This study compared the views of parent-adolescent dyads concerning their beliefs about who maintains authority within the family to make research participation decisions for the adolescent. Opinions concerning family and physician influence over participation decisions were also evaluated. Adolescent responses differed from those of their parents in several important ways.
Adolescents were relatively unwilling to cede decision-making authority to parents, while parents believed their adolescents would comply with parental wishes. Consistent with preliminary findings from our earlier research (3
), these results provide additional evidence of an overall adolescent preference for autonomy in asthma research participation decisions.
Findings concerning the willingness of adolescents and parents to consider outside opinions when making these decisions were more nuanced. In general, parents reported more willingness than adolescents to be influenced by others in these asthma research participation decisions. Both parents and adolescents acknowledged a greater openness to input from others when considering above minimal risk rather than minimal risk studies, and both groups also acknowledged that physician's views would be more persuasive than family members' views. However, there were important clarifications for these findings. Physician influence would be strongest when considering participation in above minimal risk asthma studies. Moreover, physicians would have the greatest influence on both parents and adolescents when the adolescent was female. With regard to family influence and parent decision-making, our results suggest that adolescent boys may be granted more autonomy in research decisions than adolescent girls.
There are several implications of these findings for the conduct of research with adolescents. First, even the relatively young adolescents in this sample expressed the desire for decision-making responsibility, regardless of level of research risk. There is growing consensus that children ought to have more input into research participation decision-making, principally for non-beneficial research (21
). However, our data suggest this view is not necessarily shared by parents, especially when the adolescent in question is female. Gender-based differences in adolescent autonomy have been noted elsewhere in literature (8
). In the case of research participation decisions, the present gender finding points to the likelihood of differences in family decision-making processes that may appreciably limit the involvement of adolescent females. If substantiated, researchers may face unanticipated ethical quandaries in attempting to ensure the voluntary assent for participation of female adolescents in biomedical research.
Overall, the importance of determining authority for adolescent research participation decisions may actually be most significant for above minimal risk studies. We have demonstrated elsewhere (17
) that adolescents appear more willing to enroll in above minimal risk asthma research than parents are willing to permit their enrollment. Were adolescents to obtain greater autonomy in research participation decision-making, enrollment in these studies might proceed more quickly. However, the ability of adolescents to appropriately weight research risks and benefits in the context of an actual clinical trial has not yet been empirically established, although it has been demonstrated in analog vignette studies (23
The present findings also point to the importance of physician recommendations for parent and adolescent decision-making, particularly with higher risk research, where families may feel less able to appropriately judge the risks and benefits of a study. Commentators have identified a number of complex considerations related to the ethical involvement of physicians in research participation decisions, including limitations in professional integrity, conflicts of interest, and disparities of social power that may operate to inappropriately influence participant decision-making (12
). Nonetheless, our findings highlight that physician guidance is important to families contemplating research participation, and the ‘physician as advisor’ may be especially important to adolescents as they begin to exercise greater independence from parents on both medical and research participation decisions. This finding emphasizes the need for further study on the process of informed consent, especially to establish methods of physician dialogue with adolescents that enhance adolescent knowledge and appreciation of research participation while preserving and respecting their developing autonomy.
As data accumulates on the desire, ability, and process by which adolescents may exercise autonomy in research participation decision-making, policy makers and the legal system are the likely arbiters of parental versus adolescent rights in these decisions. Clarifying the perspectives of family members helps to explain the potential legal and ethical issues at stake. One limitation of these data is that they represent participants' beliefs about their own behaviors in a research setting, they do not measure actual behaviors. Further research examining actual research decision-making processes in families is needed to more fully explain family and physician influences on parent and adolescent research participation decisions.