Parental permission and adolescent assent and decision making in clinical resear

Clinical Center

Investigators

Linked publications & trials

Abstract

This was 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. Four manuscripts have been published: 1. Wendler D, Abdoler E, Wiener L, Grady C. Views of adolescents and parents on pediatric research without the potential for clinical benefit. Pediatrics. 2012 Oct;130(4):692-9 2. Grady C, Wiener L, Abdoler E, Trauernicht E, Zadeh S, Diekema D, Wilfond B, Wendler D. Assent in Research: The Voices of Adolescents. Journal of Adolescent Health 2014, 54: 515-520 3. Wiener L, Viola A, Wilfond B, Wendler D, Grady C. Contrasting Views of Risk Perception and Influence of Financial Compensation Between Adolescent Research Participants and Their Parents. Journal of Empirical Research on Human Research Ethics, 2015. 10(1):49-58 4. Grady C, Nogues I, Wiener L, Wilfond B, Wendler D. Adolescent research participants descriptions of medical research. AJOB Empirical Ethics 2015. Study is no longer recruiting