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 : JERHRE
Lori WienerChristine Grady

Abstract

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.

References

Apr 1, 1996·American Journal of Public Health·C W Sells, R W Blum
Feb 1, 1996·Journal of Pediatric Psychology·J CrispJ J Goodnow
Nov 1, 1996·The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine·M A MccabeS Leikin
Jan 1, 1995·Ethics & Behavior·Rona AbramovitchMichelle Van Brunschot
Nov 5, 2003·The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine·Dina L G BorzekowskiJ Dennis Fortenberry
Aug 20, 2005·The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine·Janet L BrodyKeely M W Cofrin
Jun 14, 2006·Journal of Child and Adolescent Psychopharmacology·Karen Dineen WagnerThomas Joiner
Jan 4, 2007·Pediatrics·Stephen J BagleyRobert M Nelson
Jul 4, 2007·Pediatrics·Elizabeth D CoxRoger L Brown
Jun 13, 2008·The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics·Ana S IltisShannon R DeVader
Dec 15, 2010·Contemporary Clinical Trials·Leanne Stunkel, Christine Grady
Apr 12, 2011·Journal of Medical Ethics·Helen R FisherAnnette Boaz
Oct 5, 2012·Pediatric Blood & Cancer·Victoria A MillerEric Kodish
Aug 6, 2013·AJOB Primary Research·David G SchererYesel Yoon
Oct 31, 2013·Journal of Empirical Research on Human Research Ethics : JERHRE·UNKNOWN Participants in the Community Engagement and Consent Workshop , Kilifi, Kenya , March 2011

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Citations

Jan 26, 2018·AJOB Empirical Bioethics·Claudia BarnedKieran C O'Doherty
Feb 9, 2019·Journal of Empirical Research on Human Research Ethics : JERHRE·Stephanie TaplinAnne Graham
Jan 24, 2019·Wellcome Open Research·Stephen B GordonUNKNOWN Malawi Research Ethics Workshop 2018 Participants

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Methods Mentioned

BETA
blood draws
blood
biopsy

Software Mentioned

SAS

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