ELSI projects sponsored by the DOE Human Genome Program between 1990 and 2001 are listed below with principal investigators, award dates, and resulting products. HGMIS is aware that the list of products is incomplete for some projects, and this is only a partial list of conferences. To find a particular grantee or topic, search using the "Find in Page" function under your browser's "Edit" pulldown menu.
Television series consisting of eight 1-hour documentaries shown on PBS in 1993.
Set of eight videocassettes.
J. Levine and D. Suzuki, The Secret of Life: Redesigning the Living World, WGBH Educational Foundation, Boston, 280 pp. (1993).
Bibliography on Web: https://public.ornl.gov/site/external/elsi_search.cfm
Michael Yesley, Bibliography: Ethical Legal and Social Implications of
the Human Genome Project, U.S. Department of Energy, Office of Energy Research
Michael Yesley, ELSI Bibliography: Ethical Legal and Social Implications of the Human Genome Project, U.S. Department of Energy, Office of Energy Research (1993).
Michael Yesley, ELSI Bibliography: Ethical Legal and Social Implications of the Human Genome Project: Supplement, U.S. Department of Energy, Office of Energy Research (1994).
M. S. Yesley, "Genetic Privacy, Discrimination, and Social Policy: Challenges and Dilemmas," Microb. Comp. Genom. 2(1), 19-35 (1997).
Lori B. Andrews et al., eds., Assessing Genetic Risks, National Academy Press, Washington, D.C. (1994).
Lori B. Andrews, "Gen-Etiquette: Are There Moral and Legal Responsibilities to Share Genetic Information Within Families?" Chapter 14 in Genetic Secrets, Protecting Privacy and Confidentiality in the Genetic Era, ed. Mark Rothstein, Yale University Press, New Haven and London (1997).
Health Law Issue, "Symposium: Legal and Ethical Issues Raised by the Human Genome Project, " U. Houston Law Rev. 29(1), Spring 1992.
Joseph McInerney et al., Mapping and Sequencing the Human Genome: Science, Ethics, and Public Policy, Biological Sciences Curriculum Study, Colorado Springs, Colorado (1992).
J. D. McInerney, "Molecular Biology: How Can We Translate the Laboratory?" in Genes and Human Self-Knowledge, ed. R. F. Weir, S. C. Lawrence, and E. Fales, University of Iowa Press (1994).
J. D. McInerney, "The Human Genome Project's Relevance to Genetics Education
in High Schools," Am. J. Human Genet. 52 (1), 235-38 (1993).
J. D. McInerney, "The Human Genome Project and Biology Education," BioSci. 45(11), 786-91 (1995).
J. D. McInerney, "Why Biological Literacy Matters: A Review of Commentaries Related to The Bell Curve: Intelligence and Class Structure in American Life," Q. Rev. Biol. 71(1), 81-96 (1996).
Two residential workshops held yearly for 3 years.
Timothy Murphy and Mark Lappé, eds., Justice and the Human Genome Project, University of California Press (1994).
National Research Council, The Funding of Young Investigators in the Biological and Biomedical Sciences, 128 pp., 1994.
Two national conferences held in 1991 and 1992.
"Summary Reflection Statement," Hum. Gene Ther. 3(5), 525-27 (October 1992).
J. Robert Nelson, On the New Frontiers of Genetics and Religion, Eerdmans Publishing, Grand Rapids, Michigan (1995).
J. E. McEwen and P. R. Reilly, "Genetic Testing and Screening-VI, Legal Issues," pp. 943-49 in Encycl. Bioeth., Vol. 2, ed. W. Reich, Simon & Schuster MacMillan (1994).
P. R. Reilly, "Genetics and the Law," pp. 967-77 in Encycl. Bioeth., Vol. 2, ed. W. Reich, Simon & Schuster MacMillan, New York (1994).
J. E. McEwen, K. McCarty, and P. R. Reilly, "A Survey of Medical Directors of Life Insurance Companies Concerning Use of Genetic Information," Am. J. Hum. Genet. 53, 33-45 (1993).
J. E. McEwen, K. McCarty, and P. R. Reilly, "A Survey of State Insurance Commissioners Concerning Genetic Testing and Life Insurance," Am. J. Hum. Genet. 51, 785-92 (1992).
J. E. McEwen and P. R. Reilly, "State Legislative Efforts to Regulate Use and Potential Misuse of Genetic Information," Am. J. Hum. Genet. 51, 637-47 (1992).
Four-part documentary series shown on public television in 1993.
Set of eight videocassettes (1993).
Melvin Konner, Medicine at the Crossroads: The Crisis in Health Care, Vintage Books (Reprint Edition, 1994).
Title: Science and Journalism Conference III, Genes and Human Behavior:
A New Era? held October 1991
P.I.: Jonathan Beckwith, Center for Study of Public Policy
Project Period: 10/22/91 to 10/15/92
P. R. Billings, J. Beckwith, and J. S. Alper, "The Genetic Analysis of Human Behavior: A New Era?" Soc. Sci. Med. 35(3), 227–38 (1992).
J. Beckwith and J. S. Alper, "Human Behavioral Genetics," Genet. Resour. 10(2), 5–9 (1996).
J. S. Alper and J. Beckwith, "Genetic Fatalism and Social Policy: The Implications of Behavior Genetics Research," Yale J. Biol. Med. 66(6), 511–24 (Nov.–Dec. 1993).
L. Hoffman, ed., Proceedings of the Second Conference on Computers, Freedom, and Privacy (1993).
B. Fader, "Visions for A Sustainable World: Science, Technology, and Social Responsibility," Conference Report (June 1992).
B. Fader, "Ethics and the Use of Genetic Information—Tough Questions by Student Pugwash USA," Conference Report, 7–11 (Summer 1992).
Frank Grad and I. L. Feitshans, The Lawful Uses of Knowledge from the Human Genome Project (1992), unpublished.
Web Site: http://www.kumc.edu/gec
Through the networking system established under this grant, Debra Collins presented numerous workshops and teacher participants trained many others through workshops, courses, and sharing of educational materials.
D. L. Collins, J. Bailey-Wilson, and M. S. Boguski, "User-Friendly Access to Computer Information," Workshop at the American Society of Human Genetics Meeting, October 1995 in Minneapolis, Minnesota.
D. L. Collins, J. Shaw, and K. Dietrich, "On-Ramp to the Information Superhighway: How the Internet can Aid the Genetic Counselor," National Society of Genetic counselors, Minneapolis, Minnesota, October 1995.
D. L. Collins, "Medical Genetics Information on the Internet: Three Years Experience," Platform Presentation at the American Society of Human Genetics Annual Meeting, October 1997 in Baltimore, Maryland.
D. L. Collins, B. Fine, and D. L. Baker, "Introduction to Proposal Writing for Grants," Three-Hour Workshop at the National Society of Genetic Counselors Meeting, October 1997 in Baltimore, Maryland.
D. L. Collins, "Teachers and Students Benefit from Human Genome," Workshops at American Society of Human Genetics Meeting, October 1998 in Denver, Colorado.
J. S. Alper and M. R. Natowicz, "Genetic Discrimination and the Public Entities and Public Accommodations Titles of the Americans with Disabilities Act," Am. J. Human Genet. 53, 26-32 (1993).
J. S. Alper, M. R. Natowicz, and C. F. Ard, "Discrimination on the Basis of
Perceived Genetic Disabilities," Disabil. Stud. Q. 13, 27-30 (1993).
J. S. Alper et al., "Genetic Discrimination and Screening for Hemochromatosis," J. Pub. Health Pol. 15, 345-58 (1994).
P. R. Billings et al., "Discrimination as a Consequence of Genetic Testing," Am. J. Hum. Genet. 50, 472-82 (1992).
L. N. Geller et al., "Individual, Family, and Societal Dimensions of Genetic Discrimination: Case History Analyses," Sci. Engr. Ethics 2, 71-88 (1996).
M. R. Natowicz, J. K. Alper, and J. S. Alper, "Genetic Discrimination and the Law," Am. J. Hum. Genet. 50, 465-75 (1992).
Eight symposium presentations.
Ralph Trottier and Lee Crandall, Public Sector Genetic Services: Current Status and Potential Issues Raised by the Human Genome Project (1996), unpublished report.
D. A. Phoenix et al., "Sickle Cell Screening Policies as Portent: How Will the Human Genome Project Affect Public-Sector Genetic Services?" J. Nat. Med. Assoc. 87, 807-12 (November 1995).
L. A. Crandall, "Genetic Testing and Managed Care: Balancing Individual, Family, and Corporate Interests" in Resources, Rationing, and Responsibility: Ethical Issues in Managed Care (Continuing Education Conference Papers), Indiana University School of Medicine, Division of Continuing Education, Indianapolis (1996).
S. V. McCrary and W.L. Allen, "The Human Genome Initiative and Primary Care" in Ethics: Critical Issues for Today's Health Professional, ed. J.F. Monagle and D.C. Thomama, Aspen Publishers, Gaithersburg, Maryland, 447 pp. (1994).
R. W. Trottier, "Genetics In Public Health: Implications of Genetic Screening/Counseling in Rural/Culturally Diverse Populations," Chapter 13 in Technoscience and Cyberculture, ed. S. Aronowitz, B. Martinsons, and M. Menser, Routledge Press, New York (1996).
D. C. S. James et al., "Professional Preparation of Individuals Who Provide Genetic Counseling Services," J. Genet. Couns. 4, 49-63 (1995).
D. C. S. James et al., "Roles of Physicians, Genetic Counselors, and Nurses in the Genetic Counseling Process," J. Fla. Med. Assoc. 82(5), 403-10 (1995).
S. V. McCrary et al., "Ethical and Practical Implications of the Human Genome Initiative for Family Medicine," Arch. Fam. Med. 2, 1158-63 (November 1993).
R. Moseley et al., "Policy Recommendations for Genetic Testing," pp. 22-23 and 27-28 in The Female Patient (August 1993).
L.A. Crandall, "Biomedical Ethics: Challenges from New Technologies" in Building Bridges: Strategies for the Future, Proceedings of the 14th Annual Meeting of the Society for Halthcare Planning and Marketing, American Hospital Association, Chicago (1992).
M.A. Dewar et al., "Genetic Screening by Insurance Carriers," Letter
in J. Am. Med. Assoc. 267(9), 1207-8 (March 4, 1992).
L. A. Crandall and R. E. Moseley, "Public Policy Implications of Scientific Research: The Human Genome Initiative and the Future of Insurance," Editorial Forum in N. Biol. 3(12), 1135–36 (December 1991).
R. E. Moseley et al., "Ethical Considerations of a Complete Human Genome Map for Insurance," Bus. Prof. Ethics J. 10(4), 69–82 (Winter 1991).
H. Ostrer et al., "Insurance and Genetic Testing: Where are We Now?" Am. J. Hum. Genet. 52(3), 565–77 (March 1993).
Troy Duster and Diane Beeson, Pathways and Barriers to Genetic Testing and Screening: Molecular Genetics Meets the High-Risk Family (1997), on Web.
R. C. Yamashita, "Bringing Disease Back In: Provisional Models and Implications for Future Research," Sociol. Health Care 14 (1997).
Diane Beeson and Teresa Doksum, "Family Values and Resistance to Genetic Testing," Chap. 9 in Bioethics in Context, ed. Barry Hoffmaster, Temple University Press (2001).
Renee Anspach and Diane Beeton, "Emotions in Medical and Moral Life," Chap. 5 in Bioethics in Context, ed. Barry Hoffmaster, Temple University Press (2001).
Diane Beeson and Troy Duster, "African-American Perspectives on Genetic Testing," in The Double-Edged Helix, ed. Peter Conrad and Jon Beckwith, Johns Hopkins University Press, forthcoming in 2001.
Philip Kitcher, The Lives to Come: The Genetic Revolution and Human Possibilities, Touchstone Books (1997).
Two 5-day continuing-education workshops conducted annually for high school science teachers.
Banking Our Genes, videocassette (1995).
J. E. McEwen and P. R. Reilly, "Setting Standards for DNA Banks: Toward a Model Code of Conduct," Microb. Comp. Genomics 1(3), 165-77 (1996).
J. E. McEwen and P. R. Reilly, "A Survey of DNA Diagnostic Laboratories Regarding DNA Banking," Am. J. Hum. Genet. 56, 1477-86 (1995).
J. E. McEwen and P. R. Reilly, "A Review of State Legislation on DNA Forensic Databanking," Am. J. Hum. Genet. 54, 941-58 (1994).
J. E. McEwen and P. R. Reilly, "A Survey of State Crime Laboratories Regarding DNA Forensic Databanking," Am. J. Hum. Genet. (1994).
J. E. McEwen and P. R. Reilly, "Stored Guthrie Cards as DNA 'Banks'," Am. J. Hum. Genet. 55, 196-200 (1994).
"Diving Into the Gene Pool" display and lecture series at the Exploratorium, April-September 1995. Visited by more than 300,000 people. Project resulted in 26 permanent interactive exhibits at the Exploratorium.
Adele E. Clarke, "Modernity, Postmodernity, and Reproductive Processes, c. 1890-1900, or 'Mommy, Where Do Cyborgs Come From Anyway?' " in The Cyborg Handbook, ed. C. Gray, S. Mentor, and H. Figueroa-Sarriera, Routledge Press, New York (1995).
Charis Cussins, "Reproducing Reproduction: Techniques of Normalization and Naturalization in an Infertility Clinic," in Reproducing Reproduction, ed. S. Franklin and H. Ragone, University of Pennsylvania Press, Philadelphia (1997).
Nellie Oudshoorn, "The Transformation of Sex Hormones into the Pill" in Beyond the Natural Body: An Archaeology of Sex Hormones, ed. N. Oudshoorn, Routledge Press, London (1994).
Joan Rothschild, "Engineering the 'Perfect Child': Feminist Responses" in Against Patriarchal Thinking, ed. Maja Pellkiaan-Engel, VU University Press, Amsterdam (1992).
Charis Cussins, "Les Cycles de la Conception: les techniques de normalisation dans un centre de traitement de la St‚rilit‚," in Technol. Culture 25-26, 307-38.
Michael Mulkay, "Frankenstein and the Debate Over Embryo Research," Sci. Technol. Hum. Values 21(2), 157-76.
Einshac News online magazine ( http://www.einshac.org)
Franklin Zweig, "Biomarkers in the Courtroom," pp. 401-21 in Biomarkers Science and Technology, ed. M. Mendelsohn, L. Mohr, and J. Peeters, National Academy Press, Washington, D. C. (1998).
Franklin Zweig and Shana Malinowski, The Biology of Conduct: Judges' Handbook on the Science and Law of Neuro and Behavioral Genetics, Einstein Instutute for Science, Health, and the Courts (2000).
Franklin Zweig, Joseph T. Walsh, and Daniel M. Freeman, "Courts and the Challenges of Adjudicating Genetic Testing's Secrets," Chapter 18 in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, ed. Mark Rothstein, Yale University Press, New Haven and London (1997).
F. Zweig, Review of A. Buchanan et al., "Chance to Choice: Genetics and Justice," in Amer. Sci., in press (February 2001).
F. Zweig, A. Davis, and R. P. Guy, "Legal Scenarios for Life Technologies Cases," Commun. Genet., in press (February 2001).
Franklin Zweig, "Judging Molecular Biology of Murder, Addictive Disorders, and Dementia," Hum. Genome News 11(1–2), 14–16 (Nov. 2000).
Franklin Zweig and Diane E. Cowdrey, "Educating Judges for Adjudication of New Life Technologies," Judicature 83(3), 157–61 (Nov.–Dec. 1999).
Franklin M. Zweig, "The End of Natural History and the Beginning of Engineered Evolution in the Courts," Judges' J. 36(3), 26-30 (Summer 1997).
Franklin M. Zweig, Joseph T. Walsh, and Daniel M. Freeman, "Adjudicating Neurogenetics at the Crossroads: Privacy, Adoption, and the Death Sentence," Judges' J. 36(3), 52-58 (Summer 1997).
Representative Meetings and Workshops
Alan Westin, Social Science, Policy, and the Uses of Genetic Information (working title), publication expected in 2002.
Joseph McInerney et al., The Human Genome Project: Biology, Computers, and Privacy, Biological Sciences Curriculum Study, Colorado Springs, Colorado (1996). Teaching module.
Conference Proceedings, RISK: Health, Safety, & Environment 5(2), 1994.
George J. Annas, Leonard H. Glantz, and Patricia A. Roche, The Genetic Privacy Act and Commentary (1995). [On Web at http://www.ornl.gov/hgmis/resource/privacy/privacy1.html] Some 650 copies printed and distributed in 1995.
G. J. Annas, L.H. Glantz, and P. A. Roche, "Drafting the Genetic Privacy Act: Science, Policy, and Practical Considerations," J. Law Med. Ethics 23, 360-66 (1995).
P. A. Roche, L. H. Glantz, and G. J. Annas, "The Genetic Privacy Act: A Proposal for National Legislation," Jurimetrics 37, 1-11 (1996).
P.R. Reilly, "The Impact of the Genetic Privacy Act on Medicine," J. Law Med. Ethics 23(4), 378-81 (1995).
Web site: http://hshgp.genome.washington.edu
Online Teaching Modules and Student Activities: DNA Sequencing Module (1998),
Ethics Module (1998), DNA Synthesis (1997), and the Virtual DNA Sequencing Unit.
Maureen Munn et al., "The Involvement of Genome Researchers in Partnerships for Genomics Education," Genome Res. 9, 597-607 (1999).
Products: Exhibits on biotechnology.
Curricula designed for students and parents. Student curriculum consists of already available and newly developed materials and activities such as supplemental information in four major units of biology, student-developed surveys, and more. Parent curriculum consists of newsletters written by students in both English and Spanish.
Booklet of abstracts from conference.
R. Eisenberg, "Genomic Patent and Product Development Incentives" in Human DNA: Law and Policy, ed. B. M. Knoppers, C. M. Laberge, and M. Hirtle, Kluwer Academic Publishers, Netherlands (1997).
R. Eisenberg, "Do EST Patents Matter?" Trends Genet. 14, 379 (1998).
R. Eisenberg, "Structure and Function in Gene Patenting," Nat. Genet. 15, 125 (1997).
R. Eisenberg, "Intellectual Property Issues in Genomics," Trends Biotechnol. 14, 302 (1996).
R. Eisenberg, "Intellectual Property at the Public-Private Divide: The Case of Large-Scale cDNA Sequencing," Univ. Chi. L.S. Roundtable 3, 557 (1996).
R. Eisenberg, "Public Research and Private Development: Patents and Technology Transfer in Government-Sponsored Research," Va. L. Rev. 82, 1663 (1996).
R. Eisenberg and M. Heller, "Can Patents Deter Innovation? The Anticommons in Biomedical Research," Science 280(5364), 698 (1998).
R.S. Eisenberg, "Streamlining the Transfer of Research Tools," Acad. Med. 74(6), 683–85 (1999).
K. Finneran et al., "The Politics of Genetic Testing," Issues Sci. Technol. 13(1), 48–54 (1996).
Four annual addresses by distinguished speakers.
Conference led to the formation of the Risk Assessment and Policy Association (RAPA).
Conference Proceedings, RISK: Health, Safety & Environment 6(2), 1996.
Four forums on biotechnology held during grant period to foster open communication in biotechnology research, development, commercialization, and use:
Board on Biology, National Research Council, Privacy Issues in Biomedical and Clinical Research: Proceedings of Forum on November 1, 1997, National Academy of Sciences, Washington, D.C., National Academy Press, 58 pp. (1998). [On Web]
Board on Biology, National Research Council, Designing an Agricultural Genome Program, National Academy Press, 50 pp. (1998). [On Web]
Robert Pool and Joan Esnayra, Bioinformatics: Converting Data to Knowledge: Workshop Summary, Board on Biology, National Research Council, 54 pp. (2000). [On Web]
Four-week summer residential programs for students.
Seminars for biotechnology instructors.
Summer faculty-student research teams.
Bound packet of articles for attendees.
J. Beckwith and J.S. Alper, "Human Behavioral Genetics," Genet. Resour. 10(2), 5-9 (1996).
Joseph McInerney et al., The Puzzle of Inheritance: Genetics and the Methods of Science, Biological Sciences Curriculum Study, Colorado Springs, Colorado. Teaching module.
Catherine Baker, Your Genes, Your Choices: Exploring the Issues Raised by Genetic Research, American Association for the Advancement of Science (1997). Available in print and on the Web.
Nine 1-hour documentaries broadcast on public radio in the fall of 1998.
Web Site: http://www.dnafiles.org
E. Kodish, P. Whitehouse, and T. Murray, "Conflict of Interest in University-Industry Research Relationships: Realities, Politics, and Values," Acad. Med. 71(12), 1287–90 (Dec. 1996).
Eric Kodish, "Commentary: Risks and Benefits, Testing and Screening, Cancer, Genes, and Dollars," J. Law Med. Ethics 25(4), 252–55, 230 (Winter 1997).
AAAS fellowships for genetics professionals to spend a year as special legislative assistants on the staff of members of Congress or on congressional committees.
Maimon M. Cohen, "Eye on Capitol Hill," ASHG Newsletter, 4-5 (February 1996).
Maimon M. Cohen, "Eye on Capitol Hill," ASHG Newsletter, 4-6 (July 1996).
Mary Z. Pelias, "The View from the Hill," ASHG Newsletter, 4 (March 1997).
Mary Z. Pelias, "AAAS Congressional Fellow Report for Period 1996-97," ASHG Newsletter, 9-11 (July 1998).
"AAAS Fellow (Carol Greene), Final Report, 1999; "Judith L. Benkendorf, "A View from Capitol Hill," online in ASHG Newsletter (April 2000).
National Conference on The New Genetics in Primary Care, Chicago, IL, held April 1997.
Mary B. Mahowald, Angela Sheuerle, and Timothy Aspinwall, Genetics in the Clinic: Clinical, Ethical, and Social Implications for Primary Care, Mosby (2001).
Lainie Friedman Ross, "Genetic Services for Children: Who Should Consent?" in A Companion to Genethics: Ethics and the Genetic Revolution, ed. J.C. Burley and J. Harris, Blackwell's Companions to Philosophy Series, Oxford, England (in press, 2000).
Greg A. Sachs, "Alzheimer Genetics and the Primary Care Physician," pp. 239-55 in Genetic Testing for Alzheimer Disease: Ethical and Clinical Issues, ed. Stephen G. Post and Peter J. Whitehouse, Johns Hopkins University Press (1998).
Margaret R. Moon and Lainie Friedman Ross, "Ethical Issues in the New Genetics," Forum 7(3), 57-66 (1997).
Philip Sloan, ed., Controlling Our Destinies: The Human Genome Project from Historical, Philosophical, Social, and Ethical Perspectives, University of Notre Dame Press, Notre Dame, Indiana (2000).
Conference Proceedings, RISK: Health, Safety & Environment 7(3), 1996.
Mark Rothstein, "The Law of Medical and Genetic Privacy in the Workplace," Chapter 15 in Mark Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, Yale University Press, New Haven and London (1997).
Mark Rothstein, "Genetic Secrets: A Policy Framework," Chapter 23 in Mark Rothstein, ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, Yale University Press, New Haven and London (1997).
Two-hour PBS special shown September 16, 1997.
Video series (8 one-hour programs, 1998).
Educator's guide, teacher resources [http://www.pbs.org/gene].
Exploring the Human Genome, special issue of Your World Our World, Pennsylvania Biotechnology Association, State College, Pennsylvania (1996).
Teachers' guide, resources such as posters and handouts.
Laboratory-based curriculum modules for high school students, unpublished:
M. Munn et al., "The Involvement of Genome Researchers in High School Science Education," Genome Res. 9(7), 697-607 (1999).
Web Site: http://www.thearc.org
Sharon Davis, "The Human Genome Project: Examining The Arc's Concerns Regarding the Project's Ethical, Legal, and Social Implications," Platform Presentation at the DOE Human Genome Program Contractor-Grantee Workshop VI on November 12, 1997.
Sharon Davis et al., "Technology in Genetics: The Danger of Knowing Too Much," Exceptional Parent (November 1997).
Reports and Fact Sheets (All published in print and on the Web site)
Fact Sheets (Q&As)
Title: Workshop on Individualizing Medicine Through Genomics: Ethical, Legal,
and Social Challenges
P.I.: Henry T. Greely, Stanford University
Project Period: 3/01/96 to 5/30/99
Videotapes of conference.
Videos, CD-ROMs, and Online Sites
Ten issues of The Gene Letter published online to May 1999.
Web Site: http://www.geneletter.com
Five seminars held between February and June 1996.
J. O. Weiss and E. V. Lapham, Ethical, Legal, and Social Implications of the Human Genome Project: Education of Interdisciplinary Professionals (1996), workshop proceedings.
Meeting culminated in a 3-year project (called HuGEM) sponsored by the ELSI branch of the NIH National Human Genome Research Institute. HuGEM produced a training video, manual, many educational and resource tools, a number of publications, and two core university courses.
J. Amer. Med. Women's Assoc. 52(1), Winter 1997 issue.
GELS meeting in Washington, D.C., and subsequent submissions to European international authorities.
Bartha M. Knoppers, Claude M. Laberge, and Marie Hirtle, eds., Human DNA: Law and Policy, Kluwer Academic Publishers, Netherlands (1997).
Sonia Le Bris and Bartha M. Knoppers, "International and Comparative Concepts of Privacy," Chapter 22 in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, ed. Mark Rothstein, Yale University Press, New Haven and London (1997).
B. M. Knoppers, "Privacy, Confidentiality, and Genetic Information: A Comparative
Analysis," Microb. Compar. Genomics 1(2), 37-51 (1997).
B. M. Knoppers et al., "Control of DNA Samples," Genomics 50, 385-401 (1998).
R. Chadwick et. al., "Legal Rights and Human Genetic Material," Bioethics
12(4), 343-45 (1998).
Edward Smith and Walter Sapp, eds., Plain Talk About the Human Genome Project, Tuskegee University Press, Tuskegee, Alabama (1997).
Web site: http://www.twistedladdermedia.com
Two CD-ROMs released in 2001:
P. J. Fox, S. E. Kelly, and S. L. Tobin, "Defining Dementia: Social and Historical Background of Alzheimer Disease," Genet. Testing 3, 13–19 (1999).
S. L. Tobin, N. Chun, T. M. Powell, and L. M. McConnell, "The Genetics of Alzheimer Disease and the Application of Molecular Tests," Genet. Testing 3, 37–45.
S. S. Jeffrey, T. M. Powell, and S. L. Tobin, "Clinical and Genetic Aspects of Breast Cancer," chap. 4 in Genetic Testing for Inherited Susceptibility to Breast Cancer (working title). In press, Cambridge University Press (2001).
S. L. Tobin and S. S. Jeffrey, "Cancer as a Genetic Disease," chap. 5 in Genetic Testing for Inherited Susceptibility to Breast Cancer (working title). In press, Cambridge University Press (2001).
S. L. Tobin and B. J. McCarthy (2001),"The Technology of Mutation Detection
and Its Commercial Application," chap. 6 in Genetic Testing for Inherited Susceptibility
to Breast Cancer (working title). In press, Cambridge University Press (2001).
Platform presentation at the DOE Contractor-Grantee Meeting VI, held in Santa Fe, New Mexico, in November 1997.
Educational Web Site: http://www.microbeworld.org
Intimate Strangers: Unseen Life on Earth: Four-part science documentary due for national broadcast on PBS in the fall of 1999. Companion book.
Microbe World: Set of activities exploring the microbial world.
MicrobeWorld Mentors: Youth leadership conferences to develop microbial mentors.
Unseen Life on Earth: Telecourse based on concepts in the documentary.
Cynthia A. Needham et al., Intimate Strangers: Unseen Life on Earth, American Society for Microbiology (2000).
Web Site: http://www.dnalc.org/
Nine 2.5-day training workshops for high school science teachers
Three Advanced Technology (AT) PCR kits developed to simplify lab techniques in educational settings. Released through Carolina Biological Supply company in 1998.
Laboratory-based unit on polymorphisms (genetic differences) and the ELSI aspects of the genome project. Used in 3-day workshops for teachers.
Joseph McInerney et al., Genes, Environment, and Human Behavior, Biological Science Curriculum Study, Colorado Springs, Colorado (1999). Teaching module distributed free to high school teachers.
J. D. McInerney, "Genes, Behavior, and High School Biology," Am. Biol. Teach. 60(3), 168-73 (1998).
Title: The Human Genome Project: What's the Public Got to do With It? A
Symposium at the 1997 AAAS Annual Meeting and Scientific Innovation Exposition,
held February 1997
P.I.: Gregory and Alexander Fowler, American Association for the Advancement of Science
Project Period: 2/15/97 to 2/14/98
Four cassettes of symposium (Parts 1 and 2) available from AAAS.
R. Zilinskas, ed., Proceedings of the Conference on Ethical, Political, and Social Implications of the Human Genome Project for the Minority Communities of Maryland (1999).
Raymond A. Zilinskas and Peter J. Balint, eds., The Human Genome Project and Minority Communities: Ethical, Social, and Political Dilemmas, Praeger Publishers, Westport and London (2001).
About 100 new episodes of Spanish episodes to be broadcast over 2 years in three popular radio series, including talk shows in the United States and Latin America.
Bilingual 800 number for outreach information and referral service.
Syndicated column in 82 Spanish-language newspapers.
M. Rothstein, B. Gelb, and S. Craig, "Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: Analysis of a Unique Minnesota Law," Am. J. Law Med. 24, 399-416 (1998).
Web Site: http://www.esp.org
Numerous classic papers in genetics republished electronically in a variety of formats, along with additional biographical, autobiographical, historical, pedagogical, and analytical material.
Judges' J. 36(3), Summer 1997 (entire issue devoted to genetic revolution's impact on society). Selections on the Web.
Jeroo S. Kotval, "Market-Driven Managed Care in the Confidentiality of Genetic Tests: The Institution as Double Agent," Albany Law J. Sci. Technol. 9(1), 1998.
Program in preparation, 1998-2001.
P. R. Reilly and D. C. Page, "We're Off to See the Genome," Nat. Genet. 20, 15-17 (1998).
The Human Genome Project: Science, Law, and Social Change in the 21st Century, Whitehead Institute for Biomedical Research and the American Society of Law, Medicine, and Ethics (CD-ROM 1998).
Genes and Society: Impact of New Technologies on Law, Medicine, and Policy, Whitehead Institute for Biomedical Research and the American Society of Law, Medicine, and Ethics (Whitehead Policy Symposium Report and CD-ROM, 2000).
Video showing roundtable discussion by members of the Institutional Review Board community and the biopharmaceutical industry on hot topics in the ethical review of human genetics research.
Set of documents.
T. Caulfield and B. Williams-Hones, eds., The Commercialization of Genetic Research, Kluwers Academic/Plenum Publishing, New York (1999).
Proceedings of the Conference on Informed Consent in Human Subjects Research, 54 pp. (2000).
Numerous papers in preparation (2001).
"Economic Implications of Intellectual Property Rights and the Human Genome Research Program," paper presented at the Fourth Annual Challenges in Licensing and Intellectual Property Symposium of the Licensing Executive Society, March 25, 2000.
"Economics and Human Genome Intellectual Property Rights--An Uncommon Topic," talk presented at at the Fourth Annual Challenges in Licensing and Intellectual Property Symposium of the Licensing Executive Society, March 25, 2000.
Numerous workshops conducted by conference participants at minority meetings around the country.
Numerous workshops conducted by conference participants at minority meetings around the country.
The Challenges and Impact of Human Genome Research for Minority Communities, Conference Proceedings, 62 pp. (2000). Proceedings on Web.
Pilot week-long science training workshop for public radio reporters and producers held in October 1999 to introduce basic science concepts and offer training in science journalism.
Intensive week-long workshop held in March of 2001 at KQED in San Francisco for about a dozen media professionals from around the country. Scientists from a range of disciplines spoke on timely science topics.
Business Ethics in the Biotechnology and Pharmaceutical Industries (working title), in preparation (2001).
Ten case studies developed for teaching business ethics and social issues in biotechnology and pharmaceutical industries. Originated in a business ethics course at Stanford University School of Medicine and Graduate School of Business, case studies were evaluated by use in a business school course, then modified and edited for inclusion in a textbook.
Case Study Companies and Topics
Web site: http://www.nsls.info/genome/. Kickoff panel discussion on videotape, broadcast on TV. Three newsletters published, also on Website. Eleven participating libraries conducting a series of programs extending through summer 2002.
"Genetics, Ethics, and Democracy: Ethical Concepts in Lawmaking Concerning Genetic Technology," paper presented at the Nature and Technology Conference of the Society for Philosophy and Technology conference in Aberdeen, Scotland, in July 2001.
Data gathered from state legislative commissions, departments of health, genetics groups, and individual state legislators (2001).
Brett Shelton, "Regulating Genetic Research in Indian Country: Nature, Scope and Limitations of Tribal Authorities," paper for Seventh International Congress of Ethnobiology, Athens, Georgia (2000).
David Stephenson, Jr., "Lease, Contract, and License: An Introduction to Alternative Mechanisms for Protecting the Intellectual Property of American Indians," paper for Seventh International Congress of Ethnobiology, Athens, Georgia (2000).
David Stephenson, Jr., "Contracts and Licenses for Genetic Information: An Introduction to Alternative Mechanisms for Protecting the Intellectual Property of American Indians in the Context of the Human Genome Project," paper for First Conference of the University of Colorado Health Sciences Center ELSI Working Group, Aspen, Colorado (2001).
Kimberly TallBear, "Genetics, Culture, and Identity in Indian Country," paper for Seventh International Congress of Ethnobiology, Athens, Georgia, (2000).
Kimberly TallBear, "Racialising Tribal Identity and the Implications for Political and Cultural Development," paper for Indigenous Peoples and Racism Conference, Sydney, Australia (2001).
Kimberly TallBear, "Genetics, Race, and Tribes: Implications for Political and Cultural Sovereignty," paper for First Conference of the University of Colorado Health Sciences Center ELSI Working Group, Aspen, Colorado (2001).
Mervyn L. Tano, "Tattooed Heads, Scalps, Kidneys and Genetic Material: A Brief History of Commerce in Body Parts and the Implications for Regulating the Genome of Indigenous Peoples in Indian Country," paper for Seventh International Congress of Ethnobiology, Athens, Georgia, (2000).
Co-Sponsor, First Conference of the University of Colorado Health Sciences Center ELSI Working Group, Aspen, Colorado (2001), conference report forthcoming.
Products: Bioinformatics module in preparation, 2001.
Products: Conference held October 2000 for judges from three states.
Products: Two national workshops held in November 1999 and 2000 for content developers of science-education Web sites. Workshop proceedings on Web "Learning Strategies for Science Education Websites," (2000).
Products: Experiences of about 10 survivors being collected and preserved (2001).
Products: "Ethics, Psychiatric Genetics, and Mental Illness Research," presentation at Central Nervous System Summit 2001, Feb. 13, 2001.
Products: Conference held April 25–27, 2001. White paper in preparation (2001).
Products: CD-Rom in preparation for use by genetic counselors and secondary audiences (2001).
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