COMMUNICATING TOXICOGENOMICS INFORMATION TO NONEXPERTS

A Workshop Summary

Committee on Communicating Toxicogenomics Information to Nonexperts

Committee on Emerging Issues and Data on Environmental Contaminants

Board on Environmental Studies and Toxicology

Board on Life Studies

Division on Earth and Life Studies

NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary COMMUNICATING TOXICOGENOMICS INFORMATION TO NONEXPERTS A Workshop Summary Committee on Communicating Toxicogenomics Information to Nonexperts Committee on Emerging Issues and Data on Environmental Contaminants Board on Environmental Studies and Toxicology Board on Life Studies Division on Earth and Life Studies NATIONAL RESEARCH COUNCIL OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 NOTICE: The project that is the subject of this workshop summary was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the workshop summary were chosen for their special competences and with regard for appropriate balance. This project was supported by Contract No. N01-OD-4-2139 between the National Academy of Sciences and the National Institute of Environmental Health Sciences. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. International Standard Book Number 0-309-09538-7 Additional copies of this workshop summary are available from: The National Academies Press 500 Fifth Street, NW Box 285 Washington, DC 20055 800-624-6242 202-334-3313 (in the Washington metropolitan area) http://www.nap.edu Copyright 2005 by the National Academy of Sciences. All rights reserved. Printed in the United States of America

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council www.national-academies.org

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary COMMITTEE ON COMMUNICATING TOXICOGENOMICS INFORMATION TO NONEXPERTS Members MARK A. ROTHSTEIN (Chair), University of Louisville School of Medicine, KY PATRICIA A. BUFFLER, University of California, Berkeley LINDA C. FENTIMAN, Pace University School of Law, White Plains, NY WILLIAM F. GREENLEE, CIIT Centers for Health Research, Research Triangle Park, NC ROBERT J. GRIFFIN, Marquette University, Milwaukee, WI Staff MARILEE K. SHELTON-DAVENPORT, Program Director ROBERTA M. WEDGE, Program Director NORMAN GROSSBLATT, Senior Editor JENNIFER E. SAUNDERS, Research Associate MIRSADA KARALIC-LONCAREVIC, Research Associate LUCY V. FUSCO, Senior Project Assistant Sponsor NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary COMMITTEE ON EMERGING ISSUES AND DATA ON ENVIRONMENTAL CONTAMINANTS Members DAVID L. EATON (Chair), University of Washington, Seattle WILLIAM F. GREENLEE (Vice Chair), CIIT Centers for Health Research, Research Triangle Park, NC N. LEIGH ANDERSON, Plasma Proteome Institute, Washington, DC PATRICIA A. BUFFLER, University of California, Berkeley JAMES S. BUS, Dow Chemical Company, Midland, MI GEORGIA M. DUNSTON, Howard University, Washington, DC LINDA C. FENTIMAN, Pace University School of Law, White Plains, NY LINDA E. GREER, Natural Resources Defense Council, Washington, DC ROBERT J. GRIFFIN, Marquette University, Milwaukee, WI JOHN D. GROOPMAN, Johns Hopkins University, Baltimore, MD CASIMIR A. KULIKOWSKI, Rutgers University, New Brunswick, NJ SERRINE S. LAU, University of Arizona, Tucson PHILIP LEDER, Harvard Medical School, Boston, MA JOHN A. MOORE, Hollyhouse, Inc., Wicomico Church, VA FREDERICA P. PERERA, Columbia University, New York, NY JOHN QUACKENBUSH, Institute for Genomic Research, Rockville, MD KENNETH S. RAMOS, University of Louisville, Louisville, KY BING REN, University of California, San Diego, La Jolla, CA MARK A. ROTHSTEIN, University of Louisville School of Medicine, Louisville, KY ELLEN K. SILBERGELD, Johns Hopkins University, Baltimore, MD CHERYL L. WALKER, University of Texas, Smithville RUSSELL D. WOLFINGER, SAS Institute, Inc., Cary, NC TIMOTHY R. ZACHAREWSKI, Michigan State University, East Lansing Staff MARILEE K. SHELTON-DAVENPORT, Program Director ROBERTA M. WEDGE, Program Director JENNIFER E. SAUNDERS, Research Associate LUCY V. FUSCO, Senior Project Assistant

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary BOARD ON ENVIRONMENTAL STUDIES AND TOXICOLOGY Members JONATHAN M. SAMET (Chair), The Johns Hopkins University, Baltimore, MD RAMÓN ALVAREZ, Environmental Defense, Austin, TX THOMAS BURKE, The Johns Hopkins University, Baltimore, MD JUDITH C. CHOW, Desert Research Institute, Reno, NV RORY B. CONOLLY, CIIT Centers for Health Research, Research Triangle Park, NC COSTEL D. DENSON, University of Delaware, Newark E. DONALD ELLIOTT, Willkie Farr & Gallagher LLP, Washington, DC CHRISTOPHER B. FIELD, Carnegie Institution of Washington, Stanford, CA SHERRI W. GOODMAN, Center for Naval Analyses, Alexandria, VA JUDITH A. GRAHAM, American Chemistry Council, Arlington, VA DANIEL S. GREENBAUM, Health Effects Institute, Cambridge, MA ROBERT HUGGETT, Michigan State University, East Lansing BARRY L. JOHNSON, Emory University, Atlanta, GA JAMES H. JOHNSON, Howard University, Washington, DC JUDITH L. MEYER, University of Georgia, Athens PATRICK Y. O’BRIEN, ChevronTexaco Energy Technology Company, Richmond, CA DOROTHY E. PATTON, International Life Sciences Institute, Washington, DC STEWARD T.A. PICKETT, Institute of Ecosystem Studies, Millbrook, NY JOSEPH V. RODRICKS, ENVIRON Corporation, Arlington, VA ARMISTEAD G. RUSSELL, Georgia Institute of Technology, Atlanta MITCHELL J. SMALL, Carnegie Mellon University, Pittsburgh, PA LISA SPEER, Natural Resources Defense Council, New York, NY KIMBERLY M. THOMPSON, Harvard School of Public Health, Boston, MA G. DAVID TILMAN, University of Minnesota, St. Paul CHRIS G. WHIPPLE, ENVIRON Corporation, Emeryville, CA LAUREN A. ZEISE, California Environmental Protection Agency, Oakland Senior Staff JAMES J. REISA, Director DAVID J. POLICANSKY, Scholar RAYMOND A. WASSEL, Senior Program Officer for Environmental Sciences and Engineering KULBIR BAKSHI, Senior Program Officer for Toxicology ROBERTA M. WEDGE, Senior Program Officer for Risk Analysis K. JOHN HOLMES, Senior Program Officer SUSAN N.J. MARTEL, Senior Program Officer SUZANNE VAN DRUNICK, Senior Program Officer EILEEN N. ABT, Senior Program Officer ELLEN K. MANTUS, Senior Program Officer RUTH E. CROSSGROVE, Senior Editor

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary BOARD ON LIFE SCIENCES Members COREY S. GOODMAN (Chair), Renovis Inc., South San Francisco, CA ANN M. ARVIN, Stanford University School of Medicine, Stanford, CA JEFFREY L. BENNETZEN, University of Georgia, Athens RUTH BERKELMAN, Emory University, Atlanta, GA R. ALTA CHARO, University of Wisconsin, Madison DENNIS CHOI, Merck Research Laboratories, West Point, PA JEFFREY L. DANGL, University of North Carolina, Chapel Hill PAUL R. EHRLICH, Stanford University, Palo Alto, CA JAMES M. GENTILE, Hope College, Holland, MI ED HARLOW, Harvard Medical School, Boston, MA DAVID HILLIS, University of Texas, Austin KENNETH F. KELLER, University of Minnesota, Minneapolis RANDALL MURCH, Institute for Defense Analyses, Alexandria, VA GREGORY A. PETSKO, Brandeis University, Waltham, MA STUART L. PIMM, Duke University, Durham, NC BARBARA A. SCHAAL, Washington University, St. Louis, MO JAMES TIEDJE, Michigan State University, East Lansing, MI KEITH YAMAMOTO, University of California, San Francisco Senior Staff FRANCES E. SHARPLES, Director KERRY A. BRENNER, Senior Program Officer ROBIN A. SCHOEN, Senior Program Officer MARILEE K. SHELTON-DAVENPORT, Senior Program Officer ROBERT T. YUAN, Senior Program Officer

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary Preface Toxicogenomics, the study of how genomes respond to exposure to toxicants, may ultimately hold the promise of detecting changes in the expression of a person's genes if he or she is exposed to these toxicants. As the technology rapidly develops, it is critical that scientists and the public communicate about the promises and limitations of this new field. Communicating technical information to the public about a developing science can be challenging, particularly when the applications of that science are not yet well understood. The Committee on Communicating Toxicogenomics Information to Nonexperts designed a workshop to consider strategies for communicating toxicogenomic information to the public and other nonexpert audiences, specifically addressing the communication of some key social, ethical, and legal issues related to toxicogenomics and addressing how information related to the social implications of toxicogenomics might be perceived by nonexperts. This workshop summary has been reviewed in draft form by persons chosen for their diverse perspectives and technical expertise in accordance with procedures approved by the National Research Council’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published workshop summary as sound as possible and to ensure that the summary meets institutional standards of objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following people for their review of this workshop summary: Marcia Lawson,

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary American Chemistry Council; Katherine McComas, Cornell University; Frederica Perera, Columbia University; and Kasisomayajula Viswanath, Harvard School of Public Health. Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations, nor did they see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by Rogene Henderson, Lovelace Respiratory Research Institute. Appointed by the National Research Council, she was responsible for making certain that an independent examination of the workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of the workshop summary rests entirely with the committee and the institution. The committee gratefully acknowledges the following people for making presentations at the workshop: Julie Downs, Carnegie Mellon University; Sharon Dunwoody, University of Wisconsin-Madison; William Freudenburg, University of California, Santa Barbara; Deirdre Lawrence, National Cancer Institute; Susanna Hornig Priest, University of South Carolina; David Ropeik, Harvard Center for Risk Analysis; Craig Trumbo, University of Vermont; and Kasisomayajula Viswanath, Harvard School of Public Health. The committee is grateful for the assistance of the NRC staff in preparing this workshop summary: Roberta Wedge and Marilee Shelton-Davenport, project directors; James Reisa, director of the Board on Environmental Studies and Toxicology; Fran Sharples, director of the Board on Life Sciences; Jennifer Saunders and Mirsada Karalic-Loncarevic, research associates; Ruth E. Crossgrove and Norman Grossblatt, senior editors; Lucy Fusco, senior project assistant; and Sam Bardley, library assistant. Finally, I thank the members of the committee for their dedicated efforts throughout the development of this workshop summary. Mark A. Rothstein Chair, Committee on Communicating Toxicogenomics Information to Nonexperts

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Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary Contents     ABSTRACT   3     SUMMARY OF THE WORKSHOP   5      Overview   5      Introduction to Toxicogenomics   10      Risk Communication   11      Sufficiency of Information   18      Capacity to Access and Understand Information   25      Emotional Responses to Risks   27      Trust in Scientific and Government Agencies and Mass-Media Organizations   28      Wrap Up: Developing Tools for Effective Toxicogenomics Communication   29      References   34     APPENDIXES     A:   Statement of Task   37 B:   Workshop Agenda   39 C:   Biographical Information on the Committee on Communicating Toxicogenomics Information to Nonexperts: A Workshop Summary   42 D:   Biographical Information on the Workshop Speakers   45

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