ArticlePloS one2015
Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.
Article in PloS one, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 2 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
19 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review.Science and engineering ethics · 2022Pooled it
- The research participant perspective related to the conduct of genomic cohort studies: A systematic review of the quantitative literature.Translational behavioral medicine · 2018Pooled it
- Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey.BMJ open · 2022Article
- Patients' decision to contribute to a biobank in the light of the patient-recruiter relationship-a qualitative study of broad consent in a hospital setting.Journal of community genetics · 2021Article
- Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia.Human genetics · 2019Article
- Ethics as ritual: smoothing over moments of dislocation in biomedicine.Sociology of health & illness · 2019Article
- APPLaUD: access for patients and participants to individual level uninterpreted genomic data.Human genomics · 2018Review
- Beyond individualism: Is there a place for relational autonomy in clinical practice and research?Clinical ethics · 2017Article
- Healthcare professionals' and patients' perspectives on consent to clinical genetic testing: moving towards a more relational approach.BMC medical ethics · 2017Article
- Consent and engagement, security, and authentic living using wearable and mobile health technology.Nature biotechnology · 2017Article
- A qualitative study of participants' views on re-consent in a longitudinal biobank.BMC medical ethics · 2017Article
- iCONCUR: informed consent for clinical data and bio-sample use for research.Journal of the American Medical Informatics Association : JAMIA · 2017Article
- Online Education and e-Consent for GeneScreen, a Preventive Genomic Screening Study.Public health genomics · 2017Article
- Blockchain protocols in clinical trials: Transparency and traceability of consent.F1000Research · 2017Article
- Participant views on consent in cancer genetics research: preparing for the precision medicine era.Journal of community genetics · 2016Article
- Participation in Genetic Research: Amazon's Mechanical Turk Workforce in the United States and India.Public health genomics · 2016Article
- Participants' Role Expectations in Genetics Research and Re-consent: Revising the Theory and Methods of Mental Models Research Relating to Roles.Journal of health communication · 2016Article
- Consent Issues in Genetic Research: Views of Research Participants.Public health genomics · 2016Article
- Towards 'Engagement 2.0': Insights from a study of dynamic consent with biobank participants.Digital healthArticle
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.
Funding
Abstract
objectivesTo establish the views of research volunteers on the consent process; to explore their views on the consent process in different research scenarios; to inform debate on emerging models of consent for participation in research. DESIGN, SETTING AND
participants2,308 adult volunteers from the TwinsUK Registry (www.twinsuk.ac.uk) completed an online survey about their views on the consent process for use of their DNA and medical information in research. Their views on the re-consenting process in different scenarios were assessed.
resultsThe majority of volunteers preferred to be informed of the identity of the main researcher of a study in which they are participating, which is contrary to current practice. Over 80% were willing to complete the consent process online instead of face to face. On the whole, respondents did not view their DNA differently from their medical information with regard to the consent process. Research participants were more willing to give broad consent to cover future research if their DNA was to be used by the original researcher than by another researcher, even if the disease under investigation varied, in contrast to the traditional 'gold standard' whereby specific consent is required for all new research projects. DISCUSSION: In some scenarios, research participants reported that they would be comfortable with not signing a new consent form for future research uses of their data and DNA, and are comfortable with secure, online consent processes rather than traditional face-to-face consent processes. Our findings indicate that the perceived relationship between research participants and researchers plays an important role in shaping preferences regarding the consent process and suggest that this relationship is not captured by traditional consent processes. We argue that the development of new formats of consent should be informed by empirical research on volunteers' perceptions and preferences regarding the consent process.
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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.