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Research Ethics in Complex Humanitarian Emergencies

SUMMARY OF A WORKSHOP

Holly Reed,

Rapporteur

Roundtable on the Demography of Forced Migration

Committee on Population

National Research Council

NATIONAL ACADEMY PRESS
Washington, DC



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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop Research Ethics in Complex Humanitarian Emergencies SUMMARY OF A WORKSHOP Holly Reed, Rapporteur Roundtable on the Demography of Forced Migration Committee on Population National Research Council NATIONAL ACADEMY PRESS Washington, DC

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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop NOTICE: The project that is the subject of this report 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 report were chosen for their special competences and with regard for appropriate balance. This study was supported by a grant to the National Academy of Sciences by the Andrew W. Mellon Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author and do not necessarily reflect the views of the organization that provided support for the project. International Standard Book Number 0-309-08493-8 Additional copies of this report are available from National Academy Press 2101 Constitution Avenue, NW Box 285 Washington, DC 20055 800/624-6242 202/334-3313 (in the Washington Metropolitan Area) <http://www.nap.edu> Copyright 2002 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. Suggested citation: National Research Council (2002). Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop. Holly Reed, Rapporteur, Roundtable on the Demography of Forced Migration, Committee on Population. Washington, DC: National Academy Press.

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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council 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 chairman and vice chairman, respectively, of the National Research Council.

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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop ROUNDTABLE ON THE DEMOGRAPHY OF FORCED MIGRATION CHARLES B. KEELY (Chair), Institute for the Study of International Migration, Georgetown University LINDA BARTLETT, Division of Reproductive Health, Centers for Disease Control and Prevention, Atlanta RICHARD BLACK, Center for Development and Environment, University of Sussex STEPHEN CASTLES, Refugee Studies Centre, University of Oxford WILLIAM GARVELINK, Bureau of Humanitarian Response, U.S. Agency for International Development, Washington, DC ANDRE GRIEKSPOOR, Emergency and Humanitarian Action Department, World Health Organization, Geneva JOHN HAMMOCK, Feinstein International Famine Center, Tufts University BELA HOVY, Program Coordination Section, United Nations High Commissioner for Refugees, Geneva JENNIFER LEANING, School of Public Health, Harvard University DOMINIQUE LEGROS, Epicentre, Médecins Sans Frontières, Paris NANCY LINDBORG, Mercy Corps, Washington, DC PAULA REED LYNCH, Bureau of Population, Refugees, and Migration, U.S. Department of State, Washington, DC CAROLYN MAKINSON, The Andrew W. Mellon Foundation, New York SUSAN F. MARTIN, Institute for the Study of International Migration, Georgetown University W. COURTLAND ROBINSON, Center for Refugee and Disaster Studies, Johns Hopkins University SHARON STANTON RUSSELL, Center for International Studies, Massachusetts Institute of Technology WILLIAM SELTZER, Department of Sociology and Anthropology, Fordham University PAUL SPIEGEL, International Emergency and Refugee Health Branch, Centers for Disease Control and Prevention, Atlanta RONALD WALDMAN, Joseph L. Mailman School of Public Health, Columbia University ANTHONY ZWI, Health Policy Unit, London School of Hygiene and Tropical Medicine HOLLY REED, Program Officer

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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop COMMITTEE ON POPULATION JANE MENKEN (Chair), Institute of Behavioral Sciences, University of Colorado, Boulder ELLEN BRENNAN-GALVIN, Woodrow Wilson Center for International Scholars, Washington, DC JANET CURRIE, Department of Economics, University of California, Los Angeles JOHN N. HOBCRAFT, Population Investigation Committee, London School of Economics F. THOMAS JUSTER, Institute for Social Research, University of Michigan, Ann Arbor CHARLES B. KEELY, Institute for the Study of International Migration, Georgetown University DAVID I. KERTZER, Department of Anthropology, Brown University DAVID A. LAM, Population Studies Center, University of Michigan, Ann Arbor CYNTHIA LLOYD, The Population Council, New York W. HENRY MOSLEY, Department of Population and Family Health Sciences, Johns Hopkins University ALBERTO PALLONI, Center for Demography and Ecology, University of Wisconsin, Madison JAMES W. VAUPEL, Max Planck Institute for Demographic Research, Rostock, Germany KENNETH W. WACHTER, Department of Demography, University of California, Berkeley LINDA J. WAITE, Population Research Center, University of Chicago BARNEY COHEN, Director

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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop Preface The Roundtable on the Demography of Forced Migration was established by the Committee on Population of the National Research Council in 1999. The roundtable is composed of experts from academia, government, philanthropy, and international organizations. The roundtable’s purpose is to serve as an interdisciplinary, nonpartisan focal point for taking stock of what is known about demographic patterns in refugee situations, to apply this knowledge base to assist both policy makers and relief workers, and to stimulate new directions for innovation and scientific inquiry in this growing field of study. Charles B. Keely of Georgetown University serves as chair of the roundtable, and we thank him for his leadership and guidance of the group’s activities. The roundtable meets yearly and has also organized a series of workshops (held concurrently with roundtable meetings) on some of the specific aspects of the demography of refugee and refugee-like situations, including mortality patterns, demographic assessment techniques, and research ethics in complex humanitarian emergencies. For more information about the roundtable and its activities, please contact Holly Reed, program officer for the Committee on Population (202-334-3167; hreed@nas.edu). This report to the Roundtable on the Demography of Forced Migration is the summary of one such workshop, which was held on October 18, 2001, under the auspices of the Committee on Population. The purpose of this meeting was to discuss whether it is ethical to do research among displaced populations. Participants explored the moral issues encountered

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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop when conducting research among refugee and internally displaced populations during and in the aftermath of a complex humanitarian emergency. Although many types of research are becoming more common in these settings, specific ethical guidelines for such research do not exist. Research in crisis situations may entail special challenges in terms of ethics, and the workshop attempted to examine some of these challenges. This project was funded with a grant from the Andrew W. Mellon Foundation. We thank Carolyn Makinson, population program officer at the Mellon Foundation, for her support and enthusiasm for the roundtable’s work. Holly Reed authored the report. Christine Chen handled the arrangements for the workshop and Ana-Maria Ignat managed the manuscript during editing and review. This work was carried out under the general direction of Barney Cohen. We also thank Christine McShane, of the reports office of the Division of Behavioral, Social Sciences, and Education, for editing the report. Any opinions, findings, conclusions or recommendations expressed in this publication are solely those of the individual workshop participants and do not necessarily reflect the view of the organization that provided support for the project nor of the National Research Council (NRC). This workshop summary has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the Report Review Committee of the National Research Council. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this report: Jonathan D. Moreno, Center for Biomedical Ethics, University of Virginia; Anne Petersen, W.K. Kellogg Foundation, Battle Creek, Michigan; and Robert Sprague, Department of Kinesiology, College of Applied Life Studies, University of Illinois (emeritus). Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the content of the report nor did they see the final draft of the report before its release. The review of this report was overseen by David I. Kertzer, Department of Anthropology, Brown University. Appointed by the National Research

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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop Council, he was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the author and the institution. Jane Menken, Chair Committee on Population

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Research Ethics in Complex Humanitarian Emergencies: Summary of a Workshop Contents     Ethical Approaches   1     The Example of Liberia   3     Ethical Norms   4     Social and Demographic Categories   6     Informed Consent   8     Risks and Benefits   10     Summary and Final Discussion   11     Key Suggestions by Participants   11     Appendix: Workshop Agenda and Participants   13

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