ArticlePloS one2021
Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey.
Article in PloS one, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 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
41 citing papers in PubMed, 2 syntheses or guidelines pooled it, 62 citations in OpenAlex.
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- Measuring the willingness to share personal health information: a systematic review.Frontiers in public health · 2023Pooled it
- Sociodemographic, Health, and Lifestyle-Related Characteristics Associated With the Commencement and Completion of a Web-Based Lifestyle Educational Program for People With Multiple Sclerosis: Randomized Controlled Trial.Journal of medical Internet research · 2024Trial
- Your DNA, your concerns: public attitudes toward donation of genomic data for research in four Latin American countries.Journal of community genetics · 2026Article
- Willingness to Share Internet Use Data for Research on Early Disease Detection: Cross-Sectional Survey.Journal of medical Internet research · 2026Article
- Implementing broad consent for research with routinely collected clinical data and residual biosamples in a cancer hospital: using mixed methods approach to evaluate consent rates and patients' perspectives.BMC medical ethics · 2026Article
- Views of the Swiss public towards gene editing.PloS one · 2026Article
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- Article
- 'Bern, get ready', BEready, a household-based cohort study for pandemic preparedness research in Switzerland: pilot study.BMJ open · 2025Article
- Research opportunities in precision oncology: perspectives on biospecimen and genomic data sharing from adults with cancer in Ireland.Irish journal of medical science · 2025Article
- Willingness of the Chinese public to participate in medical research during a pandemic: A cross-sectional study.Medicine · 2025Article
- Exploring the Italian Population's attitudes toward health data sharing for healthcare purpose and scientific research: a cross-sectional study.Journal of public health (Oxford, England) · 2025Article
- The Public Knowledge of Precision Medicine and Genomic Research: A Survey in the Aosta Valley.Journal of personalized medicine · 2025Article
- Health data sharing in Germany: individual preconditions, trust and motives.Frontiers in public health · 2025Article
- Strategies for Cost-Effectiveness in Sustainable Quality Healthcare Delivery in Emerging Economies: The Case of Healthcare Professionals Development in South Africa.Healthcare (Basel, Switzerland) · 2024Article
- Willingness of population health survey participants to provide personal health information and biological samples.BMC public health · 2024Article
- Stakeholders' perceptions of personal health data sharing: A scoping review.PLOS digital health · 2024Article
- Willingness to participate in a personalized health cohort - insights from the swiss health study pilot phase.BMC public health · 2024Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This paper reports survey findings on the Swiss public's willingness, attitudes, and concerns regarding personalized health research participation by providing health information and biological material. The survey reached a sample of 15,106 Swiss residents, from which we received 5,156 responses (34.1% response rate). The majority of respondents were aware of research using human biological samples (71.0%) and held a positive opinion towards this type of research (62.4%). Of all respondents, 53.6% indicated that they would be willing to participate in a personalized health research project. Willingness to participate was higher in younger, higher educated, non-religious respondents with a background in the health sector. Respondents were more willing to provide 'traditional' types of health data, such as health questionnaires, blood or biological samples, as opposed to social media or app-related data. All respondents valued the return of individual research results, including risk for diseases for which no treatment is available. Our findings highlight that alongside general positive attitudes towards personalized health research using data and samples, respondents have concerns about data privacy and re-use. Concerns included potential discrimination, confidentiality breaches, and misuse of data for commercial or marketing purposes. The findings of this large-scale survey can inform Swiss research institutions and assist policymakers with adjusting practices and developing policies to better meet the needs and preferences of the public. Efforts in this direction could focus on research initiatives engaging in transparent communication, education, and engagement activities, to increase public understanding and insight into data sharing activities, and ultimately strengthen personalized health research efforts.
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.