Payments to Children and Adolescents Enrolled in Research: A Pilot Study

Author:

Iltis Ana S.1,DeVader Shannon2,Matsuo Hisako3

Affiliation:

1. Center for Health Care Ethics

2. School of Public Health

3. Department of Research Methodology, St Louis University, St Louis, Missouri

Abstract

OBJECTIVES. The goal was to identify current payment practices in research involving children. METHODS. A 4-page survey was mailed to the first author or corresponding author of pediatric research studies. Questions concerned whether children enrolled in research and/or their parents received any form of payment, values and types of remuneration, federal categories of pediatric research under which studies were approved, institutional policies regarding payments to children and/or their parents, institutional review board review of payment plans, factors that influenced payment decisions, prorating of payments, purposes of payments, perceived effects of payments on recruitment, and investigators' attitudes toward payments and the perceived risks and discomforts of studies. RESULTS. Payment practices varied, and the reasons for which investigators adopted particular payment practices varied. Approximately one half offered payment. The most popular form of payment was cash. The number of institutions with policies addressing directly payments for children enrolled in research has increased, but still only approximately one half of institutions studied had such policies in place. CONCLUSIONS. Awareness of the variations in payment practices and policies and additional study of the ethical issues surrounding payments for research participation are essential for building consensus and developing the guidelines the Institute of Medicine has said are necessary. Additional research also is needed to understand why parents enroll their children in research, how payments affect research participation decisions, and what the relationship between a study's risks and discomforts and payment should be.

Publisher

American Academy of Pediatrics (AAP)

Subject

Pediatrics, Perinatology, and Child Health

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