Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page R1
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children ETHICAL CONSIDERATIONS FOR RESEARCH ON HOUSING-RELATED HEALTH HAZARDS INVOLVING CHILDREN Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families Bernard Lo and Mary Ellen O’Connell, Editors Board on Children, Youth, and Families Division of Behavioral and Social Sciences and Education NATIONAL RESEARCH COUNCIL AND INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu
OCR for page R2
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children THE NATIONAL ACADEMIES PRESS 500 FIFTH STREET, N.W. Washington, DC 20001 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 Grant No. DCLTS0088-02 between the National Academy of Sciences and the U.S. Department of Housing and Urban Development, Contract No. 254-2004-M-06193 between the National Academy of Sciences and the Centers for Disease Control and Prevention, and Contract No. 68-6-03-081, Task Order No. 10 between the National Academy of Sciences and the Environmental Protection Agency. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. Library of Congress Cataloging-in-Publication Data Ethical considerations for research on housing-related health hazards involving children / Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families ; Bernard Lo and Mary Ellen O’Connell, editors. p. cm. Includes bibliographical references. ISBN 0-309-09726-6 (pbk.)—ISBN 0-309-65265-0 (pdf) 1. Housing and health—Research—Moral and ethical aspects—United States. 2. Children—Housing—Research—Moral and ethical aspects—United States. 3. Poor children—Housing—Research—Moral and ethical aspects—United States. 4. Children—Research—Moral and ethical aspects—United States. 5. Pediatrics—Research—Moral and ethical aspects—United States. 6. Human experimentation in medicine—Moral and ethical aspects—United States. 7. Social sciences—Research—Moral and ethical aspects—United States. I. Lo, Bernard. II. O’Connell, Mary Ellen, 1960- III. National Research Council (U.S.). Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families. RA770.E84 2006 363.5′0973—dc22 2005026115 Additional copies of this report are available from National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. Printed in the United States of America Copyright 2005 by the National Academy of Sciences. All rights reserved. Suggested citation: National Research Council and Institute of Medicine (2005). Ethical Considerations for Research on Housing-Related Health Hazards Involving Children. Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth and Families, Bernard Lo and Mary Ellen O’Connell, Editors. Board on Children, Youth, and Families, Division of Behavioral and Social Sciences and Education and Institute of Medicine. Washington, DC: The National Academies Press.
OCR for page R3
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children 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. Ralph J. Cicerone 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. Ralph J. Cicerone and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org
OCR for page R4
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children This page intentionally left blank.
OCR for page R5
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children COMMITTEE ON ETHICAL ISSUES IN HOUSING-RELATED HEALTH HAZARD RESEARCH INVOLVING CHILDREN, YOUTH, AND FAMILIES BERNARD LO (Chair), Program in Medical Ethics, University of California, San Francisco JOHN L. ADGATE, Division of Environmental Health Sciences, School of Public Health, University of Minnesota GORDON CAVANAUGH, Former General Counsel to the Council of Large Public Housing Authorities GISELLE CORBIE-SMITH, Department of Social Medicine and Medicine, University of North Carolina, Chapel Hill ALAN FLEISCHMAN, The New York Academy of Medicine FERNANDO A. GUERRA, San Antonio Metropolitan Health District DALE HAMMERSCHMIDT, Department of Medicine, University of Minnesota PATRICIA KING, Georgetown University Law Center DAVID KRANTZ,* Department of Psychology, Columbia University BRUCE LANPHEAR, Cincinnati Children’s Hospital Medical Center and University of Cincinnati JACQUELINE PATTERSON, Toxicology Excellence for Risk Assessment, Cincinnati PEGGY SHEPARD, West Harlem Environmental Action, Inc., New York City MICHAEL STEGMAN, Department of Public Policy, University of North Carolina, Chapel Hill MICHAEL WEITZMAN, Department of Pediatrics, University of Rochester BRENDA ESKENAZI, Liaison, Board on Children, Youth, and Families; School of Public Health, University of California, Berkeley MARY ELLEN O’CONNELL, Study Director AMY GAWAD, Research Associate (through December 2004) ELIZABETH TOWNSEND, Senior Program Assistant EMILY LAMOND, Christine Mirzayan Science & Technology Policy Graduate Fellow * Member until February 2005.
OCR for page R6
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children BOARD ON CHILDREN, YOUTH, AND FAMILIES MICHAEL I. COHEN (Chair), Department of Pediatrics, Albert Einstein College of Medicine BARBARA WOLFE (Vice-Chair), Department of Economics and Population, University of Wisconsin JAMES A. BANKS, Center for Multicultural Education, University of Washington, Seattle WILLIAM RIGBY BEARDSLEE, Children’s Hospital, Harvard University P. LINDSAY CHASE-LANSDALE, Institute of Policy Research, Northwestern University THOMAS DEWITT, Children’s Hospital Medical Center of Cincinnati MARY JANE ENGLAND, President’s Office, Regis College, Weston, MA BRENDA ESKENAZI, School of Public Health, University of California, Berkeley CHRISTINE FERGUSON, The Children’s Investment Fund at America’s Promise, Washington, DC PATRICIA GREENFIELD, Department of Psychology, University of California, Los Angeles NEAL HALFON, School of Public Health, University of California, Los Angeles HARRIET KITZMAN, School of Nursing, University of Rochester SUSAN MILLSTEIN, Division of Adolescent Medicine, University of California, San Francisco ELENA NIGHTINGALE, Institute of Medicine, The National Academies GARY D. SANDEFUR, College of Letters and Science, University of Wisconsin-Madison RUTH STEIN, Department of Pediatrics, Albert Einstein College of Medicine LAURENCE STEINBERG, Department of Psychology, Temple University, Philadelphia, PA ELLEN WARTELLA, University of California, Riverside ROSEMARY A. CHALK, Director DEBORAH JOHNSON, Senior Program Assistant
OCR for page R7
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children Acknowledgments This report is the work of the Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families, a project of the National Research Council (NRC). The expertise and hard work of the committee was advanced by the support of our sponsors, the contributions of able consultants and staff, and the input of outside experts and local community representatives. The funding for this project was provided by the U.S. Department of Housing and Urban Development (HUD), the Centers for Disease Control and Prevention (CDC), and the U.S. Environmental Protection Agency (EPA). Susan Cummins, former director of the Board on Children, Youth, and Families, and David Jacobs at HUD helped frame the core questions. Peter Ashley served as HUD’s project officer and provided valuable insights and guidance in framing the project. Mary Jean Brown provided guidance on behalf of the CDC, and William Sanders and Devon Paynes-Sturges facilitated EPA’s involvement in the project after it was under way. Throughout this process, the committee benefited from oral or written presentations by individuals with a range of perspectives: Suzette Baez, The HOME study at Cincinnati Children’s Hospital Medical Center; Mark Barnes, Ropes & Gray; Drue Barrett, CDC; Lynn Battle, Citizens’ Lead Education and Poisoning Prevention; Mae Bradley, Committee for Boston Public Housing; Wilma Brakefield-Caldwell, Community Action Against Asthma; Michael Carome, Office for Human Research Protections, Department of Health and Human Services; Allen Dearry, National Institutes of Health; Mark Farfel, Johns Hopkins University; William Farland, EPA;
OCR for page R8
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children Marilyn Field, Institute of Medicine; Celia Fisher, Fordham University; Marcheta Gillam, Legal Aid, Cincinnati; Leonard Glantz, Boston University; Yvette Holden, New York City Parent; Patricia Hynes, Boston University; Evelyn Joseph, Community Research Group of Mailman School of Public Health and New York State Psychiatric Institute; Loretta Kopelman, East Carolina University; Richard Lichtenstein, University of Michigan; Eric Meslin, Indiana University; Rebecca Morley, National Center for Health Housing; William Reynolds, Children’s Hospital of Philadelphia; Don Ryan; Alliance for Healthy Homes; Susan Saegert, City University of New York; Linda Sheldon, Environmental Protection Agency; Daniel Swartz, Children’s Environmental Health Network; Benjamin Wilfond, National Institutes of Health; and Leslie Wolf, University of California, San Francisco. We thank them all for crucial input to our work. The committee also thanks those who wrote papers or provided technical reviews that were invaluable to the committee’s discussions: Ezekiel J. Emanuel, National Institutes of Health; James Krieger, University of Washington, Harborview Medical Center; Robert Nelson, Children’s Hospital of Philadelphia; Edith Parker, University of Michigan School of Public Health; Sara Quandt, Wake Forest University School of Medicine; William Reynolds, Children’s Hospital of Philadelphia; Joan Sieber, California State University; Angela Thrasher, University of North Carolina; David Wendler, National Institutes of Health; and Leslie Wolf, University of California, San Francisco. This report 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 NRC. 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 study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their review of this report: Doug Brugge, Department of Public Health, Tufts University School of Medicine, Boston, MA; Nancy Neveloff Dubler, Department of Epidemiology and Population Health, Montefiore Medical Center, Bronx, NY; Annette Dula, Women’s Studies, University of Colorado at Boulder; Joel Frader, General Academic Pediatrics, Children’s Memorial Hospital, Chicago, IL; Natalie C.G. Freeman, Center for Environmental and Human Toxicology, University of Florida Gainesville, FL; Marcheta Lee Gillam, Housing, Legal Aid Society of Cincinnati; Leonard H. Glantz, Health Law, Boston University School of Public Health; Jeffrey Kahn, Center for Bioethics, University of Minnesota; and Diane Scott-Jones, Department of Psychology, Boston College.
OCR for page R9
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children 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 report before its release. The review of this report was overseen by James F. Childress, Institute for Practical Ethics, Department of Religious Studies, University of Virginia, and Judith P. Swazey, Founding President and Senior Associate, The Acadia Institute, Bar Harbor, ME. Appointed by the NRC, they were 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 authoring committee and the institution. The committee appreciates the support provided by members of the Board on Children, Youth, and Families under the leadership of Michael I. Cohen. We are grateful for the leadership and support of Michael Feuer, executive director of the NRC’s Division of Behavioral and Social Sciences and Education; Jane Ross, director of the Center for Economic, Governance, and International Studies; and Rosemary Chalk, director of the Board on Children, Youth, and Families. The committee benefited from the support and assistance of several members of the National Academies staff. Amy Gawad provided valuable assistance in collecting, summarizing, and organizing materials and helping draft sections of the report. Elizabeth Townsend managed all administrative aspects of the report. Emily Lamond worked with the committee as a Christine Mirzayan science and technology policy fellow and consultant and provided valuable research assistance. Susan McCutchen helped organize and research references and provided meeting summaries for several of the committee’s meetings. Patti Zettler at the University of California, San Francisco, provided essential background research on a variety of topics. We thank them. Finally, we especially thank the members of the committee for their willingness and dedication in wrestling with an important and complicated issue. Bernard Lo, Chair Mary Ellen O’Connell, Study Director Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families
OCR for page R10
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children This page intentionally left blank.
OCR for page R11
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children Contents PREFACE xvii Executive Summary 1 Nature of the Research, 2 A Systems Approach, 4 Responsibilities of Researchers, 4 Responsibilities of Research Institutions and IRBs, 10 Responsibilities of the Federal Government and Research Sponsors, 11 1 Introduction 13 Issues in Research with Children, 14 Housing Health Hazards Research, 15 Different Assessments of Risks and Benefits, 17 Grimes v. Kennedy Krieger: An Illustrative Case, 18 The Committee’s Study, 19 Building on Other National Academies’ Reports, 20 Report Structure, 23 2 Housing and Health 24 Housing Hazards, 25 Asthma Triggers, 25 Lead, 27 Pesticides, 31
OCR for page R12
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children Environmental Tobacco Smoke, 33 Injuries, 35 Overcrowding, 37 Rural Housing, 37 Risk Disparities, 38 Conclusions, 40 3 Grimes v. Kennedy Krieger Institute: Revisiting the Ethical Issues 41 Background, 42 The Case, 43 Court Rulings, 44 Issues Raised by the Appeals Court Ruling, 45 Duty of Care, 45 Exploitation of Vulnerable Populations, 46 Institutional Review Process, 46 Informed Consent, 47 Research Risks to Children, 48 Ethical Arguments in National Commission Reports, 48 Parental Consent and the Best Interest of the Child, 50 Balancing Risks and Benefits, 51 Current Federal Regulations, 52 Elements of the Common Rule: Subpart A, 53 Additional Protections for Research Involving Children: Subpart D, 54 Subsequent Analysis of Ethical Arguments, 55 Assessing Risks and Benefits, 55 Best Interests of the Child, 58 Conclusions, 60 4 Characteristics of Housing Health Hazards Research 62 The Setting, 63 The Sanctity of the Home, 64 Ethical Issues in Entering a Home, 65 Vulnerable Populations, 67 Ethical Issues, 67 Addressing the Ethical Issues, 69 Risks and Benefits, 70 The Nature of Risk, 70 Therapeutic Misconception, 71 Long-Term Benefits of Research, 71 Different Assessments, 72 Conclusions, 74
OCR for page R13
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children 5 Community Involvement 76 Ethical Framework, 76 Value of Community Involvement, 78 Principles of Community Involvement, 79 Approaches to Community Involvement, 82 Research Staff, 84 Community Consultation or Review, 84 Community Advisory Boards, 85 Community-Based Participatory Research, 86 Evidence About Community Involvement, 91 Issues in Community Involvement, 93 Definition of Community, 93 Identification of Community Representatives, 94 Goals of Community Involvement, 95 Practical Challenges, 96 Conclusions and Recommendations, 97 6 Parental Permission, Consent, and Payment 99 Informed Consent, 99 Parental Permission, 100 Assent, 102 Comprehension of Potential Participants, 103 Interventions to Improve Comprehension, 105 Assessing the Adequacy of Informed Consent, 107 Voluntariness and Undue Influence, 109 Payments, 112 Amounts and Characteristics, 112 Practices and Policies, 114 Third-Party Consent and Incentives, 118 Compensation for Research-Related Injuries, 120 Conclusions and Recommendations, 121 7 Researchers’ Responsibilities 124 Research Design, 125 Reporting of Test Results, 129 Validity of Tests, 130 Ethical Issues in Reporting, 131 Ethical Obligations to Third Parties, 132 Risks Observed in Homes, 134 Confidentiality, 135 Role-Specific Researcher Obligations, 137 Conclusions and Recommendations, 143
OCR for page R14
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children 8 Research Oversight 145 Research Protections, 147 Guidance Regarding Interpretation of Subpart D, 148 Guidance Regarding Economically and Educationally Disadvantaged Populations, 149 Special Considerations Regarding Section 406 Research, 150 Institutional Review Boards, 155 IRB Expertise, 157 IRB Submissions, 160 Conclusions and Recommendations, 161 References and Bibliography 163 Appendix: Biographical Sketches of Committee Members and Staff 189
OCR for page R15
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children Boxes, Figures, and Tables BOXES 2-1 Interventions Study on Reducing Asthma Triggers in the Home, 28 2-2 Reducing Pesticide Exposure for Farm Worker Families: CHAMACOS Study, 32 2-3 The Economics of Rental Housing, 40 3-1 The Kennedy Krieger Study, 43 3-2 Research Involving Children Permitted Under Subpart D: 45 CFR 46, 56 5-1 An Early Experience with Community Involvement, 79 5-2 Preventing Agricultural Chemical Exposure Project, 82 5-3 Seattle Partners for Healthy Communities, 86 5-4 Community Action Against Asthma, 88 6-1 Required Informed Consent Information, 101 7-1 Two Innovative Study Designs, 128 7-2 Reporting Laws on Child Abuse and Neglect, 139 8-1 Recommendations for IRBs from Other Chapters, 146 8-2 Possible Approaches to Ensuring Adequate IRB Review, 160
OCR for page R16
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children FIGURES 2-1 Time spent in the home by children younger than 12 years, 25 2-2 Racial and ethnic differences in mean blood lead levels among U.S. children, 1988-1994, 30 2-3 Fatal injuries by place of occurrence in U.S. children, 1985-1997, 35 TABLES ES-1 Housing Health Hazard Research: Characteristics, Ethical Implications, and Recommendations, 5
OCR for page R17
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children Preface Everyone wants children to grow up healthy. Generally wethink of homes as places where children grow, develop, and thrive. However, some homes present serious health risks to children, including risks of lead poisoning, asthma, and fatal accidents. These hazards are particularly common for children with little access to affordable, decent housing, who are disproportionately poor and members of minority groups. This situation is the context of our report. On one hand, research is needed to better understand housing health hazards and to learn how best to ameliorate them. Children who are most at risk for these hazards may benefit the most from such research. On the other hand, such research presents ethical problems because children who are most at risk may also be vulnerable in multiple ways. The challenge is to carry out research that ultimately will lead to improvements in the health of children, while assuring that vulnerable children participating in research do not face inappropriate risks and that their parents are truly informed about the research. The highly publicized Kennedy-Krieger case, which dramatized these ethical dilemmas, was the impetus for this study. That case, which has generated considerable controversy, has been viewed as a defeat for the researchers and has called into question the ethics of research with children. Our committee did not attempt to make a judgment about this particular case. Indeed, it would be difficult to do so because the case was resolved after the courts ruled on a motion for summary judgment; no testimony was introduced in court on crucial contested factual issues. Instead, the
OCR for page R18
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children committee considered the underlying ethical issues that the case illustrated, which are common in other research on housing health hazards affecting children. The committee heard testimony from many individuals and read many kinds of evidence. We listened to parents, community leaders, researchers, government officials, and experts in law and ethics. As we listened, read, and discussed, I was struck with how much was to be learned from the disparate perspectives of different stakeholders. We learned why parents and community representatives were skeptical about the benefits of research. Because most previous research had not led to any improved housing for their communities, they doubted that scientific knowledge by itself would help them reduce their housing health risks. Many community representatives believe that they need economic and policy reforms, rather than more housing research. Hence they want assurance of immediate benefits from research projects. Moreover, they complained that many researchers fail to understand crucial features about their communities. As a result, scientists proposed research methods that would fail to gather reliable information and did not explain research projects in ways that participants could readily understand. From researchers we learned that when they entered homes to study housing health hazards they faced dilemmas that were markedly different from those facing researchers who work with research participants at medical institutions. In participants’ homes, investigators have observed housing hazards and risks to children that were not the focus of their study. Sensitive researchers felt caught between wanting to help children at risk, feeling overwhelmed by the magnitude of hazards in substandard housing, and realizing that intervention could make things worse if residents faced retaliation. Another issue researchers presented is that those who are committed to devoting time and resources to developing partnerships with the community might be at a disadvantage when applying for grants and carrying out projects. From experts in ethics and research oversight we learned how the federal regulations for research with human participants have been developed with biomedical and clinical research in mind and need to be clarified in the context of this research. We were challenged to think about how research carried out in homes and in communities that are disadvantaged in many ways might require fresh interpretations of ethical principles. As the committee deliberated, we found two guiding themes. First, when researchers discuss a planned study with community representatives, understand their concerns and needs, and respond to them, protocols can be strengthened both scientifically and ethically. Community representatives and parents can identify problems with a project and risks to participants that researchers do not fully appreciate. Moreover, community representatives can suggest better ways to collect data, to explain the project to
OCR for page R19
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children participants, and to recruit and retain them. Although there are problems with identifying appropriate community representatives, reasonable efforts to elicit the range of views of the community are preferable to making no attempt to engage the community. Furthermore, working with the community can help the community understand the role and value of research. Second, the informed consent process needs to be strengthened when research involves children who are vulnerable in many ways. Parents may not understand that the research is not designed to eliminate the hazards being studied and that children will still be at risk for health hazards. In particular, researchers need to take steps to ensure that parents actually understand the essential features of the research study. This requires researchers and institutional review boards to go far beyond their usual focus on describing the risks of research interventions and on refining the consent form. We believe that these themes have led us to recommendations that will allow important research on housing-related health hazards involving children to proceed in an ethically acceptable manner. Although our focus was on housing-related health hazards involving children, these themes may be pertinent to other research carried out in communities that are economically and socially disadvantaged and whose residents may not share scientists’ views about the need for research. As chair I thank Mary Ellen O’Connell, Liz Townsend, Emily Lamond, and Amy Gawad at the National Academies. Without their hard work and careful organization, this report would not have been possible. I also thank the members of the committee for their willingness to tackle the tough issues, to listen to other viewpoints, and to keep open minds. In the spirit of National Academies’ committees, we learned from people from different backgrounds and disciplines. I believe that our deliberations can serve as a model for the discussions that need to take place among the stakeholders in research on housing health hazards involving children. Researchers and sponsors need to listen to the viewpoints of parents and community representatives, learn from each other, and reach common ground. Such conversations take time and are not always easy. Through such discussions, problems that may seem insoluble in the abstract can often be worked out in the context of a specific research project. Bernard Lo, Chair Committee on Ethical Issues in Housing-Related Health Hazard Research Involving Children, Youth, and Families
OCR for page R20
Ethical Considerations for Research on Housing-Related Health Hazards Involving Children This page intentionally left blank.