As children mature, they can become more involved in discussions and decisions about their participation in research, although parental involvement is still necessary and prudent in most situations. Older youth may not have the legal capacity to make decisions themselves, but research studied here generally suggests that their understanding of research is consistent with that of adults. Many aspects of the approval process may be similar to the adult approval process if this process is designed to accommodate people with different educational, social and cultural backgrounds. For children and adolescents, as well as adults, physical disability or distress related to serious illnesses may limit the extent of their participation. A person can act as an advocate for more than one child and must be a person who has the background and experience of acting in the best interests of the child for the duration of the child`s participation in the research and agrees to act in the best of the child. Counsel should represent the interests of the child throughout the child`s participation in research. HHS orders also require that the lawyer not be involved in any way (except as a lawyer or member of the IRB) in the research, examiner or guardianship organization. Some studies suggest that many parents (like many adults who make decisions themselves) see research as an opportunity to have additional access to care and information about their child`s condition and treatment. In a study conducted in Washington State, 44 parents who accepted their child`s participation in an asthma study completed a questionnaire on their motivations (Rothmier et al., 2003). The authors concluded that „although most parents/guardians, although altruistic motives are present in pediatric asthma research, have accepted their child to learn more about their child`s asthma” (p. 1037). Access to the latest drugs and relationships with staff have also been positive factors. Parents with lower family incomes responded that access to free medications was a factor in their decision.
Several studies have examined factors related to parents` decisions to involve their child in research. Many involved a small number of parents with limited socio-demographic diversity. Some studies have focused on validated survey or maintenance tools; others, apparently, no. Publications did not always publish quantitative information on parents` responses, and some of them were based on quotations from parents who gave clear ideas, without giving a clear idea of their representativeness. As described in Appendix B, the policy of state participation in research is poorly documented. The Committee supports systematic efforts to document public policies, their justifications and implementation, which served as the basis for further review of the adequacy of these policies and practices. Some state policies and practices, which have been an understandable response to historical abuses and controversies, can now go beyond the provisions and protection of federal regulations, so that participation in research, which could benefit the population of children and youth in the state, is unduly restricted. Example A: An IP proposes a survey of mothers aged 13 to 17 to study the link between sexual activity, education and nutrition. In this case, women between the ages of 13 and 17 must agree to participate in the study. The Geller and Colleagues study (2003) has already suggested that most parents want to make the first decision about their child`s participation in research.