Is using children as research subjects ever justified? Are there limits to such use? Does the fact that children are medically and psychosocially different from adults have implications for research? What can we learn from the history of the use and abuse of children as research subjects? Do parents have the authority to volunteer their children for research projects? How should children participate in the decision to be involved in research? How should research risks be assessed and balanced?
These perplexing questions and others are addressed by a distinguished group of experts in the field of biomedical and behavioral research with children. This book adopts an integrated multidisciplinary approach which uses science, ethics, and law as guides for exploring these most difficult issues. The tension between acquiring important new knowledge and fulfilling the obligation to protect children from exploitation and harm is a recurring theme.
As the first book to be devoted solely to the science, ethics, and law of research with children, it is an indispensable resource to physicians, psychologists, educators, lawyers, ethicists, Institutional Review Board members, child advocates and others involved in performing or reviewing research with children.
"Should be read and used as a resource by all who engage in research with children, by members of institutional review boards, and by people who evaluate grant applications. It will also interest many others who are concerned about the welfare of children. The editors have recruited authors who differ in their areas of interest but not in their uniformly high levels of expertise and knowledge....A welcome feature is the book's emphasis on the psychological
ramifications of participation in research...[An] insightful book."--The New England Journal of Medicine
"Clearly highlights the various pitfalls and problems associated with children as research subjects and is valuable to those of us who conduct such research. Anyone who participates in research with children, takes part in institutional review boards, or reviews such research in any fashion will, most likely, find this a book of real value."--Journal of the American Medical Association
"The book succeeds admirably in its mission...it fills a significant void in the existing work on human subjects research."--Journal of Legal Medicine
"Michael Grodin and Leonard Glantz have put together a very solid, useful collection of original contributions...the first book of its kind devoted to pediatric research in North America. The articles cover an admirably broad range of issues concerning research with children, from psychological and medical issues to questions regarding ethics, law, and regulatory policy."--Medical Humanities Review
"Superb...The historical overview is appropriately chilling; the scientific sections show that research involving children is almost as complex as children themselves; the ethical chapters are illuminating; and the legal/regulatory presentation--my special interest--is so thorough that it gave me new insights into regulations that I had a hand in drafting."--Charles R. McCarthy, Kennedy Institute of Ethics, and Former Director, Office for
Protection from Research Risks, NIH
"Children have been and continue to be exploited and sometimes abused as subjects of research. The great importance of this book extends beyond its subject matter since the authors implicitly raise profound questions about the permissible limits of human experimentation undertaken for the sake of the advancement of scientific knowledge."--Jay Katz, Yale University
"A timely, important and incisive volume which makes it impossible not to reflect more carefully on what researchers have done to children in the past and what society ought to allow them to do in the future."--Arthur L. Caplan, Director, Center for Biomedical Ethics, University of Minnesota
"Comprehensive and relevant...extremely useful for identifying specific issues in the literature. The book is thoughtful and stimulating."--Patricia A. Marchall, Ph.D., (Loyola Univ Med Ctr), Doody's Health Sciences Book Reviews Journal
"An extremely valuable guide to all those concerned with research on children...Extremely interesting and informative. It should be required reading for medical and behavioral researchers who use children as subjects and for IRB members who oversee this research...the book makes amply clear the importance of granting special consideration to the issue raised by research on children and the lack of sufficient attention to the scientific, ethical, and legal
implications in the research community. Perhaps the kind of serious analysis and debate that this book initiates will leave us better prepared to understand and deal with the next Willowbrook or Baby Fae experiment before it proceeds."--Robert I. Field, J.D.,Ph.D., Philadelphia , Pennsylvania.
"This volume will be very useful to many involved in conduct of research on children who need a fine review of the ethical, legal and scientific issues involved."--Journal of Nervous and Mental Disease
1: Historical Overview: Pediatric Experimentation, S. Lederer, M. Grodin
2: Scientific Issues in Biomedical Research with Children, R. Kauffman
3: Scientific Issues in Psychosocial and Educational Research with Children, G. Koocher
4: Ethics of Exposing Children to Risks in Research, D. Brock
5: The Law of Human Experimentation with Children, L. Glantz
V. Practical Problems
6: Children's Involvement in Research Participation Decisions: Psychological Considerations, L. Weithorn, D. Scherer
7: Assessment of Risk to Children, E. Wender
8: Vulnerable Children, R. Cooke
Codes of Ethics: Nuremburg Code; WHO Declaration of Helsinki IV; Federal Policy for the Protection of Human Subjects: Notices and Rules; Points to Consider in Proposing or Reviewing Research Involving Children
Number Of Pages: 272
Published: 17th February 1994
Country of Publication: US
Dimensions (cm): 23.5 x 15.62
Weight (kg): 0.51