Contrasting views of risk perception and influence of financial compensation between adolescent research participants and their parents
J Empir Res Hum Res Ethics. 2015 Feb;10(1):49-58. doi: 10.1177/1556264614563249. Epub 2014 Dec 17.
Lori Wiener 1 , Adrienne Viola 2 , Benjamin S Wilfond 3 , David Wendler 4 , Christine Grady 5
2 National Cancer Institute, Bethesda, MD, USA Yale University, New Haven, CT, USA.
4 NIH Clinical Center, Bethesda, MD, USA.
5 NIH Clinical Center, Bethesda, MD, USA cgrady@mail.nih.gov.
U.S. regulations governing pediatric research do not specify the assent process. To identify best practices, it is important to examine parents' and adolescents' views. The present study focuses on parents' and adolescents' views regarding possible research risks and the influence of financial compensation on their willingness to accept research procedures. Interviews were conducted with 177 adolescents participating in clinical research for a medical or psychiatric illness, or as healthy volunteers, and a parent. Significant discordance was found between how bothered the teen would feel from research-related side effects and procedures compared with parental report. Most teens were willing to accept non-beneficial procedures without compensation. Payment had significantly greater influence on healthy volunteers and their parents compared with those with a medical or psychiatric illness. Discordance between adolescent and parental views about risks recommends obtaining direct input from adolescents during the assent process. Modest payments should not raise concerns of undue inducement, especially in teens with pre-existing conditions.
Keywords: assent; decision-making; health status; medical; payment; psychiatric; teens.