ArticleGenetics in medicine : official journal of the American College of Medical Genetics2018
Broad consent for health care-embedded biobanking: understanding and reasons to donate in a large patient sample.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers.
What it found
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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.
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Who cites it
35 citing papers in PubMed, 78 citations in OpenAlex.
- Patient views on research use of clinical data without consent: Legal, but also acceptable?European journal of human genetics : EJHG · 2019Trial
- Feasibility, comprehension and applicability of broad consent in the emergency department: an exploratory mixed-methods study.Journal of medical ethics · 2026Article
- A Data-Centric Approach for Health Care and Research in a Health Knowledge Management Platform: Implementation and Requirement-Based Evaluation Study.JMIR medical informatics · 2026Article
- Full-scale indexing and semantic annotation of CT imaging: boosting FAIRness.BMC medical informatics and decision making · 2026Article
- Rethinking broad consent in the age of genomic AI: the Hungarian case.Frontiers in medicine · 2026Article
- Developing a Data Trust Model (Not Only) for Sleep Research: Conceptual Study and Quantitative Survey.JMIR human factors · 2025Article
- Critical consideration towards broad consent by patient experts: results of a semi-structured interview study on the secondary use of medical data.BMC medical ethics · 2025Article
- The research relationship: participant perspectives on consent in biobanking.BMC medical ethics · 2025Article
- Broad consent in the emergency department: a cross sectional study.Archives of public health = Archives belges de sante publique · 2025Article
- Information Mode-Dependent Success Rates of Obtaining German Medical Informatics Initiative-Compliant Broad Consent in the Emergency Department: Single-Center Prospective Observational Study.JMIR medical informatics · 2024Observational
- Public attitudes towards personal health data sharing in long-term epidemiological research: a Citizen Science approach in the KORA study.BMC public health · 2024Article
- Ethical, Legal, and Practical Concerns Surrounding the Implemention of New Forms of Consent for Health Data Research: Qualitative Interview Study.Journal of medical Internet research · 2024Article
- How to Elucidate Consent-Free Research Use of Medical Data: A Case for "Health Data Literacy".JMIR medical informatics · 2024Article
- Legal aspects of privacy-enhancing technologies in genome-wide association studies and their impact on performance and feasibility.Genome biology · 2024Review
- [Nationally standardized broad consent in practice: initial experiences, current developments, and critical assessment].Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz · 2024Article
- Population-Based Biobanking.Genes · 2024Review
- Genetic tests as the strongest motivator of cooperation between participants and biobanks-Findings from cross-sectional study.Frontiers in genetics · 2024Article
- Health Research with Data in a Time of Privacy: Which Information do Patients Want?Journal of empirical research on human research ethics : JERHRE · 2023Article
- Sustained agreement rates in the longitudinal assessment of lupus patients to a Broad Consent for personal data and specimen usage in the RHINEVIT biobank.Frontiers in medicine · 2023Article
- Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda.Journal of empirical research on human research ethics : JERHRE · 2022Article
Corrections and comments
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Authors and funding
6 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
PurposeTo facilitate ethically acceptable and practically successful health care-embedded biobanking, the attitudes and understanding of patients and their motivation to participate need to be explored.MethodsA questionnaire study was conducted among 760 outpatients of a northern German university hospital to assess their awareness of, and motivation for giving broad consent to health care-embedded biobanking, also addressing the issue of feedback on individual-level research findings.ResultsThe overall willingness to give broad consent was high (86.9%) in our study, even though the subjective and objective understanding of patients was found to be only modest. Most participants who consented did so for prosocial reasons (altruism, solidarity, reciprocity, gratitude), whereas self-interest or worries about disadvantages played only a marginal role. Better objective understanding was associated with both a greater demand for feedback on individual research findings and a higher willingness to consent. Intermittent modification of the information material provided by the hospital led to significantly improved objective understanding.ConclusionPatient willingness to give broad consent to health care-embedded biobanking is high, with prosocial reasons driving decision making more than factual knowledge and approval or disapproval of specific consent elements. Future efforts to improve the information material used in health care-embedded biobanking should therefore emphasize prosocial reasons to consent.
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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.