Protection of children's rights to self-determination in research
Ethics and Behavior 13 (3):237 – 247 (2003)
| Abstract | Federal guidelines require that informed consent be obtained from participants when they are enrolled in a research study. When conducting research with children, the guidelines utilize the term permission to describe parents' agreement to enroll their children in a study. The basic components of consent and permission are well described and identical, with the exception of the person for whom the decision to participate is being made (i.e., oneself as opposed to one's child). Beyond permission, when enrolling minor participants in research, affirmative agreement to participate in research or assent must be obtained from the child participants themselves. The concept of children's assent to research, however, is poorly defined, resulting in inconsistency in its pursuit and, consequently, in its utility. The interface between cognitive development, emotional, and social development must be examined as it pertains to this special situation of decision making. For this process to meaningfully protect minors, the assent process must be clarified, decisions regarding parental veto power must be more convincingly justified, and researchers must be better educated and held accountable for the valid execution of this process. Strategies for implementing the assent process more effectively are presented. | |||||||||
| Keywords | No keywords specified (fix it) | |||||||||
| Categories | ||||||||||
| Options |
|
|||||||||
| PhilPapers Archive |
Upload a copy of this paper Check publisher's policy on self-archival Papers currently archived: 5,631 |
| External links |
|
| Through your library | Configure |
Farah Focquaert (forthcoming). Deep Brain Stimulation in Children: Parental Authority Versus Shared Decision-Making. Neuroethics.
Victoria A. Miller, Dennis Drotar & Eric Kodish (2004). Children's Competence for Assent and Consent: A Review of Empirical Findings. [REVIEW] Ethics and Behavior 14 (3):255 – 295.
Benedetto Vitiello (2008). Effectively Obtaining Informed Consent for Child and Adolescent Participation in Mental Health Research. Ethics and Behavior 18 (2 & 3):182 – 198.
Patrick C. Friman (1995). Take Away Their Hammer: Logical and Ethical Problems in Range and Cotton's "Reports of Assent and Permission in Research with Children: Illustrations and Suggestions". Ethics and Behavior 5 (4):349 – 353.
Lillian M. Range & C. Randy Cotton (1995). Assent and Permission Rejoinder. Ethics and Behavior 5 (4):345 – 347.
Jessica Masty & Celia Fisher (2008). A Goodness-of-Fit Approach to Informed Consent for Pediatric Intervention Research. Ethics and Behavior 18 (2 & 3):139 – 160.
Victoria A. Miller, William W. Reynolds & Robert M. Nelson (2008). Parent-Child Roles in Decision Making About Medical Research. Ethics and Behavior 18 (2 & 3):161 – 181.
David Wendler & Seema Shah (2003). Should Children Decide Whether They Are Enrolled in Nonbeneficial Research? American Journal of Bioethics 3 (4):1 – 7.
Wilma C. Rossi, William Reynolds & Robert M. Nelson (2003). Child Assent and Parental Permission in Pediatric Research. Theoretical Medicine and Bioethics 24 (2).
Lillian M. Range & C. Randy Cotton (1995). Reports of Assent and Permission in Research with Children: Illustrations and Suggestions. Ethics and Behavior 5 (1):49 – 66.
Monthly downloads
Sorry, there are not enough data points to plot this chart.
|
Added to index2009-01-28Total downloads3 ( #201,695 of 548,973 )Recent downloads (6 months)0How can I increase my downloads? |

