or research institutions prohibit mention of the actual amount of a payment in a recruitment notice, allowing only a general statement about the type of payment that will be provided (e.g., “reimbursement for expenses”).
In a study comparing research involving children with cancer and research involving children with diabetes, Broome and colleagues (2001) found that participants in cancer studies were never offered financial incentives (in the words of the investigators). In contrast, participants in diabetes research listed financial incentives as a key reason for participating.
For research protocols that offer a potential of direct benefit, particularly in an acute-care situation, the view seems to be that investigators do not need to include any incentives because parents’ desire to have access to the investigational drug or procedure is the driving force in decision making. In addition many of the costs normally associated with research participation (e.g., parking and transportation) would be incurred anyway in connection with clinical care for an acute problem.
The policies of one research consortium provide an example of reasonable payment for the time spent by participants in research. The Therapeutic Development Network (TDN) of the Cystic Fibrosis Foundation approves payment for time and expenses. It cautions that such payment “should not be excessive and should not be perceived as an inducement to participate” (TDN, 2003, p. F-2.).
For time spent in research, TDN suggests that study participants be reimbursed as follows:
Inpatient study: $150 per full day
<2 hours . . . . . . . . . . $ 25.00
2 to <4 hours . . . . . . . $ 50.00
4 to <8 hours . . . . . . . $ 75.00
8 to 12 hours . . . . . . . $100.00
These TDN payment guidelines are monitored regularly and are changed on the basis of cost-of-living increases, IRB feedback, and parent and patient input. The guidelines do not sanction varying payment based on the risk presented by a study. TDN has received favorable comments from several IRBs regarding the helpfulness of its standardized approach that is consistent across studies and sensitive to ethical issues regarding payment. Flexibility in applying the guidelines is provided as a safeguard. The guidelines clearly state that the local IRB has the final decision regarding the actual payments at each site.
A recent review of 127 studies (not limited to health research) involving adolescents reported that 55 percent of all studies and 40 percent of health studies provided for payments (Borzekowski et al., 2003). Fifty percent