ArticleCancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology2015
Communicating with biobank participants: preferences for receiving and providing updates to researchers.
Article in Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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
11 citing papers in PubMed, 17 citations in OpenAlex.
- Lessons Learned in Clinical Trial Recruitment: A Partnership Between a Genomic Research Study and the Discover Together Biobank.Biopreservation and biobanking · 2026Review
- Barriers and opportunities in biobank utilization: insights from a 3-year repeated cross-sectional survey of the Female Breast and Genital Disease with Microbiome Biobank Network in South Korea.Journal of Yeungnam medical science · 2025Article
- Pet owner perspectives, motivators and concerns about veterinary biobanking.Frontiers in veterinary science · 2024Article
- Using visual storytelling to share aggregate findings with families participating in clinical genomics research.Genetics in medicine open · 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
- Preferences for Updates on General Research Results: A Survey of Participants in Genomic Research from Two Institutions.Journal of personalized medicine · 2021Article
- Biobanks-A Platform for Scientific and Biomedical Research.Diagnostics (Basel, Switzerland) · 2020Review
- Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.PloS one · 2019Article
- Preferences for multigene panel testing for hereditary breast cancer risk among ethnically diverse BRCA-uninformative families.Journal of community genetics · 2018Article
- Allocation of Resources to Communication of Research Result Summaries.Journal of empirical research on human research ethics : JERHRE · 2016Article
- Repository of Human Blood Derivative Biospecimens in Biobank: Technical Implications.Middle East journal of digestive diseases · 2015Review
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 1 country.
Funding
Abstract
backgroundResearch biobanks collect biologic samples and health information. Previous work shows that biobank participants desire general study updates, but preferences about the method or frequency of these communications have not been explored. Thus, we surveyed participants in a long-standing research biobank.
methodsEligible participants were drawn from a study of patients with personal/family history suggestive of Cowden syndrome, a poorly recognized inherited cancer syndrome. Participants gave blood samples and access to medical records and received individual results but had no other study interactions. The biobank had 3,618 participants at sampling. Survey eligibility included age ≥18 years, enrollment within the biobank's first 5 years, normal PTEN analysis, and contiguous U.S. address. Multivariate logistic regression analyses identified predictors of participant interest in Internet-based versus offline methods and methods allowing participant-researcher interaction versus one-way communication. Independent variables were narrowed by independent Pearson correlations by cutoff P < 0.2, with P < 0.02 considered significant.
resultsSurveys were returned from 840 of 1,267 (66%) eligible subjects. Most (97%) wanted study updates, with 92% wanting updates at least once a year. Participants preferred paper (66%) or emailed (62%) newsletter methods, with 95% selecting one of these. Older, less-educated, and lower-income respondents strongly preferred offline approaches (P < 0.001). Most (93%) had no concerns about receiving updates and 97% were willing to provide health updates to researchers.
conclusionMost participants were comfortable receiving and providing updated information. Demographic factors predicted communication preferences. IMPACT: Researchers should make plans for ongoing communication early in study development and funders should support the necessary infrastructure for these efforts.
Indexed as
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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.