My Parents Decide If I Can. I Decide if I Want to.” Children's Views on Participation in Medical Research
Bibliographic Data
| ID | 12807359 |
|---|---|
| Authors | Ulrica Swartling (Linköping University, corresponding author), Margareta Hansson (0000-0002-0168-9968, Uppsala University), J Ludvigsson (0000-0003-1695-5234, Linköping University), Anders Nordgren (0000-0003-0636-780X, Linköping University) |
| Year | 2011 |
| Volume | 6 |
| Issue | 4 |
| Pages | 68-75 |
| Publication date | 2011-12-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Journal of Empirical Research on Human Research Ethics (JOURNAL) |
| Journal identifiers | ISSN: 1556-2646 • E-ISSN: 1556-2654 |
| Publisher | SAGE Publishing (PUBLISHER • US) |
| DOI | 10.1525/jer.2011.6.4.68 |
| PMID | 22228061 |
| OpenAlex | W2054149367 |
| Language | EN |
| Citations received | 5 |
| References cited | 13 |
The participation of children in medical research raises many ethical issues, in particular regarding assent. However, little is known about children's own views on participation. This study presents results from interviews with children 10-12 years old with and without experience in a large-scale longitudinal screening study. We identified five themes: (1) knowledge about research, (2) a sense of altruism, (3) shared decision-making and right to dissent, (4) notions of integrity, privacy, and access, and (5) understanding of disease risk and personal responsibilities. We conclude that the children feel positive towards medical research, and want to take an active part in decisions and have their integrity respected. However, the study also indicates that children who had participated in longitudinal screening had a limited understanding, suggesting the vital importance of providing information appropriate to their age and maturity. This information should be provided out of respect for the children as persons, but also to promote their willingness to continue participating in longitudinal studies
Altruism (biology · Developmental psychology · Dissent · Longitudinal study · Maturity (psychological · Political science · Public relations · Scale (ratio · Ethics and Legal Issues in Pediatric Healthcare · Ethics in Clinical Research · Law · Medicine · Patient-Provider Communication in Healthcare · Psychology · Social Psychology
Children’s Views on Long-Term Screening for Type 1 Diabetes
Readability and Visuals in Medical Research Information Forms for Children and Adolescents
Experiences of Caregivers and At-Risk Children Enrolled in a Prospective Pregnancy-Birth Cohort Study into the Causes of Type 1 Diabetes
Reconsidering assent for randomised control trials in education
Heuristic decision-making about research participation in children with cystic fibrosis
| Citations per year | 0.42 |
|---|---|
| Citation span | 2014 - 2023 (10) |
| Highly cited | No |