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Published on: June 6, 2020
Children's and their parents' views on facing research risks for the benefit of others
David Wendler1, Tammara Jenkins
1Department of Clinical Bioethics, National Institutes of Health Clinical Center, Bldg 10, Room 1C118, Bethesda, MD 20892, USA. dwendler@nih.gov
Insights
Most children and parents are willing to enroll children in low-risk pediatric research that benefits others, viewing it similarly to charitable activities. This supports the ethical acceptability of some nonbeneficial research participation for children.
Area of Science:
- Pediatric Ethics
- Clinical Research Participation
- Child Psychology
Background:
- Ethical considerations are paramount in pediatric research, particularly for studies offering no direct clinical benefit to the child.
- Assessing parental and child attitudes towards research participation is crucial for informed consent and ethical oversight.
Purpose of the Study:
- To evaluate children's and parents' perspectives on enrolling children in minimal-risk pediatric research that does not provide direct clinical benefit.
- To compare attitudes towards nonbeneficial research participation with engagement in charitable activities.
Main Methods:
- Separate in-person interviews were conducted with 81 children (aged 7-14) and their parents.
- Participants discussed willingness to enroll in hypothetical studies with varying risks (headache, minor fracture risk) and no direct benefit.
- Attitudes towards nonbeneficial research were compared to participation in charitable activities with similar risk levels.
Main Results:
- A majority of children (71%) and parents (72%) were willing to participate in a hypothetical study posing a headache risk.
- Willingness decreased with higher perceived risk; 43% of children and 24% of parents agreed to participation with a small chance of a broken leg.
- Respondents showed equal willingness for children to participate in nonbeneficial research or charitable activities to help others.
Conclusions:
- Most children and parents find some nonbeneficial pediatric research acceptable, comparable to charitable endeavors.
- Findings suggest that pediatric participation in research for the benefit of others, even without direct clinical benefit, is ethically permissible under certain risk conditions.
- Empirical data supports the acceptability of exposing children to minimal research risks for altruistic purposes.
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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