Authors

  1. Lobo, Marie L. PhD, RN, FAAN

Article Content

Having conducted research with children for more than 25 years, I have come to believe that children should be reimbursed for participation in research. Because children must be accompanied by their parents or guardians, remuneration to those parents or guardians also must be considered. Generally, research participants are reimbursed for expenses such as parking and travel costs associated with studies in which they are enrolled, and in the case of participants who are children, these charges would be reimbursed to the parents. Researchers also generally include some financial compensation to adult participants for their time and inconvenience incurred by their involvement in research. However, it is not standard practice by researchers to monetarily compensate child participants. Sometimes researchers may offer appreciation payments, such as gift certificates or movie coupons, to child participants upon completion of a study. Incentive payments that offer amounts for participation in research that are not limited to the above and are at such a level that they encourage the family or child to participate in research also may occur (Wendler, Backoff, Emanuel, & Grady, 2002).

 

The Institute of Medicine (2004) book Ethical Conduct of Clinical Research Involving Children supports paying children for research. The major question becomes: How much money is coercive? The book states, "In general, the committee believed that it is appropriate and fair to permit investigators to provide payments to parents and children for expenses related to a child's participation in research that they would not otherwise incur" (Institute of Medicine, 2004, p. 213). The amount of remuneration may vary according to site, with urban expenses higher than rural or suburban costs. Recent statements about the importance of remunerating adults have focused on insuring that remuneration is for time, transportation, and other expenses related directly to the time and effort to participate in the research.

 

In my opinion, children deserve the same consideration as adults participating in research and should be compensated for their time, effort, and risk. But how much should be given? When considering the pressing issue of coercion, it is critical that a child's stage of development be considered when identifying the value of the remuneration. Ten dollars may not seem like much money to an adolescent, whereas to a 6-year-old child it may seem like "a lot" of money. It is critical that all remuneration be reviewed by the Institutional Review Board (IRB) to insure that the amounts being offered are appropriate and not considered a coercive inducement for participation.

 

There is controversy in the literature about whether potential subjects should be informed about the amount of remuneration in advance of participation (Wendler et al., 2002). Drug studies are often the source of the larger amounts of reimbursement. Nursing studies rarely have large reimbursements; however, the socioeconomic status of the subject may make an amount that seems relatively small and inconsequential to an affluent family seem large and of great consequence to a family that is less fortunate.

 

Suggestions for reimbursement to children include cash; vouchers for activities, food, or toys; and bonds. Parental reimbursement can be for time, gasoline, transportation, housing, and childcare costs incurred as a direct result of their child participating in research. This reimbursement may be specific to reducing the barriers to families with economic needs that might otherwise prevent them from participating in research. It is suggested that time be reimbursed at minimum wage if a family member is required to be away from work during the research.

 

The Institute of Medicine (2004) recommends that children be reimbursed and that investigators inform the family about the timing and purpose of the remuneration at the time of the parents' consent and the child's assent. Although the family should be informed of any remuneration, that should not be the emphasis at the time of recruitment or consent, and payment for research participation should not be presented to parents or their child as a benefit to participating in the research (Ramsey, 2006). The IRB should approve any type of remuneration, be it cash, a toy, or other token of appreciation and whether the information about remuneration can be included in recruitment information. Children, like adults, should be reimbursed for their participation in research.

 

References

 

Institute of Medicine. (2004). Ethical conduct of clinical research involving children. Washington, DC: National Academies Press. [Context Link]

 

Ramsey, B. W. (2006). Appropriate compensation of pediatric research participants: Thoughts from an Institute of Medicine committee report. Journal of Pediatrics, 149(Supplement 1), S15-S19. [Context Link]

 

Wendler, D., Backoff, J. E., Emanuel, E. J., & Grady, C. (2002). The ethics of paying for children's participation in research. Journal of Pediatrics, 141, 166-171. [Context Link]