the human genome project - librarylibrary.cshl.edu/guide-to-hgp/guide.pdf · the annotated...

Editor: Kevin Davies Cold Spring Harbor Laboratory Library & Archives

The Human Genome Project: An Annotated & Interactive Scholarly Guide to the Project in the United States


INTRODUCTION - 2

Editor Kevin Davies Project Leaders Ludmila Pollock Judy Wieber Production Manager Thomas Adams Contributors Brian Dick Robert Wargas Michael Eisenstein Victor McElheny Stephanie Satalino Reviewers Jan Witkowski Rick Myers Robert Cook-Deegan Acknowledgment This project was supported by the National Library of Medicine (NLM) Grants for Scholarly Works in Biomedicine and Health (G13). Project Title: Human Genome Project Documentary History: An Annotated Scholarly Guide to the HGP. PI: Ludmila Pollock Research reported in this publication was supported by the National Library of Medicine of the National Institutes of Health under Award Number G13LM011890-01. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Copyright © 2016 Cold Spring Harbor Laboratory. All rights reserved. Researched, compiled and published by Cold Spring Harbor Laboratory Library & Archives. All World Wide Web addresses are accurate to the best of our knowledge at the time of the printing. ISBN 978-0-9978662-0-9 Extracted: 2016-11-22


INTRODUCTION - 3

1 INTRODUCTION

It is my great pleasure to introduce The Human Genome Project: An Annotated & Scholarly Guide to the Project in the United States. The idea for this annotated scholarly guide to the Human Genome Project (HGP) originated at an international meeting on the history of the HGP that was held in May of 2012 at the Cold Spring Harbor Laboratory’s Banbury Center. This meeting gathered a wide range of participants, including scientists, administrators, authors, publishers, filmmakers, historians, and funders, to consider how best to present the history of the HGP to different audiences. The HGP was the first “big science” project for biological research, and while previous big science projects, such as the Manhattan Project, were documented extensively, we recognized that formal plans to document the HGP had not made at its inception. Thus, this annotated guide is the first step in this direction. The Human Genome Project: An Annotated & Scholarly Guide to the Project in the United States was a natural project for us to take on because of the establishment in 2005 of the Genentech Center for the History of Molecular Biology and Biotechnology at the CSHL Library and Archives and my belief that it is critically important to document the history of these relatively new scientific areas while primary sources and people remain available. We intend this guide as a research tool that historians of medicine and the life sciences, as well as bioethicists and public health officials, can use to locate materials for their research. Represented here is a compendium of a wide range of materials from the HGP covering the years 1977 to 2003, including: a brief history of the HGP; research methods used; ethical, legal, and social implications; grant applications; news items; scientific records, data, and notebooks; relevant meetings and publications; government documents; brief biographies of those involved in the HGP; participating academic, commercial, and governmental organizations; genome maps and sequences; as well as links to other repositories. We are presenting the guide as an e-book/pdf for ease of navigation. And while the current version covers just the United States HGP collections, a future version will be expanded to cover international resources. We are grateful for the grant support of the National Library of Medicine Grants for Scholarly Works in Biomedicine and Health program. Such a large and complex project would not have been possible without the the significant contributions of the Cold Spring Harbor Laboratory Library and Archivies staff—Michael Eisenstein, Brian Dick, Robert Wargas, Clare Clark, and Stephanie Satalino. Co-leaders on this project were Judy Wieber, who collected much of the guide’s content, and Thomas Adams, who oversaw the database and technological aspects. This immense editorial task was undertaken by Kevin Davies, founding editor of Nature Genetics and author of articles and books about the HGP. I hope that scholars and historians will find this initial guide to be a useful resource in planning and completing their own HGP projects, and I look forward to hearing their comments and suggestions for future development of this extensive resource. Ludmila Pollock, Executive Director Genentech Center for the History of Molecular Biology and Biotechnology CSHL Library & Archives


NOTE FROM EDITOR - 4

2 NOTE FROM EDITOR

When the Human Genome Project was officially launched back in 1990, it was envisioned as an international effort that would span 15 years with a price tag of $3 billion -- $1 for each base of the genetic code. After a journal with many twists, turns and tribulations, this extraordinary quest was marked by a White House celebration in June 2000, and the publication of the first drafts of the human genome in February 2001. The Nobel laureate David Baltimore wrote in Nature that he got “chills” reading the manuscript detailing the reference genome for humankind. It is 15 years since those first drafts of the human genome were published. From a solitary reference genome, there are now hundreds of thousands of decoded genomes, thanks to astonishing advances in next-generation sequencing. Our understanding of the biology of the human genome has grown, bolstered by projects that have built upon the foundation of the Human Genome Project, including the International HapMap project, The Cancer Genome Atlas, the ENCODE Project, and many more. There is no shortage of books, review articles, documentaries, and conferences addressing the Human genome Project and its legacy. Is there room for another scholarly effort to add to this abundance of information? We think so. The Annotated Scholarly Guide to the Human Genome Project is a vast, online window into the Human Genome Project. It features a rich, meticulous gathering of resources, information and links to original research, articles, videos and many other materials. The scope spans not only the years bracketing the Project itself, but also the period leading to the launch and events following the Project’s completion. The Annotated Scholarly Guide is the brainchild of Mila Pollock, librarian at the Cold Spring Harbor Laboratory. I am proud to have worked alongside Mila and her team, including contributor Michael Eisenstein, and hope this resource helps scholars and researchers learn more about the conception, history and legacy of the Human Genome Project. Kevin Davies, PhD


PREFACE - 5

3 PREFACE

In February of 1953, Francis Crick and I proclaimed to the patrons of the Eagle pub in Cambridge that we had discovered “the secret of life”—how the structure of DNA carries genetic information. But I don’t think that Francis and I could realize then that just 50 years on, the complete sequence of the three billion base pairs of the human genome would be deciphered and the molecular basis of what it is to be human would be revealed. Certainly, Fred Sanger’s development of the dideoxy chain-termination method of sequencing in 1977 was a critical step in moving us closer to this goal, and so his important achievement marks the starting point for the resources concerning the complex history, science, economics, and politics of the Human Genome Project contained in this extensive guide. Ending with the announcement of the completed human genome sequence in 2003, The Human Genome Project: An Annotated & Scholarly Guide to the Project in the United States constitutes an indispensable research tool for scientific investigators, historians of medicine and the life sciences, as well as bioethicists and public health officials worldwide. My directorship of the National Center for Human Genome Research from 1989 through 1992 was a period in which technologies and bioinformatics approaches were being developed, the U.S. Congress was brought on board with funding, and attention was paid to the social, economic, and moral implications of knowing the sequence of the human genome. Thus, I am very pleased to see documented here the wealth of progress and information, as well as the large number of researchers and organizations involved in this enormous effort, from that nascent period for the Human Genome Project through the completion of the project. Implicit in the information presented here are the future benefits of knowing the structural and functional details of the human genome. Already there are companies that offer consumer genome analysis, and new technologies have made the $1000 genome a reality, with personalized medicine on the near horizon. The journey of research developments and the resources compiled in this guide will most certainly spur further progress and so fulfill the Human Genome Project’s promise to provide the understanding and effective treatment of the diseases that plague the human condition.

Dr. James D. Watson


TABLE OF CONTENTS - 6

4 TABLE OF CONTENTS

1 Introduction ....................................... 3

2 Note from Editor ................................... 4

3 Preface ............................................ 5

4 Table of Contents .................................. 6

4.1 55

5 Using this Guide .................................. 57

5.1 PDF Version ......................................................................................................................................57

5.2 Wiki (Confluence) Version ..............................................................................................................57

6 Effective PDF Navigation .......................... 58

6.1 Links ..................................................................................................................................................58

6.2 Acrobat Bookmarks .........................................................................................................................58

6.3 Acrobat Navigation ..........................................................................................................................59

7 Narratives ........................................ 60

7.1 The Early Years 1990-1997 ..............................................................................................................60 7.1.1 HGP Inception ..............................................................................................................................60 7.1.2 Mapping the Foundations .............................................................................................................61 7.1.3 The First Genome .........................................................................................................................62 7.1.4 New Rules ....................................................................................................................................63 7.1.5 Shifting Strategies .........................................................................................................................63

7.2 Biological Research/Methods Development .................................................................................64 7.2.1 Mapping the Genome ...................................................................................................................64 7.2.2 Planning the Project......................................................................................................................65

7.3 Sequencing Methods/Technology Development ..........................................................................68 7.3.1 DNA Sequencing ..........................................................................................................................68



7.3.2 Women in Sequencing..................................................................................................................69

7.4 Software/Database Development ...................................................................................................70

7.5 Public vs Private: Human Genome Project 1998-2000 .................................................................72 7.5.1 Venter’s Venture ...........................................................................................................................72 7.5.2 Come Fly With Me ........................................................................................................................73 7.5.3 DNA Detente .................................................................................................................................74 7.5.4 The Golden Path ...........................................................................................................................74

7.6 Ethical, Legal, and Social Implications (ELSI) of Genome Research .........................................75 7.6.1 The Origins of ELSI ......................................................................................................................75 7.6.2 Accomplishments of the ELSI Program ........................................................................................77 7.6.3 Questions and controversies ........................................................................................................81 7.6.4 Legacy of the ELSI program .........................................................................................................83

7.7 Evaluation of the HGP .....................................................................................................................84 7.7.1 2001 and Beyond ..........................................................................................................................84 7.7.2 Economic ......................................................................................................................................87

8 Timeline .......................................... 89

8.1 1950s .................................................................................................................................................89 8.1.1 1951 ..............................................................................................................................................89 8.1.2 1953 ..............................................................................................................................................89 8.1.3 1956 ..............................................................................................................................................89 8.1.4 1958 ..............................................................................................................................................89

8.2 1960s .................................................................................................................................................89 8.2.1 1961 ..............................................................................................................................................89 8.2.2 1962 ..............................................................................................................................................90 8.2.3 1964 ..............................................................................................................................................90 8.2.4 1965 ..............................................................................................................................................90 8.2.5 1966 ..............................................................................................................................................90 8.2.6 1967 ..............................................................................................................................................90 8.2.7 1968 ..............................................................................................................................................90

8.3 1970s .................................................................................................................................................90 8.3.1 1970 ..............................................................................................................................................90 8.3.2 1972 ..............................................................................................................................................91 8.3.3 1973 ..............................................................................................................................................91 8.3.4 1975 ..............................................................................................................................................91 8.3.5 1976 ..............................................................................................................................................91 8.3.6 1977 ..............................................................................................................................................91 8.3.7 1978 ..............................................................................................................................................91 8.3.8 1979 ..............................................................................................................................................92

8.4 1980s .................................................................................................................................................92 8.4.1 1980 ..............................................................................................................................................92 8.4.2 1981 ..............................................................................................................................................92 8.4.3 1982 ..............................................................................................................................................92 8.4.4 1983 ..............................................................................................................................................92



8.4.5 1984 ..............................................................................................................................................93 8.4.6 1985 ..............................................................................................................................................93 8.4.7 1986 ..............................................................................................................................................93 8.4.8 1987 ..............................................................................................................................................94 8.4.9 1988 ..............................................................................................................................................94 8.4.10 1989 ..............................................................................................................................................94

8.5 1990s .................................................................................................................................................95 8.5.1 1990 ..............................................................................................................................................95 8.5.2 1991 ..............................................................................................................................................96 8.5.3 1992 ..............................................................................................................................................96 8.5.4 1993 ..............................................................................................................................................97 8.5.5 1994 ..............................................................................................................................................97 8.5.6 1995 ..............................................................................................................................................98 8.5.7 1996 ..............................................................................................................................................98 8.5.8 1997 ..............................................................................................................................................99 8.5.9 1998 ........................................................................................................................................... 100 8.5.10 1999 ........................................................................................................................................... 101

8.6 2000s .............................................................................................................................................. 101 8.6.1 2000 ........................................................................................................................................... 101 8.6.2 2001 ........................................................................................................................................... 102 8.6.3 2002 ........................................................................................................................................... 102 8.6.4 2003 ........................................................................................................................................... 103 8.6.5 2004 ........................................................................................................................................... 103 8.6.6 2005 ........................................................................................................................................... 104 8.6.7 2006 ........................................................................................................................................... 104 8.6.8 2007 ........................................................................................................................................... 104 8.6.9 2008 ........................................................................................................................................... 105 8.6.10 2009 ........................................................................................................................................... 105

8.7 2010s .............................................................................................................................................. 105 8.7.1 2010 ........................................................................................................................................... 105 8.7.2 2011 ........................................................................................................................................... 106 8.7.3 2012 ........................................................................................................................................... 106 8.7.4 2013 ........................................................................................................................................... 106 8.7.5 2014 ........................................................................................................................................... 106 8.7.6 2015 ........................................................................................................................................... 107

9 Organizations .................................... 108

9.1 Companies ..................................................................................................................................... 108 9.1.1 454 Life Sciences ...................................................................................................................... 108 9.1.2 Acadia Pharmaceuticals Inc. ..................................................................................................... 108 9.1.3 Affymetrix ................................................................................................................................... 109 9.1.4 Agilent ........................................................................................................................................ 109 9.1.5 AlphaGene, Inc. ......................................................................................................................... 110 9.1.6 Amersham Pharmacia Biotech .................................................................................................. 111 9.1.7 Amgen ....................................................................................................................................... 111 9.1.8 Ani Pharmaceuticals .................................................................................................................. 111 9.1.9 Applera Corporation................................................................................................................... 112 9.1.10 Applied Biosystems ................................................................................................................... 112



9.1.11 ARCA Biopharma ...................................................................................................................... 113 9.1.12 Arcaris/Ventana Genetics .......................................................................................................... 113 9.1.13 ARIAD (Ariad Pharmaceuticals Inc) .......................................................................................... 114 9.1.14 Array BioPharma ....................................................................................................................... 114 9.1.15 Artemis Pharmaceuticals ........................................................................................................... 115 9.1.16 AstraZeneca Group ................................................................................................................... 115 9.1.17 Atugen ....................................................................................................................................... 116 9.1.18 Aurora Biosciences .................................................................................................................... 116 9.1.19 AVI BioPharma .......................................................................................................................... 117 9.1.20 Axys Pharmaceuticals ............................................................................................................... 117 9.1.21 Baker Hughes ............................................................................................................................ 118 9.1.22 Baker International ..................................................................................................................... 118 9.1.23 Beckman-Coulter ....................................................................................................................... 118 9.1.24 Biacore AB ................................................................................................................................. 119 9.1.25 Biogen ........................................................................................................................................ 120 9.1.26 Biogen Idec ................................................................................................................................ 120 9.1.27 BioSante Pharmaceuticals ........................................................................................................ 120 9.1.28 Boehringer Ingelheim ................................................................................................................ 121 9.1.29 Bolt, Beranek & Newman (BBN) ................................................................................................ 121 9.1.30 Bruker Biosciences .................................................................................................................... 122 9.1.31 Caliper Life Sciences Corporation ............................................................................................. 122 9.1.32 Celera Genomics ....................................................................................................................... 123 9.1.33 Celldex Therapeutics ................................................................................................................. 124 9.1.34 Cell Genesys Inc. ....................................................................................................................... 124 9.1.35 Cepheid ..................................................................................................................................... 125 9.1.36 Cetus Corporation ...................................................................................................................... 125 9.1.37 ChemGenex Pharmaceuticals ................................................................................................... 126 9.1.38 Chiron ........................................................................................................................................ 126 9.1.39 Chondrogene Limited ................................................................................................................ 127 9.1.40 Ciphergen Biosystems ............................................................................................................... 127 9.1.41 Cogent Neuroscience ................................................................................................................ 128 9.1.42 Collaborative Research, Inc. (Genome Therapeutics; Oscient Pharmaceuticals) .................... 128 9.1.43 Commonwealth Biotechnologies ............................................................................................... 129 9.1.44 Compaq ..................................................................................................................................... 129 9.1.45 Complete Genomics .................................................................................................................. 130 9.1.46 Compugen ................................................................................................................................. 130 9.1.47 CuraGen .................................................................................................................................... 131 9.1.48 Cytomyx Holdings plc ................................................................................................................ 131 9.1.49 Cytrx .......................................................................................................................................... 132 9.1.50 deCODE Genetics ..................................................................................................................... 133 9.1.51 Deltagen Inc. .............................................................................................................................. 133 9.1.52 DevGen N.V. .............................................................................................................................. 134 9.1.53 Digene Corporation.................................................................................................................... 134 9.1.54 Digital Gene Technologies ........................................................................................................ 135 9.1.55 Discovery Partners International ............................................................................................... 135 9.1.56 Diversa ....................................................................................................................................... 136 9.1.57 DNAPrint Genomics ................................................................................................................... 137 9.1.58 DuPont ....................................................................................................................................... 137 9.1.59 EG&G Biomolecular ................................................................................................................... 137 9.1.60 Eli Lilly ........................................................................................................................................ 138 9.1.61 EOS Biotechnology .................................................................................................................... 139 9.1.62 Epigenomics .............................................................................................................................. 139 9.1.63 Epoch Biosciences .................................................................................................................... 140 9.1.64 Eurogentec S.A. ......................................................................................................................... 140



9.1.65 EXACT Sciences Corporation ................................................................................................... 141 9.1.66 Exelixis Pharmaceuticals ........................................................................................................... 141 9.1.67 ExonHit Therapeutics ................................................................................................................ 142 9.1.68 Fujifilm Global ............................................................................................................................ 142 9.1.69 Fuji Photo ................................................................................................................................... 143 9.1.70 Galapagos Genomics B.V. ........................................................................................................ 143 9.1.71 GE Healthcare Life Sciences ..................................................................................................... 144 9.1.72 Gemini Research Ltd. ................................................................................................................ 144 9.1.73 Genaera ..................................................................................................................................... 145 9.1.74 Genaissance Pharmaceuticals Inc. ........................................................................................... 145 9.1.75 GeneLink ................................................................................................................................... 146 9.1.76 Gene Logic Inc. .......................................................................................................................... 146 9.1.77 Genencor ................................................................................................................................... 147 9.1.78 Genentech ................................................................................................................................. 148 9.1.79 General Electric ......................................................................................................................... 148 9.1.80 GeneScan Europe AG ............................................................................................................... 148 9.1.81 Genethon ................................................................................................................................... 149 9.1.82 Genetica Inc. .............................................................................................................................. 149 9.1.83 Genetic Technologies Ltd. ......................................................................................................... 150 9.1.84 Genetic Therapy Inc. ................................................................................................................. 150 9.1.85 Genetix ...................................................................................................................................... 151 9.1.86 GeneTrace Systems Inc. ........................................................................................................... 151 9.1.87 Genfit S.A. ................................................................................................................................. 152 9.1.88 GenMark .................................................................................................................................... 152 9.1.89 Genome Corporation ................................................................................................................. 153 9.1.90 GenoMed Inc. ............................................................................................................................ 153 9.1.91 Genome International ................................................................................................................ 154 9.1.92 Genome Therapeutics Corporation ........................................................................................... 154 9.1.93 Genomic Health Inc. .................................................................................................................. 155 9.1.94 Genomics One Corporation ....................................................................................................... 155 9.1.95 Genomyx ................................................................................................................................... 156 9.1.96 Gen-Probe ................................................................................................................................. 156 9.1.97 GenSet ....................................................................................................................................... 157 9.1.98 Genzyme Molecular Oncology .................................................................................................. 157 9.1.99 GlaxoSmithKline (GSK) ............................................................................................................. 158 9.1.100 Glaxo Wellcome ......................................................................................................................... 158 9.1.101 HealthCare Ventures ................................................................................................................. 158 9.1.102 Helicos Biosciences ................................................................................................................... 159 9.1.103 Hewlett Packard ......................................................................................................................... 159 9.1.104 Hitachi ........................................................................................................................................ 160 9.1.105 Hoffmann-La Roche................................................................................................................... 160 9.1.106 Human Genome Sciences ......................................................................................................... 161 9.1.107 HySeq ........................................................................................................................................ 161 9.1.108 IBM............................................................................................................................................. 162 9.1.109 Illumina ...................................................................................................................................... 162 9.1.110 Immucor ..................................................................................................................................... 163 9.1.111 Incyte Genomics ........................................................................................................................ 163 9.1.112 IntelliGenetics ............................................................................................................................ 164 9.1.113 Invitrogen ................................................................................................................................... 164 9.1.114 Lifecodes ................................................................................................................................... 164 9.1.115 Life Technologies ....................................................................................................................... 165 9.1.116 Lynx Pharmaceuticals................................................................................................................ 165 9.1.117 MedImmune ............................................................................................................................... 166 9.1.118 Merck & Co. ............................................................................................................................... 166



9.1.119 Merck KGaA .............................................................................................................................. 167 9.1.120 Merck Serono ............................................................................................................................ 167 9.1.121 Microsoft Corporation ................................................................................................................ 167 9.1.122 Millennium Pharmaceuticals ...................................................................................................... 168 9.1.123 Mitsui Knowledge Industry ......................................................................................................... 168 9.1.124 Myriad Genetics ......................................................................................................................... 168 9.1.125 Neurome .................................................................................................................................... 169 9.1.126 New England Biolabs................................................................................................................. 169 9.1.127 Novartis International ................................................................................................................. 169 9.1.128 Nuvelo ........................................................................................................................................ 170 9.1.129 OpGen ....................................................................................................................................... 170 9.1.130 Oxford Nanopore Technologies ................................................................................................. 170 9.1.131 Pacific Biosciences .................................................................................................................... 171 9.1.132 PE Applied Biosystems ............................................................................................................. 171 9.1.133 Perkin Elmer .............................................................................................................................. 171 9.1.134 Perlegen .................................................................................................................................... 172 9.1.135 Pfizer .......................................................................................................................................... 172 9.1.136 Pharmacia .................................................................................................................................. 173 9.1.137 Promega .................................................................................................................................... 173 9.1.138 Qiagen ....................................................................................................................................... 174 9.1.139 Quest Diagnostics ...................................................................................................................... 174 9.1.140 Raytheon BBN Technologies .................................................................................................... 174 9.1.141 Research Genetics .................................................................................................................... 175 9.1.142 Roche Holding AG ..................................................................................................................... 175 9.1.143 Roche Molecular Diagnostics .................................................................................................... 175 9.1.144 Rosetta Inpharmatics ................................................................................................................. 176 9.1.145 Seiko .......................................................................................................................................... 176 9.1.146 Sequana .................................................................................................................................... 177 9.1.147 Sequenom ................................................................................................................................. 177 9.1.148 Serono ....................................................................................................................................... 177 9.1.149 SmithKline Beecham ................................................................................................................. 178 9.1.150 Solexa ........................................................................................................................................ 178 9.1.151 Summa Corporation................................................................................................................... 179 9.1.152 Synthetic Genomics ................................................................................................................... 179 9.1.153 Takeda ....................................................................................................................................... 179 9.1.154 Thermo Fisher Scientific ............................................................................................................ 180 9.1.155 Time Logic ................................................................................................................................. 180 9.1.156 URS Corporation ....................................................................................................................... 180 9.1.157 Verenium Corporation ............................................................................................................... 181 9.1.158 Vertex Pharmaceuticals ............................................................................................................. 181 9.1.159 Wellcome plc ............................................................................................................................. 182

9.2 Foundations/Charities .................................................................................................................. 182 9.2.1 Association Francaise contre les Myopathies (AFM) ................................................................ 182 9.2.2 Atomic Bomb Casualty Commission (ABCC) ............................................................................ 183 9.2.3 Centre d’Etude du Polymorphisme Humaine (CEPH) ............................................................... 183 9.2.4 CIBA Foundation ....................................................................................................................... 183 9.2.5 Hoffman Foundation .................................................................................................................. 184 9.2.6 Howard Hughes Medical Institute (HHMI) ................................................................................. 184 9.2.7 Imperial Cancer Research Fund (ICRF) .................................................................................... 184 9.2.8 James S. McDonnell Foundation ............................................................................................... 185 9.2.9 Louis Jeantet Foundation .......................................................................................................... 185 9.2.10 March of Dimes .......................................................................................................................... 185 9.2.11 Markey Charitable Trust ............................................................................................................ 185



9.2.12 Marshfield Medical Research Foundation ................................................................................. 186 9.2.13 Radiation Effects Research Foundation (RERF) ....................................................................... 186 9.2.14 The Wellcome Trust ................................................................................................................... 187

9.3 Government Agencies/Departments ........................................................................................... 187 9.3.1 Atomic Energy Commission (AEC) ............................................................................................ 187 9.3.2 Beijing Genomics Institute (BGI) ............................................................................................... 187 9.3.3 Biomedical Ethics Advisory Committee (BEAC) ........................................................................ 188 9.3.4 Biomedical Ethics Board ............................................................................................................ 188 9.3.5 BIONET ..................................................................................................................................... 188 9.3.6 Biotechnology Science Coordinating Committee (BSCC) ......................................................... 189 9.3.7 Brookhaven National Laboratory ............................................................................................... 189 9.3.8 Centers for Disease Control ...................................................................................................... 189 9.3.9 Chinese Academy of Sciences (CAS) ....................................................................................... 190 9.3.10 CNRS ......................................................................................................................................... 190 9.3.11 ELSI Research, Planning and Evaluation Group (ERPEG) ...................................................... 190 9.3.12 Equal Employment Opportunity Commission (EEOC) .............................................................. 190 9.3.13 European Bioinformatics Institute .............................................................................................. 190 9.3.14 European Community (EC) ....................................................................................................... 191 9.3.15 European Molecular Biology Laboratory (EMBL) ...................................................................... 191 9.3.16 European Molecular Biology Organization (EMBO) .................................................................. 191 9.3.17 European Patent Office ............................................................................................................. 192 9.3.18 European Science Foundation (ESF) ........................................................................................ 192 9.3.19 Federal Bureau of Investigation (FBI) ........................................................................................ 192 9.3.20 GenBank .................................................................................................................................... 193 9.3.21 Genoscope ................................................................................................................................ 193 9.3.22 German Research Centre for Biotechnology (GBF) .................................................................. 193 9.3.23 Health and Environmental Research Advisory Committee (HERAC) ....................................... 194 9.3.24 Human Fetal Tissue Transplantation Research Panel .............................................................. 194 9.3.25 Human Genome Organization (HUGO) ..................................................................................... 194 9.3.26 International Human Genome Sequencing Consortium ............................................................ 195 9.3.27 Joint Genome Institute ............................................................................................................... 195 9.3.28 Joint Working Group on Ethical, Legal and Social Implications (ELSI) of Human Genome

Research .............................................................................................................................. 195 9.3.29 Laboratory of Molecular Biology, Cambridge (LMB) ................................................................. 195 9.3.30 Lawrence Berkeley National Laboratory ................................................................................... 196 9.3.31 Lawrence Livermore National Laboratory.................................................................................. 196 9.3.32 Los Alamos National Laboratory ............................................................................................... 196 9.3.33 Medical Research Council (MRC) ............................................................................................. 197 9.3.34 Ministry of Health and Welfare (Japan) ..................................................................................... 197 9.3.35 NASA ......................................................................................................................................... 198 9.3.36 National Academy of Sciences (NAS) ....................................................................................... 198 9.3.37 National Cancer Institute (Canada) ........................................................................................... 198 9.3.38 National Cancer Institute (U.S.) ................................................................................................. 199 9.3.39 National Center for Biotechnology Information (NCBI) .............................................................. 199 9.3.40 National Center for Human Genome Research (NCHGR) ........................................................ 199 9.3.41 National Commission for the Protection of Human Subjects of Biomedical and Behavioral

Research .............................................................................................................................. 200 9.3.42 National Human Genome Research Institute (NHGRI) ............................................................. 200 9.3.43 National Institute of Allergy and Infectious Diseases ................................................................ 200 9.3.44 National Institute of General Medical Sciences (NIGMS) .......................................................... 200 9.3.45 National Institute of Neurological and Communicative Disorders and Stroke (NINCDS) ......... 201 9.3.46 National Institute of Neurological Disorders and Stroke (NINDS) ............................................. 201 9.3.47 National Institutes of Health (NIH) ............................................................................................. 202



9.3.48 National Library of Medicine (NLM) ........................................................................................... 202 9.3.49 National Research Council (NRC) ............................................................................................. 202 9.3.50 National Science Advisory Board for Biosecurity (NSABB)....................................................... 202 9.3.51 National Science Foundation ..................................................................................................... 203 9.3.52 Office of Health and Environmental Research (OHER) ............................................................ 203 9.3.53 Office of Human Genome Research ......................................................................................... 203 9.3.54 Office of Management and Budget (OMB) ................................................................................ 203 9.3.55 Office of Scientific Research and Development (OSRD) .......................................................... 204 9.3.56 Office of Technology Assessment (OTA) .................................................................................. 204 9.3.57 Office of Technology Transfer, NIH (OTT) ................................................................................ 204 9.3.58 Patent and Trademark Office (PTO) .......................................................................................... 205 9.3.59 President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and

Behavioral Research ............................................................................................................ 205 9.3.60 Recombinant DNA Advisory Committee (RAC) ........................................................................ 206 9.3.61 Science and Technology Agency (STA) .................................................................................... 206 9.3.62 Securities and Exchange Commission, U.S. ............................................................................. 206 9.3.63 Task Force on Genetic Information and Insurance ................................................................... 207 9.3.64 U.S. Department of Defense (DOD) .......................................................................................... 207 9.3.65 U.S. Department of Energy (DOE) ............................................................................................ 207 9.3.66 U.S. Department of Health, Education, and Welfare (HEW) ..................................................... 208 9.3.67 U.S. Department of Health and Human Services (HHS) ........................................................... 208 9.3.68 U.S. Geological Survey ............................................................................................................. 208 9.3.69 U.S. House of Representatives ................................................................................................. 208 9.3.70 U.S. Senate ............................................................................................................................... 209 9.3.71 U.S. Supreme Court .................................................................................................................. 209 9.3.72 United Nations Educational, Scientific, and Cultural Organization (UNESCO) ......................... 210 9.3.73 World Health Organization (WHO) ............................................................................................ 210

9.4 Hospitals/Medical Centers ........................................................................................................... 210 9.4.1 Hospital for Sick Children .......................................................................................................... 210 9.4.2 Massachusetts General Hospital ............................................................................................... 211 9.4.3 Northern Genetics Service ........................................................................................................ 211 9.4.4 St. Mary’s Hospital ..................................................................................................................... 212

9.5 Research Institutes/Consortia ..................................................................................................... 212 9.5.1 Arabidopsis Genome Initiative ................................................................................................... 212 9.5.2 Broad Institute ............................................................................................................................ 213 9.5.3 Cold Spring Harbor Laboratory .................................................................................................. 213 9.5.4 Groupement d’Interet Public (GIP) Genopole ........................................................................... 214 9.5.5 Human Genome Resource Center ............................................................................................ 214 9.5.6 Institute for Systems Biology (Seattle) ....................................................................................... 214 9.5.7 Institute of Molecular Biotechnology (Jena) .............................................................................. 215 9.5.8 J. Craig Venter Institute ............................................................................................................. 215 9.5.9 J. Craig Venter Science Foundation (JCVSF) ........................................................................... 215 9.5.10 Jackson Laboratory ................................................................................................................... 215 9.5.11 Kazusa DNA Research Institute ................................................................................................ 216 9.5.12 Marine Biological Laboratory at Woods Hole ............................................................................ 216 9.5.13 Max Planck Institute for Molecular Genetics ............................................................................. 216 9.5.14 Pasteur Institute ......................................................................................................................... 217 9.5.15 RIKEN ........................................................................................................................................ 217 9.5.16 Roswell Park Cancer Institute ................................................................................................... 217 9.5.17 Salk Institute .............................................................................................................................. 217 9.5.18 SNP Consortium ........................................................................................................................ 218



9.5.19 Superconducting Super Collider Consortia ............................................................................... 218 9.5.20 The Center for the Advancement of Genomics (TCAG) ............................................................ 218 9.5.21 The Institute for Genomic Research (TIGR) .............................................................................. 219 9.5.22 Wellcome Trust Sanger Institute ............................................................................................... 219 9.5.23 Whitehead Institute .................................................................................................................... 219

9.6 Societies/Associations ................................................................................................................. 220 9.6.1 American Association for the Advancement of Science (AAAS) ............................................... 220 9.6.2 American Council of Life Insurers (ACLI) .................................................................................. 220 9.6.3 American Society for Microbiology ............................................................................................ 221 9.6.4 American Society of Human Genetics ....................................................................................... 221 9.6.5 Council of the American Society for Biochemistry and Molecular Biology ................................ 221 9.6.6 D.C. Science Writers Association (DCSWA) ............................................................................. 222 9.6.7 Health Insurance Association of America (HIAA) ...................................................................... 222 9.6.8 Industrial Biotechnology Association (IBA) ................................................................................ 223

9.7 Universities and Colleges ............................................................................................................ 223 9.7.1 Baylor College of Medicine ........................................................................................................ 223 9.7.2 California Institute of Technology .............................................................................................. 223 9.7.3 Columbia University ................................................................................................................... 224 9.7.4 Duke University .......................................................................................................................... 224 9.7.5 Harvard University ..................................................................................................................... 224 9.7.6 Johns Hopkins University .......................................................................................................... 225 9.7.7 Keio University ........................................................................................................................... 225 9.7.8 Kent State University ................................................................................................................. 225 9.7.9 Massachusetts Institute of Technology (MIT) ............................................................................ 226 9.7.10 Princeton University ................................................................................................................... 226 9.7.11 Rockefeller University ................................................................................................................ 226 9.7.12 Stanford University .................................................................................................................... 227 9.7.13 University of California, Berkeley ............................................................................................... 227 9.7.14 University of California, San Diego ............................................................................................ 227 9.7.15 University of California, San Francisco ...................................................................................... 228 9.7.16 University of California, Santa Cruz ........................................................................................... 228 9.7.17 University of Cambridge ............................................................................................................ 228 9.7.18 University of Chicago ................................................................................................................. 229 9.7.19 University of Michigan................................................................................................................ 229 9.7.20 University of Oklahoma ............................................................................................................. 229 9.7.21 University of Texas Southwestern Medical Center .................................................................... 229 9.7.22 University of Utah ...................................................................................................................... 230 9.7.23 University of Washington ........................................................................................................... 230 9.7.24 University of Wisconsin.............................................................................................................. 230 9.7.25 Washington University in St. Louis ............................................................................................ 231 9.7.26 Yale University ........................................................................................................................... 231

9.8 Other Organizations ..................................................................................................................... 231 9.8.1 Arnold & Porter .......................................................................................................................... 231 9.8.2 Board on Basic Biology ............................................................................................................. 232 9.8.3 Commission on Life Sciences ................................................................................................... 232 9.8.4 Council for Responsible Genetics ............................................................................................. 232 9.8.5 Delegation for Basic Biomedical Research ............................................................................... 233 9.8.6 Hogan & Hartson ....................................................................................................................... 233 9.8.7 The Church of Jesus Christ of Latter-Day Saints ...................................................................... 233



10 People (by discipline) ........................... 234

10.1 Agency Administrators ................................................................................................................ 234 10.1.1 Adler, Reid ................................................................................................................................. 234 10.1.2 Astrue, Michael .......................................................................................................................... 234 10.1.3 Barataud, Bernard ..................................................................................................................... 235 10.1.4 Barnhart, Benjamin J. ................................................................................................................ 235 10.1.5 Healy, Bernadine ....................................................................................................................... 235 10.1.6 Ismail, Sherille ........................................................................................................................... 236 10.1.7 Jordan, Elke ............................................................................................................................... 236 10.1.8 Kirschstein, Ruth ........................................................................................................................ 236 10.1.9 Levinson, Rachel ....................................................................................................................... 237 10.1.10 Lindberg, Donald A.B................................................................................................................. 237 10.1.11 Raub, William ............................................................................................................................. 237 10.1.12 Shalala, Donna .......................................................................................................................... 237 10.1.13 Sullivan, Louis Wade ................................................................................................................. 238 10.1.14 Vickers, Tony ............................................................................................................................. 238 10.1.15 Wood, Robert ............................................................................................................................. 238 10.1.16 Wyngaarden, James ................................................................................................................. 238

10.2 Book Authors/Journalists ............................................................................................................ 239 10.2.1 Bishop, Jerry .............................................................................................................................. 239 10.2.2 Cobb, Matthew ........................................................................................................................... 239 10.2.3 Cook-Deegan, Robert ................................................................................................................ 240 10.2.4 Courteau, Jacqueline ................................................................................................................. 240 10.2.5 Davies, Kevin ............................................................................................................................. 241 10.2.6 Ferry, Georgina .......................................................................................................................... 241 10.2.7 Holtzman, Neil Anton “Tony” ..................................................................................................... 242 10.2.8 Jordan, Bertrand ........................................................................................................................ 242 10.2.9 Judson, Horace Freeland .......................................................................................................... 243 10.2.10 Lewin, Roger .............................................................................................................................. 243 10.2.11 Maddox, John ............................................................................................................................ 244 10.2.12 McElheny, Victor K. ................................................................................................................... 244 10.2.13 Nelkin, Dorothy .......................................................................................................................... 245 10.2.14 Pines, Maya ............................................................................................................................... 245 10.2.15 Reilly, Philip ............................................................................................................................... 246 10.2.16 Ridley, Matt ................................................................................................................................ 246 10.2.17 Rifkin, Jeremy ............................................................................................................................ 246 10.2.18 Roberts, Leslie ........................................................................................................................... 247 10.2.19 Shreeve, James ......................................................................................................................... 248 10.2.20 Sykes, Bryan .............................................................................................................................. 249 10.2.21 Tancredi, Laurence .................................................................................................................... 249 10.2.22 Tattersall, Ian ............................................................................................................................. 250 10.2.23 Wade, Nicholas .......................................................................................................................... 250 10.2.24 Waldholz, Michael ...................................................................................................................... 254 10.2.25 Wingerson, Lois ......................................................................................................................... 254

10.3 Bioethicists .................................................................................................................................... 254 10.3.1 Andrews, Lori ............................................................................................................................. 254 10.3.2 Annas, George ........................................................................................................................... 254 10.3.3 Asch, Adrienne .......................................................................................................................... 255 10.3.4 Barton, John .............................................................................................................................. 255 10.3.5 Capron, Alexander ..................................................................................................................... 256



10.3.6 Drell, Daniel ............................................................................................................................... 256 10.3.7 Eisenberg, Rebecca .................................................................................................................. 256 10.3.8 Fletcher, John C. ....................................................................................................................... 257 10.3.9 Fujiki, Norio ................................................................................................................................ 257 10.3.10 Gellman, Robert ......................................................................................................................... 258 10.3.11 Juengst, Eric .............................................................................................................................. 258 10.3.12 Kemp, Evan ............................................................................................................................... 258 10.3.13 Kevles, Daniel ............................................................................................................................ 258 10.3.14 King, Patricia .............................................................................................................................. 259 10.3.15 Murray, Thomas ......................................................................................................................... 259 10.3.16 Pellegrino, Edmund ................................................................................................................... 260 10.3.17 Rothstein, Mark .......................................................................................................................... 260 10.3.18 Walters, LeRoy .......................................................................................................................... 260 10.3.19 Wikler, Daniel ............................................................................................................................. 261 10.3.20 Yesley, Michael .......................................................................................................................... 261

10.4 Politicians ...................................................................................................................................... 261 10.4.1 Armstrong, William ..................................................................................................................... 261 10.4.2 Blair, Tony .................................................................................................................................. 262 10.4.3 Bush, George W. ....................................................................................................................... 262 10.4.4 Chiles, Lawton ........................................................................................................................... 262 10.4.5 Chirac, Jacques ......................................................................................................................... 263 10.4.6 Clinton, William J. ...................................................................................................................... 263 10.4.7 Dingell, John .............................................................................................................................. 264 10.4.8 Domenici, Pete .......................................................................................................................... 264 10.4.9 Ford, Wendell ............................................................................................................................ 264 10.4.10 Gorbachev, Mikhail .................................................................................................................... 265 10.4.11 Gore, Albert, Jr. ......................................................................................................................... 265 10.4.12 Hall, Michael .............................................................................................................................. 266 10.4.13 Harkin, Tom ............................................................................................................................... 266 10.4.14 Hatch, Orrin ............................................................................................................................... 266 10.4.15 Hatfield, Mark ............................................................................................................................. 266 10.4.16 Hoyer, Steny .............................................................................................................................. 267 10.4.17 Kennedy, Edward M. ................................................................................................................. 267 10.4.18 Mikulski, Barbara ....................................................................................................................... 268 10.4.19 Murray, Matthew ........................................................................................................................ 268 10.4.20 Natcher, William ......................................................................................................................... 268 10.4.21 Nickles, Don ............................................................................................................................... 269 10.4.22 Obey, David ............................................................................................................................... 269 10.4.23 Pepper, Claude .......................................................................................................................... 269 10.4.24 Reagan, Ronald ......................................................................................................................... 270 10.4.25 Richardson, Bill .......................................................................................................................... 270 10.4.26 Sainsbury, David John ............................................................................................................... 270 10.4.27 Scheuer, James H. .................................................................................................................... 271 10.4.28 Snell, Rand ................................................................................................................................ 271 10.4.29 Stephens, Michael ..................................................................................................................... 271 10.4.30 Weicker, Lowell .......................................................................................................................... 272 10.4.31 Wise, Bob .................................................................................................................................. 272

10.5 Scientists/Engineers..................................................................................................................... 273 10.5.1 Adams, Mark .............................................................................................................................. 273 10.5.2 Alberts, Bruce M. ....................................................................................................................... 273 10.5.3 Ashburner, Michael .................................................................................................................... 274



10.5.4 Baltimore, David ........................................................................................................................ 275 10.5.5 Bentley, David ............................................................................................................................ 275 10.5.6 Berg, Paul .................................................................................................................................. 276 10.5.7 Birney, Ewan .............................................................................................................................. 276 10.5.8 Bodmer, Walter .......................................................................................................................... 276 10.5.9 Botstein, David ........................................................................................................................... 277 10.5.10 Boyer, Herbert ........................................................................................................................... 278 10.5.11 Branscomb, Elbert ..................................................................................................................... 278 10.5.12 Brenner, Sydney ........................................................................................................................ 279 10.5.13 Caskey, C. Thomas ................................................................................................................... 279 10.5.14 Chakrabarty, Ananda ................................................................................................................. 280 10.5.15 Chakravarti, Aravinda ................................................................................................................ 280 10.5.16 Chen, Ellson .............................................................................................................................. 281 10.5.17 Church, Geor

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