Trial reportAJOB empirical bioethics
Parents' attitudes toward consent and data sharing in biobanks: A multisite experimental survey.
Trial report in AJOB empirical bioethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
What it found
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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
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic literature review of the 'commercialisation effect' on public attitudes towards biobank and genomic data repositories.Public understanding of science (Bristol, England) · 2024Pooled it
- Patient Perspectives and Demographic Factors Influencing Non-Participation in a Large Genomics Study.Mayo Clinic proceedings. Innovations, quality & outcomes · 2026Article
- Capturing attitudes towards research and data sharing in down syndrome (CARDS-DS): Piloting a novel parent-report measure.Social sciences & humanities open · 2026Article
- Article
- 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
- Health data sharing attitudes towards primary and secondary use of data: a systematic review.EClinicalMedicine · 2024Article
- Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.AJOB empirical bioethics · 2024Article
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- Public's awareness of biobanks and willingness to participate in biobanking: the moderating role of social value orientation.Journal of community genetics · 2023Article
- Parent attitudes towards data sharing in developmental science.Open research Europe · 2023Article
- Pediatric biorepository participation during the COVID-19 pandemic: predictors of enrollment and biospecimen donation.BMC pediatrics · 2022Article
- Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria.PloS one · 2022Article
- Paediatric biobanking for health: The ethical, legal, and societal landscape.Frontiers in public health · 2022Review
- An Integrated, Scalable, Electronic Video Consent Process to Power Precision Health Research: Large, Population-Based, Cohort Implementation and Scalability Study.Journal of medical Internet research · 2021Article
- Privacy practices using genetic data from cell-free DNA aneuploidy screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2021Article
- The Role of Electronic Health Records in Advancing Genomic Medicine.Annual review of genomics and human genetics · 2021Review
- Attitudes of Costa Rican individuals towards donation of personal genetic data for research.Personalized medicine · 2021Article
- Considerations for an integrated population health databank in Africa: lessons from global best practices.Wellcome open research · 2021Article
- Integration of Biobanks in National eHealth Ecosystems Facilitating Long-Term Longitudinal Clinical-Omics Studies and Citizens' Engagement in Research Through eHealthBioR.Frontiers in digital health · 2021Article
- Perceived Risks, Benefits, and Interest in Participating in Environmental Health Studies That Share Personal Exposure Data: A U.S. Survey of Prospective Participants.Journal of empirical research on human research ethics : JERHRE · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
24 authors.
Funding
Abstract
backgroundThe factors influencing parents' willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents' willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness.
methodsThis large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data-sharing scenarios.
resultsIn total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50-59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one's child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity.
conclusionsFifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.
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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.