David Wendler1, Tammara Jenkins. 1. Department of Clinical Bioethics, National Institutes of Health Clinical Center, Bldg 10, Room 1C118, Bethesda, MD 20892, USA. dwendler@nih.gov
Abstract
OBJECTIVE: To assess children's and parents' attitudes regarding pediatric research that poses minimal risk or a minor increase over minimal risk and does not offer the potential to benefit the child clinically. DESIGN: Separate in-person interviews with children and their parents. SETTING: Clinics where the children were receiving clinical care or participating in clinical research for asthma or cancer. PARTICIPANTS: Children aged 7 to 14 years and their parents or legal guardians. INTERVENTION: In-person interviews. MAIN OUTCOME MEASURES: Respondents' willingness to enroll the child in nonbeneficial research and charitable activities that posed the same risks. RESULTS: Overall, 81 child-parent pairs were interviewed. For a hypothetical study that would not benefit the child and posed a risk of headache, 71% of the children were willing to participate, and 72% of the parents would allow their children to participate. For a hypothetical study that would not benefit the child and posed a very small chance of a broken leg, 43% of the children and 24% of the parents endorsed the child's participation. Overall, respondents were equally willing to have the child help others by participating in nonbeneficial research or by participating in a charitable activity. CONCLUSIONS: Most respondents were willing to have the child participate in some nonbeneficial research, and most did not consider nonbeneficial pediatric research to be more problematic than charitable activities for children. These findings provide empirical data to support the acceptability of exposing children to some research risks for the benefit of others.
OBJECTIVE: To assess children's and parents' attitudes regarding pediatric research that poses minimal risk or a minor increase over minimal risk and does not offer the potential to benefit the child clinically. DESIGN: Separate in-person interviews with children and their parents. SETTING: Clinics where the children were receiving clinical care or participating in clinical research for asthma or cancer. PARTICIPANTS: Children aged 7 to 14 years and their parents or legal guardians. INTERVENTION: In-person interviews. MAIN OUTCOME MEASURES: Respondents' willingness to enroll the child in nonbeneficial research and charitable activities that posed the same risks. RESULTS: Overall, 81 child-parent pairs were interviewed. For a hypothetical study that would not benefit the child and posed a risk of headache, 71% of the children were willing to participate, and 72% of the parents would allow their children to participate. For a hypothetical study that would not benefit the child and posed a very small chance of a broken leg, 43% of the children and 24% of the parents endorsed the child's participation. Overall, respondents were equally willing to have the child help others by participating in nonbeneficial research or by participating in a charitable activity. CONCLUSIONS: Most respondents were willing to have the child participate in some nonbeneficial research, and most did not consider nonbeneficial pediatric research to be more problematic than charitable activities for children. These findings provide empirical data to support the acceptability of exposing children to some research risks for the benefit of others.
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