Research With High-Risk Populations: Balancing Science, Ethics, and Law
For individuals in the U.S. & U.S. territories
Research conducted on high-risk populations raises unique ethical and legal questions. While collecting data, researchers conducting descriptive, non-intervention studies may be faced with threats of harm to or by the participants, such as suicide, child abuse, or violence. At what point should the researcher override confidentiality protection agreements? How do researchers address the tensions between successfully recruiting participants while communicating their obligation to disclose threatening behaviors? How do researchers identify and adequately communicate to participants the limits of confidentiality protection?
Research With High-Risk Populations provides guidance to social scientists regarding their ethical and legal responsibilities to respond appropriately to threats of harm that may arise during the course of data collection. Contributing authors include leading researchers, ethicists, lawyers, and Institutional Review Board (IRB) members from across the country who illuminate the complexities of the issues using case studies from their own research projects. This collection of ethical and legal analyses examines both the challenges of conducting research designed to responsibly gain a better understanding of the origins of serious health problems, and the moral and legal obligations of researchers who learn of threats of violence in the course of pursuing the primary objectives of the research.
This book maps out an appropriate balance between protecting human research participants from harm and generating new scientific knowledge. It will enable researchers and IRB members to become more knowledgeable about the different ways of allowing valuable research to go forward, while minimizing the potential for harm and protecting all parties involved from undue harm and exploitation.
Table of Contents
—David Buchanan, Celia Fisher, and Lance Gable
I. Historical, Theoretical, and Legal Perspectives
- Goodness-of-Fit Ethics for Non-Intervention Research Involving Dangerous and Illegal Behaviors
—Celia B. Fisher and Sabrina J. Goodman
- Legal Challenges Raised by Research Conducted Under High-Risk Circumstances
II. Conducting Research Ethically
- Telephone Surveys of Traumatic Experiences and Other Sensitive Topics
—Jennifer J. Cercone, Carla Kmett Danielson, Kenneth J. Ruggiero, and Dean G. Kilpatrick
- Longitudinal Research in School Bullying: Adolescents Who Bully and Who Are Bullied
—Lang Ma, Erin Phelps, Jacqueline V. Lerner, and Richard M. Lerner
- Suicide in a Natural History Study: Lessons and Insights Learned From a Follow-up of Vietnam Veterans at Risk for Suicide
—Rumi Kato Price, Li-Shiun Chen, Nathan K. Risk, Ashley Hughes Haden, Gregory A. Widner, David M. Ledgerwood, and Collins E. Lewis
- Using Public Data: Illustrations From Domestic Violence Research
—Catherine Cerulli and Chris Thomas
III. Responding to Threats of Violence
- Ethical Dilemmas in Conducting Field Research With Injection Drug Users
- Ethical and Legal Issues in Conducting Treatment Research With Potentially Violent Individuals
—Barry Rosenfeld and Debbie Green
- Do Drug Abuse Researchers Have a "Duty to Protect" Third Parties From HIV Transmission? Moral Perspectives of Street Drug Users
—Celia B. Fisher, Matthew Oransky, Meena Mahadevan, Merrill Singer, Greg Mirhej, and G. Derrick Hodge
- Ethical and Legal Dilemmas in Ethnographic Field Research: Three Case Studies of Distressed Inner-City Families
—Eloise Dunlap, Bruce D. Johnson, and Doris Randolph
IV. Concluding Thoughts
- Best Practices for Responding to Threats of Violence in Research Ethically and Legally
—David Buchanan, Celia Fisher, and Lance Gable
About the Editors
David Buchanan, DrPH, is a full professor of public health, director of the Division of Community Health Studies, and director of the Institute for Global Health at the University of Massachusetts at Amherst. His primary area of research lies in analyzing the ethical foundations of public health and approaches to improving population health and quality of life. He has focused in particular on the role of public health policies and programs in promoting justice and expanding human autonomy as prerequisite to improving population-based health status indicators.
In the early 2000s, he spent 3 years at the National Institutes of Health as an invited research fellow in public health ethics. He is currently a coinvestigator on a project aimed at defining ethical standards for conducting research in international settings, in conjunction with the Medical Research Council and the South African AIDS Vaccine Initiative, and the codirector of the Leadership in Global Health project now underway in the southern African region, including Mozambique, South Africa, Swaziland, Zambia, and Zimbabwe.
Dr. Buchanan is the author of more than 70 articles on empirical and ethical issues in public health and of three books, including An Ethic for Health Promotion: Rethinking the Sources of Human Well Being. He earned his master's degree and doctorate in public health at the University of California, Berkeley.
Celia B. Fisher, PhD, Marie Ward Doty Professor of Psychology and director of the Fordham University Center for Ethics Education, is chair of the U.S. Environmental Protection Agency's Human Research Subjects Board, a past member of the U.S. Department of Health and Human Services Secretary's Advisory Committee on Human Research Protections, and a founding editor of the journal Applied Developmental Science.
Dr. Fisher chaired the American Psychological Association's Ethics Code Task Force and the New York State Licensing Board for Psychology and served on the National Institutes of Mental Health Data Safety and Monitoring Board and the Institute of Medicine's Committee on Clinical Research Involving Children.
Dr Fisher is author of Decoding the Ethics Code: A Practical Guide for Psychologists, coeditor of seven books including The Handbook of Ethical Research With Ethnocultural Populations and Communities and The Encyclopedia of Applied Developmental Science, and author of more than100 theoretical and empirical publications in the areas of ethics in medical and social science research and practice and life-span development. Her federally funded research programs focus on ethical issues and the well-being of vulnerable populations, including ethnic minority youths and families, active drug users, college students at risk of drinking problems, and adults with impaired consent capacity.
Lance Gable, JD, MPH, is an assistant professor of law at Wayne State University Law School and a scholar with the Centers for Law and the Public's Health: A Collaborative at Johns Hopkins and Georgetown Universities, a Collaborating Center of the World Health Organization and the Centers for Disease Control and Prevention.
He specializes in public health law, ethics, and policy; research ethics; bioterrorism and emergency preparedness; mental health; international human rights; genetics and genomics; and information privacy. He has authored or coauthored numerous publications on topics related to public health law and policy. In addition, Dr. Gable has worked as a health law expert on projects for the World Health Organization, the World Bank, and the Pan American Health Organization.
Before joining the Wayne State faculty, he was a senior fellow at the Center for Law and the Public's Health from 2004 to 2006. He also served as the project director for the Emergency System for Advance Registration of Volunteer Health Professionals—Legal and Regulatory Issues Project from 2004 to 2006.
In 2004, Dr. Gable served as a professorial lecturer at the Georgetown University School of Foreign Service, where he taught a course on the politics of international health. From 2003–2004, he was the Alfred P. Sloan Fellow in Bioterrorism Law and Policy at the Center for Law and the Public's Health.
Dr. Gable practiced health law at a major international law firm in Washington, DC, from 2001 to 2002. He received a Juris Doctor from Georgetown University Law Center and a master's in public health from the Johns Hopkins Bloomberg School of Public Health in 2001. He received a bachelor's degree with a double major in political science and biology from the Johns Hopkins University in 1995.