 |
|
Children's and Their Parents' Views on Facing Research Risks for the Benefit of Others
David Wendler, PhD;
Tammara Jenkins, MSN
Arch Pediatr Adolesc Med. 2008;162(1):9-14.
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.
Author Affiliations: Department of Bioethics, National Institutes of Health Clinical Center (Dr Wendler), and Pediatric Critical Care and Rehabilitation Research Program, National Center for Medical Rehabilitation Research, National Institute of Child Health and Human Development (Ms Jenkins), Bethesda, Maryland.
RELATED ARTICLE
Empirical Data and the Acceptability of Research Risk: A Commentary on the Charitable Participation Standard
William W. Reynolds and Robert M. Nelson
Arch Pediatr Adolesc Med. 2008;162(1):88-90.
EXTRACT
| FULL TEXT
THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES
Stroke Genetic Research and Adults With Impaired Decision-Making Capacity: A Survey of IRB and Investigator Practices
Chen et al.
Stroke 2008;39:2732-2735.
ABSTRACT
| FULL TEXT
Empirical Data and the Acceptability of Research Risk: A Commentary on the Charitable Participation Standard
Reynolds and Nelson
Arch Pediatr Adolesc Med 2008;162:88-90.
FULL TEXT
|
