Views of adolescents and parents on pediatric research without the potential for clinical benefit.

OBJECTIVE

Critics argue that pediatric research without the potential for clinical benefit is unethical because it treats children as mere means, exposing those who cannot consent to risks for the benefit of others. The present survey was designed to assess whether this claim is consistent with the views of adolescents who actually participate in research, or their parents.

METHODS

Interviews were conducted with adolescents participating in research at the NIH Clinical Center or Seattle Children's Hospital, and their parents, from June 2008 through April 2010.

RESULTS

Interviews were completed with 177 of 186 adolescent/parent pairs (response rate= 95.2%). Overall, 90% of the adolescents and parents were willing to have the adolescent undergo a few extra blood draws, and 65% were willing to have the adolescent undergo an extra skin biopsy, for research purposes. The vast majority felt that the adolescents were making an important contribution to help others, and 80.8% of the adolescents felt proud to be doing so. Respondents overall were equally willing to have the adolescent face risks to help others in a research study or in a charitable activity.

CONCLUSIONS

The views and experiences of these respondents do not support the claim that pediatric research without the potential for clinical benefit treats subjects as mere means. Instead, the findings provide proof of principle for the claim that non-beneficial pediatric research involves a type of charitable activity which offers children the opportunity to contribute to a valuable project to help others.