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The National Bioethics Advisory Commission Contributing to Public Policy

The National Bioethics Advisory Commission Contributing to Public Policy

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Published by Bogdan Vasile

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Published by: Bogdan Vasile on Jan 23, 2012
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R
Science and Technology Policy Institute
E
LISA 
E
ISEMAN
Prepared for the
National Bioethics Advisory Commission
The National Bioethics Advisory Commission
CONTRIBUTINGTO PUBLIC POLICY 
 
The research described in this report was conducted by RAND’sScience and Technology Policy Institute for the National Bioethics Advisory Commission.RAND is a nonprofit institution that helps improve policy anddecisionmaking through research and analysis. RAND
®
is aregistered trademark.RAND’s publications do not necessarily reflectthe opinions or policies of its research sponsors.
© Copyright 2003 RAND
 All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without permission in writing from RAND.Published 2003 by RAND1700 Main Street, P.O. Box 2138, Santa Monica, CA 90407-21381200 South Hayes Street, Arlington, VA 22202-5050201 North Craig Street, Suite 202, Pittsburgh, PA 15213-1516RAND URL: http://www.rand.org/To order RAND documents or to obtain additional information,contact Distribution Services: Telephone: (310) 451-7002;Fax: (310) 451-6915; Email: order@rand.org 
Library of Congress Cataloging-in-Publication Data
Eiseman, Elisa.The National Bioethics Advisory Commission : contributing to public policy / Elisa Eiseman.p. cm.“MR-1546.”Includes bibliographical references.ISBN 0-8330-3364-6 (pbk. : alk. paper)1. Bioethics—Government policy—United States. 2. Medical ethics—Government policy—United States.[DNLM: 1. United States. National Bioethics Advisory Commission. 2.Biomedical Research. 3. Bioethical Issues. 4. Biomedical Research. 5. Cloning,Organism. 6. Human Experimentation. 7. Public Policy. W 20.5 E36n 2003] I.Rand Corporation. II.Title.QH332.E36 2003174'.957'0973—dc212003008549
 About the cover:The picture portrays nature,science,and the impact of man on both."DNA Nucleotides between Dogwood & the Judas Tree," stoneware wall plaque,by Jane W.Larson,Bethesda,MD.Photograph by Philippe C.Bishop.
 
iii
PREFACE
The National Bioethics Advisory Commission (NBAC) was estab-lished by Executive Order 12975 in October 1995 to advise the Na-tional Science and Technology Council and other appropriate gov-ernment entities regarding “bioethical issues arising from researchon human biology and behavior.” NBAC was established in responseto proposals by the National Institutes of Health (NIH), the Depart-ment of Energy, and other research-oriented agencies; recommen-dations of the Advisory Committee on Human Radiation Experi-ments (ACHRE); and a recognized need by the White House Office of Science and Technology Policy (OSTP) for a national commission toaddress a broad set of ethical issues, including genetic privacy andthe protection of human research subjects. NBAC met for the firsttime on October 4, 1996. On October 3, 2001, the commission’s char-ter expired, and NBAC’s tenure ended. Over that five-year period,NBAC met 48 times and submitted six major reports to the WhiteHouse. NBAC’s six reports covered topics ranging from cloning hu-man beings and stem cell research to research with human biologicalmaterials and the protection of human participants in research. As part of an Intergovernmental Personnel Act (IPA) agreement be-tween RAND and NBAC, the author of this report tracked the re-sponse to the six NBAC reports and the recommendations they contained from March 2000 until October 2001 when NBAC’s charterexpired. This study was conducted in an effort to assess NBAC’s con-tribution to the policymaking process as it relates to various bioethi-cal and scientific issues. This report describes these documents andprovides a detailed account of the response to each of NBAC’s six re-ports by the White House, Congress, federal and state governments,

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