ArticlePediatrics2012
Views of adolescents and parents on pediatric research without the potential for clinical benefit.
Article in Pediatrics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it, 45 citations in OpenAlex.
- Motivations of children and their parents to participate in drug research: a systematic review.European journal of pediatrics · 2016Pooled it
- Article
- Paediatric systemic inflammatory response syndrome (SIRS) and the development of patient-specific therapy: ethical perspectives through experts' opinions.Frontiers in public health · 2024Article
- EOLinPLACE: an international research project to reform the way dying places are classified and understood.Palliative care and social practice · 2024Article
- Caregiver Perspectives on Patient Participation in Biological Pediatric Cancer Research.Children (Basel, Switzerland) · 2022Article
- Facilitators and barriers for parental consent to pediatric emergency research.Pediatric research · 2022Article
- Acceptable Risks in Pediatric Research: Views of the US Public.Pediatrics · 2022Article
- "It Can Be Hard But It's Not Bad": Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research.Journal of palliative medicine · 2021Article
- Perceptions of participating in family-centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study.Pediatric blood & cancer · 2019Article
- Conducting reproductive research during a new childhood cancer diagnosis: ethical considerations and impact on participants.Journal of assisted reproduction and genetics · 2019Article
- Researching the Experiences of Children with Cancer: Considerations for Practice.Children (Basel, Switzerland) · 2019Review
- Adolescents' and Parents' Attitudes Toward Adolescent Clinical Trial Participation: Changes Over One Year.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Development and Preliminary Testing of the Perceived Benefit and Burden Scales for Cancer Clinical Trial Participation.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents: A Review.JAMA pediatrics · 2016Review
- Maternal participant experience in a South African birth cohort study enrolling healthy pregnant women and their infants.Philosophy, ethics, and humanities in medicine : PEHM · 2016Article
- Research involving pediatric stem cell donors: A way forward.Clinical trials (London, England) · 2016Article
- Parental and staff perspectives of NICU research procedures.BMC pediatrics · 2016Article
- Altruistic reasoning in adolescent-parent dyads considering participation in a hypothetical sexual health clinical trial for adolescents.Research ethics · 2016Article
- Research as a Standard of Care in the PICU.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2016Review
- Adolescent Research Participants' Descriptions of Medical Research.AJOB empirical bioethics · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
objectiveCritics 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.
methodsInterviews 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.
resultsInterviews 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.
conclusionsThe 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.