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THE HUMAN GENOME PROJECT: HOW PRIVATE SECTOR DEVELOPMENTS AFFECT THE GOVERN- MENT PROGRAM V The Hiian Genoiie Project: How Private Sector Developjients Affect the Governiient Prograu, (No. MORELLA, Maryland CURT WELDON, Pennsylvania DANA ROHRABACHER, California STEVEN SCHIFF, New Mexico JOE BARTON, Texas KEN CALVERT, California ROSCOE G. EHLERS, Michigan DAVE WELDON, Florida MATT SALMON, Arizona THOMAS M. Al 113 Bill Richards, "Perkin-Elmer Jumps Into Race to Decode Genes," The Wall Street Journal, May 11, 1998, p.HEARING BEFORE THE SUBCOMMITTEE ON ENERGY AND ENVIRONMENT • OF THE COMMITTEE ON SCIENCE U. HOUSE OF REPRESENTATIVES ONE HUNDRED FIFTH CONGRESS SECOND SESSION JUNE 17, 1998 [No. DAVIS, Virginia GIL GUTKNECHT, Minnesota MARK FOLEY, Florida THOMAS W. "CHIP' PICKERING, Mississippi CHRIS CANNON, Utah KEVIN BRADY, Texas MERRILL COOK, Utah PHIL ENGLISH, Pennsylvania GEORGE R. B6 115 Nicholas Wade, "Beyond Sequencing of Human DNA," The New York Times, May 12, 1998, p.C16 120 Nicholas Wade, "International CSrene Project Gets Lift: Wellcome Trust Dou- bles Commitment to Public-Sector Effort," The New York Times, May 12, 1998, p. Haseltine, "Gene-Mapping, Without Tax Money," The New York Times, May 21, 1998, p. Department of Energy and the Human Genome Project, Prepared by the Lawrence Berkeley National Laboratory for the U. Department of Energy, Office of Energy Research, Office of Health and Environmental Research, July 1996 345 Francis Collins and David Galas, "A New Five-Year Plan for the U. Human Genome Program," Science 262, 43 (1993) 380 DOE Human Genome Program Primer on Molecular Genetics, Prepared by the Human Genome Management Information System, Oak Ridge National Laboratory for the U. Department of Energy, Office of Energy Research, Office of Health and Environmental Research, June 1992 390 (VI) THE HUMAN GENOME PROJECT: HOW PRI- VATE SECTOR DEVELOPMENTS AFFECT THE GOVERNMENT PROGRAM WEDNESDAY, JUNE 17, 1998 House of Representatives, Committee on Science, Subcommittee on Energy and Environment, Washington, DC.66] Printed for the use of the Committee on Science APR 6 1999 THE HUMAN GENOME PROJECT: HOW PRIVATE SECTOR DEVELOPMENTS AFTECT THE GOVERN- MENT PROGRAM HEARING BEFORE THE SUBCOMMITTEE ON ENERGY AND ENVIRONMENT OF THE COMMITTEE ON SCIENCE U. HOUSE OF REPRESENTATIVES ONE HUNDRED FIFTH CONGRESS SECOND SESSION JUNE 17, 1998 [No. C3 116 Justin Gillis and Rick Weiss, "Private Firm Aims to Beat Government in Gene Plan," The Washington Post, May 12, 1998, p.66] Printed for the use of the Committee on Science U. GOVERNMENT PRINTING OFFICE 51-217CC WASHINGTON : 1998 For sale by the U. Government Printing Office Superintendent of Documents, Congressional Sales Office, Washington, DC 20402 ISBN 0-16-057661-X COMMITTEE ON SCIENCE F. Al 118 Clive Cookson, "Genetic mapping triggers contest: Academics race private enterprise," The New York Times, May 12, 1998, p.

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Craig Venter, et al., "Shotgun Sequencing of the Human Genome," Science 280, 1540 (June 5, 1998) 110 Nicholas Wade, "Scientist's Plan: Map All DNA Within 3 Years," The New York Times, May 10, 1998, p.

97 Concern About Release of Data to the Public 98 Recommendations for Restructuring the Federal Human Genome Project 98 Democratic Member Questions: Availability of Genomic Information to the Scientific Community 99 Timeliness of Release of and Compensation for Human DNA Sequence Data 99 Plans to Patent Genomic Sequences 100 Uniqueness of Expressed Sequence Tags 100 Role of DOE and NIH in Collaboration with Private-Sector Venture 101 Restrictions on Researchers' Ability to Obtain Human DNA Sequence Information 101 (IV) Page Relation of New Venture to the Federally-Funded Human Genome Sequencing Effort 102 Dr. Galas, President and Chief Scientific Officer, Chiroscience R&D Inc: Republican Member Questions: Practical Value of Federal Completion of Entire Human Genome Se- quencing Process 103 Democratic Member Questions: Impact on Current Efforts 104 Importance of Genomic Data That May Be Withheld 104 Reasonable Fees and Conditions to Private-Controlled Genetic Informa- tion 104 Rights of Individuals' Privacy and Compensation Issues 105 Dr. Olson, Professor of Medical Grenetics and Genetics, Department of Molecular Biotechnology, and Director, Genome Center, University of Washington: Democratic Member Questions: Concerns About Ability to Access Genomic Information 106 Impact on Current Efforts 107 Importance of Genomic Data That May Be Withheld 107 Reasonable Fees and Conditions to Private-Controlled Genetic Informa- tion 107 Rights of Individuals' Privacy and Compensation Issues 108 Appendix 2: Additional Materials for the Record J.

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