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Pediatric decision-making: informed consent, parental permission, and child assent

from Section 1 - Core issues in clinical pediatric ethics

Published online by Cambridge University Press:  07 October 2011

Douglas S. Diekema
Affiliation:
Seattle Children's Research Institute
Mark R. Mercurio
Affiliation:
Yale University School of Medicine
Mary B. Adam
Affiliation:
Department of Pediatrics, University of Arizona School of Medicine, Tucson
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Summary

Case narrative

Osteosarcoma is a highly malignant bone cancer with a predilection for spreading to the lungs that primarily affects adolescents. Non-metastatic osteosarcoma has an approximate cure rate of 70%. Patients with osteosarcoma and metastases at the time of diagnosis are cured less than 20% of the time. Treatment consists of surgery and chemotherapy. Many children with cancer are treated according to clinical research trials.

Michael, a 15-year-old with metastatic osteosarcoma, has not responded to conventional therapy. For almost one year, he was treated on a therapeutic randomized clinical trial, which consisted of standard therapy (up-front chemotherapy, limb salvage surgery, and postsurgical chemotherapy). When his cancer responded poorly to up-front therapy he was randomized to receive additional “experimental” chemotherapy.

Type
Chapter
Information
Clinical Ethics in Pediatrics
A Case-Based Textbook
, pp. 1 - 6
Publisher: Cambridge University Press
Print publication year: 2011

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References

American Academy of Pediatrics, Committee on Bioethics 1995 Informed consent, parental permission, and assent in pediatric practicePediatrics 95 314Google Scholar
American Academy of Pediatrics, Committee on Bioethics and Committee on Hospital Care 2000 Policy Statement: Palliative Care for ChildrenPediatrics 106 351Google Scholar
Angst, D.B.Deatrick, J.A. 1996 Involvement in health care decisions: Parents and children with chronic illnessJournal of Family Nursing 2 174Google Scholar
Bartholome, W.G. 1996 The Ethics of Research Involving Human SubjectsVanderpool, H.Y.Frederick, MDUniversity Publishing Group
Beauchamp, T.L.Childress, J.F. 2001 Principles of Biomedical EthicsNew YorkOxford University Press
Bluebond-Langer, M.DeCicco, A.Belsco, J. 2005 Ethics and Research with Children: A Case-Based ApproachKodish, E.New YorkOxford University Press
Diekema, D. 2004 Parental refusals of medical treatment: the harm principle as threshold for state interventionTheoretical Medicine 25 243Google Scholar
Dunsmore, J.Quine, S. 1995 Information, support, and decision-making needs and preferences of adolescents with cancer: implications for health professionalsJournal of Psychosocial Oncology 13 39Google Scholar
Faden, R.R.Beauchamp, T.L. 1986 A History and Theory of Informed ConsentNew YorkOxford University Press
Geller, G.Tambor, E.S.Berhardt, B.A.Fraser, G.Wissow, L.S. 2003 Informed consent for enrolling minors in genetic susceptibility research: a qualitative study of at-risk children’s and parent’s views about children’s role in decision-makingJournal of Adolescent Health 32 260Google Scholar
Grodin, M.A.Alpert, J.J. 1983 Children’s Competence to ConsentMelton, G.B.Koocher, G.P.Saks, M.J.New YorkPlenum Press
King, N.Cross, A. 1989 Children as decision makers: Guidelines for pediatriciansJournal of Pediatrics 115 10Google Scholar
Levenson, P.M.Pfefferbaum, B.J.Copeland, D.R.Silberberg, Y. 1982 Information preferences of cancer patients ages 11–20 yearsJournal of Adolescent Health Care 3 9Google Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1978 Research involving children: Report and Recommendations of the National Commission for Human Subjects of Biomedical and Behavioral ResearchFederal Register 43 2084Google Scholar
Rossi, W.C.Reynolds, W.Nelson, R.M. 2003 Child assent and parental permission in pediatric researchTheoretical Medicine 24 131Google Scholar
Snethen, J.A.Broome, M.E.Knafl, K.Deatrick, J.A.Angst, D.B. 2006 Family patterns of decision-making in pediatric clinical trialsResearch in Nursing and Health 29 223Google Scholar
Unguru, Y.Coppes, M.J.Kamani, N. 2008 Rethinking pediatric assent: from requirement to idealPediatric Clinics of North America 55 211Google Scholar
Unguru, Y.Sill, A.Kamani, N. 2010 The experiences of children enrolled in pediatric oncology research: implications for assentPediatrics 125 e876Google Scholar
Weithorn, L.A.Campbell, S.R. 1982 competency of children and adolescents to make informed treatment decisionsChild Development 53 1589Google Scholar
Weithorn, L.A.Scherer, D.G. 1994 Children as Research Subjects: Science, Ethics, and LawGrodin, M.A.Glanz, L.H.New YorkOxford University Press

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