Passive Consent with a Health Behavior Survey of Native American Youth
There are many barriers to conducting research with children. Many institutional review boards are concerned about exploiting children, not realizing children will say no when they do not want to do an activity. This symposium addresses both the joys and frustration of doing research with and for children.
Background:
This paper will discuss the use of passive consent from parents with active assent from children and youth within a vulnerable population. Research on active versus passive consent for adolescent risk behavior research has shown that response rates to requests for active consent are 30 to 60 percent compared to over 90 percent for passive consent (Tigges, 2003). Research protocols for working with Native American tribes will be discussed as well as challenges of publishing research using passive consent in vulnerable populations.
Methodology:
The researchers received permission from the University of New Mexico Institutional Review Board to allow legally authorized representatives (LAR) to provide passive consent for minors participating in a regional youth soccer program evaluation. The passive consent forms were mailed to LAR of all registered participants at least two weeks prior to the beginning of the event. LAR’s capacity to consent was not be evaluated, but the researchers assumed that LARs had the capacity to consent to the evaluation survey as they will had previously consented to allowing minor children to participate in the youth soccer program. Minors participating in the evaluation were be asked to assent to the survey questionnaire, the New Mexico Youth Risk and Resiliency Survey, prior to taking the evaluation survey. Minor participant’s ability to assent to voluntarily complete the survey was assessed by the primary researcher, Dr. Siemon, at the time of the evaluation survey.
Outcomes:
The research was completed successfully and results were presented to the New Mexico Legislature’s Interim Indian Affairs Committee. However, efforts to publish the research in peer reviewed journals have been met with questions about the use of passive consent.