ArticleJournal of community genetics2014
Public attitudes regarding the use of electronic health information and residual clinical tissues for research.
Article in Journal of community genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 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
23 citing papers in PubMed, 3 syntheses or guidelines 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
- Ethical issues in biomedical research using electronic health records: a systematic review.Medicine, health care, and philosophy · 2021Pooled it
- "Giving something back": A systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland.Wellcome open research · 2018Pooled it
- Prenatal Education of Parents About Newborn Screening and Residual Dried Blood Spots: A Randomized Clinical Trial.JAMA pediatrics · 2016Trial
- Artificial Intelligence in Ocular Oncology: Differentiating Choroidal Melanocytic Lesions.Ophthalmology science · 2026Article
- Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis.NPJ digital medicine · 2025Article
- Citizen Views on an Opt-Out Approach to National Electronic Health Records in Germany: A Small-Scale Qualitative Study.International journal of public health · 2024Article
- Artificial intelligence-based strategies to identify patient populations and advance analysis in age-related macular degeneration clinical trials.Experimental eye research · 2022Article
- Jordanian views regarding sharing of medical data for research: A cross-sectional study during COVID-19 pandemic.PloS one · 2022Observational
- The Ethics of Mandatory Retention of Clinical Biospecimens for Research.Journal of general internal medicine · 2021Article
- Seeing Beyond the Margins: Challenges to Informed Inclusion of Vulnerable Populations in Research.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.Journal of empirical research on human research ethics : JERHRE · 2017Article
- A survey of patient perspectives on the research use of health information and biospecimens.BMC medical ethics · 2016Article
- Deliberative Discussion Focus Groups.Qualitative health research · 2016Article
- Awareness of risks of biobank research may affect public attitudes toward consent.Journal of community genetics · 2015Article
- Public trust in health information sharing: implications for biobanking and electronic health record systems.Journal of personalized medicine · 2015Article
- Broad Consent for Research With Biological Samples: Workshop Conclusions.The American journal of bioethics : AJOB · 2015Article
- Article
- Caregiver Perspectives on Informed Consent for a Pediatric Learning Healthcare System Model of Care.AJOB empirical bioethicsArticle
- Mining the Data: Exploring Rural Patients' Attitudes about the Use of Their Personal Information in Research.AJOB empirical bioethicsArticle
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
No grant is acknowledged in the PubMed record.
Abstract
Use of electronic medical records (EMR) and residual clinical biospecimens have become important for the conduct of biomedical research. Currently, human subjects' protection regulations permit much of this research to be conducted without individual informed consent, posing a risk to biomedical research from public objection. We sought to understand public attitudes regarding access to EMRs and residual clinical biospecimens. This article reports the results of 12 focus groups with 131 participants conducted in Utah, Washington, Arizona, and Minnesota. Results indicate strong support for biomedical and genetic research in general and clear support for improved patient education regarding research access to individual data and biospecimens. Our participants were supportive of an opt-out approach to patient decision-making regarding research access to clinical data and biospecimens for research in general.
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.