ArticleBiopreservation and biobanking2015
Demographic differences in willingness to provide broad and narrow consent for biobank research.
Article in Biopreservation and biobanking, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Video education about genetic privacy and patient perspectives about sharing prenatal genetic data: a randomized trial.American journal of obstetrics and gynecology · 2022Trial
- Biobanking and consent to future biospecimen use among adults enrolled in SWOG trials from 2000 to 2024.Blood cancer journal · 2025Article
- Broad consent in the emergency department: a cross sectional study.Archives of public health = Archives belges de sante publique · 2025Article
- Workplace genetic testing: which employees are likely to participate, what are their concerns with employer sponsorship, and which design features could reduce barriers and increase participation?Frontiers in genetics · 2024Article
- Inequities in Alliance Acute Leukemia Clinical Trial and Biobank Participation: Defining Targets for Intervention.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2022Article
- Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey.BMJ open · 2022Article
- Participant recall and understandings of information on biobanking and future genomic research: experiences from a multi-disease community-based health screening and biobank platform in rural South Africa.BMC medical ethics · 2022Article
- Stakeholder attitudes towards establishing a national genomics registry of inherited cancer predisposition: a qualitative study.Journal of community genetics · 2022Article
- Translation and validation of the greek version of a questionnaire measuring patient views on participation in clinical trials.BMC health services research · 2021Article
- Assessing consent for and response to health survey components in an era of falling response rates: National Health and Nutrition Examination Survey, 2011-2018.Survey research methods · 2021Article
- Attitudes of Costa Rican individuals towards donation of personal genetic data for research.Personalized medicine · 2021Article
- Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2020Article
- Serum exosomal-annexin A2 is associated with African-American triple-negative breast cancer and promotes angiogenesis.Breast cancer research : BCR · 2020Article
- Privacy Risks of Sharing Data from Environmental Health Studies.Environmental health perspectives · 2020Article
- Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey.PloS one · 2020Article
- Motivations for data sharing-views of research participants from four European countries: A DIRECT study.European journal of human genetics : EJHG · 2019Article
- Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers.Journal of empirical research on human research ethics : JERHRE · 2018Article
- The Public's Awareness of and Attitude Toward Research Biobanks - A Regional German Survey.Frontiers in genetics · 2018Article
- Factors influencing the willingness to participate in medical research: a nationwide survey in Taiwan.PeerJ · 2018Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThis study examined acceptability of two biobank consent models and evaluated the impact of beliefs about privacy and genetic safeguards on acceptance.
methodsU.S. adults surveyed online in English and Spanish were randomly assigned to one of two scenarios examining acceptance of broad consent (n=1528), or narrow consent (n=1533).
resultsOverall, willingness to provide broad (76%) and narrow (74%) consents were similar. African Americans were as likely as white non-Hispanics to accept narrow consent (72% vs. 77%, p=0.35) but significantly less likely to accept broad consent (69% vs. 81%, p=0.004). Education, insurance, and blood donation history were also related to acceptance. Adjusting for beliefs about privacy and policy protections (Genetic Information Nondiscrimination Act, GINA), the effects of the variables were reduced. Respondents who drew comfort from GINA were more likely to support both consent (both p<0.001); those who believed it is impossible to maintain privacy were less likely to find both broad (p=0.04) and narrow models acceptable (p=0.02).
conclusionsChoice of consent model matters when engaging diverse populations in biobank research. Beliefs underlying concerns about privacy and genetic protections should be considered when constructing biobank protocols.
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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.