Parental permission and adolescent assent and decision making in clinical resear

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Abstract

This is an interview study of adolescents and their parents to better understand the processes of assent and parental permission for adolescents in research. The study involves face to face interviews with adolescents who represent the full spectrum of research participants from healthy volunteers to teens with chronic or terminal illnesses and one of their parents. Questionnaire domains include views regarding research, experience with the permission/assent process, decision making, and willingness to accept research risks. A total of 177 adolescent -parent pairs were interviewed. Data analysis is ongoing. One manuscript has been accepted, two others are in progress.