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Payments to children and adolescents enrolled in research: a pilot study
Ana S Iltis1, Shannon DeVader, Hisako Matsuo
1Center for Health Care Ethics, St Louis University, 221 N Grand Blvd, St Louis, MO 63103, USA. iltisas@slu.edu
Insights
Payment practices for pediatric research participants vary significantly, with about half of studies offering cash payments. Many institutions lack clear policies on compensating children and parents for research involvement.
Area of Science:
- Pediatric Research
- Bioethics
- Health Services Research
Background:
- Payment practices for research participation, especially in pediatric studies, are not standardized.
- Understanding these practices is crucial for ethical considerations and policy development.
Purpose of the Study:
- To identify and analyze current payment practices in research involving children.
- To examine institutional policies and investigator attitudes towards payments in pediatric research.
Main Methods:
- A survey was distributed to authors of pediatric research studies.
- The survey collected data on payment types, amounts, institutional policies, and influencing factors.
Main Results:
- Payment practices varied widely, with approximately 50% of studies offering some form of payment, most commonly cash.
- While institutional policies on payments have increased, about half of institutions still lack specific guidelines.
- Investigator attitudes and decision-making factors for payments were diverse.
Conclusions:
- Variations in payment practices and policies necessitate further study and consensus-building for guideline development.
- Additional research is needed on parental motivations for enrollment, payment impact on participation, and risk-payment relationships.
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.
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