Children As Research Subjects: Science, Ethics, and Law

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9780195071030: Children As Research Subjects: Science, Ethics, and Law
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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.

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About the Author:


Michael A. Grodin, M.D., FAAP, is a Medical Ethicist, Professor of Health Law, Pediatrics, Socio-Medical Sciences and Community Medicine, Adjunct Professor of Philosophy, and Director of the Program in Medical Ethics at Boston University Schools of Medicine, Public Health and the College of Liberal Arts. He has been Chairman of the Institutional Review Board of the Department of Health and Hospitals of the City of Boston for 10 years, and is a member of the National Committee on Bioethics of the American Academy of Pediatrics. He is co-editor of The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation (Oxford, 1992)

Leonard H. Glantz, J.D., is a lawyer, Associate Director and Professor of Health Law at Boston University School of Public Health, and Professor of Socio-Medical Sciences and Community Medicine at Boston University School of Medicine. Mr. Glantz was an advisor to the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in the area of legal issues concerning research with children, and has been a member of Institutional Review Boards for 15 years.

Review:

"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

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