What steps can be taken to incorporate a cultural perspective to the evaluation of research risks and benefits? How can investigators develop and implement respectful informed consent procedures in diverse cultural and language communities? What are ethical pitfalls and successful approaches to engaging in community and participant consultation? The Handbook of Ethical Research With Ethnocultural Populations and Communities, edited by Joseph E. Trimble and Celia B. Fisher, addresses these and other key questions in the first major work to focus specifically on ethical issues involving work with ethnocultural populations. Filling gaps and questions left unanswered by general rules of scientific conduct such as those embodied in federal regulations and professional codes, this Handbook will help guide ethical decision making for social and behavioral science research with multicultural groups for years to come.
Key Features:
- Brings together for the first time a multidisciplinary blend of national leaders who specialize in the area of conducting research with ethnocultural populations
- Addresses existing issues at methodological, procedural, and conceptual levels for the responsible conduct of research in the field
- Incorporates as background a summary of leading research and scholarship on various topics framed within the authors′ personal successes, challenges, and failures in the dynamic process of creating a multicultural research ethic
- Includes real-world case examples to illustrate significant ethical principles in the research venture more concretely
The Handbook is designed for graduate and advanced undergraduate students in Psychology and will also be valuable for social and medical science researchers and institutional review boards. This book will also be of interest to ethicists and bioethicists, policy makers, and foundations that fund research involving multicultural populations.
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Cuprins
Acknowledgements
Preface – Richard Suinn
Introduction: Our Shared Journey: Lessons from the Past to Protect the Future – Joseph E. Trimble and Celia B. Fisher
PART I. FOUNDATIONS OF ETHNOCULTURAL RESEARCH AND RESEARCH ETHICS
1. A Goodness-of-Fit Ethic for Multicultural Research – Celia B. Fisher and Kathleen Ragsdale
2. Scientist-Community Collaborations: A Dynamic Tension Between Rights and Responsibilities – John Fantuzzo, Christine Mc Wayne, and Stephanie Childs
3. First, Do No Harm: Culturally Centered Measurement for Early Intervention – Nancy Busch-Rossnagel
PART II. RESEARCH ETHICS CHALLENGES INVOLVING DIVERSE ETHNOCULTURAL GROUPS
4. Addressing Health Disparities Through Relational Ethics: An Approach to Increasing African American Participation in Biomedical and Health Research – Scyatta A. Wallace
5. In Their Own Voices: American Indian Decisions to Participate in Health Research – Tim D. Noe, Spero M. Manson, Calvin Croy, Helen Mc Gough, Jeffrey A. Henderson, and Dedra S. Buchwald
6. “I Wonder, Why Would You Do It That Way?’ Ethical Dilemmas in Doing Participatory Research With Alaska Native Communities – Gerald V. Mohatt and Lisa Thomas
7. Ethical Conduct of Research With Asian and Pacific Islander American Populations – Jean Lau Chin, Jeffery Scott Mio, and Gayle Y. Iwamasa
8. Ethical Community-Based Research With Hispanic or Latina(o) Populations: Balancing Research Rigor and Cultural Responsiveness – Felipe Gonzalez Castro, Rebeca Rios, and Harry Montoya
9. Ethical Issues in Research With Immigrants and Refugees – Dina Birman
PART III. SOCIALLY SENSITIVE RESEARCH INVOLVING ETHNOCULTURAL FAMILIES AND COMMUNITIES
10. Ethical Research With Ethnic Minorities in the Child Welfare System – Katherine Ann Gilda Elliott and Anthony Urquiza
11. With All Due Respect: Ethical Issues in the Study of Vulnerable Adolescents – Ana Marie Cauce and Richard H. Nobles
12. Ethical Research Dilemmas With Minority Elders – Susan Krauss Whitbourne, Joshua R. Bringle, Barbara W. K. Yee, David Chiriboga, and Keith Whitfield
13. Changing Models of Research Ethics in Prevention Research Within Ethnic Communities – Fred Beauvais
14. Ethnographic Research on Drugs and HIV/AIDS in Ethnocultural Communities – Merrill Singer and Delia Easton
PART IV. THE RIGHTS AND RESPONSIBILITIES OF INDIVIDUALS, COMMUNITIES, AND INSTITUTIONS
15. Safeguarding Sacred Lives: The Ethical Use of Archival Data for the Study of Diverse Lives – Copeland H. Young and Monica Brooker
16. Ethical Issues When White Researchers Study ALANA and Immigrant People and Communities – Janet E. Helms, Kevin T. Henze, Jackquelyn Mascher, and Anmol Satiani
17. Coda: The Virtuous and Responsible Researcher in Another Culture – Joseph E. Trimble and Gerald V. Mohatt
Name Index
Subject Index
About the Editors
About the Contributors
Despre autor
Celia B. Fisher, Ph D, Director of the Fordham University Center for Ethics Education and Professor of Psychology, holds the Marie Ward Doty University Chair in Ethics and directs the NIDA funded HIV/Drug Abuse Prevention Research Ethics Institute. Dr. Fisher served as a member of the American Psychological Association’s (APA’s) Ethic Committee and later Chaired the APA Ethics Code Task Force responsible for the 2002 revision of the APA Ethical Principles of Psychologists and Code of Conduct that, with the addition of language on human rights amended in 2010 and 2017, is today’s current code. She has also Chaired the Ethics Code Revision Task Forces for the American Public Health Association and for the Society for Research in Child Development (SRCD). In addition, Dr. Fisher has served as Chair of the Environmental Protection Agency’s Human Subjects Research Board, the New York State Board for Licensure in Psychology, the National Task Force on Applied Developmental Science, and the SRCD Common Rule Task Force charged with representing the voice of developmental scientists during the revision of federal regulations governing the protection of human participants in research. Dr. Fisher has also contributed to the Institute of Medicine (IOM) Committee on Clinical Research Involving Children, the IOM Committee on Ethical Review and Oversight Issues in Research Involving Standard of Care Interventions, the National Academies’ Committee on Revisions to the Common Rule for the Protection of Human Subjects in Research in the Behavioral and Social Sciences, and the Department of Health and Human Services Secretary’s Advisory Committee on Human Research Protections (SACHRP), for which she cochaired the SACHRP Subcommittee on Research Involving Children. She served on the APA/SAMSHA Consensus Panel on Ending Conversion Therapy: Supporting and Affirming LGBTQ Youth, the Data Safety Monitoring Boards for the National Institute of Mental Health (NIMH) and for the National Institute for Drug Abuse (NIDA), and the External Advisory Board for the NIH Adolescent Brain and Cognitive Development Study. She also served as the founding director of the Fordham University Doctoral Program in Applied Developmental Psychology and as cofounding editor of the journal Applied Developmental Science. Dr. Fisher is the recipient of the 2010 Lifetime Achievement Award for Excellence in Human Research Protection and a Fellow of the American Association for the Advancement of Science.Dr. Fisher has written commissioned papers on research ethics with mentally impaired and vulnerable populations for President Clinton’s National Bioethics Advisory Commission, for NIMH on points for consideration in the ethical conduct of suicide research and research involving children and adolescents, and for the National Institute on Drug Abuse (NIDA) on HIV education, treatment, and referrals for research participants. She cochaired the national conference on Research Ethics for Mental Health Science Involving Ethnic Minority Children and Youth (American Psychologist, December 2002), cosponsored by the APA and NIMH, and the first National Conference on Graduate Education in Applied Developmental Science (Journal of Applied Developmental Psychology, 1993).Dr. Fisher has coedited 8 books and authored more than 300 scholarly chapters and empirical articles on professional and research ethics, with special emphasis on the rights of racial/ethnic minorities, sexual- and gender-minority youth, children and adults with impaired decision making, and socially marginalized populations within and outside the United States. With support from the National Institute for Child Health and Human Development (NICHD), she has studied how to assess and enhance the abilities of adults with developmental disabilities to consent to research and
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