicians (1996, 1997,1998)
    Sara L. Tobin, Ph.D., M.S.W. Stanford University Department of Biochemistry and Molecular Biology;
    Center for Biomedical Ethics Stanford University Palo Alto, CA 94304-1709
    voice: 415.725.2663, Fax: 415.725.6131 tobinsl@leland.stanford.edu
    http://www-leland.stanford.edu/dept/scbe/pges.htm
    Ann Boughton Thumbnail Graphics annie@telepath.com
    Thumbnail Graphics; Oklahoma City, OK 73118
    DOE Grant No. DE-FG03-96ER62172.

  14. Stephen Goodman
    AAAS Congressional Fellowship Program(1996)
    The American Society of Human Genetics; Bethesda, MD 20814-3998
    voice: 301.571.1825, Fax: 301.530.7079, society@genetics.faseb.org
    DOE Grant No. DE-FG02-95ER61974

  15. Maria Sosa, Judy Kass, and Tracy Gath
    Your Genes, Your Choice by Catherine Baker (1996)
    American Association for the Advancement of Science
    1200 New York Avenue, NW; Washington, DC 20005
    voice: 202.326.6453, Fax: 202.371.9849, msosa@aaas.org



1997 NEW

  1. Maureen Munn, Leroy Hood
    High School Students as Partners in Sequencing the Human Genome (1997,1998)
    Department of Molecular Biotechnology, University of Washington, Box 352145, Seattle, WA 98195
    mmunn@u.washington.edu
    DOE Grant No. DE-FG03-96ER62175

  2. Mark A. Rothstein, J.D., Steven G. Craig, Ph.D., Betsy D. Gelb, Ph.D.
    Measuring the Effects of a Unique Law Limiting Employee Medical Records to Job-Related Matters
    (1997, 1998)
    Health Law and Policy Institute
    University of Houston Law Center
    4800 Calhoune
    Houston, TX 77204-6381
    voice: 713.743.2101 mrothstein@uh.edu

  3. David Micklos, Mark Bloom, Scott Bronson, and John Kruper
    The Science and Issues of Human DNA Polymorphisms (1997)
    DNA Learning Center, Cold Spring Harbor Laboratory, 1 Bungtown Road, Cold Spring Harbor, New York 11724 micklos@cshl.org

  4. J.S. Kotval, D. Dewar, and S. Brynildsen
    Confidentiality Concerns Raised by DNA-Based Tests in the Market-Driven Managed Care Setting (1997)
    School of Public Health, University at Albany, One University Place, Rensselaer, NY 12144-3456
    Department of Public Health Policy and Management School of Public Health University of Albany, S.U.N.Y.
    Executive Park South Albany, NY 12203-3727
    voice: 518.402.0301 Fax: 518.402.0414, jsk03@health.state.ny.us

  5. Robert J. Robbins
    Electronic Scholarly Publishing: Foundations of Classical Genetics (1997, 1998)
    Fred Hutchinson Cancer Research Center
    1124 Columbia St., LV-101, Seattle, WA 98104
    voice: 206.667.2920 Fax: 206.667.6223
    rrobbins@fhcrc.org

  6. Joseph D. McInerney and Michael J. Dougherty
    Genes, Environment, and Human Behavior: Materials for High School Biology (1997, 1998)
    5415 Mark Dabling Blvd., Colorado Springs, CO 80918-3842
    voice: 719.531.5550, Fax: 719.531.9104
    jmcinerney@BSCS.org

  7. Cynthia Needham
    Microbial Literacy Collaborative (1997, 1998)
    Lahey Hitchcock Medical Center, Burlington, MA
    cynthia.a.needham@hitchcock.org

  8. Graham Chedd and Noel Schwerin
    Documentary Series for Public Broadcasting Backbone Media (formerly NoelEye Documentaries) 1327 Church Street, San Francisco, CA 94114
    voice: 415.282.5620 schwerin@slip.net
    Chedd-Angier Production Company; Watertown, MA 02172
    voice: 617.926.8300, Fax: 617.926.2710
    DOE Grant No. DE-FG06-95ER61995

  9. Molly Multedo, Otto Rodriguez and Roberto Salazar(1998)
    Hispanic Role Model and Science Education Outreach Project-Human Genome Project Education and Outreach Component.(1997, 1998)
    Self Reliance Foundation
    121 Sandoval Street,
    3rd Floor, Santa Fe, NM 87501
    voice: 505.984.0080 molly@hrn.org roberto@hrn.org


1998 NEW

  1. Henry Greely and Barbara Koenig
    Individualizing Medicine Through Genomics: Ethical, Legal, and Social Challenges (1998)
    Center for Biomedical Ethics
    Stanford University
    701 Welch Rd.; Bldg. A., Ste. 1105
    Palo Alto, CA 94304
    voice: 650.723.2517, Fax: 650.725.0253, hgreely@leland.stanford.edu

  2. Barbara Handelin
    Public Responsibility in Medicine and Research (1998)
    132 Boylston St. 4th Floor
    Boston, MA 02116
    voice: 617.423-4112 Fax: 617.423 1185 bhandelin@compuserve.com or prmr@aol.com