Trial reportPediatrics2014
Pediatric data sharing in genomic research: attitudes and preferences of parents.
Trial report in Pediatrics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 3 of them syntheses 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
28 citing papers in PubMed, 3 syntheses or guidelines pooled it, 45 citations in OpenAlex.
- Pooled it
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Maternal perspectives on sharing newborn genomic data.European journal of human genetics : EJHG · 2026Article
- Capturing attitudes towards research and data sharing in down syndrome (CARDS-DS): Piloting a novel parent-report measure.Social sciences & humanities open · 2026Article
- What Motivates Parents of Young Children With Down Syndrome to Participate in Research: A Focus Group Analysis.Journal of applied research in intellectual disabilities : JARID · 2026Article
- Data Sharing, Biopsies and Patient Confidentiality in a Precision Medicine Trial for Childhood Cancer: A Mixed Method Study of Parents, Oncologists, and Scientists' Perspectives.Journal of personalized medicine · 2025Article
- Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.AJOB empirical bioethics · 2024Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Parent attitudes towards data sharing in developmental science.Open research Europe · 2023Article
- Sharing and Safeguarding Pediatric Data.Frontiers in genetics · 2022Article
- A policy Delphi study to validate the key implications of data sharing (KIDS) framework for pediatric genomics in Canada.BMC medical ethics · 2021Article
- Rare disease patient matchmaking: development and outcomes of an internet case-finding strategy in the Undiagnosed Diseases Network.Orphanet journal of rare diseases · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Article
- Mendelian Gene Discovery: Fast and Furious with No End in Sight.American journal of human genetics · 2019Article
- The Pediatric Cell Atlas: Defining the Growth Phase of Human Development at Single-Cell Resolution.Developmental cell · 2019Review
- Sexual and gender minority youth's perspectives on sharing de-identified data in sexual health and HIV prevention research.Sexuality research & social policy : journal of NSRC : SR & SP · 2019Article
- Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences.BMC medical informatics and decision making · 2018Article
- Consent for Genetic Biobanking in a Diverse Multisite CKD Cohort.Kidney international reports · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 4 institutions in 3 countries.
Funding
Abstract
objectiveIn the United States, data from federally funded genomics studies are stored in national databases, which may be accessible to anyone online (public release) or only to qualified researchers (restricted release). The availability of such data exposes participants to privacy risk and limits the ability to withdraw from research. This exposure is especially challenging for pediatric participants, who are enrolled in studies with parental permission. The current study examines genomic research participants' attitudes to explore differences in data sharing (DS) preferences between parents of pediatric patients and adult patients.
methodsA total of 113 parents of pediatric patients and 196 adult participants from 6 genomics studies were randomly assigned to 3 experimental consent forms. Participants were invited to a follow-up structured interview exploring DS preferences, study understanding, and attitudes. Descriptive analyses and regression models were built on responses.
resultsMost parents (73.5%) and adult participants (90.3%) ultimately consented to broad public release. However, parents were significantly more restrictive in their data release decisions, not because of understanding or perceived benefits of participation but rather autonomy and control. Parents want to be more involved in the decision about DS and are significantly more concerned than adult participants about unknown future risks.
conclusionsParents have the same altruistic motivations and grasp of genomics studies as adult participants. However, they are more concerned about future risks to their child, which probably motivates them to choose more restrictive DS options, but only when such options are made available.
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.